I have this other blog. I started it before Ellie's, and I never really worked out the focus of it. About 5 months ago I just quit writing on it because it felt like too much of a diary, and I have been uncomfortable putting so much of myself out there. Recently, I decided that I wanted to get back to it and blog more about our home school endeavors and my personal junk, so I was browsing through old posts.
I came across the post I made at the time of Ellie's diagnosis, and it stopped me cold. Not only did it bring up the emotion of that diagnosis, but it showed me how incredibly far we have come in such a short time. Ellie has made progress that was not expected, and we have chosen a path of healing that is exactly the OPPOSITE of what mainstream medicine recommends. I also appreciated the reminder that our favorite GI never fully bought into the 'she will out grow it' phrase. This phrase has been a personal pet peeve of mine since day one. 'At some point their intestines mature'....'They tend to no longer react'....blah ditty blah. Hooray for some children that at some point their intestines have healed, and they can eat. They, by 2 or 3 years of age, have been on an elemental formula that their body can thrive on long enough to see healing, and be able to begin eating food, following a strict method of introducing them one at a time. For those of our kiddos with a severe corn intolerance, we may not be so lucky.
For the sake of insight, and a glimpse into the beginning, here is a copy of this post:
Who Would Have Thought? June 21, 2010
Today I headed to the Pediatric GI specialist for Elianna's follow up appointment. Last week we received the good news that her blood tests came back negative for Celiac and for a whole gamut of allergies. I entered the office and jokingly told the doctor I was hoping I would show up and he would just tell me she had a rough first four months before her dairy protein diagnosis, and that all she needed was a good round of probiotics and would be good to go. He laughed. And then told me, 'yeah....no. We can fake throwing up but we cant fake diarrhea'. Darn.
We love this office. These doctors are incredibly on the ball and always have the latest information on anything random. Dr. Barad can spout random facts about anything such as 'well, yes, actually, Sub-Sahara Africa has the highest incidence of Celiac's in the world with 1 in every ?? having it'. I don't even remember the number he gave. So today I felt blessed to have such a knowledgeable doctor, but not so happy at the diagnosis.
Who would have thought that I would be told my 10 month old daughter can not have ANY protein. None. This apparently occurs in over 50% of infants diagnosed with her dairy and soy processing disorder. What she has is relatively new and is called FPIES (referred to as F-Pies), and stands for Food Protein Induced Enterocolitis Syndrome.
The bad news first:
No protein for now, and most likely at the earliest will be 18 months of age. The treatment is to get nutrition from an extensively hydrolyzed casein formula, which is what we are already spending between approximately $500 and $700 a month on to feed her. She can be on this formula until she is 2 if she has to be, according to the pediatric nutritionist. She may not have grains, legumes or meat. Did you know that rice has protein? There is also a list of highly allergic foods that the lucky 3% of kids with this diagnosis get to deal with. Top of the list are rice, sweet potatoes, and bananas. Geesh. The top things we are supposed to feed when beginning solids! No wonder we are having problems.
The good news last:
Perhaps with this diagnosis we will be able to get the insurance company to say the formula is actually medically necessary and they will pay for at least a portion of it. Food will be easy since she is on a restricted diet of formula and fruits for the next six weeks. We are to start with apricots, plums, and apples, the three least allergy prone foods for all humans anywhere. (again, who would have thought?). The majority of these kids outgrow this syndrome between 2 and 3 years of age. GREAT NEWS. (however there is a long extensive process for introducing these solids successfully).
What now:
We have a referral in to the allergist. Our GI doctor said he is comfortably the initial diagnosis and saying that she is on the FPIES spectrum, but wants the allergist to examine her and weigh in as well. I have been instructed to purchased fresh, organic fruit that is in season and made food for her. And now I begin the process of trying to learn what kitchen items can retain allergens (anyone know about cast iron pots and pans?).
I think that is all. Though my brain is pretty fried from rethinking and processing. I am so happy we have a diagnosis finally. Whew. I need a glass of wine!
I will follow up later with another post explaining how this is diagnosed and how it falls in the allergy category. Time for dinner.
Showing posts with label outgrow. Show all posts
Showing posts with label outgrow. Show all posts
Saturday, May 21, 2011
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.
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!
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