Evan's GI appointment

Well, I took Evan today to his GI doctor and he thinks Evan has EE and/or FPIES. His symptoms are all FPIES, I looked into EE and it does not seem likely at all... He is still only on breastmilk and Neocate Nutra. His GI doctor said if he TRULY had FPIES he would not be able to tolerate breastmilk....NOT TRUE AT ALL...I need to just put all my faith in God. I know whatever the case is we will be okay. So next I need to schedule an upper GI and biopsy...I guess we will see how this goes.

A New kind of Normal

Well, Evan is still breastfed, but he is on Neocate Nutra as well, twice a day. I tried Neocate One+, he seemed okay, then after only a couple days, I tried Neocate Jr., which he failed. He had a milder reaction, but only had a tiny amount.. there is nothing worse than going into your childs room and realizing they had a reaction in their sleep. Their was vomit everywhere. Now I am not sure about trying the One + again... I guess we'll see...I also feel so alone as far as resources...I understand why, its just hard trying to figure it out....the Lord is with me. All I can do is pray and let Him guide me. But if there is anyone who has some good advice...it seems his list for the "no foods" are: dairy, soy, oats, bananas, apples, pears, Neocate Jr., sweet potatoes....i think thats all of them. I might try carrots soon...I am going to wait thought considering he just had a mild reaction..

Update on Patch Testing

Well, his doctor informed us he was negative for everything, BUT he obviously definately has FPIES, the reason why is because it is experimental and some kids react while others do not. Now, I am just annoyed with the whole process. But I also got a free sample of the Neocate Nutra that I will try when I have a day off. We'll see how that goes. He is seeing a nutritionist nest week who is actually familiar with FPIES, so I am trying to stay positive. But yeah the patch testing failed.

Patch Testing started

Well Evan went to Childrens in Boston yesterday to get his patches on for the patch testing. They are testing dairy, wheat, eggs, apples, bananas, soy and oats. I take them off tomorrow but so far, no sign of any kind of aggitation with them. Unfortunately I cannot see if he is already reacting to them, although it looks like he could be to 5 out of the 7. So I guess we'll see about it. I take him back to Boston on Thursday to get them removed and his Doctor will evaluate it. He is still solely on breastmilk, and only weighs 17 lbs, according to his pediatrician in his 5th percentile on height. He is really only maintaining now. But I did get a sample of Neocate Nutra which I will try after Thursday and hopefully that will do it. It is for people with protein intolerances. It is all amino acid based... hopefully we'll be okay with that one!

Another Fpies reaction!

I just got back from the hospital with Evan...we tried 2 baby spoons of organic oatmeal , a reintroduction because he seemed okay with it months ago, 3 hours later, he spit up.....then wanted to nurse-which is what he did the last time, then threw it all up......Every couple minutes he would throw up. About 30 min in, I called my husband because I needed him to stay with my 2 year old so we could yet again make the 10 minute journey to the hospital....my husband came home and Evan was becoming lethargic so i packed up and headed to the hospital.

WHAT A DIFFERENCE IT MAKES WHEN YOU HAVE A LETTER, they took him in and started an IV within 10 minutes. After 2 boluses, he was totally himself! Thank God!! So now we're back home and I will have to start the reintroduction process again.....this time maybe we will do fruits-other than apples and bananas..... This is my new normal too.

Yaaayyyy!! A bakery that could be beneficial!

http://www.babycakesnyc.com/menu.html



MMMM.... They specialize in dairy, soy, eggs, wheat and gluten free baking!!!! I am already thinking about Evan's first birthday.... I might try some just for me and see how it is!

A date for patch testing!

Finally!!! October 12th,a Monday! Yayyyy!!! Evan is 8 months old and still exclusively breastfed, which his pediatric allergist said was okay. He wants me to start solids very soon again, but I am afraid! But I already know he has reacted the worst to dairy and just traces. I did find organic oatmeal with no soy or dairy. He had it at 4 months and didn't react until I tried other oatmeals with soybean oil and dairy. And I only kept switching because he would throw up or seem uninterested in them. I am nervous, but needs a better variety now. So, after I start the oatmeal, I will try pears, slowly! Everyday gets easier coping with the face that he even has this, but I know we are not alone. I also have a much stronger relationship with God as well, which I think has really been helping me out! I will post again when we do the oatmeal!!