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This is a blog for my son. He has a rare auto immune disease that causes his body to attack food like it would a virus making it impossible for him to eat most any foods with out getting very very sick. This is a record of our ups and downs, doctor visits and procedures. Our trial and error life of finding out what foods are safe for our son to eat and eliminating the ones that are not from his life.

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Friday, February 17, 2012

New Direction

So much has happened this week! Where to start....

Last post I had said how we weren't 100% on board with re-introducing rice, but that I felt like I would need to start trusting John's doctors at some point. Well I'm going to start listening to my gut from now on!!!
John has been having severe symptoms since THE DAY we started rice cereal. I called his GI Doctor to notify him of this and he advised me to reduce the amount he was getting and if that didn't help to cut it out all together. Well I was only giving John one serving everyday and some days none at all, so I just cut it out all together.
Then I bought a different brand of PolyVisol vitamin because I couldn't find the Enfamil brand at our store. John started to throw up his first bottle every morning! I looked at the ingredients and the ONLY difference between the two brands is 'Oil of Orange'!! I threw that out and went in search of the Enfamil brand. This means that there is a pretty good chance that John is also allergic to citrus or maybe just oranges.
John is still having severe symptoms. Even after removing the rice and orange oil. The GI Doctor called in another round of steroids. (This is the same Doctor that tells us every time he actually sees us that he does not like to prescribe steroids and only uses them as a last resort and has now called them in twice in two months over the phone with out even looking at our son)

Yesterday, the day I was supposed to pick up said steroids, John is throwing up again and coughing, gagging, the usual EoE symptoms for him, when I notice that his lips look blue! He has not stopped breathing and is acting normal, aside from the gagging/coughing. I watched him for a bit and his lips turned back to pink but I was worried so I called Doug to come home. I called his pediatrician and they said to come in. While waiting for Doug to get home with the car it happened again after a coughing/gagging episode. I called back the pediatrician and told them to cancel our appointment, that we were just going to head to the ER. So Doug get's home and off we go. They did some xrays of his chest and naturally it doesnt happen while we were there. He didn't even gag or throw up after eating!!! They diagnosed him with 'reactive airway disease' which pretty much means he has inflamed airways. That could be caused by a cold, bronchitis, the flu, or just excess coughing due to reflux or excessive vomiting. So we took John home with advice to bring him back if his lips turned blue again and his tongue did too, that if it was just his lips he was okay.
That night I had a meeting set up with another local Mom who's eight year old son has EoE. The longer I talked about our experience, especially lately with the re-introduction of rice before a clear scope, the more she got agitated and upset! She said she has never met a family dealing with EoE who has been happy with their treatment with this GI Doctor. She strongly recommended we  get John in at Cincinnati or Greenville, where they have more experience with Eosinophilic Esophagitus. She also confirmed our ideas that because John is allergic to corn that he could also react to the corn starch in the 'hypoallergenic' Nutra and Duocal. Something I have questioned the Nutritionalist about over and over again. It's rare, but it is possible for a person like John to have a reaction to the whole food rather than just the protein of that particular food. The thing with Nutra and Duocal is that the proteins are already processed out of the corn starch before the person ingests it. John may be one of those rare cases who reacts anyway.

We decided that doing this scope on the 27th is pointless. We would be putting John under anesthesia for no good reason. With out the steroids we would know it would come back positive because he is still having symptoms, with the steroids we know it would come back clear because he just had a round of steroids!! Why do it then??
I also had to cancel his speech therapy session because we no longer have the rice and we are stopping the Nutra too so that the steroids we are giving him now don't end up being a wasted effort too. This means we are back to an elemental formula diet.
I am so frustrated that we have been set back probably another three months because this Doctor advised us to start rice too soon! The Doctors at CCH (Cincinnati Children's Hospital) do not allow their patients that fail corn to have anything with corn starch in it. If we had been there or with a competent Doctor here we would not have been given Nutra or Duocal after we found out that John is allergic to corn! I hope that GCH (Greenville Children's Hospital) can get us in quickly. I've been told they are comparable to CCH.
I have called his pediatrician to get a referral to GCH because right now we can not afford to go to Cincinnati and there is an 8-12 week wait to get in there.

Now, here is a picture from John's 14 month photo shoot!

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