Another Reaction

Well, Evan decided to try and grab a cup of milk off the counter and pulled it down, it spilled on him. I didnt think any got into his mouth, but a drop or 2 must have after I wiped his mouth out. I called out of work thinking he probably would not react. WRONG, he started being emotionless after 2 hours of the incident. Within 20 minutes of his pale emotionless face he projectile vomited 3 times and just looked like crap. His lips were losing color, he was lethargic and was very uncomfortable. I feel so alone sometimes. The sucky thing is he is only eating Neocate Nutra and water-that is all, he has reacted to everything. Its tough, i dont even know how to go about toothpaste...??? I want to try hempmilk but am afraid. My goal is to try it Monday morning. I figured I should give it time between reactions, he is only 20.6 lbs at 20 months almost...So far he has failed: dairy, oats, soy, carrots, peaches, pears, apples, bananas, Neocate Junior. I am at a loss here ladies, i need help...words of advice? I just dont know anymore...

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!