5 year old daughter with "atypical FPIES"

I have a five year old daughter that has suffered from multiple food allergies and sensitivities since birth and they continue to worsen. She does have confirmed food allergies to: peanuts, tree nuts, and dairy. She was able to eat other foods fine until she was about 2.5 and suddenly starting having unbelievable diarrhea multiple times a day and after doing a food diary confirmed that she was now sensitive to pork, beans, sunbutter, rice milk and more. Once removing those foods from her diet, her symptoms stopped. She was doing fine until about a year ago, began having uncontrollable diarrhea again and confirmed she was now sensitive to beef. After going to a GI doctor and good allergist, the allergist said that she had what he thinks is "atypical FPIES" as she doesn't have all of the symptoms but will have non-stop diarrhea for days when foods that bother her have been consumed and as mentioned, continues to have more that she cannot have that never bothered her before. She will be 6 in December. I am just wondering if anyone else has experienced anything like this in their child? Thank you for your support!

Original Post

Hi,

My son has "atypical FPIES" as well- he turned 2 this summer.  Our story is not exactly like yours- but there are similarities.

We have started losing "safe" foods like you experienced starting right before the age of 2- He ate watermelon, peaches, pineapple, carrots, green beans, and skillet beef for over a year before they all failed.  So, when we have a food failure, we have to examine all his food.  Not just the food that is currently on trial . . .

We also have seen just diarrhea as a symptom for certain foods (though we get a plethora of symptoms with other foods, as well as the classic "vomit").  These foods went right to the severe diarrhea stage (yes, for days) without any other symptom- sandwich steak (100% beef), apple juice via breastmilk, and limeade via breastmilk. 

Also, like your daughter, our "fail" list is huge.  Our son currently has about a 10-food diet, but has luckily always been a healthy weight.  Our goal is to just simply keep him in food even if we have to continually remove and add.

I encourage others to post about aypical FPIES- it could really help.

-Jess 

Hi Mary,

An update with our "atypical FPIES"- my 2-year-old son just failed beef in all forms after eating it for over a year.  My son also just failed a pork trial (ham) at about the one month mark.  

So, my son now shares your same list of failing dairy, beans, pork, and beef in the protein category (he has lots of other food failures as well).  He dislikes SunButter, and elemental formula never worked out for us.

He has never tried the common FPIES triggers- chicken, turkey, and fish.  He has never tried eggs.  Our only protein source right now is quinoa and breastmilk.

If you have a chance, do you mind sharing your pass list in the protein category?  I realize that every FPIES case is different, but I'm always looking for ideas.

-Jess

Hi Jess,

thanks for the update on your son. As of now, my daughter can still have chicken, turkey, eggs (but she won't eat eggs) and fish (cod, pollock is all she's tried and likes). She recently reacted again to something so I haven't given her turkey in a while because I'm not sure if that's the culprit yet, but I'll let you know. She hasn't had quinoa in a long time, didn't really like it so I haven't tried it again. She is able to have all fruits and vegetables except corn in the kernel or cob form. She can eat corn chips. Thanks for continuing to chat with me, please keep me updated on your son and let me know if you have any other questions.

 

mary 

We had a very similar case where just before our sons 2nd birthday and he had many foods on board. I'm slowly but surely we had to cut down to just 4 Foods as well as elecare Jr. He is now almost 3 and we are back up to eight Foods plus the elecare Jr. 

The original thought process was that we we're just allergic to Dairy. The pediatrician put us on Nutramigen and Nutramigen has Trace Amounts of milk in it. So if you're in fpies kid those Trace Amounts to damage over time. And that's how we lost the foods that we had. So I do agree that it COULD be something that seems to have passed but it is really a trigger. I am precise the word could because you really never know with FPIES and I've noticed that though there are similarities between each case fpies in and of itself seems to be atypical :-)

My best advice is to go down to a small base of foods. And then build back up from there. It's very tough especially the older than a child is. However it may help you find a trigger that you didn't know about.

I wish you the best of luck,

Mark

Hi Mark,

I was wondering if you were in our atypical FPIES world, since you wrote this in your SMILE Post:

"He had had multiple foods on board before that but his body just kept rejecting and associating with other foods."

As you've seen from my posts, my son seems to have the same problem with so-called "safe" foods failing.  He used to have close to 20 safe foods prior to his 2nd birthday.  Through a myriad of symptoms forcing food eliminations, my 2.5 year old now only has 5 safe foods plus breastmilk.  

Your "hidden food trigger causing damage" theory could definitely be true.  Though finding the problem without big, identifiable symptoms is quite the trick! 

If anything besides food elimination, baking food, and watching amount (which we are doing) helps with your son's case, let me know.  I'm always looking for ideas!  

Thanks for your posts- always good to know that we are not alone in this struggle.

-Jess

Hi Jess,

When we started care at Boston Children's we were told that Marcus had one of the worst cases they had seen in terms of the failed foods.  A blessing has been that despite FPIES, we have been able to keep Marcus in the 90th percentile for height & weight... something that is almost never seen w/ so many failed foods.

I have some suggestions and you are under no pressure to try what I say... it's just what has worked for us.  These are also in no particular order.

1.  No more breast milk.  I am a health teacher and my wife is a nurse anesthetist and we certainly understand the health benefits of breast milk.  BUT it's a huge variable in terms of exposure.  We tried to keep up with breast milk and in the end decided that the stress alone was reason to stick to elecare.

2.  Elecare is great.  Though my son had never had much in the way of sweets and the elecare vanilla was too sweet for him to start in the plane smells and probably tastes like fish food. So what we have been doing as we have been mixing the two 50/50.  Marcus will be 3 in April and he still takes 6 oz of elecare when he wakes up 6 oz is before his nap and success is before bed. It's the only thing that you will consistently take down because sometimes his belly feels strange or hurts with solid foods.

3.  Be cognizant of environmental factors.  The winters have seemed to be the worst for Marcus. I don't know if it's just his immune system fighting off colds allows for the fpies in the autoimmune disorder to and take over or if other allergens are affecting him. I know that my mom and I are both allergic to pine trees. They just gave me an annoying rash whenever I touch the Christmas tree. No big deal. But this year I realized that as the Pine Tree was inevitably Pinetree was inevitably shedding its needles all over the house that Marcus is rashes were way worse than normal. I also know that Marcus is allergic to dogs. And after exposure to a pup on New Year's he had an fpies reaction and I swear he did not eat a food that was unsafe.

4.  Choose your friend and family events wisely. If your friends or family are not willing to bend over backwards to be sure that your child is not exposed and then subsequently not letting for a week then it is not worth going to that event. This was a tough one for us to swallow but like it or not things are a little bit different now.

5.  Eliminate the major triggers from your household entirely. No I love steak we no longer have red meat or dairy because beef and dairy or Marcus's biggest triggers. It's just not worth chancing him getting some sort of Trace amount into his system and then having all of your trials and effort ruined.

6.  Keep really good notes. Failures come with a lack of sleep in a lack of sleep comes with the lack of memory. At least if things are written down random symptoms, things you might think are symptoms, etc you won't forget.

I will go back through and try to read your posts and see if I see anything in particular that jumps out. But please feel free to reach out.  My wife and I are even willing to swap phone numbers to compare notes with other families. The doctors are great but they still don't have enough information and they seem to be studying at the same time as treating.

Hi Mark,

Thanks for the tips that worked for your family- always good to compare notes.  It is fascinating to me how each FPIES case can differ- especially the "safe" food lists.  We are also lucky that my son's weight has always been around the 70th percentile- it is quite amazing with only a few foods!

#3-6  I agree!

Breastmilk probably did save my son's life, since so far we've failed every milk and formula (incuding Elecare Jr.).  BUT, I have read accounts that breastmilk wasn't the answer is a lot of severe FPIES cases, so I'm so glad that Elecare Jr. worked for your son.

I'm for a supplement at this point for when I completely ween, but I think our medical team still wants to try to find a calcium solution via diet- I think next up is Neocate Splash (my son refused to drink Neocate Jr. of any flavor).  Keep your fingers crossed that it passes trial and that he'll actually drink it!

Since we are on Mary's original post, it would be good to answer her other question as well.  Her daughter lost previously "safe" foods starting around age 2 like our sons.  Does your son have the diarrhea-only symptoms to failed or some failed food?  Or does he mainly have the classic FPIES symptoms like vomit?

-Jess

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EwaMary135
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