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.
Showing posts with label biopsy. Show all posts
Showing posts with label biopsy. Show all posts
Thursday, July 7, 2011
Wednesday, April 27, 2011
And How Do We Get Them Back?
This has been the research question of the month for me. Those confusing digestive enzymes have pushed me into rethinking my career and considering courses this summer in something that might help. The short answer: heal the intestines from the inside out.
Using SCD and GAPS books, along with information provided from our relocated GI, medical studies, and other knowledgeable mamas, I have been able to piece together a basic understanding of the GI tract in relationship to these enzymes. Here is my (guaranteed over-simplified) version:
When the intestines receive damage of any kind (antibiotics, illness, inherited 'toxic load', etc.) then the bacterial make-up present there can become imbalanced. Things grow more than they are supposed to and others die off. These important digestive enzymes reside on the tips of the intestinal villi. There they can be damaged from this bacterial overgrowth and the body may then begin to cover them with a protective mucous.
Another way they can be damaged is through lack of nutrition. During bacterial overgrowth, these symbiotic intestinal bugs begin to grow places they are not supposed to, like into the stomach and throat. Sound funky? Every mama knows about thrush in the mouth. There is one perfect example! Ph levels in the stomach change, change when invading bacteria take up residence, and if it does not do it's job, food can enter the intestines unprepared for further digestion. Things begin to go wrong. Hormones are not released as needed, other organs are not sent signals to make enzymes, and the entire digestive system becomes impaired. Much needed nutrition is not absorbed by the body, and these little intestinal villi take incredible amounts of nourishment just to do their job. Without it they begin laying flat and the body begins to cover them in a protective mucous.
Regardless of which comes first, (damage or malnourishment), eventually our little intestinal villi friends become exhausted, and somewhere along here is where the cycle of leaky gut and colitis begins. 'Holes' in the intestines develop. It is believed that proteins from food that are not meant to enter the body's bloodstream begin to make their way through the damaged intestinal wall, triggering allergies, intolerances and sensitivities.
Note (disclaimer?): yes, there are believed to be situations where this can happen due to genetic components, but those situations are rare and testing is extremely limited. There is not enough research or information at this point to identify these genes, and even if there was, it would not change the need for my daughter to eat.
So, that brings us back to the issue of how does she get them back? Healing. The bacteria that has overgrown must be starved and the bacteria that is missing must be replaced. And those little villi must be regrown using nutrition from the inside out. Gentle, healing nutrition that needs minimal or no digestion. What does that you say? What provides incredible amounts of easily absorbed nutrients, is rich in vitamins and minerals, provides the brain with it's much needed fats, and since the dawn of time has been used to nourish the intestines from the inside out?
BONE BROTH :)
Combining this with a lot of patient time for healing, we hope she will repair and begin to remake some or all of these enzymes - from the inside out.
Using SCD and GAPS books, along with information provided from our relocated GI, medical studies, and other knowledgeable mamas, I have been able to piece together a basic understanding of the GI tract in relationship to these enzymes. Here is my (guaranteed over-simplified) version:
When the intestines receive damage of any kind (antibiotics, illness, inherited 'toxic load', etc.) then the bacterial make-up present there can become imbalanced. Things grow more than they are supposed to and others die off. These important digestive enzymes reside on the tips of the intestinal villi. There they can be damaged from this bacterial overgrowth and the body may then begin to cover them with a protective mucous.
Another way they can be damaged is through lack of nutrition. During bacterial overgrowth, these symbiotic intestinal bugs begin to grow places they are not supposed to, like into the stomach and throat. Sound funky? Every mama knows about thrush in the mouth. There is one perfect example! Ph levels in the stomach change, change when invading bacteria take up residence, and if it does not do it's job, food can enter the intestines unprepared for further digestion. Things begin to go wrong. Hormones are not released as needed, other organs are not sent signals to make enzymes, and the entire digestive system becomes impaired. Much needed nutrition is not absorbed by the body, and these little intestinal villi take incredible amounts of nourishment just to do their job. Without it they begin laying flat and the body begins to cover them in a protective mucous.
Regardless of which comes first, (damage or malnourishment), eventually our little intestinal villi friends become exhausted, and somewhere along here is where the cycle of leaky gut and colitis begins. 'Holes' in the intestines develop. It is believed that proteins from food that are not meant to enter the body's bloodstream begin to make their way through the damaged intestinal wall, triggering allergies, intolerances and sensitivities.
Note (disclaimer?): yes, there are believed to be situations where this can happen due to genetic components, but those situations are rare and testing is extremely limited. There is not enough research or information at this point to identify these genes, and even if there was, it would not change the need for my daughter to eat.
So, that brings us back to the issue of how does she get them back? Healing. The bacteria that has overgrown must be starved and the bacteria that is missing must be replaced. And those little villi must be regrown using nutrition from the inside out. Gentle, healing nutrition that needs minimal or no digestion. What does that you say? What provides incredible amounts of easily absorbed nutrients, is rich in vitamins and minerals, provides the brain with it's much needed fats, and since the dawn of time has been used to nourish the intestines from the inside out?
BONE BROTH :)
Combining this with a lot of patient time for healing, we hope she will repair and begin to remake some or all of these enzymes - from the inside out.
Wednesday, April 20, 2011
Another Crash Course: Sugar Intolerance 101
After finally getting a copy of Ellie's dissacharide test, I realized I had no idea what I was looking at. The nurse had suggested they were concerning and very low, and with no current treating GI doctor I figured I had better get my fanny moving on what these new terms meant. What her test results showed, and what a quick google search along with consulting a few fellow FPIES mamas revealed:
Lactase - 4.8 (below 15 is abnormal, but normal starts at 24.5ish)
Sucrase - 11.6 (below 25 is abnormal, but normal starts at 54.4ish)
Glycoamylase - 0 (I have no idea what is abnormal but am pretty sure ZERO is not normal)
Palatenase - 2.8 (below 5 is abnormal, but normal starts at 11.1ish)
Keeping in mind that lab results always give a wide range that can be considered normal, these results were still extremely low. But what in the world were these things? They are enzymes. Digestive enzymes found in the intestine that split double sugars for proper processing by the body. Without these enzymes Ellie was unable to process these double sugars. So what are these double sugars?
Latase. OK got it. Sucrase. Alright. But glucoamylase? And palatenase? uh..... And since she is the lowest in these two, I really needed to know what they are. Here is what I found, perhaps over simplified, using my non-medical layman jargon:
glucoamylase is STARCH, that leads to proper digestion of maltase
palatenase is isomaltulose, that leads to proper digestion of FRUCTOSE
OK. So now that I knew what they were, I had to find out what this meant. What I quickly discovered was that these deficiencies could be genetic or acquired, and came with a whole list of other names for diagnosis. And they all had very similar symptoms to FPIES. And guess what? The medical community doesn't know anything much about those diagnoses either. What they do know is that the majority of intestinal disorders come with enzyme deficiency to some degree (more on this later).
*sigh* Back to the mommy brain to digest what this means (pun intended).
What I now know:
Ellie has sugar intolerance. Her intestines have virtually no digestive enzymes to break down sugars.
What I needed to know:
How do we get them back?
How does this affect what I feed her?
With almost four weeks until our next 'new patient' GI appointment I started my next medical crash course on digestive enzymes.
Lactase - 4.8 (below 15 is abnormal, but normal starts at 24.5ish)
Sucrase - 11.6 (below 25 is abnormal, but normal starts at 54.4ish)
Glycoamylase - 0 (I have no idea what is abnormal but am pretty sure ZERO is not normal)
Palatenase - 2.8 (below 5 is abnormal, but normal starts at 11.1ish)
Keeping in mind that lab results always give a wide range that can be considered normal, these results were still extremely low. But what in the world were these things? They are enzymes. Digestive enzymes found in the intestine that split double sugars for proper processing by the body. Without these enzymes Ellie was unable to process these double sugars. So what are these double sugars?
Latase. OK got it. Sucrase. Alright. But glucoamylase? And palatenase? uh..... And since she is the lowest in these two, I really needed to know what they are. Here is what I found, perhaps over simplified, using my non-medical layman jargon:
glucoamylase is STARCH, that leads to proper digestion of maltase
palatenase is isomaltulose, that leads to proper digestion of FRUCTOSE
OK. So now that I knew what they were, I had to find out what this meant. What I quickly discovered was that these deficiencies could be genetic or acquired, and came with a whole list of other names for diagnosis. And they all had very similar symptoms to FPIES. And guess what? The medical community doesn't know anything much about those diagnoses either. What they do know is that the majority of intestinal disorders come with enzyme deficiency to some degree (more on this later).
*sigh* Back to the mommy brain to digest what this means (pun intended).
What I now know:
Ellie has sugar intolerance. Her intestines have virtually no digestive enzymes to break down sugars.
What I needed to know:
How do we get them back?
How does this affect what I feed her?
With almost four weeks until our next 'new patient' GI appointment I started my next medical crash course on digestive enzymes.
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.
Tuesday, March 15, 2011
A Confirmed Diagnosis
Last week we received our first biopsy results for Elianna's procedure.
Summary of the doctor notes are as follows: Stomach, small intestine and colon are all completely normal, with some rare eosinophils found in the esophogus. Because of her restricted diet it is impossible to know 100% that she does not have Eosinophilic esophagitis (EE) based on this scope and biopsy. Time will tell as she outgrows FPIES by 2-3 years of age, and as new foods are introduced to see if there are any issues. We are still waiting on the specific biopsy done for sugar intolerance. What this confirms is her diagnosis of FPIES based on the initial results the day of the scope.
Now before you get too excited about this summary, let me say that there are GREAT things here, and some things we have to take a little more cautiously.
First: what we have is a confirmed diagnosis. Elianna most definitely has FPIES, which we already knew, but we were doing the procedure to eliminate any additional complications, additional diagnosis, and look for secondary conditions such as sugar intolerance or villus atrophy. No additional complications were found. GREAT news.
Second: What Elianna has is called Illeal Lymphoid Nodular Hyperplasia and Non-Specific Colitis. The first is characteristic of FPIES, which means inflamed lymph nodes in the colon. The second, colitis, was a lot worse as an infant. This scope and biopsy showed improvement in this. I have no doubt it is due to the introduction of bone broth prior to the procedure. More GREAT news.
***note before continuing: We love our GI, but he is still a doctor, and still human. He provides information for us based on his knowledge and current information on FPIES which is limited for the medical community in its entirety. The FPIES mamas remain the experts, by far, based on experience and being in the trenches. Where was that honorary medical degree, anyway?
There always seems to be something 'lost' between the documented results of a test from the lab, and the interpretation by the doctor. Granted, it is the doctors job to interpret, but it is often directed by the amount of information he/she has, as well as their personal bias. It is like my job as a teacher. I speak and give professional advice based on my experience and knowledge. In no way can I know everything, or see all that the parent sees. With that in mind....
Third: Stomach, small intestine and colon are all completely normal was translated from no definite diagnostic abnormality. It did not say no inflammation, but showed that the colitis was on the mend. GOOD news!
Fourth: Elianna does not show signs of EE at this time based on what she was currently eating. This is GREAT news as we move forward with the broths, and also shows that she may potentially have less issue with her trigger foods in the future if we can enable some intestinal healing. EE is a much more permanent label, which includes scarring and lots of esophageal pain. Though we can not get a complete confirmation that she does not have EE, I was thrilled that there were no signs of scarring, especially with the extensive amount of vomiting and reflux her little body has endured.
Fifth: Still waiting on the test regarding the various types of sugars. This is a highly specific test only done by one lab in the country (as I understand it). Sugar intolerance is primarily a secondary condition when there is much damage and extensive leaky gut syndrome. The body simply can not handle sugars. This has not been a large concern of ours at this point, but I believe that due to my desire to eliminate all other possible complications and our GI's not wanting to have to put her under again, he conducted this test.
Sixth: Outgrowing FPIES. *sigh* This is an FPIES mother's dream. But unfortunately not the reality for most, and is only medical speak for 'we don't know'. Outgrowing something is not a scientific explanation for anything. You can not conduct a research study on it, except to document when symptoms stop. On average, they THINK, it stops around 2 or 3 years of age. But that was based on no research and very few numbers. The medical community is now estimating 1 in every 1,000 children in the U.S. have it. But they don't know, and some doctors estimate there are more. They do not know if it is on the rise or previously undiagnosed.
Many doctor currently studying FPIES believe it is NOT outgrown. The condition can improve, and most likely will, if we can keep them alive long enough and provide treatment that does not do additional damage. But this comment shows that even the best of doctors are limited in what they can provide. This does not depress me or cause me concern, because there are things that can be done if we can just find each individual path. Just take a look at these results - mostly GREAT!
Summary of the doctor notes are as follows: Stomach, small intestine and colon are all completely normal, with some rare eosinophils found in the esophogus. Because of her restricted diet it is impossible to know 100% that she does not have Eosinophilic esophagitis (EE) based on this scope and biopsy. Time will tell as she outgrows FPIES by 2-3 years of age, and as new foods are introduced to see if there are any issues. We are still waiting on the specific biopsy done for sugar intolerance. What this confirms is her diagnosis of FPIES based on the initial results the day of the scope.
Now before you get too excited about this summary, let me say that there are GREAT things here, and some things we have to take a little more cautiously.
First: what we have is a confirmed diagnosis. Elianna most definitely has FPIES, which we already knew, but we were doing the procedure to eliminate any additional complications, additional diagnosis, and look for secondary conditions such as sugar intolerance or villus atrophy. No additional complications were found. GREAT news.
Second: What Elianna has is called Illeal Lymphoid Nodular Hyperplasia and Non-Specific Colitis. The first is characteristic of FPIES, which means inflamed lymph nodes in the colon. The second, colitis, was a lot worse as an infant. This scope and biopsy showed improvement in this. I have no doubt it is due to the introduction of bone broth prior to the procedure. More GREAT news.
***note before continuing: We love our GI, but he is still a doctor, and still human. He provides information for us based on his knowledge and current information on FPIES which is limited for the medical community in its entirety. The FPIES mamas remain the experts, by far, based on experience and being in the trenches. Where was that honorary medical degree, anyway?
There always seems to be something 'lost' between the documented results of a test from the lab, and the interpretation by the doctor. Granted, it is the doctors job to interpret, but it is often directed by the amount of information he/she has, as well as their personal bias. It is like my job as a teacher. I speak and give professional advice based on my experience and knowledge. In no way can I know everything, or see all that the parent sees. With that in mind....
Third: Stomach, small intestine and colon are all completely normal was translated from no definite diagnostic abnormality. It did not say no inflammation, but showed that the colitis was on the mend. GOOD news!
Fourth: Elianna does not show signs of EE at this time based on what she was currently eating. This is GREAT news as we move forward with the broths, and also shows that she may potentially have less issue with her trigger foods in the future if we can enable some intestinal healing. EE is a much more permanent label, which includes scarring and lots of esophageal pain. Though we can not get a complete confirmation that she does not have EE, I was thrilled that there were no signs of scarring, especially with the extensive amount of vomiting and reflux her little body has endured.
Fifth: Still waiting on the test regarding the various types of sugars. This is a highly specific test only done by one lab in the country (as I understand it). Sugar intolerance is primarily a secondary condition when there is much damage and extensive leaky gut syndrome. The body simply can not handle sugars. This has not been a large concern of ours at this point, but I believe that due to my desire to eliminate all other possible complications and our GI's not wanting to have to put her under again, he conducted this test.
Sixth: Outgrowing FPIES. *sigh* This is an FPIES mother's dream. But unfortunately not the reality for most, and is only medical speak for 'we don't know'. Outgrowing something is not a scientific explanation for anything. You can not conduct a research study on it, except to document when symptoms stop. On average, they THINK, it stops around 2 or 3 years of age. But that was based on no research and very few numbers. The medical community is now estimating 1 in every 1,000 children in the U.S. have it. But they don't know, and some doctors estimate there are more. They do not know if it is on the rise or previously undiagnosed.
Many doctor currently studying FPIES believe it is NOT outgrown. The condition can improve, and most likely will, if we can keep them alive long enough and provide treatment that does not do additional damage. But this comment shows that even the best of doctors are limited in what they can provide. This does not depress me or cause me concern, because there are things that can be done if we can just find each individual path. Just take a look at these results - mostly GREAT!
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 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.
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