5 mth Old- Next Steps?

Like so many others here, our otherwise perfectly healthy 4 month old had an acute response to a pea/oatmeal mixture after the third time offering it to her.  Textbook FPIES (from what I can tell): 6-7 vomiting sessions, about 5-10 minutes apart and beginning 2 hours after I fed her. She went limp and white and I was terrified. By the time we made it to the ER and into a room she was dry heaving and dozing intermittently. She woke up within 30 minutes smiling and acting like her normal sweet self.  

When we visited her pediatrician the following Monday, she was pretty relaxed about the whole thing. By that time I had the ER discharge papers saying "virus" in hand and print outs about FPIES because any non-moron could deduce a virus doesn't come on with that intensity and pass in an hour and half. She looked at the printouts and said, yes, I've seen about 4 children with this in 20 years of practice and they all outgrew it by 9 months. "Some doctors don't think it's a real thing."  That comment concerned me because I held our daughter in my arms, afraid for her life... I can attest- it is a real thing.  She never would officially say I think this is FPIES and her advice was to stick to breastmilk only until 6 months old, and then to wait 5 days between each new food. She said no grains of any kind- only fruits and veggies. She wouldn't recommend a schedule of what foods to try or in what amount. 

We're living in a more rural part of Texas right now, but we're in the process of moving back to Dallas in the next 3-6 months. I see that there is an FPIES specialist there. She's currently 5 months old, which means our solid introductions, according to this pediatrician, should begin in less than a month.  

My questions, to anyone who cares to weigh in, are: would you take your child to the specialist in Dallas BEFORE introducing solids? Or trust that the pediatrician here is competent?  @Luke's mom I see that your story is similar and recent. Where are you in your journey? What kind of doctor is he seeing now? 

I'm super nervous about giving her solids. The hospitals here are less than stellar. I just don't know what I'd do if, God forbid, this happened again or was worse...

Thanks in advance!!

Original Post

Get formula Rx so they don't go failure to thrive. We use elecare Jr. then begin your food trials using single source ingredients.  Focus on high caloric foods and then on nutritional ones.  The elecare is packed with vitamins so it gives you time to do this. Also google FPIES charts and see the pie charts which other FPIES kids react to   This gives you some navigation help  

Out little one was FPIES until we went to NYC to Mt sinai. They think it's not FPIES but something more rare called interopathy syndrome & fructase deficiency (fruits cause acidic stools which burn her bottom). 

We are currently trailing chicken. 

Thanks so much for the response @Ethanandveronica! I should have mentioned, she's EBF and is thankfully right at 50th percentile across the board, growing and developing well.  Since the 4 month episode, we've done no solids. She turned 6 months this week, so we've resumed solids again at her pediatrician's direction. I am consulting the FPIES charts for food introduction order, but how long did you all wait between each new food? Pedi is saying 5 days, but I'm reading 2-3 weeks?? 

We have an appointment in Dallas with the only FPIES specialist I could find, but not until she's 8 mths, so we're just crossing our fingers and toes trying to avoid another acute episode for now. 

The how long to wait thing is tricky.  we thought all was well after dairy/gluten/gelatin/questionable chemical incorperation/other food restricted diet and started to let them back in.  After three months and an eventual never-ending ear infection/diarrhea/food refusal, the pediatrician (most are not hip to working too hard) recommended new ear tubes and removing the adnoids.  Two ENT's recommended the same (because she failed hearing tests with the infections. . . Really?).  I found another ENT that was very in tune which recommended we revert the diet and monitor for ear infections.  All has been well since removing the FPIES triggers.

My point is that it can take a long time to see adverse reaction from various things.  Remain dedicated to monitor everything.  Sometimes even the most random ingredient is the culprit so, whatever you do, start by "eating clean" with no processing or chemical agents . . think steamed or baked.  Consider using the high grade meats (my FPIES'er will not eat store brand chicken or meat which makes me wonder).  Most importantly, keep a helicopter watch over your little one especially when family is around because they love feeding kids/babies but have no idea the chaos a cookie or cracker can do.  My MIL (a nurse) gave my little one a squeeze yogurt at McD's!  

I am so sorry your daughter had this experience! I held my own baby alone limp in my arms while my husband was at work and I can still feel the fear and terror I felt in that moment when I read your story. My heart feels for you and I cannot imagine having it called "not a real disorder."  We had a similar story with both children when we introduced oatmeal and EBF'd both kiddos (now at 13 months with our second).

I would go to the specialist and consult the FPIES foods triggers - we used that google survey and started with fruits and veggies. Thank God for whoever put that together! It was a lifeline for us when we were googling endlessly to try to feed our first. Another tip for EBF moms, our allergist told us to introduce heavily the triggers in my diet for a week at a time and see if the diapers showed any reaction (soy, rice, oats, dairy). That's how we determined we would wait for the other triggers - I ate many servings of each of these groups alone for a week while cutting the other trigger categories completely. Our first daughter outgrew her trigger by 2 years (oats) but FPIES is totally a real thing but as our allergist who specializes in kid's food allergies said is so new and unclear in the medical community that even seeing him is of very little use to us because he can't give us a clear path to follow or prescribe any tests. With that said, both our kids have only FPIES and no other food allergies or IgE allergies that we know of - so if your daughter has other triggers or symptoms testing may be helpful. He also explained the amount of food protein can cause a reaction (so our kiddo could eat one cheerio and not have an acute reaction possibly but if he eats straight oats he might react with just one bite).

I hope you are doing ok in your introduction! One thing our allergist said that made me feel better was if weight gain is ok (both our kids were 50% or higher and on their curve) then if you are EBF you really don't have to worry much about solid food intake. While it can be a heavy burden to make that much milk once I was back at work, it gave me less anxiety than introducing tons of foods and waiting the agonizing period of two weeks to feel like we had passed it. I read a phrase somewhere that "food before one is just for fun" so we took that approach and were very slow with introducing.

He also taught us that FPIES seems to be something that is related to gut development so the longer you can wait to introduce a trigger food/category the better because by 18months most kids won't react to anything even if they would have at 9 months. He said the gut develops in 3 month chunks (6-9 months, then 9-12 is more developed, then 12-15, then 15-18 is the most and most kids are clear for all foods by then). We wait until 18 months for rice, soy, grains other than wheat which our daughter was safe with before her acute oat reaction, sweet potato, avocado, etc.

That was a novel! Good luck!

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