FAILED PEACHES

Well, I decided that carrots, breastmilk and neocate nutra were not enough for Evan, so I tried peaches yesterday. He seemed fine ...til today. This morning at 8:30 am I gave him 1 baby spoon of peaches and he failed at 5:30 pm...8 hours later?! yes 8 hours later...I always though, "wow, that must be so hard on people that have to deal with waiting that long, cuz Evan is usually 2-4 hours..." Well I understand now. I am annoyed more than anything but I do have faith that he will be able to thrive more than he is... he is 19 lbs and is almost 17 months old. I have been debating trying the hemp milk, but am unsure about it...I think next will be buckwheat cereal. Anyway his reaction this time was a little different...he nursed like he always does before a reaction then right after , he projectile vomited EVERYWHERE and kept on throwing up...then was a little lethargic, but I waited...and he started playing and would throw up about every 20 minutes to a half hour, but remained in a playful mood after the first hour of the reaction, but it lasted for 4 hours this time which was the longest but most mild... I will update soon on what I decide to do...

xoxo
Jen

Well, its been awhile since I have blogged and I thought I would share some things. Evan is 15 months old and is still nursing and on Neocate Nutra twice a day and drinks some water out of his sippy cup. He is addicted to nursing....which is nice because I love the bond, BUT I will be happy when he is on other things. I am in the middle of trialing carrots with him and he does ok on the occasional Neocate One+. But I am not consistent with the formula because he wont take a bottle and drinks only from a sippy cup, so he doesn't drink enough. Sometimes I am so frustrated. He is 15 months and is the size of a freakin 9 month old, 18.6 lbs. I feel so stuck and alone sometimes in this and I feel so fortunate that I atleast have this and the support of you ladies. I want to try new things with him but I think he has aversions to food. He gags a lot and is on stage 1. But every day I give him a little more carrots and he seems okay with that.

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.