Hopefully I can explain this in a way that makes sense.
I have a 5.5 month-old LO who has been EBF. Through elimination diet following severe diarrhea, reflux, hysterical crying, hives, vomiting, and extremely low weight gain, we found out he reacts to the following foods in my diet:
He also had what appeared to be an FPIES reaction to rice.
Tried the following solids and he had hives, crying, stopped sleeping, vomiting, etc:
- Sweet potato
- Rice cereal
He does just fine on my BM with all offending foods removed, but is still gaining very poorly. We figured out he is hungry. My supply has always been a struggle. So he needs to be supplemented. My IBCLC, pedi, naturopath, and GI doctor all agree.
Problem is...I can't pump enough to supplement. And he's reacting to every formula out there. We've tried regular dairy, soy, alimentum, nutramigen, neocate, and finally elecare.
After three bottles of elecare yesterday he was projectile vomiting across the room, very fussy, and had diarrhea along with a rash all over his face.
I have no idea what to do now...
Two ingredients common to all of them (I think) are corn and soy. I have contact reactions to Elecare thanks to a really ridiculous soybean allergy. I react to refined soybean oil, too, which is why Elecare is dangerous for me.
Did you thoroughly eradicate soy from your diet when doing the elimination? Corn is ubiquitous and very hard to truly avoid, but it might be time to try. Also, it might be time to ask about a ped GI consult to rule out (or in) eosinophilic disorders.
Chasing DS since April 2007 and pumping for DD March 2013.
I just talked to a mother in a similar scenario who started making chicken bone broth. It was the first thing her son ever kept down. I don't know enough about it to point you in the right direction, but please look into it!
Momma to a weaning nursling DS1 (8/10) and expecting #2 (EDD 9/12). DS1 currently Milk, Soy, Egg, Peas, Peanut, & Tree Nut Free (hives/vomiting).
Is he currently taking meds for his reflux?
DD was on neocate, it was horrible, and never really fixed any of her GI issues. But it was better than nothing I guess. I know how it feals to have run out of options, but there are still some. If you can you need to see a lactation consultant and speak with them about how to get your production supersized, possibly finding diner milk (if that is something you would be comfortable with) I would also recommend finding a trusted and reputable chiropractor that uses red lazer therapy, and look into adding probiotics and healing gut foods to your diet aswell as your LOs. Good luck mama!!!
Melanie- Mama to my super hero daughter bravely battling brain cancer. www.fightformaddie.com and expecting 1/13!!!!
So sorry you're going through this! We similarly had a tough time with allergies and intolerances, and milk supply issues drove us to formula, too. My son is allergic to corn, dairy, and soy (and many other things) and did not do well on any formulas except Neocate. It's rare that babies truly can't handle elemental formulas. If you haven't visited yet, I'd suggest you check out http://community.kidswithfoodallergies.org/. The parents there have been an invaluable resource on my own journey. There is even a section of the forum dedicated entirely to elemental formulas and the issues you raise here.
When we first tried Neocate with my son, he reacted badly, too--projectile vomiting, screaming crying. It took a few days as his body adjusted. But let me tell you, I'm glad we stuck with it. It changed his life, poor kid. From what I've heard from other parents in similar situations, it's not uncommon for it to take a little while for their systems to adjust.
Hope this helps? Hang in there. I know how unbelievably miserable all of this can be!
Same experience as cmmst87. At first there was massive vomiting and such, then it stabilized. I have 2 kids with eosinophilic esophagitis. My 2 yr old still has Neocate as her sole source of nutrition. Cmmst87 is right these it is very rare that someone has a recation to elemental formulas, though some do better on one vs another. The corn and such in them are broken co completely down that Most that react to those items are not effected. My 4.5 yr old is a violent corn reactor but does fine on Neocate.
Please keep eosinophilic esophagitis in mind....your story sounds all too familiar. Hang in there...it is so so very hard.
You can check out this blog to read more about a similar situation (kid with allergies to elemental formula and Eosinophilic Enteritis, poor milk supply, etc.)...http://thepursers.blogspot.com
Have you looked into blenderized diets?
Corn was mentioned by another poster. It is difficult to completely eliminate. If you have a need to avoid corn, let me know and I will pass along what I know about that.
I have no useful advise for formulas. Sorry.
Dairy includes whey, casein, and butter fat for the very allergic.
It can be difficult with fruit and vegetables, since handling waxed apples and then sweet potatos can occur. The only true test would be growing your own, so there is no cross contamination.
Meats, if you eat them, may need some attention. I got to know a farmer at a farmers' market, and now am comfortable eating organic (not officially) grass fed beef. I don't have a good source for poultry. This is for you, while providing breastmilk, and your child down the road.
I don't know if any of this information helps you. I hope it will eventually, if not now.