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!!

Evan's episode

7/21/2009

Well, first off, I have been exclusively breastfeeding my son Evan for 7 months. Once in a while, maybe a total of 5 times, I have given him either rice cereal or oatmeal. He always threw up, but I always assumed it was something else; maybe he was full or he wasnt quite ready. Well, Tuesday, I was over my sisters house and she went ahead and gave him custard, which I was fine with. He did fine for 2 hours.....and then the scariest moment of my life happened....not right away. He projectile vomited one time. I cleaned him up and put him in the tub. I took him out and he kept on throwing up....awful. I knew something wasn't right. I laid him down in his crib and I noticed he wasn't as alert as usual. He was limp, completely lethargic. His breathing was fast but short breaths. His eyes were little slits. I took him out and tried to rouse him....nothing. He kept throwing up and I decided after 40 minutes from the beginning to take him to the hospital, where they insisted it was a stomach bug.....I knew better. After 2 hours, YES 2 HOURS, they finally gave him fluids intraveniously. After the whole bag (10 hours), he was much better, no fever throughout this whole time, from the time it started to the time he started improving was about 6 hours. Then I remembered the custard......
So, I finally got home at around 3 am, but I couldn't sleep. I knew ot was something else. I googled allergy to custard, lactose intolerance....then, I found FPIES and read about it......to my surprise, I pretty much knew right then and there that FPIES was most likely the problem..... I was scared. I took him into Boston to see an allergist and he was diagnosed with FPES (food protein induced entrocolitis syndrome)....scary as hell.....So, I am still breastfeeding Evan, and probably will have to until I can't anymore....but I have to do what I have to do...and that's all I can do. So for now.....I am relieved with a correct diagnosis from Childrens in Boston. I am not looking forward to trying anything else....but for now, he cannot have dairy, rice, oatmeal, apples, sweet potatoes and bananas....it will be a slow process but I know I have a great support system and I just have to have faith that we can do this. It may be hard, but not impossible.....