The Question Remains (11/10/11)

For those of you following our struggle with Zachary’s tummy, I first want to thank you for your care and concern. I second want to thank you for your prayers, your encouragement, your advice, and your support. We are continually reminded of how blessed we are to be surrounded by so many people who love us. So THANK YOU! And third, as promised, I want to give you an update on what we found out from the Doctor this morning. Sorry in advance for all the “facts”, we’re still trying to wrap our heads around all the information we received today.
The disease that we thought Zachary “might” have (as mentioned in my previous post) is called Food Protein-Induced Enterocolitis Syndrome (FPIES). In summary, it is a gastrointestinal and immune response to particular food proteins – it mimics food allergies in babies. Unfortunately there is no way to diagnose this. The Doctor can make a strong assumption based on his symptoms but that’s about it. The way to treat it is to remove common allergens from your diet for 6-12 months while your digestive system has a good chance to develop and it should go away on it’s own. Eventually you would be able to eat whatever you want without problem. If Zachary is diagnosed with this, it will only affect him until about 18 months of age.
After talking to the Doctor today, he thinks it’s possible that Zachary has FPIES but he also thinks it’s possible he has another disease, called Eosinophilic Gastrointestinal Disorder (EGID). There are three different categories of EGID: 1) Inflammation of the Esophogus, 2) Inflammation of the stomach and small intestine, and 3)Inflammation of the large intestine. EGID is also triggered by certain foods. The good news about EGID is that it can be diagnosed with a biopsy of the intestines, the bad news is that there is no treatment and it will be a lifelong disease. If this is what Zachary is diagnosed with, there is a chance he will have to go his entire life without many common foods.
So at the appointment they did a skin test:
All of the allergens came back negative.
In theory, this kind of leads us to an answer because FPIES and EGID both are intestinal problems and wouldn’t cause skin reactions to allergens. Had he reacted to a skin test of allergens it would have eliminated the possibility of FPIES and EGID. On the flip side, not all babies with food intolerances react to a skin test, so it’s not extremely helpful information.
Next , they gave us a slip to get blood work done which we won’t be able to do until Monday. If the blood tests also come back negative, we are even further led to either FPIES and EGID as possibilities, but again, it isn’t a sure answer either way.
So the plan right now is for me to eliminate all things from my diet that are listed as common triggers for FPIES and EGID. This includes dairy, soy, egg, wheat, rice, and poultry. If Zachary’s pain improves over the next 30 days I will continue this diet until he is 16-18 months old. (I will have to nurse until at least that point since Zachary can’t have cow’s milk) At that time I will re-introduce one allergen at a time to see how he reacts. We hope and pray that he has outgrown the problem and we can move on. If things don’t improve over the next 30 days we will be sent to a Gastroenterologist at Children’s for a biopsy and further testing. The doctor seemed pretty positive that Zachary does have a stomach issue that goes far beyond just a food intolerance. There is also a chance that it’s neither FPIES or EGID and it’s something completely different that only a specialist can diagnose.
I’m sure just about all of you are thinking “what about formula”. To answer your question – there are options for formula. They are VERY expensive options and they may or may not work. It is unlikely that this far into breastfeeding Zachary would take any of these formula’s as they are known to be especially foul tasting. And surprising enough, with as many problems as we are having, I absolutely love breastfeeding. I do not feel hindered or discouraged about altering my diet so drastically. I am rising to the challenge and look forward to working through this with Zachary instead of letting him go through it alone.
So for now, I’m going to do my best to continue to watch my diet closely in hopes that we can get him feeling better, but unfortunately, the question about Zachary’s tummy problems remains unanswered.