There is no doubt that the road toward feeding Ellie is one that has been bumpy. I used to joke with other moms about Dorie from Nemo (just keep swimming, just keep swimming!). Then I realized I had transitioned into more of a foot dragging trudge than a swim. Lately it has included a few breath taking sucker punches.
Ellie recently had her first post-GAPS seizure, and has been having some neurological complications ever since. Most of these involve her eyes, and they certainly may amount to nothing. But we learned that she appears to have been having regular seizures prior to going GAPS. It was an initial sucker punch, but one that I came to terms with quickly. It is not hard to make the leap from what we are already dealing with to neurology. There are lots of medical connections between the intestine and the brain. And the seizures are obviously controlled.
Sucker punch number two came shortly thereafter.
We recently took Ellie back for a second O.T. evaluation regarding feeding therapy. One year ago she was not considered far behind. Now, she has no problem standing out as that bottle fed almost-preschooler. We received good tips on body brushing and pressure points to desensitize her hyper-sensitive self. The body brushing was not received well by her, and I believe it is because of her head to toe eczema as a result of a recent trial. I continued with the pressure points and massage instead of brushing, and it has been working! One improvement is teeth brushing. She has been asking me to brush her teeth regularly when she has never allowed me near her mouth much before. The result was a new discovery. Wait for it.....
Ellie has a lip tie.
What? You were hoping for something a little more dramatic? Doesn't seem like much of a big deal? WELL....*ahem* let me TELL YOU THE DEAL.
Ellie has had a panel of doctors since she was 10 weeks old attempting to understand and explain her feeding difficulties. She has been scoped, poked, prodded, and pricked. She has had two complete OT evaluations for feeding issues, and been continually re-evaluated for an EGID. She had chronic respiratory issues, coughing, reflux, and unexplainable 'asthma but not really asthma' symptoms.
Noone. Not.one.person. has caught the lip tie, and the therapists never even looked in her mouth.
Now, we are not talking a small lip tie. We are talking a cant-pull-her-lip-away-from-her-teeth-and-why-does-she-have-such-a-gap-in-her-teeth sort of lip tie. And yes, I know 'well, that can be clipped easily and corrected with surgery.' But here is the deal.
1. Our insurance does not cover O.T. We pay over $600 a month out of pocket and get no O.T. benefits until after our extremely high individual deductible is met for Ellie. (as in thousands of dollars deductible)
2. Our insurance will cover minimal costs for a surgery to correct this.
3. The longer it goes, the more trouble she will have correcting speech and feeding habits. I listened to the 'oh that will just go away and is nothing' doctor suggestions for my 6 year old's tongue tie. Dozens of complications, one frenulectomy surgery, and permanent speech problems later, I wish I had never listened.
4. Did you know that in the first few months of life a tongue tie or LIP TIE can cause: colic, reflux, GERD, feeding refusal, constant feeding, distended belly from air swallowing, just to list a few.
Uh. Yeah. That number 4 would be Ellie. And would be classic infant FPIES symptoms.
*deeeeeeeeeeep breath*
Once I was able to inhale deeply and step away from that sucker punch, I was able to look at it a little more objectively. Do I think that the root of all Ellie's problems and what led to her FPIES diagnosis was a lip tie? NO. What I *do* think is that it was another factor that made things that much more complicated, and are certainly complicating things now. I did a quick (very small) poll and found four other lip tie or tongue tie's in the FPIES community. Isn't that interesting? Lip and tongue tie's are considered mid-line markers, if you would like something to visit doctor google about.
So we will be tackling the lip tie next, which now so easily explains why the girl can not get her lip onto a spoon no matter how hard she tries. And though it may not explain all of her beginning journey, it certainly shows how each individual babe has an incredible amount of factors that add to their overall health. From now on when I hear of that mom having trouble breastfeeding I will most certainly remember to say - hey! have you checked for a tongue or lip tie? they say they are nothing, but our experience says otherwise. it could be an easy fix now that saves you and your babe in the long run.
And how will we pay for this surgery? Beats me.
I have picked up my feet and moved from trudge to a steady forward motion that sounds more like a bumpity, bump, bump. This is partially in accepting that there will be sucker punches coming our way and I need to be prepared to roller-coaster right over them. I am not sure I will ever get to the point of waving my hands in the year and screaming in delight as our car heads down for the next challenge, but at least now I am in a place where I can remember we will head back up the other side.
Showing posts with label GI. Show all posts
Showing posts with label GI. Show all posts
Friday, March 9, 2012
Friday, February 24, 2012
Well, Shoot.
Today as I watched Ellie suck on a dried mango I was launched into a surreal moment. I was breaking the rules by letting her have it, but truly I had no idea she would actually put it all the way in her mouth and try to eat it. We have headed back to Occupational Therapy, and are taking a look at her major feeding delays and sensory issues. She has begun to finally show signs of wanting to put food in her mouth and learn how to chew. Today she surprised me by putting a dried mango quite into her mouth and following it up with a 'dat yummy good'. As I looked at the mango smears on her face and revved up for the coming confrontation of having to take it away, I had a flash back to what that would have meant one year ago.
A year ago it would have meant panic. It would have meant waiting and watching the clock and wondering if there would be vomit, or skin blistering diarrhea, or hives, or fluctuating blood pressure, or.....? Today it meant 'oh crap, how much fungus is that feeding', and 'she is going to be crushed that I have to take that away'. And she was.
She sobbed as I told her that was enough because it would hurt her belly, and screamed 'mine' repeatedly at the top of her lungs. She let me hold her as she yelled in frustration to the point where I was certain the neighbors would call the police. And then we moved on.
There will be consequences. Regardless of what symptoms we may actually see, those minor slip ups are not minor at all when dealing with the extremes of Ellie's gut health. But in one year's time she has had enough healing that the day ended different. I am not gearing up for a long night in the over-sized green recliner holding a baby crying in pain, and cleaning up continuous vomit. And for this I am thankful.
A few steps backwards due to a dried mango certainly stinks. But this time I have the opportunity to see evidence of healing, and be happy she is showing progress with self-feeding. Works for me. Makes all of that broth making a little easier.
A year ago it would have meant panic. It would have meant waiting and watching the clock and wondering if there would be vomit, or skin blistering diarrhea, or hives, or fluctuating blood pressure, or.....? Today it meant 'oh crap, how much fungus is that feeding', and 'she is going to be crushed that I have to take that away'. And she was.
She sobbed as I told her that was enough because it would hurt her belly, and screamed 'mine' repeatedly at the top of her lungs. She let me hold her as she yelled in frustration to the point where I was certain the neighbors would call the police. And then we moved on.
There will be consequences. Regardless of what symptoms we may actually see, those minor slip ups are not minor at all when dealing with the extremes of Ellie's gut health. But in one year's time she has had enough healing that the day ended different. I am not gearing up for a long night in the over-sized green recliner holding a baby crying in pain, and cleaning up continuous vomit. And for this I am thankful.
A few steps backwards due to a dried mango certainly stinks. But this time I have the opportunity to see evidence of healing, and be happy she is showing progress with self-feeding. Works for me. Makes all of that broth making a little easier.
Thursday, July 7, 2011
The New GI
We had the long awaited (and well stressed about) appointment with the potentially new Pediatric GI today. In order to miss rush hour traffic we were up before dawn, and loaded in the car as a family. I was pleased to have found an appointment with a leading doctor from Oakland's Children's Hospital who also held an MD in Nutrition. An MD in GI and an MD in Nutrition - how could we possibly go wrong there?? Well, ...we most likely have a doctor to keep, but not the amazing nutrition based focus I had hoped for.
Some of the highlights:
- She did not have immediate access to Ellie's entire medical history, so she only saw our brief notes and those from the nurse. She walked in and said 'what is going on?' and I said 'FPIES'. She said 'I suspected.' (To which I laughed and said well that is progress!) To which she then said 'well she is too young for EE', to which I thought 'CRAP. not as much progress as I thought.'
- She said that meat has almost everything you need so Ellie can be fine like this for a very long time, if needed. (It was just nice to hear a doctor say that outloud)
- She asked if she was on a multi-vitamin, to which I said no because we have not been able to avoid corn, to which she said 'well, yes I would imagine not'. (Another nice thing to hear a doctor of her 'level' say)
- She said that the only vitamin to be concerned of at this point was vitamin C, and suggested I do a home skin test of foods high in vitamin C before feeding it to her. (A doctor acknowledging skin test! woot!)
- Ellie continues to grow and gain weight, and is now happily over 30 pounds! (*big mama grin*)
- I said my only real concern was the continued distended belly and so she offered an xray to see what it showed. (I appreciated the proactive approach)
What else...
- She irritated the crap out of me by saying 'we just don't know' about 50 times as an answer to most of my questions.
- She had the nerve to say 'she WILL get better at some point' but not comment on what I am currently feeding her, her history of illness, or know anything about GAPS. (I think this was the same old 'they grow out of it' version)
- When I informed her that Ellie's allergist wanted her off the formula due to the APT corn reaction, she asked if there was corn in the formula (the MD in Nutrition didnt know *all* formulas have corn?). And when I said the previous GI and allergist were in disagreement on whether or not the corn in the hypoallergenic formula could even cause a reaction, she responded with 'right.'. (is that another right, we don't know? right, you can react? right, we always disagree?....?)
- When I asked about missing nutrients she said 'I can send you to a dietician at the hospital for more information on that'. Whoa. I certainly thought that Nutrition MD counted for something..no?
- I made it clear that we fed Ellie grass-fed, organic, corn and soy free meat several times, and then directly asked her thoughts on the matter. I told her I could not find medical evidence of the need but was doing it to be cautious. Did she think it was necessary? The response - 'Well, I would try and see how she responds.' (is that acknowledgement that yes the corn and soy is present in the meat, or is that another answer of we just don't know?)
- She asked if she had been scoped. I gave her the list and the information on the dissacharide test, to which she instantly responded 'well that could be error.' I think my transparancy showed how irritated I was to that response. She then said, 'well, the sample was either handled incorrectly, or her intestines are just that completely damaged. No one is born that way. That is too severe.' (THIS was a very interesting thing to say regarding nutrition and genetics. I firmly believe the test was accurate, and the corn formula played a leading role. But did not choose to discuss further.)
- and oh yeah, she asked why all of the Sacramento area ped. GI patients were flocking to their office in Palo Alto. And when I decided to start telling her she cut me off to respond 'yeah, I know (insert the crappy GI we ditched here)'. I have no idea if that was her way of confirming, or if she was saying 'back off my buddy', but it was more politics in medicine. Ugh.
And that is about all I can remember. I have her email, and am waiting on the xray results. I am headed back to my GAPS book to see what it says about vitamin C, and we keep plugging forward. At least we have a GI on board in the event of an emergency who is experienced and knowledgeable of FPIES.
Some of the highlights:
- She did not have immediate access to Ellie's entire medical history, so she only saw our brief notes and those from the nurse. She walked in and said 'what is going on?' and I said 'FPIES'. She said 'I suspected.' (To which I laughed and said well that is progress!) To which she then said 'well she is too young for EE', to which I thought 'CRAP. not as much progress as I thought.'
- She said that meat has almost everything you need so Ellie can be fine like this for a very long time, if needed. (It was just nice to hear a doctor say that outloud)
- She asked if she was on a multi-vitamin, to which I said no because we have not been able to avoid corn, to which she said 'well, yes I would imagine not'. (Another nice thing to hear a doctor of her 'level' say)
- She said that the only vitamin to be concerned of at this point was vitamin C, and suggested I do a home skin test of foods high in vitamin C before feeding it to her. (A doctor acknowledging skin test! woot!)
- Ellie continues to grow and gain weight, and is now happily over 30 pounds! (*big mama grin*)
- I said my only real concern was the continued distended belly and so she offered an xray to see what it showed. (I appreciated the proactive approach)
What else...
- She irritated the crap out of me by saying 'we just don't know' about 50 times as an answer to most of my questions.
- She had the nerve to say 'she WILL get better at some point' but not comment on what I am currently feeding her, her history of illness, or know anything about GAPS. (I think this was the same old 'they grow out of it' version)
- When I informed her that Ellie's allergist wanted her off the formula due to the APT corn reaction, she asked if there was corn in the formula (the MD in Nutrition didnt know *all* formulas have corn?). And when I said the previous GI and allergist were in disagreement on whether or not the corn in the hypoallergenic formula could even cause a reaction, she responded with 'right.'. (is that another right, we don't know? right, you can react? right, we always disagree?....?)
- When I asked about missing nutrients she said 'I can send you to a dietician at the hospital for more information on that'. Whoa. I certainly thought that Nutrition MD counted for something..no?
- I made it clear that we fed Ellie grass-fed, organic, corn and soy free meat several times, and then directly asked her thoughts on the matter. I told her I could not find medical evidence of the need but was doing it to be cautious. Did she think it was necessary? The response - 'Well, I would try and see how she responds.' (is that acknowledgement that yes the corn and soy is present in the meat, or is that another answer of we just don't know?)
- She asked if she had been scoped. I gave her the list and the information on the dissacharide test, to which she instantly responded 'well that could be error.' I think my transparancy showed how irritated I was to that response. She then said, 'well, the sample was either handled incorrectly, or her intestines are just that completely damaged. No one is born that way. That is too severe.' (THIS was a very interesting thing to say regarding nutrition and genetics. I firmly believe the test was accurate, and the corn formula played a leading role. But did not choose to discuss further.)
- and oh yeah, she asked why all of the Sacramento area ped. GI patients were flocking to their office in Palo Alto. And when I decided to start telling her she cut me off to respond 'yeah, I know (insert the crappy GI we ditched here)'. I have no idea if that was her way of confirming, or if she was saying 'back off my buddy', but it was more politics in medicine. Ugh.
And that is about all I can remember. I have her email, and am waiting on the xray results. I am headed back to my GAPS book to see what it says about vitamin C, and we keep plugging forward. At least we have a GI on board in the event of an emergency who is experienced and knowledgeable of FPIES.
Monday, May 16, 2011
Bloodwork
One positive thing came out of the $30 co-pay to the GI we won't be keeping, and that is the blood work. We have not had an entire round of blood work done on Ellie for several months, and now that we have completely started GAPS with her, I wanted to see what her vitamin levels looked like.
The comical part of this is that I asked for the blood tests almost immediately at the appointment, including some specific vitamins that the doctor said he doesn't worry about as a GI doctor. He said something about how GI doctors only worry about fat soluble vitamins or something goofy, to which I told him I wanted them all run. He agreed politely, which I appreciated.
The appointment progressed and once he discovered that we had taken her off of the amino acid based formula and put her on bone broth soup, he was very puzzled. He asked questions like 'where is she getting her protein from?' and 'how many calories would that be?' He did not seem to care where I got my information from, but he was not fully invested in our appointment from the beginning.
At one point he was looking rather concerned about the answers I was giving him, and told me that he needed to consult with the nutritionist. He left the room, and we waited some more. Now the nutritionist in this office is fantastic. He is not completely on board with what we are doing, and is not familiar with GAPS, but he is supportive in general. All of this to say, I was not concerned. The doc returned to say that it was not possible to fully track calories in broth, so he would like to offer a round of bloodwork to check Ellie's levels. HAHA! I almost laughed outloud. That would be GREAT, I told him.
After the appointment we headed off for the lab draw and waited a week or so for the results.
And how did they turn out, you are wondering? Wonderful! In fact, her vitamin A level was elevated, meaning she may be getting too much. And all of her levels were as good as they were on the elemental diet, and some even better.
This was SO exciting for me! Even though there are decades of experience and research that have gone into GAPS and SCD, it is not been readily accepted by mainstream MD's. I could not help but doubt that her bloodwork would come back complete. But it did! Really? ALL nutrients provided on bone broth, meat, and zucchini? Amazing! That was more proof than I could have ever asked for.
On the flip side, I sort of wanted to go take the paper proof and rub it in the doctors face. I had to ask forgiveness for that.
The comical part of this is that I asked for the blood tests almost immediately at the appointment, including some specific vitamins that the doctor said he doesn't worry about as a GI doctor. He said something about how GI doctors only worry about fat soluble vitamins or something goofy, to which I told him I wanted them all run. He agreed politely, which I appreciated.
The appointment progressed and once he discovered that we had taken her off of the amino acid based formula and put her on bone broth soup, he was very puzzled. He asked questions like 'where is she getting her protein from?' and 'how many calories would that be?' He did not seem to care where I got my information from, but he was not fully invested in our appointment from the beginning.
At one point he was looking rather concerned about the answers I was giving him, and told me that he needed to consult with the nutritionist. He left the room, and we waited some more. Now the nutritionist in this office is fantastic. He is not completely on board with what we are doing, and is not familiar with GAPS, but he is supportive in general. All of this to say, I was not concerned. The doc returned to say that it was not possible to fully track calories in broth, so he would like to offer a round of bloodwork to check Ellie's levels. HAHA! I almost laughed outloud. That would be GREAT, I told him.
After the appointment we headed off for the lab draw and waited a week or so for the results.
And how did they turn out, you are wondering? Wonderful! In fact, her vitamin A level was elevated, meaning she may be getting too much. And all of her levels were as good as they were on the elemental diet, and some even better.
This was SO exciting for me! Even though there are decades of experience and research that have gone into GAPS and SCD, it is not been readily accepted by mainstream MD's. I could not help but doubt that her bloodwork would come back complete. But it did! Really? ALL nutrients provided on bone broth, meat, and zucchini? Amazing! That was more proof than I could have ever asked for.
On the flip side, I sort of wanted to go take the paper proof and rub it in the doctors face. I had to ask forgiveness for that.
Friday, May 13, 2011
We Won't Be Keeping This Doc
A few weeks back we had the opportunity (insert sarcasm here) of attending our long awaited appointment at the local pediatric GI office. We met the doctor who Ellie was assigned to after our favorite GI relocated. I truly thought I had low expectations for this appointment, but they just were not low enough. Luckily I had spent a lot of time praying about it, and when the doctor walked in I just knew that he had no information to present. He did not appear confrontational; he appeared intimidated. And that helped me to have grace for him.
That being said, he still did not conduct a thorough examination of Ellie, and he did not appear to have taken much of a look at her file. He already knew how upset I was that I did not get an earlier appointment, and that I had been waiting to speak with him about the very extreme results of her sugar intolerance test. The appointment started like this:
Dr: Hello I am Dr. M. So you were a patient of Dr. B's?
Me: Yes.
Dr: And you saw him regularly?
Me: Yes.
Dr: And how is she doing?
Me: Well OK. She has not been able to move forward in trialling foods.
Dr: And why is that?
Yeah. Why is that exactly? Maybe her sugar intolerance? Maybe her FPIES??? I don't know Doc. You tell me. I was not impressed.
I did request a entire panel of blood tests to be done since we had not had anything checked since taking her off the formula and beginning GAPS. He also wanted to the blood work for the same reason. Fast forward about 20 minutes to the end of the appointment.
Dr: I am going to go put in the referral for speech and food therapy from my desk. There is a huge wait and that will take months for you to get her in. I think three months is a good time for her to reschedule...well...there is that matter of weight loss...so lets make it two months. (He walked toward the door)
Me: OK.
Dr: Bye Ellie (waves at Ellie, and leaves)
Time for a referral out.
That being said, he still did not conduct a thorough examination of Ellie, and he did not appear to have taken much of a look at her file. He already knew how upset I was that I did not get an earlier appointment, and that I had been waiting to speak with him about the very extreme results of her sugar intolerance test. The appointment started like this:
Dr: Hello I am Dr. M. So you were a patient of Dr. B's?
Me: Yes.
Dr: And you saw him regularly?
Me: Yes.
Dr: And how is she doing?
Me: Well OK. She has not been able to move forward in trialling foods.
Dr: And why is that?
Yeah. Why is that exactly? Maybe her sugar intolerance? Maybe her FPIES??? I don't know Doc. You tell me. I was not impressed.
I did request a entire panel of blood tests to be done since we had not had anything checked since taking her off the formula and beginning GAPS. He also wanted to the blood work for the same reason. Fast forward about 20 minutes to the end of the appointment.
Dr: I am going to go put in the referral for speech and food therapy from my desk. There is a huge wait and that will take months for you to get her in. I think three months is a good time for her to reschedule...well...there is that matter of weight loss...so lets make it two months. (He walked toward the door)
Me: OK.
Dr: Bye Ellie (waves at Ellie, and leaves)
Time for a referral out.
Wednesday, April 6, 2011
Where, Oh Where, Did Our Good G.I. Go?
We had a great GI. He diagnosed Ellie with MSPI at 12 weeks old and FPIES shortly after the introduction of food. This, in the FPIES world, is unheard of. Why? Because for most doctors around the country FPIES is unheard of.
Our GI landed in Sacramento after learning from some great FPIES docs in Chicago. He was the new Pediatric GI in his office, and most likely why we got in to see him. He was supportive, listened, and had an amazing amount of knowledge. Sometimes he still gave me the 'you are a crazy mom' look, but that was OK, because he followed it up with 'I have no idea. That makes no sense.' He got us diagnosed. He got us moving forward. And I am convinced he saved Ellie's life. And he left. BUMMER!
About two months ago the news escaped through the local FPIES mama's that he was expecting his first child and moving to Texas to be near family. DARN! I scheduled a follow up for Ellie right away, and pushed for him to do the upper biopsy and dissacharidases test that we had been putting off. After looking at me and saying, "My leaving is not a good reason to do a biopsy," I further discussed with him why I felt it was time to do it and how there were a few remaining questions that needed to be answered for Ellie. He agreed. (I also did not want him to leave and then have one of the other, less knowledgeable doctors, perform these tests or know nothing about them....but I kept that part to myself).
Ellie's procedure was performed about 5 weeks before he was to leave. I could have sworn he said he was leaving April 1. We were not having success moving Ellie past the meat broths and onto vegetables, and she had huge issue with carrot, which made me pause to wonder if the dissacharide (sugar intolerance) test would shed light on this. I then realized it was the last week of March and I had not heard from the GI. Wait a minute! He had emailed a few times with preliminary results, and said he was waiting on the final test to provide a treatment plan.
The last Monday of March I called the GI office to check in, and was told - "He is gone." What!?!? I was MAD. He told me he would check in before leaving! He just left??? Just like that??? Now what was I to do? I asked to speak with his nurse and waited for a call back.
And that was when things changed. It was as if we had been sucked into a new realm. I received a glimpse of what it must be like for FPIES moms who had to fight from the beginning, received no help, and some of who even were accused of Munchhausen by proxy.
The new nurse is who called. To tell me that the results were lost and had to be requested again. And that there were no open appointments to get Ellie in to one of the other GI docs, even though she needed to be seen and had a food fail. Did she need to go to the emergency room? No. OK well the next appointment was not for 4 weeks or more. Who did I want her to see? Dr. D was scheduled out to May, and Dr. M the end of April. Why? Because Ellie is a new patient. I argued. But they want to have enough time for the first appointment. Ridiculous. Call me with the results when they get in. Get me the results of the test.
Another phone call. What are the test results? Can't give them out because no doctor has read them to interpret. Give me the results! Here are the numbers but I can't counsel you on what they mean. They are low - very low. I would believe that she needs to be seen sooner rather than later so you need to see Dr. M. OK. Soon. How soon? The end of April. That doesn't sound like a priority appointment. It's all they have. Another phone call. Has a doctor seen the test at this point? Yes I can read you his notes. Please do. His notes say that he does not believe the results to be consistent with CSID and that the other numbers do not make sense. There was an error with the biopsy.
There was an ERROR with the BIOPSY? He is saying Dr. B made an error with this test and none of the others that were FINE?
No. He is not saying Dr. B made the error. He is saying the lab made the error.
OH...that lab that is one of the only ones in the country to even do this lab?? The EXPERT lab?
Silence.
I would like a copy of the results so I know how to feed my daughter. Have the nutritionist call me. And try to get us in sooner.
And with that I knew it was time for a change. I went from an understanding doctor who never made us wait more than a few days to be seen because of the urgency of Ellie's condition, to an office that could not fit her in. This is not acceptable to me, and I really don't care how short handed they are after losing our GI. I don't care that the new nurse does not know what FPIES is, or that the remaining GI's do not know Elianna's history. I don't care who has won what award for fantastic medical contribution, or how great of a colonoscopy these other GI's can perform. I care that my daughter needs to be seen by a knowledgeable doctor when she is ill, and that does not wait four weeks unless you live in a country other than this one with less than stellar medical care. I am not new to this. What is that expression? This is not my first time at the rodeo? I am not the new FPIES mama looking for an answer and being sent away with 'she has the flu'. I am a Professional FPIES mama. And I come equipped with experience, information, medical studies, and an attitude of advocacy for my child.
Hello Dr. M. Nice to meet you.
Our GI landed in Sacramento after learning from some great FPIES docs in Chicago. He was the new Pediatric GI in his office, and most likely why we got in to see him. He was supportive, listened, and had an amazing amount of knowledge. Sometimes he still gave me the 'you are a crazy mom' look, but that was OK, because he followed it up with 'I have no idea. That makes no sense.' He got us diagnosed. He got us moving forward. And I am convinced he saved Ellie's life. And he left. BUMMER!
About two months ago the news escaped through the local FPIES mama's that he was expecting his first child and moving to Texas to be near family. DARN! I scheduled a follow up for Ellie right away, and pushed for him to do the upper biopsy and dissacharidases test that we had been putting off. After looking at me and saying, "My leaving is not a good reason to do a biopsy," I further discussed with him why I felt it was time to do it and how there were a few remaining questions that needed to be answered for Ellie. He agreed. (I also did not want him to leave and then have one of the other, less knowledgeable doctors, perform these tests or know nothing about them....but I kept that part to myself).
Ellie's procedure was performed about 5 weeks before he was to leave. I could have sworn he said he was leaving April 1. We were not having success moving Ellie past the meat broths and onto vegetables, and she had huge issue with carrot, which made me pause to wonder if the dissacharide (sugar intolerance) test would shed light on this. I then realized it was the last week of March and I had not heard from the GI. Wait a minute! He had emailed a few times with preliminary results, and said he was waiting on the final test to provide a treatment plan.
The last Monday of March I called the GI office to check in, and was told - "He is gone." What!?!? I was MAD. He told me he would check in before leaving! He just left??? Just like that??? Now what was I to do? I asked to speak with his nurse and waited for a call back.
And that was when things changed. It was as if we had been sucked into a new realm. I received a glimpse of what it must be like for FPIES moms who had to fight from the beginning, received no help, and some of who even were accused of Munchhausen by proxy.
The new nurse is who called. To tell me that the results were lost and had to be requested again. And that there were no open appointments to get Ellie in to one of the other GI docs, even though she needed to be seen and had a food fail. Did she need to go to the emergency room? No. OK well the next appointment was not for 4 weeks or more. Who did I want her to see? Dr. D was scheduled out to May, and Dr. M the end of April. Why? Because Ellie is a new patient. I argued. But they want to have enough time for the first appointment. Ridiculous. Call me with the results when they get in. Get me the results of the test.
Another phone call. What are the test results? Can't give them out because no doctor has read them to interpret. Give me the results! Here are the numbers but I can't counsel you on what they mean. They are low - very low. I would believe that she needs to be seen sooner rather than later so you need to see Dr. M. OK. Soon. How soon? The end of April. That doesn't sound like a priority appointment. It's all they have. Another phone call. Has a doctor seen the test at this point? Yes I can read you his notes. Please do. His notes say that he does not believe the results to be consistent with CSID and that the other numbers do not make sense. There was an error with the biopsy.
There was an ERROR with the BIOPSY? He is saying Dr. B made an error with this test and none of the others that were FINE?
No. He is not saying Dr. B made the error. He is saying the lab made the error.
OH...that lab that is one of the only ones in the country to even do this lab?? The EXPERT lab?
Silence.
I would like a copy of the results so I know how to feed my daughter. Have the nutritionist call me. And try to get us in sooner.
And with that I knew it was time for a change. I went from an understanding doctor who never made us wait more than a few days to be seen because of the urgency of Ellie's condition, to an office that could not fit her in. This is not acceptable to me, and I really don't care how short handed they are after losing our GI. I don't care that the new nurse does not know what FPIES is, or that the remaining GI's do not know Elianna's history. I don't care who has won what award for fantastic medical contribution, or how great of a colonoscopy these other GI's can perform. I care that my daughter needs to be seen by a knowledgeable doctor when she is ill, and that does not wait four weeks unless you live in a country other than this one with less than stellar medical care. I am not new to this. What is that expression? This is not my first time at the rodeo? I am not the new FPIES mama looking for an answer and being sent away with 'she has the flu'. I am a Professional FPIES mama. And I come equipped with experience, information, medical studies, and an attitude of advocacy for my child.
Hello Dr. M. Nice to meet you.
Thursday, March 17, 2011
Off The Advised Path
Almost two months ago I made the decision that 'no answers' and 'try this' were no longer acceptable answers for my Ellie. 'She will outgrow it.....we think.....at some point....' was beyond frustrating, when coupled with an allergist who saw through my eyes when her patch testing showed an intolerance to corn. 'WHERE IS SHE GETTING CORN?' he firmly had asked in a very demanding tone. Where? Her formula. 'We need to get her off.' Yes, I know. But how exactly?
Doctors are not trained in nutrition. In fact, it is so much NOT apart of their medical school that there is a separate degree for it, and they then refer you to a nutritionist. This is not something I am bitter about. The rise in information and advances in western medicine have created a situation where no doctor could know everything, and specialists have evolved in an effort to deal with exactly this. The new problem is body parts are connected and affect each other. The heart does not exist separately from the brain that tells it to pump, and the intestines do not exist separately from the blood that uses its nutrients.
So now what? There was not a doctor that could counsel me on creating a home made formula for Ellie. And our team of doctors all panicked for Ellie, using what information they had. This makes me appreciate them all, but did not give us answers.
Allergist: Get her off the formula. Put her on home made almond milk and see the head nutritionist at the hospital. She should be ok for a couple weeks like this and at this point needs to be off bad enough that we need to risk lack of nutrients and weight loss. (I am supposed to be ok with starving my child for a couple of weeks?)
Pediatric Gastrointerologist: Speak to our in-house nutritionist about what foods to trial and getting her off the formula, and keep the formula because at this time she is growing and appearing to 'thrive' where she is at. (I am supposed to be ok with ignoring the other symptoms I am seeing and the fact that she is steadily getting sicker?)
Pediatric Nutritionist in GI office: Transition her off of the formula and give her homemade almond milk. Try hemp milk and lamb and a vitamin and she should be fine. (I am supposed to be ok with taking at least four weeks to get her onto any kind of food, assuming she passes them all and we are not set back a couple of weeks with a fail?)
Pediatrician: Just looked at me in what appeared to be wide-eyed frustration as I told him about what the other doctors had said. He nodded his head as he listened to my concerns, and what I thought I was going to have to do. He said the equivalent of 'you do what you have to do for your child' and 'what I can do is give you an additional referral to the head nutritionist for help'.
Where did this leave us? Getting a referral to Stanford would take weeks, and getting in to Dr. J in New Jersey could take months. We didn't have this amount of time to wait with not even a guarantee of an answer.
What I did:
It was day seven of feeding Elianna only home made almond milk. She threw up every third or fourth bottle, was white in color, had sunken eyes, and barely walked. Her weight was dropping fast, and her eyes got cloudier and cloudier. I was told to persevere. That night, while on my knees crying for my child who I felt was dying before my eyes, I realized the answer had been right in front of me all along. For two years the information kept popping up from various angles.
And at that moment I resolved that things would be different. What did I have to lose? Nothing. It certainly couldn't get much worse. She was starving before my eyes.
I got up, made her a bottle of formula to buy us time, and risked the reactions she would have on it. Reintroducing the formula after her body had the time to rid itself of it meant her blood would react harder and faster when it was reintroduced. But it was better than no food and would buy us some time.
And I emailed Dr. Natasha Campbell-McBride. In the morning I would revisit my GAPS and SCD books.
Doctors are not trained in nutrition. In fact, it is so much NOT apart of their medical school that there is a separate degree for it, and they then refer you to a nutritionist. This is not something I am bitter about. The rise in information and advances in western medicine have created a situation where no doctor could know everything, and specialists have evolved in an effort to deal with exactly this. The new problem is body parts are connected and affect each other. The heart does not exist separately from the brain that tells it to pump, and the intestines do not exist separately from the blood that uses its nutrients.
So now what? There was not a doctor that could counsel me on creating a home made formula for Ellie. And our team of doctors all panicked for Ellie, using what information they had. This makes me appreciate them all, but did not give us answers.
Allergist: Get her off the formula. Put her on home made almond milk and see the head nutritionist at the hospital. She should be ok for a couple weeks like this and at this point needs to be off bad enough that we need to risk lack of nutrients and weight loss. (I am supposed to be ok with starving my child for a couple of weeks?)
Pediatric Gastrointerologist: Speak to our in-house nutritionist about what foods to trial and getting her off the formula, and keep the formula because at this time she is growing and appearing to 'thrive' where she is at. (I am supposed to be ok with ignoring the other symptoms I am seeing and the fact that she is steadily getting sicker?)
Pediatric Nutritionist in GI office: Transition her off of the formula and give her homemade almond milk. Try hemp milk and lamb and a vitamin and she should be fine. (I am supposed to be ok with taking at least four weeks to get her onto any kind of food, assuming she passes them all and we are not set back a couple of weeks with a fail?)
Pediatrician: Just looked at me in what appeared to be wide-eyed frustration as I told him about what the other doctors had said. He nodded his head as he listened to my concerns, and what I thought I was going to have to do. He said the equivalent of 'you do what you have to do for your child' and 'what I can do is give you an additional referral to the head nutritionist for help'.
Where did this leave us? Getting a referral to Stanford would take weeks, and getting in to Dr. J in New Jersey could take months. We didn't have this amount of time to wait with not even a guarantee of an answer.
What I did:
It was day seven of feeding Elianna only home made almond milk. She threw up every third or fourth bottle, was white in color, had sunken eyes, and barely walked. Her weight was dropping fast, and her eyes got cloudier and cloudier. I was told to persevere. That night, while on my knees crying for my child who I felt was dying before my eyes, I realized the answer had been right in front of me all along. For two years the information kept popping up from various angles.
And at that moment I resolved that things would be different. What did I have to lose? Nothing. It certainly couldn't get much worse. She was starving before my eyes.
I got up, made her a bottle of formula to buy us time, and risked the reactions she would have on it. Reintroducing the formula after her body had the time to rid itself of it meant her blood would react harder and faster when it was reintroduced. But it was better than no food and would buy us some time.
And I emailed Dr. Natasha Campbell-McBride. In the morning I would revisit my GAPS and SCD books.
Monday, February 28, 2011
The Procedure: Part 3
I had been told the procedure would take about 30 minutes, so as we approached the 40 minute mark I began to get nervous. Our GI walked in, pictures in hand, and eased my apprehension with a "She's fine; she did great." She was in recovery.
He went over the pictures with me and discussed where he took the biopsies from. It would be at least one week before some of the specialty tests would be back with results. I found it truly amazing that with a scope they can examine a person's digestive system from mouth to rear.
The preliminary results showed no scarring or inflammation in the esophagus Everything on the top half, including stomach folds looked normal. THIS was fantastic news! From the other end there were no signs of anything concerning, and confirmation of the FPIES diagnoses. The lymph-nodes in her intestines were swollen and inflamed, showing signs of Ileal-Lymphoid-Nodular Hyperplasia. Before you are overly impressed with my ability to restate this diagnosis, I must explain. The only reason I recognized it was because I had just read about it in the first pages of my GAPS book. The GI continued to explain that there was nothing that could be done, it was confirmation of her diagnosis.
The nurses would come get me to see Elianna. OH NO they wouldn't....I said that I was told after he was done I could go see her, and so he walked me back to her room to double check. He wanted to make sure and follow procedure. I walked into her room and there she lay under close observation from the recovery nurse. She was not even stirring yet. Before going into the procedure I had been told that it would take 10-15 minutes on average before she would wake up. The explanation was that propophyl was administered throughout the procedure and that the anesthesiologist would stay there providing a steady dose throughout. Once the procedure was over, the dosing would stop and Ellie would begin to wake. When I initially entered her room I was not concerned because I thought she had only been there a few minutes.
I walked over to her bed and the nurse said something about her needing to be on oxygen due to her respiratory issues. I stroked her hair and touched her cheek but she didn't stir. The nurse began to question me about what I would be feeding her when she woke. And then it got quiet and we waited. I sat down. The nurse walked back and forth and flipped through her chart, and I began to find that a bit odd. The other toddler had come in for recovery before we went in, and they only checked on her periodically. Our nurse never left the room, and checked her monitors frequently. I began to get a little concerned. What were they not telling me?
Thirty minutes went by, and the nurse adjusted more things. I asked her how long I should expect it to take before she woke, and she said that it depended on how early she got up and if we interrupted nap time and it could sometimes take an hour....I tried not to worry. And then suddenly she walked over and shook her.
That startled me and I was certain it was not the way things were supposed to go. Elianna began to cry and sit up. "Pick her up," the nurse commanded. Elianna cried. "OK, there we go, that is better." The nurse said. "She needed to clear her lungs and now her oxygen levels are better."
WHAT?!
She instructed me to make a bottle and feed her and that as soon as she had eaten we could go. She explained that her oxygen levels had been low. She had to increase the oxygen even more and that there had appeared to be some restriction which was why she was not waking...or something like that. It is all a blur. I felt like I had whiplash.
I fed Elianna a very diluted bottle of broth, of which she ate about 1 ounce. And we were free to go. With her head flopping I gathered up our stuff and headed for the elevator with final instructions to watch her head and neck because she was still a bit groggy. Once in the car she fell back to sleep, and we headed home. And I was exhausted. But she was fine. Thank you Jesus!
He went over the pictures with me and discussed where he took the biopsies from. It would be at least one week before some of the specialty tests would be back with results. I found it truly amazing that with a scope they can examine a person's digestive system from mouth to rear.
The preliminary results showed no scarring or inflammation in the esophagus Everything on the top half, including stomach folds looked normal. THIS was fantastic news! From the other end there were no signs of anything concerning, and confirmation of the FPIES diagnoses. The lymph-nodes in her intestines were swollen and inflamed, showing signs of Ileal-Lymphoid-Nodular Hyperplasia. Before you are overly impressed with my ability to restate this diagnosis, I must explain. The only reason I recognized it was because I had just read about it in the first pages of my GAPS book. The GI continued to explain that there was nothing that could be done, it was confirmation of her diagnosis.
The nurses would come get me to see Elianna. OH NO they wouldn't....I said that I was told after he was done I could go see her, and so he walked me back to her room to double check. He wanted to make sure and follow procedure. I walked into her room and there she lay under close observation from the recovery nurse. She was not even stirring yet. Before going into the procedure I had been told that it would take 10-15 minutes on average before she would wake up. The explanation was that propophyl was administered throughout the procedure and that the anesthesiologist would stay there providing a steady dose throughout. Once the procedure was over, the dosing would stop and Ellie would begin to wake. When I initially entered her room I was not concerned because I thought she had only been there a few minutes.
I walked over to her bed and the nurse said something about her needing to be on oxygen due to her respiratory issues. I stroked her hair and touched her cheek but she didn't stir. The nurse began to question me about what I would be feeding her when she woke. And then it got quiet and we waited. I sat down. The nurse walked back and forth and flipped through her chart, and I began to find that a bit odd. The other toddler had come in for recovery before we went in, and they only checked on her periodically. Our nurse never left the room, and checked her monitors frequently. I began to get a little concerned. What were they not telling me?
Thirty minutes went by, and the nurse adjusted more things. I asked her how long I should expect it to take before she woke, and she said that it depended on how early she got up and if we interrupted nap time and it could sometimes take an hour....I tried not to worry. And then suddenly she walked over and shook her.
That startled me and I was certain it was not the way things were supposed to go. Elianna began to cry and sit up. "Pick her up," the nurse commanded. Elianna cried. "OK, there we go, that is better." The nurse said. "She needed to clear her lungs and now her oxygen levels are better."
WHAT?!
She instructed me to make a bottle and feed her and that as soon as she had eaten we could go. She explained that her oxygen levels had been low. She had to increase the oxygen even more and that there had appeared to be some restriction which was why she was not waking...or something like that. It is all a blur. I felt like I had whiplash.
I fed Elianna a very diluted bottle of broth, of which she ate about 1 ounce. And we were free to go. With her head flopping I gathered up our stuff and headed for the elevator with final instructions to watch her head and neck because she was still a bit groggy. Once in the car she fell back to sleep, and we headed home. And I was exhausted. But she was fine. Thank you Jesus!
The Procedure: Part 2... of 3
As the nurses began to clean up I could sense I was not the only one stressed from the events, and made comment of how we all needed margaritas. They agreed. And off we rolled.
As we came out of the room we passed our GI who was consulting with the recovery nurse. "NO food," I could hear him saying..."NO..no juice. None of the usual. She will be fine." That was reassuring. She had already come into my room and left a cart of orange juice and apple juice and asked it if it was OK to leave or if it would tempt Elianna. I was worried they would feed her before I was able to get back to her room after recovery.
Our GI turned and saw us riding buy and concern crossed his face. I usually show up in his office with poop portfolio in hand and ready to talk facts. I was transparent with my concern and frustration that morning. He quickly followed us into the procedure room and asked me how she was doing, what was new, what is this new broth diet he knows nothing about and how it is it going. In the middle of this I met the anesthesiologist.
"I understand you have some concerns," she began. "But I discussed them with Dr. B and he said it was a reaction that required ingestion and that he did not believe putting the medication right into her blood would cause problems. However we are very prepared if there should be."
I just stared. She continued. And it all went very fast.
"We are going to begin giving her the propophyl and she is going to start going limp. The MINUTE you feel her go limp you MUST turn around and put her down on the gurney PROMPTLY so that we can IMMEDIATELY put the oxygen mask on her."
WHAT THE HECK? How did I sign up for this? And who is this quack job anesthesiologist??
She went limp almost instantly and I scrambled to get up off of the gurney and lay her down.
"And there she goes," she said. And Elianna screamed, rolled and tried to sit up. I started to cry again. And out she went. "We always win in the end...hahahaha," the anesthesiologist continued. I just stood there.
Our GI sat next to her on the bed and said "She will be OK." He handed me 'Bear', and I said "I guess I leave now?" He turned and said something along the lines of "Hey someone show her to the waiting room!" and out I went to wait.
The nurse that showed me to the waiting room informed me that as soon as the GI was done speaking with me I could go back into Elianna's room for her recovery. And I waited. And I updated on facebook to keep myself distracted.
As we came out of the room we passed our GI who was consulting with the recovery nurse. "NO food," I could hear him saying..."NO..no juice. None of the usual. She will be fine." That was reassuring. She had already come into my room and left a cart of orange juice and apple juice and asked it if it was OK to leave or if it would tempt Elianna. I was worried they would feed her before I was able to get back to her room after recovery.
Our GI turned and saw us riding buy and concern crossed his face. I usually show up in his office with poop portfolio in hand and ready to talk facts. I was transparent with my concern and frustration that morning. He quickly followed us into the procedure room and asked me how she was doing, what was new, what is this new broth diet he knows nothing about and how it is it going. In the middle of this I met the anesthesiologist.
"I understand you have some concerns," she began. "But I discussed them with Dr. B and he said it was a reaction that required ingestion and that he did not believe putting the medication right into her blood would cause problems. However we are very prepared if there should be."
I just stared. She continued. And it all went very fast.
"We are going to begin giving her the propophyl and she is going to start going limp. The MINUTE you feel her go limp you MUST turn around and put her down on the gurney PROMPTLY so that we can IMMEDIATELY put the oxygen mask on her."
WHAT THE HECK? How did I sign up for this? And who is this quack job anesthesiologist??
She went limp almost instantly and I scrambled to get up off of the gurney and lay her down.
"And there she goes," she said. And Elianna screamed, rolled and tried to sit up. I started to cry again. And out she went. "We always win in the end...hahahaha," the anesthesiologist continued. I just stood there.
Our GI sat next to her on the bed and said "She will be OK." He handed me 'Bear', and I said "I guess I leave now?" He turned and said something along the lines of "Hey someone show her to the waiting room!" and out I went to wait.
The nurse that showed me to the waiting room informed me that as soon as the GI was done speaking with me I could go back into Elianna's room for her recovery. And I waited. And I updated on facebook to keep myself distracted.
The Procedure: Part 1
Last Tuesday Ellie went in for an upper GI scope and biopsy and a colonoscopy. Due to some very last minute changes in childcare, I headed to the hospital with Ellie by myself. My 5 year old has been put under twice at Sutter Davis Hospital and I was impressed both times with their professionalism and ability to work with children. This time we headed to Sutter Memorial, and a different experience.
I had some difficulty finding the pediatric check in station because it was a regular nurses station in the middle of the hospital floor. The check in staff and nurses that got us situated were very nice and accommodating. As we checked in, Elianna coughed her nasty cough, and so began a round of questioning about whether or not she was sick. I reassured her that she was not ill with a bacterial or viral infection, but that she had respiratory issues as well as allergies I needed to discuss with the anesthesiologist. I was told that she would let our nurse know, and so began the multiple 'blow offs' I would receive.
We waited in a regular hospital room that we shared with another toddler who was having a procedure done by our same, favorite GI. We would be going out of the room, around the corner to the next room for the procedure, and then Ellie would be wheeled back into the spot where she was at for recovery.
From the moment I met our nurse I began requesting a consult with the anesthesiologist, and was reassured that I would get one because that was routine and everyone got one. He listened to my concerns, and listened to Elianna's chest to tell me that the lower portion of her lungs was restricted and concerning, and that he would have the anesthesiologist listen to that as well.
The child life specialist came in and expressed sympathy that I was by myself and provided a bunch of stuff to entertain Ellie. She was a great resource to have. We were off to a good start....for about 45 minutes. The clock ticked, and no one came for us or the little girl next door. She was supposed to be first, and we were supposed to be second. Then they moved her out into the hall, and wheeled a teenage girl into her spot. And the time for Ellie to go into her procedure passed. At least we weren't waiting in the hall. I finally asked the nurse about the delay, and he said that we had been bumped due to an unexpected procedure brought from elsewhere in the hospital. That was fine, but they could have let us know. Especially since Elianna had not eaten for 4 hours at this point when she is used to eating about every hour.
In the meantime I continued to ask for the anesthesiologist, and our nurse said he had spoken with her directly and that she said she was coming to discuss the medication as well as listen to the respiratory issues.
Finally the nurse came in and put Lidocain on the backs of her hands to prepare for the IV. They gave me instructions saying that I would be sitting on the gurney with her, holding her while they put the IV in, and then I would ride with her in my arms into the procedure room and stay with her until she was asleep. Multiple nurses spoke with me about how she would suddenly go limp in my arms and how her eyes would roll back. It was traumatic for some moms but not to worry, it was normal. I tried to brace myself for it.
And I asked for the anesthesiologist again.
The time to put in the IV arrived. We climbed up onto the gurney and the process began. We started with two nurses and myself. Soon they were yelling for someone next door to come and help, and then asked the child life specialist to come and assist. Ellie is a fighter, and this showed through. Nurses dropped things and didn't have things, and it got more and more chaotic. There was blood on her hand and blood on the sheets, and blood on me. And she screamed. Another nurse came in to help. I realized that I was the one holding her body and felt an incredible sense of responsibility. This was not my job! I began to get angry that four of them could not hold one arm, and I began to cry. The child life specialist stroked my shoulder and I tried to go back to that place of 'it is what it is'. They finally got it in and let go to find more tape, but left the flush attached which Elianna promptly began to swing all over the place and grab in an attempt to pull the IV out. Once more it was left up to me to make sure she didn't yank on it, and the child life specialist trying to get the attention of the nurses between clenched teeth. It took them all to find tape? Ten minutes later the IV was in and her arm was taped like a cast. They wanted to make sure that she couldn't pull it out and they would have to start over. So much for limited exposure to adhesives.
I tired to calm her while the child life specialist tried to wipe up the blood. Ellie was no longer mad; she was afraid. And it hurt my heart.
I asked for the anesthesiologist one more time, but was pretty worn down. This time our nurse blew me off, and was clearly uncomfortable. She would talk to me IN the procedure room he said. In retrospect I believe it was because they were behind schedule, but they were no longer winning awards with me for bedside manner or quality of care.
I had some difficulty finding the pediatric check in station because it was a regular nurses station in the middle of the hospital floor. The check in staff and nurses that got us situated were very nice and accommodating. As we checked in, Elianna coughed her nasty cough, and so began a round of questioning about whether or not she was sick. I reassured her that she was not ill with a bacterial or viral infection, but that she had respiratory issues as well as allergies I needed to discuss with the anesthesiologist. I was told that she would let our nurse know, and so began the multiple 'blow offs' I would receive.
We waited in a regular hospital room that we shared with another toddler who was having a procedure done by our same, favorite GI. We would be going out of the room, around the corner to the next room for the procedure, and then Ellie would be wheeled back into the spot where she was at for recovery.
From the moment I met our nurse I began requesting a consult with the anesthesiologist, and was reassured that I would get one because that was routine and everyone got one. He listened to my concerns, and listened to Elianna's chest to tell me that the lower portion of her lungs was restricted and concerning, and that he would have the anesthesiologist listen to that as well.
The child life specialist came in and expressed sympathy that I was by myself and provided a bunch of stuff to entertain Ellie. She was a great resource to have. We were off to a good start....for about 45 minutes. The clock ticked, and no one came for us or the little girl next door. She was supposed to be first, and we were supposed to be second. Then they moved her out into the hall, and wheeled a teenage girl into her spot. And the time for Ellie to go into her procedure passed. At least we weren't waiting in the hall. I finally asked the nurse about the delay, and he said that we had been bumped due to an unexpected procedure brought from elsewhere in the hospital. That was fine, but they could have let us know. Especially since Elianna had not eaten for 4 hours at this point when she is used to eating about every hour.
In the meantime I continued to ask for the anesthesiologist, and our nurse said he had spoken with her directly and that she said she was coming to discuss the medication as well as listen to the respiratory issues.
Finally the nurse came in and put Lidocain on the backs of her hands to prepare for the IV. They gave me instructions saying that I would be sitting on the gurney with her, holding her while they put the IV in, and then I would ride with her in my arms into the procedure room and stay with her until she was asleep. Multiple nurses spoke with me about how she would suddenly go limp in my arms and how her eyes would roll back. It was traumatic for some moms but not to worry, it was normal. I tried to brace myself for it.
And I asked for the anesthesiologist again.
The time to put in the IV arrived. We climbed up onto the gurney and the process began. We started with two nurses and myself. Soon they were yelling for someone next door to come and help, and then asked the child life specialist to come and assist. Ellie is a fighter, and this showed through. Nurses dropped things and didn't have things, and it got more and more chaotic. There was blood on her hand and blood on the sheets, and blood on me. And she screamed. Another nurse came in to help. I realized that I was the one holding her body and felt an incredible sense of responsibility. This was not my job! I began to get angry that four of them could not hold one arm, and I began to cry. The child life specialist stroked my shoulder and I tried to go back to that place of 'it is what it is'. They finally got it in and let go to find more tape, but left the flush attached which Elianna promptly began to swing all over the place and grab in an attempt to pull the IV out. Once more it was left up to me to make sure she didn't yank on it, and the child life specialist trying to get the attention of the nurses between clenched teeth. It took them all to find tape? Ten minutes later the IV was in and her arm was taped like a cast. They wanted to make sure that she couldn't pull it out and they would have to start over. So much for limited exposure to adhesives.
I tired to calm her while the child life specialist tried to wipe up the blood. Ellie was no longer mad; she was afraid. And it hurt my heart.
I asked for the anesthesiologist one more time, but was pretty worn down. This time our nurse blew me off, and was clearly uncomfortable. She would talk to me IN the procedure room he said. In retrospect I believe it was because they were behind schedule, but they were no longer winning awards with me for bedside manner or quality of care.
Anesthesia: Putting Her Under
Before making steps to move forward with Elianna's diet change and deciding not to give her certain foods or treatment, there were some final possibilities that needed to be eliminated. At this point she had never been put under for an upper scope or biopsy. Her continued reflux, and 18 month history of it, concerned me that there was scar tissue or permanent damage in her esophagus. Thoughts of hernia, possible Eosinophillic Esophagitis, and possible sugar intolerance, encouraged me to take the risk in an effort to eliminate these final issues that might complicate her diagnosis of FPIES.
I say risk, because entering the hospital is a risk for an FPIES patient. Most of us are aware of the fact that supposedly sterile hospital environments are actual full of funky bacteria, and poor quality food that lacks nutrition. What the majority of people in the Western world are NOT aware of is the ingredients in medications and adhesives. This includes medical professionals and anesthesiologists. Ingredients in adhesives include corn which has been used to replace latex. Ingredients in medications include corn and soy, just to name a few.
Ellie was to go in for an upper esophogeal scope and biopsy, and a colonoscopy and biopsy. This required her to receive anesthesia, all of which was routine and not a big deal to most. However, the medication that is used to put children under is called propophyl. It is the only anesthesia with an anti-nausea medication added, which is why it is used with children. It helps with the after effects and the efforts to make it less traumatic since the chance of them waking up to a barf bucket is considerably less. The problem with propophyl is that it contains egg ingredients and soy oil.
Elianna has not had egg yet, but she has had soy, and it has resulted in an FPIES reaction (which is the equivalent of anaphylaxis). Most people who have anaphylaxis to a food would tell you that there is no way they would risk being exposed to that food while going into surgery or a procedure that required anesthesia. And the medical community recognizes this risk and would make alternative arrangements. The risk of someone going into anaphylactic shock while being put under anesthesia is not a scenario they like to risk. Unlike traditional anaphylaxis where a person's throat swells shut and they can not breath, Ellie's FPIES is a blood reaction that sends her body into a state of inflammation and shock, and can make her blood pressure irregular.
Many FPIES children have had this procedure done multiple times without problem. But a few have not. And Ellie's added corn intolerance and continued respiratory issues were enough to make me want to vomit. My research and conversations with other FPIES mommies told me there were alternatives to the soy based medications, and that going into things aware should decrease the risk of problems significantly. I took a deep breath, and got on my knees again. Our God is not a God of fear.....but I didn't realize yet that this was the next lesson He was wanting me to learn.
I say risk, because entering the hospital is a risk for an FPIES patient. Most of us are aware of the fact that supposedly sterile hospital environments are actual full of funky bacteria, and poor quality food that lacks nutrition. What the majority of people in the Western world are NOT aware of is the ingredients in medications and adhesives. This includes medical professionals and anesthesiologists. Ingredients in adhesives include corn which has been used to replace latex. Ingredients in medications include corn and soy, just to name a few.
Ellie was to go in for an upper esophogeal scope and biopsy, and a colonoscopy and biopsy. This required her to receive anesthesia, all of which was routine and not a big deal to most. However, the medication that is used to put children under is called propophyl. It is the only anesthesia with an anti-nausea medication added, which is why it is used with children. It helps with the after effects and the efforts to make it less traumatic since the chance of them waking up to a barf bucket is considerably less. The problem with propophyl is that it contains egg ingredients and soy oil.
Elianna has not had egg yet, but she has had soy, and it has resulted in an FPIES reaction (which is the equivalent of anaphylaxis). Most people who have anaphylaxis to a food would tell you that there is no way they would risk being exposed to that food while going into surgery or a procedure that required anesthesia. And the medical community recognizes this risk and would make alternative arrangements. The risk of someone going into anaphylactic shock while being put under anesthesia is not a scenario they like to risk. Unlike traditional anaphylaxis where a person's throat swells shut and they can not breath, Ellie's FPIES is a blood reaction that sends her body into a state of inflammation and shock, and can make her blood pressure irregular.
Many FPIES children have had this procedure done multiple times without problem. But a few have not. And Ellie's added corn intolerance and continued respiratory issues were enough to make me want to vomit. My research and conversations with other FPIES mommies told me there were alternatives to the soy based medications, and that going into things aware should decrease the risk of problems significantly. I took a deep breath, and got on my knees again. Our God is not a God of fear.....but I didn't realize yet that this was the next lesson He was wanting me to learn.
Sunday, February 6, 2011
Fearful Mommy: part 2
We began transitioning Ellie onto the home made almond milk. The allergist wanted me to transition over the period of a month, while the nutritionist wanted me to start introducing new foods right away, and those two things did not match. I decided that if the corn formula was not good for her, we needed to transition faster than a month. Her nutrition depended on it, so within 4 days we had her on 100% almond milk. It was not going well. Her intake was down dramatically, and about every 3rd or 4th bottle she was vomiting. I think that if I was on 100% almond milk, I would vomit, too.
By Wednesday of that week I began to be seriously concerned for dehydration. I couldn't tell if her clumsiness and lethargic behavior was due to reaction, die off, or just plain lack of food. It was also the first day we had to take her out of the house. We had plans to take Moriah to the SF Academy of Sciences homeschool day, and she was looking forward to it tremendously. We packed up two thermoses of hot almond milk, and headed out, just like we would do for formula.
The day went OK, though her intake was low as usual. Her daily 50-60 ounces was down to about 25, and this day was no different. Late that afternoon we headed home, and she was hungry. She quickly downed a bottle in the car, and then suddenly as we entered the foothills during rush hour traffic, she began vomiting. She projectile vomited so hard that she was having trouble breathing, and she wasn't stopping. Jason crossed four lanes of traffic to stop on the shoulder, and I barely had enough room to open the door. I jumped out, grabbed her out of her seat, and held her upside down, up the hill we were next to, as she continued to heave. This was scary enough that for the first time her 5 year old sister verbalized 'Mommy I am sad for Ellie too!'.
What in the world? I was puzzled. We cleaned up as best we could and piled back in for the remainder of the ride home. I grabbed the thermos and smelled. It was rancid. Stupid, stupid mommy! It never even occurred to me that the almond milk would store differently and needed to be refrigerated and not hot. And in my head I knew - she was so used to eating things that hurt her tummy or that tasted nasty, she just ate it. The whole bottle. 8 ounces of rancid almond milk.
By the time we got home, got cleaned up, and got the kids into bed, I was exhausted. I found myself on my knees in the bedroom once more, looking for wisdom and direction. And the mommy guilt was horrific.
We had just finished day four of only almond milk. Her body was thinning, and her skin was changing. She was groggy, clumsy and lethargic, but her eyes were brighter and less dull. The results were confusing, and no doctor could give me direction. I had to rely on my mommy instincts, what information I had been able to piece together, and pray for direction from the God who made her. At this point what I knew was that the almond milk was perhaps better than the formula, but not enough to sustain her. And I was convinced some of what I was seeing was a 'die off' effect in her intestines, making her sicker.
I made the decision to try hemp next. Following GAPs guidelines, I made a paste of the hemp protein powder I had purchased, and applied it to her wrist while she slept. I covered it with a bandaid, and went to bed.
By Wednesday of that week I began to be seriously concerned for dehydration. I couldn't tell if her clumsiness and lethargic behavior was due to reaction, die off, or just plain lack of food. It was also the first day we had to take her out of the house. We had plans to take Moriah to the SF Academy of Sciences homeschool day, and she was looking forward to it tremendously. We packed up two thermoses of hot almond milk, and headed out, just like we would do for formula.
The day went OK, though her intake was low as usual. Her daily 50-60 ounces was down to about 25, and this day was no different. Late that afternoon we headed home, and she was hungry. She quickly downed a bottle in the car, and then suddenly as we entered the foothills during rush hour traffic, she began vomiting. She projectile vomited so hard that she was having trouble breathing, and she wasn't stopping. Jason crossed four lanes of traffic to stop on the shoulder, and I barely had enough room to open the door. I jumped out, grabbed her out of her seat, and held her upside down, up the hill we were next to, as she continued to heave. This was scary enough that for the first time her 5 year old sister verbalized 'Mommy I am sad for Ellie too!'.
What in the world? I was puzzled. We cleaned up as best we could and piled back in for the remainder of the ride home. I grabbed the thermos and smelled. It was rancid. Stupid, stupid mommy! It never even occurred to me that the almond milk would store differently and needed to be refrigerated and not hot. And in my head I knew - she was so used to eating things that hurt her tummy or that tasted nasty, she just ate it. The whole bottle. 8 ounces of rancid almond milk.
By the time we got home, got cleaned up, and got the kids into bed, I was exhausted. I found myself on my knees in the bedroom once more, looking for wisdom and direction. And the mommy guilt was horrific.
We had just finished day four of only almond milk. Her body was thinning, and her skin was changing. She was groggy, clumsy and lethargic, but her eyes were brighter and less dull. The results were confusing, and no doctor could give me direction. I had to rely on my mommy instincts, what information I had been able to piece together, and pray for direction from the God who made her. At this point what I knew was that the almond milk was perhaps better than the formula, but not enough to sustain her. And I was convinced some of what I was seeing was a 'die off' effect in her intestines, making her sicker.
I made the decision to try hemp next. Following GAPs guidelines, I made a paste of the hemp protein powder I had purchased, and applied it to her wrist while she slept. I covered it with a bandaid, and went to bed.
Fearful Mommy: part 1
Since we knew Elianna's formula was keeping her from getting completely better (to baseline), when we introduced almond milk we also lowered the amount of formula we were giving her to help make sure it was a successful pass. Once we determined it was safe, we went back to 100% formula and moved on to the next trial.
Over the next couple weeks there were a lot of complications, but I couldn't help feeling as if something was just a little not right, and after going back on to the formula 100% she was actually worse. I knew that when you remove a food trigger and then reintroduce it the symptoms could be worse or more immediate because T-cells can identify it faster. I kept shrugging it off, but then over the next three weeks, this added to a couple of other fails, and she just didn't get any better.
For the first time ever her weight started to decline very slightly, her respiratory symptoms were horrible, and we were even failing diaper cream on her butt. This was not boding well. We returned to the allergist who continued with the original instructions: pass almond milk and then transition her off the formula entirely. The concept that her intestines were not going to heal entirely, and that she may not pass any other foods while still on the corn based formula, was one that I could understand in my head. However, the idea of putting my 18 month old on a diet of home made almond milk, and a teaspoon or so of fruit at dinner, was not a very comforting thought. This had to be insane. But the plan was to move quickly and get other foods into her diet. For a child with sensory and food issues this was a lot to expect, and I was spending a lot of fearful time on my knees praying.
I waited until the following week when we went back to see the GI and the nutritionist, so that I could ask if this plan was as insane as I thought. Truly, could an 18 month old survive on only almond milk? Surely not. My mommy instincts were going through the roof. The GI tried to reassure me by saying that 80% of a child's calories between 12 and 24 months of age come from milk (ok but that is for kids who eat food right?), and the nutritionist said that it would be low in protein, so if I could trial and add hemp milk, then lamb, and a gummy multi-vitamin that he recommended, we would be good to go.
Wow. That seemed like a good plan, but a lot of steps to conquer. And could we do it quick enough to not be detrimental to her health? Again I was reassured that she has never had failure to thrive and definitely is in good enough condition to go a month without worrying that she isn't getting her daily recommended nutrition.
A MONTH.
That certainly did not sit well with this mama. A month of transitioning off of the formula, and onto only home made almond milk, while trialling these other new foods? What if she failed one? What if she needed weeks to heal?
What about the fact that she was not healed to begin with and I listened to her cough up her lungs and wake up screaming for air every night?!?
I prayed, and I fretted, and I researched, and I consulted others that I could trust, and the answer was all the same: no one could tell me what the answer was, and the doctors were giving me what they felt to be the best answer. I called and spoke with the pediatrician who gave me an immediate referral to the top pediatric nutritionist at the local hospital, but it would take time to be processed and get in. How long?
The following week her symptoms of illness continued, and we decided to take the plunge. I began making almond milk, and we began the transition. And I was afraid.
I was afraid for her nutrition, I was afraid for a possible reaction once she was on that much almond milk, and I was afraid that if we had to go back to the formula we would not be able to.
Over the next couple weeks there were a lot of complications, but I couldn't help feeling as if something was just a little not right, and after going back on to the formula 100% she was actually worse. I knew that when you remove a food trigger and then reintroduce it the symptoms could be worse or more immediate because T-cells can identify it faster. I kept shrugging it off, but then over the next three weeks, this added to a couple of other fails, and she just didn't get any better.
For the first time ever her weight started to decline very slightly, her respiratory symptoms were horrible, and we were even failing diaper cream on her butt. This was not boding well. We returned to the allergist who continued with the original instructions: pass almond milk and then transition her off the formula entirely. The concept that her intestines were not going to heal entirely, and that she may not pass any other foods while still on the corn based formula, was one that I could understand in my head. However, the idea of putting my 18 month old on a diet of home made almond milk, and a teaspoon or so of fruit at dinner, was not a very comforting thought. This had to be insane. But the plan was to move quickly and get other foods into her diet. For a child with sensory and food issues this was a lot to expect, and I was spending a lot of fearful time on my knees praying.
I waited until the following week when we went back to see the GI and the nutritionist, so that I could ask if this plan was as insane as I thought. Truly, could an 18 month old survive on only almond milk? Surely not. My mommy instincts were going through the roof. The GI tried to reassure me by saying that 80% of a child's calories between 12 and 24 months of age come from milk (ok but that is for kids who eat food right?), and the nutritionist said that it would be low in protein, so if I could trial and add hemp milk, then lamb, and a gummy multi-vitamin that he recommended, we would be good to go.
Wow. That seemed like a good plan, but a lot of steps to conquer. And could we do it quick enough to not be detrimental to her health? Again I was reassured that she has never had failure to thrive and definitely is in good enough condition to go a month without worrying that she isn't getting her daily recommended nutrition.
A MONTH.
That certainly did not sit well with this mama. A month of transitioning off of the formula, and onto only home made almond milk, while trialling these other new foods? What if she failed one? What if she needed weeks to heal?
What about the fact that she was not healed to begin with and I listened to her cough up her lungs and wake up screaming for air every night?!?
I prayed, and I fretted, and I researched, and I consulted others that I could trust, and the answer was all the same: no one could tell me what the answer was, and the doctors were giving me what they felt to be the best answer. I called and spoke with the pediatrician who gave me an immediate referral to the top pediatric nutritionist at the local hospital, but it would take time to be processed and get in. How long?
The following week her symptoms of illness continued, and we decided to take the plunge. I began making almond milk, and we began the transition. And I was afraid.
I was afraid for her nutrition, I was afraid for a possible reaction once she was on that much almond milk, and I was afraid that if we had to go back to the formula we would not be able to.
Thursday, November 25, 2010
After the Bump From Baseline
The kitchen floor and newspaper incidents left us off of baseline for awhile. Elianna had to do some healing. In the meantime I found the Miralax that the doctor prescribed for her constipation. I mulled over this decision for hours. I researched and I read. The doctor promised at every turn that there is no way she could react to this; it is a chemical made in the lab that is not absorbed and passes straight through the intestines. However, when I looked at the Miralax website there was a huge warning about not using it if you were allergic. huh? Plus, there have been absolutely NO tests on children, yet it is the number one pediatric prescribed laxative right now in the U.S.
I put serious thought into this Miralax use, and my mommy instict said not to do it. I had read a homeopathic remedy for constipation was Magnesium, and so I bought pure powdered capsules at the health food store and added minuscule amounts to her bottle one time a day. This helped her to go, and gave her some diarrhea. I figured I had just gave her too much. When I told the pediatric nutritionist he advised against it at all because it could cause her to loose too much nutrients, and pushed me back towards the Miralax. I didn't want to. But I did it. And I regretted it.
I don't know if she had a full blown reaction, or if she was just cramping from the medication and then sleeping from the exhausting of those cramps and constipation pain. It doesn't really matter. All that matters was that she had SOME kind of reaction to it, and I will NOT be giving it to her again.
I told the pediatric GI and he gave me the same look he gave me when I said she vomited after eating the newspaper. It was that 'now I think we are dealing with crazy mom syndrome' look. Perhaps it was just me being sensitive and looking for affirmation that I am NOT crazy.
I put serious thought into this Miralax use, and my mommy instict said not to do it. I had read a homeopathic remedy for constipation was Magnesium, and so I bought pure powdered capsules at the health food store and added minuscule amounts to her bottle one time a day. This helped her to go, and gave her some diarrhea. I figured I had just gave her too much. When I told the pediatric nutritionist he advised against it at all because it could cause her to loose too much nutrients, and pushed me back towards the Miralax. I didn't want to. But I did it. And I regretted it.
I don't know if she had a full blown reaction, or if she was just cramping from the medication and then sleeping from the exhausting of those cramps and constipation pain. It doesn't really matter. All that matters was that she had SOME kind of reaction to it, and I will NOT be giving it to her again.
I told the pediatric GI and he gave me the same look he gave me when I said she vomited after eating the newspaper. It was that 'now I think we are dealing with crazy mom syndrome' look. Perhaps it was just me being sensitive and looking for affirmation that I am NOT crazy.
Thursday, November 11, 2010
The Puzzle Continues
Typical of FPIES, within two days we knew we had a new problem - constipation. A call to the GI said to switch and try her on Elecare, which we did. Within 24 hours she was screaming her head off and vomiting like crazy. Back to Nutramigen AA we went, and back to constipation. Roller coaster up, roller coaster down.
Her recent tests came rolling back in, including the scope and biopsy that was her birthday present. The radiologist was concerned about colitis in her upper intestines. Scope was not high enough to confirm colitis that showed on the xray, but GI said it was not a concern because there would be more visible problems with her stool. (note: still do not entirely agree here, but at this time there is no point in putting her under to scope her upper intestines) I asked about doing a candida test, not realizing this had already been done by her pediatrician and was negative. I asked about probiotics. I was told that it would not hurt but the ones over the counter are not FDA approved or regulated and that Candida over growth was an Internet autism myth. Hmm. (this is another area that the GI and I disagree some on)
All I knew was the information was pouring in once again, and once again the blood was showing up in her diapers, but this time because she actually could NOT go poo. She was so constipated that every couple of days she spent time crying in agony as we rubbed her back and pushed up her knees to help give her leverage. The GI prescribed Miralax in her bottle. And shortly into baseline with constipation, she got 'something' off the kitchen floor.
Her recent tests came rolling back in, including the scope and biopsy that was her birthday present. The radiologist was concerned about colitis in her upper intestines. Scope was not high enough to confirm colitis that showed on the xray, but GI said it was not a concern because there would be more visible problems with her stool. (note: still do not entirely agree here, but at this time there is no point in putting her under to scope her upper intestines) I asked about doing a candida test, not realizing this had already been done by her pediatrician and was negative. I asked about probiotics. I was told that it would not hurt but the ones over the counter are not FDA approved or regulated and that Candida over growth was an Internet autism myth. Hmm. (this is another area that the GI and I disagree some on)
All I knew was the information was pouring in once again, and once again the blood was showing up in her diapers, but this time because she actually could NOT go poo. She was so constipated that every couple of days she spent time crying in agony as we rubbed her back and pushed up her knees to help give her leverage. The GI prescribed Miralax in her bottle. And shortly into baseline with constipation, she got 'something' off the kitchen floor.
Wednesday, October 20, 2010
Moving Forward
At this point we were giving Ellie peaches, nectarines and blueberries, but we had not correctly trialled them. She no longer received a spoon and would only eat things that she could feed herself. This drastically limits options at 12 months old when there are texture issues. She would not touch anything, and she was also teething (seriously inconvenient when dealing with FPIES).
We had been feeling financial strain from co-pays, formula expense, time off of work, and medical bills. Deep down I knew I needed to put her on the more expensive Elemental formula to see if there was improvement, but her intake was increasing and we were talking an average of $45-$60 a can. Something was going to have to change. We were at the cross-roads, and I was not convinced we could do it financially. I expressed my thoughts to my new mom-friends online. I was looking for any insight to get the insurance company to cover Ellie's formula, and thoughts on moving to the prescription medical grade formula. One of the mom's offered to send me 7 cans of the Elemental formula Nutramigen AA. For the full amazing story click 'here'.
For an explanation of the different formulas click 'here'.
In the meantime I took Ellie to her next GI appointment on the morning of her first birthday. He has amazing patience and fantastic listening ear. We recapped her symptoms and discussed the new ones:
-reflux since birth, even in hospital had to be addressed by nurses
-fussy and seen for colic
-snotty clogged nose since birth
-upper respiratory issues
-can not hold her facing out with arm pressure on her belly or she will vomit
-never had a completely solid stool - always diarrhea and liquid
-always had sensory focused personality - sensitive to touch, likes soft, etc. hates dirty diapers, wont eat if diaper is wet, etc
-change from breastfeeding to formula meant more alert happy baby but no change in stools
-history of crying and pain
recent changes:
-straining at time to poo even if diarrhea. acts in pain, constipation.
-stool smells acidic and burns her butt sometimes
-vomit has changed to be partially curdy
-stool often has two separate ‘stages’, a liquid stage first, and then a goopy solid portion 15+ minutes later
-horrible breath
-lots of hands in the mouth for sucking and putting things back until she gags
-no solids - periodic peach juice or smashed blueberry - yet stool stays same diarrhea
-spends the night fussy and up often after having any food
-often still just randomly chokes up stomach acid, but less projectile vomit
Our pediatric GI agreed it was time to look further. The radiologist had concern for colitis in her upper intestines, but the GI was not overly concerned. He said there would be more visible evidence in her stool (bleeding). It was time to take an internal look. He conducted a rectal scope and biopsy (happy birthday Ellie). The rectal scope looked great. Everything seemed to be in her upper intestines. He gave orders for stool sample tests and said to work on collecting them while waiting for the results of the biopsy. He recapped FPIES versus EE, and the idea that her specific problems could be in her esophagus. He mentioned a concern for sugar intolerance which he said was a secondary issue to FPIES, and why she could still be having trouble with the fruits. When I asked about Nutramigen AA (the formula being sent by the other FPIES mom) he said it was not one that he kept in the office, and the he would prefer she be on one that was designed more for a toddler nutritionally.
We left the appointment with instructions to try the elemental formula, samples of Elecare, a new reflux medicine, three large bags of stool sample kits, and instructions to wait for results of these additional tests. I took a deep breath, lots of notes, and made final preparations for Ellie's first birthday party in two days.
We had been feeling financial strain from co-pays, formula expense, time off of work, and medical bills. Deep down I knew I needed to put her on the more expensive Elemental formula to see if there was improvement, but her intake was increasing and we were talking an average of $45-$60 a can. Something was going to have to change. We were at the cross-roads, and I was not convinced we could do it financially. I expressed my thoughts to my new mom-friends online. I was looking for any insight to get the insurance company to cover Ellie's formula, and thoughts on moving to the prescription medical grade formula. One of the mom's offered to send me 7 cans of the Elemental formula Nutramigen AA. For the full amazing story click 'here'.
For an explanation of the different formulas click 'here'.
In the meantime I took Ellie to her next GI appointment on the morning of her first birthday. He has amazing patience and fantastic listening ear. We recapped her symptoms and discussed the new ones:
-reflux since birth, even in hospital had to be addressed by nurses
-fussy and seen for colic
-snotty clogged nose since birth
-upper respiratory issues
-can not hold her facing out with arm pressure on her belly or she will vomit
-never had a completely solid stool - always diarrhea and liquid
-always had sensory focused personality - sensitive to touch, likes soft, etc. hates dirty diapers, wont eat if diaper is wet, etc
-change from breastfeeding to formula meant more alert happy baby but no change in stools
-history of crying and pain
recent changes:
-straining at time to poo even if diarrhea. acts in pain, constipation.
-stool smells acidic and burns her butt sometimes
-vomit has changed to be partially curdy
-stool often has two separate ‘stages’, a liquid stage first, and then a goopy solid portion 15+ minutes later
-horrible breath
-lots of hands in the mouth for sucking and putting things back until she gags
-no solids - periodic peach juice or smashed blueberry - yet stool stays same diarrhea
-spends the night fussy and up often after having any food
-often still just randomly chokes up stomach acid, but less projectile vomit
Our pediatric GI agreed it was time to look further. The radiologist had concern for colitis in her upper intestines, but the GI was not overly concerned. He said there would be more visible evidence in her stool (bleeding). It was time to take an internal look. He conducted a rectal scope and biopsy (happy birthday Ellie). The rectal scope looked great. Everything seemed to be in her upper intestines. He gave orders for stool sample tests and said to work on collecting them while waiting for the results of the biopsy. He recapped FPIES versus EE, and the idea that her specific problems could be in her esophagus. He mentioned a concern for sugar intolerance which he said was a secondary issue to FPIES, and why she could still be having trouble with the fruits. When I asked about Nutramigen AA (the formula being sent by the other FPIES mom) he said it was not one that he kept in the office, and the he would prefer she be on one that was designed more for a toddler nutritionally.
We left the appointment with instructions to try the elemental formula, samples of Elecare, a new reflux medicine, three large bags of stool sample kits, and instructions to wait for results of these additional tests. I took a deep breath, lots of notes, and made final preparations for Ellie's first birthday party in two days.
Monday, October 18, 2010
That Fateful Appointment
Nearing the end of June we headed back to the GI doctor for Ellie's blood test results and hopefully some answers. What we discussed:
Only on Nutramigen Lipil. She licks foods but most of the time will not eat them and is becoming more and more disinterested. Trigger foods result in vomiting and non-bloody diarrhea and then resolves. Foods tried included sweet potato, rice, banana, wheat products, barley, butternut squash.
I was unable to tell him if she cried more or less at any point because she had cried since birth with no visible pattern. She also slept at odd intervals and was completely unable to get on a schedule, so I could not address that as well. On occasion she did have low grade fevers that appeared at the same time as food exposure.
Blood test results showed mostly normal but some things on the low side. She showed negative to celiacs, and all IgE tests (RAST) came back negative except for a slight peanut. (I found out later that these tests were not very accurate anyway since she has to have eaten the foods for her blood to respond).
He disappeared to discuss with the pediatric nutritionist and then returned. "There is this very rare condition..." he began... "we have only seen a few"...."less than 3% of children"...."FPIES"...."I want her to see an allergist for a second opinion"...."no way to diagnose except by symptoms and process of eliminating anything else it could be"...."we dont really know"...."not a lot of info"...."there is another option for formula we should try"...."stop giving her foods for now"...."establish a plan with the nutritionist"..."here is a copy of the most recent study done"...
WHAT? WHAT was he talking about? Less than how many kids? They don't KNOW anything? This was not what I had wanted to hear. June. 2010. My Ellie is 10 months old and nearing her first birthday. No WAY. Something called FPIES? Food protein? She cant have protein? Rice has protein? So do green vegetables? All food? I just did a lot of nodding and repeating. The plan? Start with the least allergic foods with the lowest levels of protein, preferably all organic. Start with apples, apricots, plums. Nothing else. Keep with the Nutramigen Lipil. Soon she will be a year and we can try other options. And here is a referral to the allergist.
Only on Nutramigen Lipil. She licks foods but most of the time will not eat them and is becoming more and more disinterested. Trigger foods result in vomiting and non-bloody diarrhea and then resolves. Foods tried included sweet potato, rice, banana, wheat products, barley, butternut squash.
I was unable to tell him if she cried more or less at any point because she had cried since birth with no visible pattern. She also slept at odd intervals and was completely unable to get on a schedule, so I could not address that as well. On occasion she did have low grade fevers that appeared at the same time as food exposure.
Blood test results showed mostly normal but some things on the low side. She showed negative to celiacs, and all IgE tests (RAST) came back negative except for a slight peanut. (I found out later that these tests were not very accurate anyway since she has to have eaten the foods for her blood to respond).
He disappeared to discuss with the pediatric nutritionist and then returned. "There is this very rare condition..." he began... "we have only seen a few"...."less than 3% of children"...."FPIES"...."I want her to see an allergist for a second opinion"...."no way to diagnose except by symptoms and process of eliminating anything else it could be"...."we dont really know"...."not a lot of info"...."there is another option for formula we should try"...."stop giving her foods for now"...."establish a plan with the nutritionist"..."here is a copy of the most recent study done"...
WHAT? WHAT was he talking about? Less than how many kids? They don't KNOW anything? This was not what I had wanted to hear. June. 2010. My Ellie is 10 months old and nearing her first birthday. No WAY. Something called FPIES? Food protein? She cant have protein? Rice has protein? So do green vegetables? All food? I just did a lot of nodding and repeating. The plan? Start with the least allergic foods with the lowest levels of protein, preferably all organic. Start with apples, apricots, plums. Nothing else. Keep with the Nutramigen Lipil. Soon she will be a year and we can try other options. And here is a referral to the allergist.
Sunday, October 10, 2010
The First Diagnosis
The next couple weeks we were back and forth between the pediatrician and the GI several times. I was pleased at the amount of communication that went on between the two. I went on a drastic elimination diet in an attempt to see improvement in her vomiting and diarrhea. I had already eliminated dairy and soy, and over the next couple weeks I had eliminated all of the top allergens as well, and was down to eating mostly vegetables. There was no improvement in Elianna. Diapers were less bright red, but she was still extremely lethargic, crying and vomiting a lot, and not meeting milestones. We had received the diagnosis of milk/soy protein intolerance. (*note: they now know that the soy protein is extremely similar in structure to the diary protein, thus dairy protein issues should include the elimination of soy as well) The GI had sent us home with a can of over the counter Nutramigen Lipil, and encouraged me to give it a shot. I took one look at the back of the can and cried. How could these ingredients be better for her than breast milk? It made no sense. And the price tag on this formula was going to be a hardship.
I felt affirmed when the pediatrician thought it bizarre to tell me to stop EBF, and was on the phone again with the GI. The result was the pediatrician telling me that I had to eat, and that she was only getting worse. Sometime around 12 weeks Elianna filled her diaper yet again with blood, and I was on the phone with the GI to tell them there was no improvement with my elimination diet. The nurse called back and very firmly informed me that if I did not start the formula THAT night, Elianna would be too anemic and must be hospitalized. I became angry as she said to me, "I know this sounds counter-intuitive, and makes no sense, but you need to trust us on this one. You have to start her tonight." I hung up the phone and cried. I made a bottle, handed it to Jason, and went for a walk.
When I returned, the house was quiet, and Elianna was on the floor in the living room. She had drank the entire bottle. I walked over and took a cautious look. She was moving, smiling, and extremely active. So active that I immediately thought she was having an adverse reaction to the formula and was having some type of seizure. In my panic, Jason put his arm around me and said "honey, look at her. She is happy after eating, she is smiling, and she is active like we have never seen her before". He was right! I did not even recognize her because she was not vomiting, screaming in pain, or laying like a lump. Amazing!
Within 48 hours her diapers no longer included visible blood, and her behavior improved (less fussiness and signs of pain). Her diapers resembled that of an EBF baby, so to me things were looking fantastic. The GI had been correct, and she could not even digest the protein structure in my breast milk. We had found an answer (for now). Hallelujah!
(The insurance company refused to pay for her formula because she had not been hospitalized, and so we began footing the expense which ranged between $500 - $800 a month to feed her.)
I felt affirmed when the pediatrician thought it bizarre to tell me to stop EBF, and was on the phone again with the GI. The result was the pediatrician telling me that I had to eat, and that she was only getting worse. Sometime around 12 weeks Elianna filled her diaper yet again with blood, and I was on the phone with the GI to tell them there was no improvement with my elimination diet. The nurse called back and very firmly informed me that if I did not start the formula THAT night, Elianna would be too anemic and must be hospitalized. I became angry as she said to me, "I know this sounds counter-intuitive, and makes no sense, but you need to trust us on this one. You have to start her tonight." I hung up the phone and cried. I made a bottle, handed it to Jason, and went for a walk.
When I returned, the house was quiet, and Elianna was on the floor in the living room. She had drank the entire bottle. I walked over and took a cautious look. She was moving, smiling, and extremely active. So active that I immediately thought she was having an adverse reaction to the formula and was having some type of seizure. In my panic, Jason put his arm around me and said "honey, look at her. She is happy after eating, she is smiling, and she is active like we have never seen her before". He was right! I did not even recognize her because she was not vomiting, screaming in pain, or laying like a lump. Amazing!
Within 48 hours her diapers no longer included visible blood, and her behavior improved (less fussiness and signs of pain). Her diapers resembled that of an EBF baby, so to me things were looking fantastic. The GI had been correct, and she could not even digest the protein structure in my breast milk. We had found an answer (for now). Hallelujah!
(The insurance company refused to pay for her formula because she had not been hospitalized, and so we began footing the expense which ranged between $500 - $800 a month to feed her.)
Thursday, October 7, 2010
Once Upon A Time...
Ellie was born in August of 2009. We were sent home from the hospital with the instructions that she is 'just one of those babies that refluxes' and to 'be sure and lay her on her side' so that she does not 'choke or aspirate on her own vomit'. She was quiet and slept a lot. I found it interesting that I seemed to have had a second mellow baby. Breastfeeding was not going as well as it had the first time because she was having trouble latching and seemed to choke a lot, but the specialists reassured me that this would get better as she learned and my milk leveled out.
Home we went. Ellie continued to throw up, and it worsened. Half of her feedings ended up on the floor, my clothes, or whatever was around her. And the crying started. Her sleep was irregular, and there were times where there was no consoling her. Advice from friends and doctors told me that she was colicky, and that it was sensory. My mission was to figure out what was triggering her, what time of the day/night it was at it's worst, and in the meantime I hardly ever put her down. The pediatrician told me that there were now studies that showed infants who proved colicky had specific personality traits when they got older, and to brace myself for a less-compliant child than my first. She was just a more vocal and particular child.
Her sensory preferences were obvious. She wanted to sleep a specific way, with no light at all, and a specific blanket draped a particular way over her face. In fact, we have video of her at only a few hours old being wheeled into my hospital room while rubbing her cheek against the hospital blanket in the same way. I began the task of figuring out this little person's likes and dislikes in the hope of establishing a sleeping and eating pattern. A couple of months into charting the day I gave that up. Clearly she would not be a scheduled baby, and clearly this was personality. Right?
I wondered. I could not help but think that babies that cried all of the time truly had something going on inside of them, and that excusing it as personality was not acceptable to me. Next came the standard comments from other moms about attachment parenting versus whatever the other is called. My first born had wanted her space, but enjoyed snuggling. Ellie never seemed happy, but wanted to eat all the time and stopped crying most of the time when she was held. She sounded broken hearted if you denied her, and she was loud! Within the first couple of weeks my four year old asked if we could exchange her for a baby that didn't cry as much.
In the meantime we were in the doctor's office a lot, already. She was a squirmy baby who never stayed swaddled, and about 2 weeks old her umbilical cord prematurely tore off when it stuck to a swaddle blanket. It bled quite a bit and sent me into a panic. After a week it was goopy and still bleeding. It wasn't sealing off. The pediatrician said that it could herniate if left untreated, so we treated it with liquid nitrogen which turned it gray and icky.
At this point things get a little fuzzy, but I know that around 10 weeks old things changed. I started to notice her diapers were looking a little pink (blood) and that was unsettling. There was continued talk about my oversupply of milk and that it can cause digestive problems and the green funky poo that we had been seeing. And then one weekend we were at the mall. I went out of the store to change Ellie's diapers and when I opened it up I was horrified. It looked as if someone had dumped a melted red Popsicle into her diaper. I ripped off the outer diaper liner to see the absorbing material underneath. Yes! red! In a panic I called the doctors office and proceeded to go through half an hour of crazy conversations with advice nurses and determining if I needed to take her to the emergency room. No, she was not unconscious or passing large amounts. So it was decided I could wait until Monday.
Monday we headed in to the doctor, and the journey began. Meckles? Breastfeeding? Condition where the bowels kink and then straighten on their own? Our fantastic pediatrician wanted to be sure, and calmly tried to reassure me. Off to the pediatric gastroenterologist we went. And she wasnt even three months old.
Home we went. Ellie continued to throw up, and it worsened. Half of her feedings ended up on the floor, my clothes, or whatever was around her. And the crying started. Her sleep was irregular, and there were times where there was no consoling her. Advice from friends and doctors told me that she was colicky, and that it was sensory. My mission was to figure out what was triggering her, what time of the day/night it was at it's worst, and in the meantime I hardly ever put her down. The pediatrician told me that there were now studies that showed infants who proved colicky had specific personality traits when they got older, and to brace myself for a less-compliant child than my first. She was just a more vocal and particular child.
Her sensory preferences were obvious. She wanted to sleep a specific way, with no light at all, and a specific blanket draped a particular way over her face. In fact, we have video of her at only a few hours old being wheeled into my hospital room while rubbing her cheek against the hospital blanket in the same way. I began the task of figuring out this little person's likes and dislikes in the hope of establishing a sleeping and eating pattern. A couple of months into charting the day I gave that up. Clearly she would not be a scheduled baby, and clearly this was personality. Right?
I wondered. I could not help but think that babies that cried all of the time truly had something going on inside of them, and that excusing it as personality was not acceptable to me. Next came the standard comments from other moms about attachment parenting versus whatever the other is called. My first born had wanted her space, but enjoyed snuggling. Ellie never seemed happy, but wanted to eat all the time and stopped crying most of the time when she was held. She sounded broken hearted if you denied her, and she was loud! Within the first couple of weeks my four year old asked if we could exchange her for a baby that didn't cry as much.
In the meantime we were in the doctor's office a lot, already. She was a squirmy baby who never stayed swaddled, and about 2 weeks old her umbilical cord prematurely tore off when it stuck to a swaddle blanket. It bled quite a bit and sent me into a panic. After a week it was goopy and still bleeding. It wasn't sealing off. The pediatrician said that it could herniate if left untreated, so we treated it with liquid nitrogen which turned it gray and icky.
At this point things get a little fuzzy, but I know that around 10 weeks old things changed. I started to notice her diapers were looking a little pink (blood) and that was unsettling. There was continued talk about my oversupply of milk and that it can cause digestive problems and the green funky poo that we had been seeing. And then one weekend we were at the mall. I went out of the store to change Ellie's diapers and when I opened it up I was horrified. It looked as if someone had dumped a melted red Popsicle into her diaper. I ripped off the outer diaper liner to see the absorbing material underneath. Yes! red! In a panic I called the doctors office and proceeded to go through half an hour of crazy conversations with advice nurses and determining if I needed to take her to the emergency room. No, she was not unconscious or passing large amounts. So it was decided I could wait until Monday.
Monday we headed in to the doctor, and the journey began. Meckles? Breastfeeding? Condition where the bowels kink and then straighten on their own? Our fantastic pediatrician wanted to be sure, and calmly tried to reassure me. Off to the pediatric gastroenterologist we went. And she wasnt even three months old.
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