20 month old new diagnosis

I don’t have a good answer here for you except to say I am so sorry that you’re going through this with an older kiddo. It’s quite difficult to explain fpies to care providers (and why I would panic over a stray Cheerio...) but it gets a little easier as you find more triggers and safe foods (in our experience). Good luck!

Our son wasn’t officially diagnosed until age 2; totally understand! I found it helpful for me to come up with a rote, 2 sentence explanation that I could rattle off to anyone - something like ‘He has a rare condition called FPIES and can be allergic to any food protein. He is at risk of septic shock. Please make sure not to feed him anything that wasn’t sent with him or pre-approved by us.’ 

It gets more normaL with time - give yourself and everyone a lot of grace!

Get a letter from the doctor that diagnosed your child about the booty drama something that says runny consistency is typical for him and sans other symptoms of illness he should not be excluded from care.

Start a food diary and note everything that goes in his mouth and have daycare do the same.  Then also track symptoms and you will figure out all triggers. A funny example from my oldest FPIES kid when he was that age - he swallowed and subsequently reacted to the corner of a business card. I kid you not!

good luck!! This is hard but you can do it!!

We had a hard time with people not believing us or trusting that we were doing the right things for our kiddos.  Close family and friends too.  It's hard.  Harder than I could have imagined.  But you basically have to weed out the doubters from your life because you just will not have time or energy for them.

Is finding a good nanny an option instead of day care?  Honestly, the difference that you spend on an in home nanny over day care may pay for itself for the lack of hospital bills due to dehydration as well as days off work you may have to take because of sudden illness.  There are soooo many variables at a day care and the incidental exposures are much higher.  Its also easier to keep more accurate records w/ less cooks in the kitchen.

We have had good luck with our letters from Boston Children's Hospital because Boston Children's holds quite a bit of clout in our area.  We have also used the term "Auto-immune disorder" instead of "allergy" because I feel like some people have a weird tendency to doubt the severity of allergies... which is crazy in and of itself, but true.

Good luck with everything.  YOu are not alone.  Feel free to reach out.

Mark & Julia

Hello! Sorry to hear that you are going through this with your son We’ve been there and know it’s incredibly difficult not only on your son but you as a parent as well. I don’t think others can imagine the difficulties until they’ve walked this path. I have to say getting the diagnosis is putting you on a path where things will be getting easier. The figuring out what was the matter with our son was a huge battle. And as for the people who don’t believe you, all you can do is continue to be your child’s advocate and keep preaching the things that people need to know to keep him safe. But I get it - it can be hurtful and frustrating to you! I’ve shed many tears over that part of the FPIES experience. 

I really think the other replies offered great advice. My suggestions would be to definitely have the letter from the doctor. We always had that handy.  The whole “not knowing exactly everything that triggered my son”  made me feel so overwhelmed and just made me feel like what do we do from here. I can so vividly remember feeling that way so I sympathize with you.  Our local children’s hospital didn’t have an FPIES department (we are in Pittsburgh Pa). They made us a team made up of an allergist and a gastroenterologist. While they were excellent and we loved working with them, neither could provide clear directions as to what to do with feeding our son and figuring out all the triggers.  So we ended up finding a nutritionist who we Skyped with out of Boston. She specializes in FPIES!  She led us through the process of figuring out what to trial and how to trial foods. Her direction and support were totally needed. I’d be happy to provide her contact info if you are interested. If you have any other questions, please let me know.  I’d be happy to help you. 

I’d appreciate your dietitian in boston’s info! We live in Florida and have doctors an hour away and my boys are also seen by doctor at CHOP. We have dietitians but they are guessing like the rest of us.

Hi! Happy to pass along this info.  Her name is Tara McCarthy. Her website is https://www.taramccarthyrd.com. Not only is she super nice, but she works with a lot of fpies families so she is able to give suggestions based on what she’s seeing is working/not working with other FPIEs kids. She provided much needed direction for us and we were very happy to have found her. Let me know if you have any other questions. 

Thanks!! We are six years with kid one with no end in sight but additional resources is always good.

I agree with everyone else's advice- good replies.  Beausmana- Thanks from me as well for another resource.  My almost 4-year old son with FPIES has about a 12 food diet along with Neocate Splash.  Our medical team is excellent and has always been the same, but we are on our fourth dietician here in Wisconsin (sad I know- they all ignored my phone calls/emails, seemed scared of our case, and/or never seemed to cough up a recipe to help us out.)

Murphy- oh my goodness six years! I’m so sorry you guys have going through this for so long. What is his safe food list like? 

Jess- Thank God for neocate/neocate splash! Our gastro told us people refer to it as “liquid gold.” So grateful for that stuff.

 It blows my mind that the dietician is such a critical piece to a child with fpies healthcare team but yet I’ve heard it from so many others that no one can get that help. It’s so frustrating.  With “most” kids outgrowing FPIEs at a young age,  it seems like there’s a lack of community or research being done because it’s not a life long problem for most kids.  That’s upsetting. 

There has only been a diagnosis code for FPIES since October 2015. Nothing in the US gets research funding until there is a code. It will be better in five years or so. Hopefully none us will be dealing with it then! There is some helpful research out of Israel and Australia.

There is spreadsheet on FB of how many kids have passed what which can be helpful in determining what to try first but it’s all guessing! 

There is also a handbook to help now. I haven’t read it yet because i’m A walking handbook lol. It’s on Amazon.

my oldest at 6.5 has 15 safes. My little at 3.5 has 12. The 12 are ones the big has also.

word from the experienced: if you are trying meat or fish or eggs and your child is sensitive to soy look out for what your meat eats. Vegetarian fed is industry code for mostly soy fed.

ask me anything!! Also most kids with FPIES for more than a few things need oral motor therapy. Most SLPs are not trained to work with kids like ours. The Beckman Sensory Motor Approach is the answer and Debra Beckman will help! Google her.

good luck! In a year this will all be normal to you. It will still suck but you won’t think about it you’ll just do it.

Thank you for mentioning the speech thing. I am going to google that! My son will be four in June and this is actually something that I know is an issue for us. 

Jess-

Our first Marcus is also four and only had about 12 foods.  We recently went to our Boston Children's check in and the docs thought he should be further along than he was as far as food tolerances and should no longer be complaining of the degree of belly pain and should no longer have bloody stools.  The team thought that we were probably still exposing Marcus to a minor trigger.

Sure enough, we cycled through his safes and found when we eliminated eggs, the blood and pain disappeared with it.  Since the egg elimination we were quickly able to bring on tapioca flour and peanuts and are currently trialing banana. 

I know every child is different and that it is very hard to peel back on an already limited diet.  That said it might be worth cycling through your safes and seeing if that helps the process along.  

Murphy- I bet ya gold may actually be cheaper!!!  lol  We have yet to switch over to the splash because my kiddos are still "okay" w/ unflavored (how IDK).  At what point did you transition?

Be well,

Mark

My kids never used formulas. I breast fed in a very restricted diet for a very long time (and put it in smoothies) and am still nursing my little. They could never tolerate formulas/supplements of any kind.

Hi. Thanks for the dietitian's contact information. We need help finding safe foods.  We live in Florida and are looking for a good GI and allergist.  Murphy - which doctors do you use in Florida? 

Hi all,

This is a very good, informative conversation.  

Mark: We've had that "hidden" trigger problem before, so I totally know what you are talking about.  It is true- they are always mildly- moderate sick and you get "false fails" when you trial food.  NOT fun.  I'm always on watch for that issue.  For the most part, my son is symptom free unless it is a failed trial.  We just can't get many foods to pass trial.  . . Also, he has on and off GERD (he got that from me genetically), which slows down our trialing (1 food a month at the most).  It is often tough to tell between the mild symptoms of FPIES and GERD, so I have to be super careful.  Hence why he only has a 12 food diet at near age 4.  We've never tried eggs.

"Milk":  I ended up breastfeeding for 3 years.  Nothing passed trial when my son turned one: He failed cow's milk, soy, coconut, and Elecare.  We gave up for a while.  Then, I tried Neocate Jr. including all of the flavors- He refused to drink any of it (even when I used the mixing with breastmilk method of weening).  I gave up again for awhile.  Then, we tried Neocate Splash near age 3, and he liked it!  : )  It is my opinion that I wouldn't push the transition unless they are bored or need something else nutritionally- I know there are FPIES toddlers still drinking Neocate Infant, because they didn't tolerate Neocate Jr.  Doctors often think that it isn't possible that elemental formula will fail for a FPIES kiddo, but it definitely can . . .

We did get good news on the speech front.  We've been informally working with him on his mild speech issues and saw a huge improvement.  He just passed his speech rescreen for 4K next year.  : )  

Bornstein is our GI at AP. Tamara is our dietitian—she has been awesome. She didn’t know anything about FPIES when we met her but she’s done the research and reached out to others in the field.

Martinez is our allergist. He was the first doctor in the area educating anyone on FPIES. He does all the CEU classes on FPIES. He has also visited CHOP.

Also I regards to speech. Just to make sure you are aware they can have oral motor challenges with no speech delay or impediment. Both my kids needed/need oral motor therapy but neither had a speech delay at all. My youngest had/has within normal limits articulation errors but my oldest never did. With my oldest we were told he’s fine because his speech was fine when I initially asked for a referral and it delayed treatment by over a year.

in the case of my kids they were not able to move food properly around their mouths and chew thoroughly