Gastrointestinal Allergies (Bad Reaction to Alimentum)

MistKeeper

Hi Ladies,

I'm putting this out here 'cause I don't really know which board post it should go under: it's a little bit breastfeeding, bottlefeeding, and medical issue. So my 3.5 month year old isn't gaining weight. We found out he had food allergies because his stool tested positive for blood. The doctor recommended a dairy free soy free diet from me. I'm doing it. Above and beyond: dairy free, soy free, treenut free, peanut free (Still eating eggs).
The doctor also recommended Alimentum. DS would eat it, but then a few hours later wake up in horrible stomach pain with liquid diarhea, horrible gas, and three hours of screaming followed by hours of stomach discomfort. This was after being well burped and held upright for about an hour and only 1oz of formula. I'm thinking that he's still allergic to it.
My doc wasn't in the office today, but I talked to another doctor who said it was okay to start Neocate. This is the most hypoallergenic formula on the planet. DH is giving it to DS right now and I'm just all terrified that it's not going to work and then I don't know what I"m going to do. Regardless, I'm going to get a referal for a GI specialist, but I keep getting lost in an anxiety land of "what if there is no food he can eat and he dies". These past two weeks have been some of the hardest of my life, and I have scoured the internet for bad reactions to Alimentum but haven't found any with lots of details.
Has anyone else had this problem with a previous child? Was there a light at the end of the tunnel? Did Neocate help?

jmohio

I went down a similar path. We tried 6 different formulas before going to alimentum. And we're told if that didn't work we would move to neocate. I actually just posted about all our recent issues in a post and are actually back in the hospital for a stay tonight. She didn't eat again yesterday. We also see a GI doctor and he is the best and has eased my mind a lot!! Just know they can do things for him if he can't eat. I know it might suck but he will have a stay in the hospital if they are at all worried about him (other than the tests and things it's not as bad as I imagined)! 

I know this isn't the reassurance you were probably looking for but know there is someone else going through similar stuff and you can get through it! And it seems so scary our little one stops breathing and turns blue with reflux and spit up blood on me and most recent had an allergic reaction where her eyes were swollen shut, hives all over her face. You will get through it. 

MistKeeper

@jmohio Thank you. I have almost daily appointments with either the pediatrician, gi, nutritionist, or lactation consultant. Next GI appointment is tomorrow. If he doesn't gain, they will hospitalize him. I'm worried, but he's taking the neocate to supplement, so things are going a bit better. My hopes are high.

I'm sorry your little one is going through something so similar. It is horrible. Thankfully my little one hasn't spit up blood, and this is definitely bad enough. Hugs for you and your family.

adiaz132003

I'm so sorry you guys! That's sounds so rough.  Have you tried a total elimination diet.  Might be worth a shot since you cut out so much already.  It sucks but it may help.  You only do it for like 4 days then slowly add food back in.  I know one Mon who realized it happened only if she ate gluten or soy, and another (luckier) mom found it was soft cheese.

danjoly

Alimentum still have casein from milk. In true dairy allergy there will still be bad reaction to it. Although consider "hypoallergenic" it's still not a 100% dairy free formula. 
I hope you get some answers!

MistKeeper

Thanks. That's pretty much what I'm doing, but adding things in is hard. Thursday and Friday were amazing because we got the great news that he gained some weight this week (we're on a new reflux med and supplementing with Neocate which we weight down with rice cereal to help him keep it down (I'm covered in spit up on the reg anwyway, but yeah...)), but today I tried a gluten free pancake mix. The only new ingredient is tapioca, and it did not go well. It wasn't super horrible, but when the baby starts crying after taking a sip of my breast milk--his normal happy place-- it breaks my heart a little bit. I just have this constant anxiety about whatever I eat hurting him, and my family keeps trying to pressure me into giving up breast feeding completely. Meanwhile I think it's better to continue. This way before I introduce solid foods I can try it again, and if he gets a reaction from my bm then I won't give it to him. Whereas without this, introducing solids sounds terrifying.

jmohio

We have been put on Zantac and Prevacid with the alimentum and oatmeal to thicken it to help with the reflux. I will say our munchkin is having reactions on her face still that they are unsure what it is from so we are still on GI appointments  we are actually moving states to add to it... nothing like stress. 

If I can give you any happy news it is that our GI told us to start purees and that might help with her issues. We started thicker oatmeal a few days ago and she did great so we moved to sweet potatoes yesterday. I am in hopes that it will help her. 

I truly hope you get this sorted out too. It is stressful to have a newborn but having these issues puts a whole new meaning to the word stress. Truth be told I have been put on anxiety meds to help ease some of it and I will say it helps with some of it. We had a stay at childrens hospital and I will say I left feeling a little bit of hope that things will look up. Our doctor told us she should get a little better now she is 4 months and hopefully be off meds by 6 months. 

MistKeeper

@jmohio I'm glad things are looking up for your guys too. I've honestly been thinking about seeing a therapist again because this whole thing is making me feel like such a mess. Things are a bit calmer now that he's gaining, but in two months I plan on starting more than just rice cereal with him, and I'm terrified about introducing new foods. He's already been allergic to so much randomness that I can't even predict what will happen. We have an appointment with an allergist, but it's not until February 2!  Have the anxiety meds been helping? I have a feeling that most babies aren't quite this level of stress, but at this point I'm terrified to even consider having a second.

On the plus side, his four month check up showed he'd gained 11oz in 7days! Wow... apparently the neocate is fattening him up. :-)