MSPI new to FPIES

Hello All,

my DD is 17 months old and has finally been diagnosised officially with Fpies. I have suspected this was our issue for many months, but just now have a true confirmation from an allergist. When my DD was born she projectile vomited 10-16 times a day, ate BM constantly, had a huge belly, and had pure liquid burnt orange stools. Our pediatricians all said this was normal! As aNICU nurse I knew it was not so I consults journals, peers and the internet and discovered milk intolerances. My pediatrician finally took interest when she was having bad bloody and mucous stools.  I went completely dairy free and that solved so many of our problems. But eventually I had to remove Soy as well and our gastroenterology dr said she had MSPI.

Once the soy and dairy were out of my diet she was a completely different baby! But I noticed that foods that were supposedly dairy free still caused a  reaction, she was probably 4 months old at this point. So I went to the allergist fearing we had more issues. This allergist diagnosed FPIEs but then called me at home that night to say my child was too healthy and growing too well to have FPIES. I was pretty much told that I just wasn't watching dairy labels well enough and I was ingesting it so I should stop breastfeeding and switch to formula so that I stop making it worse for her.

I chose not to do so, and kept a very strict diet with no processed foods and my LL thrived! We ran out of Bm at 14 months when I went back to work, and our issues really reoccurred. I learned quickly we did not just have MSPI, and feared it truly was FPIEs. My DD has reacted to Dairy, Soy, Peas, and to a milder degree rice and oats. We have avoided dairy and soy but know that issue is still active bc of an accidental introduction at daycare. The other foods  were discovered from repeated introduction and eventual breakdown of her system. Pea protein in coconut and almond milk took 10 days for a visceral reaction but she had been having mild symptoms from the beginning I just wasn't as educated as I am now to have caught them. She was given whole peas recently by my mother and she projectiled within 2 hours and her gut has been torn up for weeks since this event and now it seems like everything is causing a problem.

How do I trial foods like legumes that she was eating so well? She is so hungry and doesn't understand why I won't let her have anything other than a few fruits, pouches of puréed, and eggs. We just started elecare jr and just that alone has made a huge difference. Her eczema is almost gone. But I'm scared to try any foods, bc her recent reaction over the weekend was so severe and we don't know what she ate that completely caused it. I think it was wheat/barley but I can't be sure. I don't want to go back to the ER and there is not a GI near us we are waiting to get into one that is 150 miles away and has a really long waiting list. Is there a place to go to see if your child reacts to oats that most FPIES children who react to that also reaction to x? Or is all of this as it seems, just a stab in the dark till you know for sure your child is ok with that food? I also feel like eggs are fine, but should I take them away and then reintroduce? And what do all of you do for nutrition when you do take away a major source of food? White potatoes never seemed to cause issues, but since I am thinking of removing eggs to test a reaction, I know I can't add anything else in, but I hate how hungry she is and I feel terrible not feeding her. How do you handle the guilt in the moment, but still deal with the reality that it may not be safe to give something to her even when you thought it used to be ok?

Also many people say there children grew out of these issues as early as 18months, are people just continually retrialing previous trigger foods at specific intervals and that's how they knew they were cleared of problems? 

 

Thank you all all for reading my story and potentially helping me navigate these new and difficult waters. I just want to do whatever she needs and cause the least amount of GI damage along the way. Thank you

Original Post

Hi

I am so sorry your baby girl isn't feeling so well. Its so hard to watch! My DD had a reaction to dairy and soy, so we avoid rice and oats since her FPIES diagnosis, just to be safe. We are going back when she is 18 months to the doctor to introduce her to them there - that way if she has a reaction, she is right at the doctor to be treated for the dehydration, etc.

When we first started solid food, we only introduced 1 food within a 2 week period. For instance, we kept all her "safe" foods and then would introduce that new food just when we were around - so if she had a reaction, then we would be home for it. I would say if you feel like the wheat caused the reaction, then I would keep her on the foods that you feel are ok and just slowly introduce new foods. It took forever to get her eating a variety, but at least we were able to pinpoint what it was if she did have a reaction, to avoid in the future. Did your allergist give you any medications? We have a steroid and an anti-nausea (Zofran) medication our allergist gave us in case she had a problem, with strict instructions to call him if she has a reaction. On this website, you can find an allergist who specializes in FPIES if you feel yours isn't meeting your needs.

Does your allergist offer introductions to food? Is there a nutritionist nearby? We went to one who specialized in FPIES - she also gave us a bunch of Alfamino Jr and Elecare Jr as free samples - it was great, since its so pricey.  She made me feel better about how her growth was going and what exactly the needs were from a nutritional standpoint - much less than I thought! 

I have also tried flaxseed milk - DD seems to love it (she can't have almond at daycare due to the nut allergy).

I hope this helps, good luck to you and your DD!

 

Thank you for your response. No, her allergist did not prescribe any medications, but at the time I had her really well controlled. We are set to go back after the first of the year and this will be a whole new ball game. She had an oral introduction of peas and that was enough to completely rock our world. Her previous "safe foods" aren't as safe as they used to be, which i have read is something a lot of families struggle through. So we will just stay limited and go slow. Ill ask about the steroid, how does you DD tolerate it. We had zofran very early on and it did not go well. She goes to the GI specialist 2/21. This was the earliest we could get in, .

Her allergist does not do the food introductions and I have called several allergists and hospital in the area and NO one i have spoken too does them. So we need to go to OKC or Dallas to get and OFC. There is not a nutritionist who specializes in FPIES. But we do use elevate Jr now and it is working really well. 

I haven't tried flaxseed milk, I was going to try flaxseed Meal and mix it with cauliflower to create a bread she could have, I'll let you know how that goes. I wish you guys nothing but the best in your journey, hopefully it is a short one for all of us!

 

Hi Stephanie.  I am sorry your family is going through this.  My son Marcus is 2.5 years old and the docs swore up and down that everything was normal until we were seen first @ Hasbro Children's  (RI) then Boston Children's. 

Elecare Jr. was huge for Marcus step for Marcus.  But what also helped was a combination of Zantac & Zertec.  Both were recomended by our Allergist at Boston Children's who has since recommended Cromolyn be added.  Cromolyn made Marcus extremely temperamental and caused his naps to run for 4 or 5 hours.  We didn't like that and only use the Cromolyn when there is a reaction and we need to calm down his system. Additionally we only give before bed to keep naps from being crazy long.

When we trial we follow a 7 day build up. 1 tsp on (1st day), 1tsp (second day), 2 tsp (3rd), 2 tsp (4th), 2 table spoons (5th), 2 table spoons (6thl, full serving day 7.

We chalk it up to a fail if we get skin burning diareah or vomiting at any point & stop trial.  We also watch for hot ears, shiners, and skin rash breakouts.

I didn't catch where you are located, but the EGID clinic in Boston is amazing.you get the whole team including social workers, nutritionists, allergists, and docs who specialize in FPIES/EOE.

Hope this helps. Any other questions, feel free to reach out.

-Mark

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