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So LO is EBF and has always had green, watery stools, but since he was happy and gaining, the docs said not to worry about it. But between 5 and 6 months, he stopped gaining weight. So we started him on food and discovered LO (little one) had FPIES. Delayed vomiting to: avocado, oatmeal, squash, banana, and white potato. We started fortifying his bottles with similac sensitive to try to help him gain weight- and he put on a half pound from 6 to 7 months. I cut dairy and all of his triggers from my diet and his stool looked better- still watery, but more yellow. Tried moving him to alimentum, but he refuses it. Tonight we tried giving him a similac bottle like we have been and he had an acute reaction: dry heaved repeatedly for 2 hours.

I have been to the pediatrician, GI, and allergist here in the Florida panhandle and none of them are familiar with FPIES or how to help us. I currently have appointments for an allergy skin test and an appointment with Another GI, but they can’t get us in until Dec 20th.

I’m going to try putting him on Neocate next, but I’m worried he won’t take that either 😞. He takes 15-20 oz of milk a day for an 8 hour separation, but I can only manage to pump around 12 oz.

I’m just starting to get despondent: he reacts to every single food we try, and it seems like we can’t find ANY doctors who know how to help us. He won’t take formula, and I can’t make enough milk for him to gain weight.

I just don’t know what to do. I’m crying as I sit here holding my baby. What do I do??

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Please keep trying to find a medical team to help you- it is obvious you need medical advice.  Hopefully, someone from this organization or Florida will read your post and can recommend.

Yellow, watery stool for my son was always an indicator of a reaction with a formula or "milk" or something in my breastmilk.  There doesn't have to be a severe reaction for there to be a chronic problem with a "milk" or formula.

Elecare is another formula option if he refuses to drink Neocate.  My son reacted to all formula and refused to drink Neocate.  Elecare didn't work for us in the end (but others have had good success), but he liked it.  I mixed it slowly with breastmilk until he tolerated it by itself.  I was lucky to be able to breastfeed until we finally switched my son to Neocate Splash.  Splash is tasty, but it can only be used by kiddos older than 1.  

Your son will likely react to most foods you try until his symptoms are better under control.  We would get real fails, as well as "false fails" when his symptoms were out-of-control.  Quite the puzzle to figure out . . . 

Although all FPIES cases are different, we had success with baby food (Gerber)- we stayed a very long time in that stage, because real food was difficult. 

I can recommend doctors in Orlando if that helps. 

My oldest didn’t gain from six to nine months but didn’t loose and he was ok. I know that may not help you! Some doctors we saw at the time threatened me and others said it was fine as long as he didn’t loose. Kids also naturally slow down growth as they gain mobility which makes it tricky as that varies from child to child.

my kids also go to the FPIES clinic at CHOP in Philly.

My kids can’t take any formula and I am not a much restricted diet to avoid their triggers. It takes time and trial and error to figure it out. But through journaling you may be able to find a “limited ingredient” breast milk that works.  You can do an elimination diet or one target item at a time. Keep your fluids up to maintain supply. Your supply is likely fine in quantity but contains something causing a reaction so helping and hurting at the same time. 

Isyour child on reflux or other meds? My son was reacting to inactive ingredients in his meds.

And know that you will get advice from doctors that simply isn’t valid along the way. Get many opinions and do what is right for your family!

good luck!!

We had a similar experience with my youngest where the doctors were not concerned because he was gaining (very slowly) until he wasn't anymore and everyone panicked.  I was exclusively breastfeeding at the time too.

I ultimately had to give up breastfeeding which was an incredibly difficult choice to make, especially since so much of the literature makes it sound like the safest option and potentially the only option for kids with fpies. At one point we were so afraid that he wouldn't be able to eat any formula that I relactated just to have the option (after all, you can control what you eat but can't control what they put in the formula). 

In the end, he thrived on elecare, and it was the right choice because as we introduced solids I discovered I would not have realistically been able to figure out what he was reacting too (most of his reactions are diarrhea often 24-72 hours later and it's to so many things that are just completely random).

I suggest trying an elemental formula and continuing to pump to maintain supply while you try it out as a back up.  You'll know within 2 weeks if it works.  I was also afraid he wouldn't take the formula, but he did.  The first days he didn't take much, and it was very hard because he just wanted to nurse (hadn't taken a bottle successfully at that point).

Also, just because one elemental formula doesn't work, don't give up -- We tried neocate first for 3 weeks, and  he continued to have diarrhea and malabsorption, but within days of starting elecare he stabilized.  

I know that people have had the experience of not finding any formula that works, but if I were you, I'd try all the elemental formulas first.  Once the weight gain stops, it can quickly become losing weight and it gets out of hand fast -- For us, we didn't have time to try eliminating anymore (plus, we'd been at that for 4 months already with limited success, as it sounds like you have been too).  I'm not saying it can't be done -- just that it may take too long -- and you can always start to eliminate things while you pump and give the formula so you have that option if formula doesn't seem to be working.  (And make sure that you have a good sense of what foods to avoid if you do total elimination -- the typical total elimination diet is mostly high risk foods for fpies.)

Crazy question but have you tried goat or sheep milk?  The are significantly less adulterated than what we do to dairy.  Our nearly 6 year long battle (including lots of vomit, harsh and foul diarrhea, ear infections, no sleeping. . . . ) finally resulting in me identifiing all the reactions being chemical additive based.  Have you tried organic and high quality bottle water?  I have had to change to boiling/steaming with acqua panna water and baking/roasting on non silicone parchment to keep any potential leaching from the situation.  Non-stick spray, canola, veggie oil are all definite no-no's too.  Don't forget that even most bottled water has arsenic , fluoride, or other no good things.  When you do food testing, so many other things are involved.  Even residue from cleaners (dish liquid is packed with GI damaging "sticky" chemical).  Call/text if you want. . . 240-416-1663

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