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Ugh! It was so sad!
Her symptoms were: rashes, vomitting, diahrea (sp?), horrible diaper rash, mucousy and bloody stools, poor sleep, extreme fussiness. I was really confused at first bc I couldn’t understand why she couldn’t tolerate veggies or fruits but the doctor explained that everything has proteins in it. So thats why she could only do an amino acid based formula. She still has an intolerance to milk protein but thats a piece of cake now that she can eat other stuff. She still is on 1-2 bottles of Neocate a day bc I can’t get her to drink soy or rice milk…nothing but water for her! She even hates juice!We are still on cloud 9! I had it in my head that she wouldn’t outgrow this until age 3…so we are just thrilled!
That’s awful. No baby should have to go through that
I’m so glad she is able to eat now. What exceptional parents you must be to get through all of that! 
The reason I asked about the symptoms is that I’m always wondering if Caden could have had something I was unaware of, because nothing I tried really helped him (only time helped), and it helped to get the breastfeeding issues under control (OALD).
He definitely doesn’t have that though.
Aww..poor sweetie. I’m so glad she’s eating real food now!
So what does she like to eat? She must be so happy to be eating real food finally!
She loves anything and everything that is junk food!
Except for french fries. We were doing Mcnuggets some but they upset her belly bc they have milk in them and I didn’t know it…opps! She loves apples so much, dried, fresh, dehydrated…every kind but sauce. And she loves Cracker Barrel corn bread, which I know it surely has milk in it but it doesn’t bother her for some reason…weird! So she eats a lot of apples, safe chicken nuggets, veggie sticks, waffles with flaxseed and oatmeal squares…her palate isn’t very big but at least she’s eating something! That is so wonderful
I said a prayer that she will continue doing so well!
That’s wonderful!!
I’m sure she’ll add more healthy and yummy foods to her palate soon. I didn’t know chicken nuggets have milk in them either. The milk problem is weird with me too. I can eat pizza but if I drink milk or eat ricotta cheese I’m in pain for hours. It’s very strange. Hi Tracy,
I’m so happy to hear that Addy has outgrow her FPIES and is doing well on “real” foods!
I have a question for you – how did she become diagnosed with FPIES? I mean, how do you determine if a child has FPIES as opposed to MSPI or MFPI? The reason I ask is that I’m concerned about Paige’s poor tolerance of anything other than Neocate, and I’m wondering if it could be more than MFPI. Would I know before now if it were FPIES? Thanks so much for any input!
There is no “set in stone” way to diagnose FPIES. We went to see many different doctors, had RAST done (neg), had skin prick allergy testing for MANY foods (all neg), had an endoscopy after Addy had been on only Neocate (no solids at all) for 5 months…she was 12 months old when it was done. She had time to heal. They took biopsies to test for Celiac and another problem that i can’t recall now (all neg). They took pics of her esophagus and intestines and all looked completely normal. The Neocate had done its job! Yay! And at that time our allergist and Ped GI diagnosed her with FPIES. All of her symptoms (forgive me if I am repeating this…I can’t remember who I have told this to) were: extreme diaper rash constantly no matter what we did, bad gas, blood and mucous in stools, reflux, vomiting 24/7, fussiness and some more that I think my mind has let me block out since it was all so horrible watching her go through that.
Those were the symptoms before Neocate only. Breast feeding (doing TED), Nutramigen…did not help her at all. I hope that helps some…if you have any specific questions, feel free to pm me or post here. I hope you little one gets better! Oh, by the way, I read somewhere else that you little one was really wanting solids…IMO, I would hold off as long as possible. We waited until 16 months and Addy is a perfect little toddler. She walked at 9.5 months, talks, and does all the normal toddler stuff!
BM or formula is enough nutrition…I was worried about that and it was so hard not giving her food when everyone else’s babies were getting to eat real food. In Addy’s case though, that was the best thing that I could do for her…her body couldn’t handle food and now she outgrew FPIES quicker than I had thought she could and I believe it is because she only received solids for a short time during some food trials around 6.5 months. She didn’t know what she was missing bc she had never had them. just reading this now…
whooooohoooooooooo!!!!
so happy to read your news!!!
(if you don’t log on, then you won’t see your Pms…if you make your email accessible via your profile, no one can see our email, they just fill out an email form & it goes to your email box…just a thought
)Hooray for Addy! Congrats to you, Tracy for sticking it out with the Neocate!!! I am soooo happy for your family!!!!!
Tracy,
Just wanted to tell you how happy I am for you and Addy and the whole fam!!! What a relief for you guys and SO awesome that Addy gets solid food! Yay! I’m sure it’s been a long hard road for all of you. It sure gives me hope though! It does end SOMEDAY!!!!! Hooray for hope!!!
I am a mother of two and have never used a forum before so please excuse if I am a little technology illiterate.
My first child Oscar had reflux and was protein intolerant the first 12 months were really hard. I was really relieved when our second child Elle thrived from the start gaining weigth and considerably settled in comparison to her brother. However around 5 months she got hungry and I started to introduce food and everything went wrong. She has been diagnosed with FPIES to rice after being hospitalised. I am totally confused and was hoping to link up with any parents who have had children with this condition. As I mentioned she was thriving on breastmilk until we introduced food. She seemed to manage veggies ok so we thought it was rice only. However after being hospitalised with the rice reaction I have tried pumkin twice and both times she has been quite sick, my specialist has suggested I try eliminating dairy from my diet and putting her on soy formula as I have strated giving her top up feeds with bottles as she is hungry. I cant see why this would help as on breastmilk and the top up formula she is fine. Do you have any experiences you can share?
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