Is invasive testing really necessary for my LO?

[KempsMama]

Today my LO, Jack, had an appointment with a gastro doc.  It was a referral from his allergist, because we believe he has FPIES.  The gastro doc took me by surprise though and wants to do an upper endoscopy and and flexible sigmoidoscopy.  This would require depriving my sweet baby of breastmilk for five hours, scoping him, and performing pin biopsies.  I DO NOT WANT TO DO THIS TO MY CHILD.  It seems wrong.  But if it is really necessary, I will. 

This all started because Jack reacts to oat.  About two hours after he consumes even a crumb of it, he vomits for 6 hours or more, has loose stools, becomes lethargic, and in one case went into shock.  His pedi ordered an upper GI study, which came back normal.  Pedi then referred us to an allergist/immunologist who said she was pretty sure it was FPIES, did a skin test which came back negative, and referred us to the gastro doc.  The gastro doc seems to think it's probably FPIES, but wants to test for eosinophilic gastroenteritis, because "it's treatable and FPIES isn't".  No other reason.  No symptoms that can't be explained by the FPIES, no other reason except this other condition is treatable.  I'm at a loss.  I looked at the symptom list, and it seems very generalized.  One of the symptoms is poor weight gain/FTT, and I don't think my 22 pound 8 month old fits the bill.  He has a healthy appetite, sleeps well, and is overall really healthy.  The only thing that might be concerning is he has only gained 2.8 pounds since December-but my oldest slowed down quite a bit after monstrous growth in the first 4 months, so I'm pretty confident that Jack is following his normal growth pattern.  He's grown almost 4 inches in that same time frame. 

I don't know what to do.  I do not want to subject him to the invasive testing.  But I do not want him to suffer from an undiagnosed illness either.

[changingseasons]

I think you have to look at what you would do with the results. If they did find one of the EGID disorders, there are 3 types of treatment to put it into remission (none will "cure" the disease; these are lifetime treatments): topical and/or systemic steroids, elemental diet (formula), and/or diet modification.

If oats are the only problem food that you've noticed, and you aren't concerned about any other symptoms, honestly I'm not sure I would do the scopes. They really are NOT fun. My 3yo had an endoscopy and colonoscopy done in November because she continued to lose safe foods and was down to less than 10 foods (she did end up being diagnosed with EE and EC), and she's now on elemental formula. We haven't re-scoped to see if she's tolerating the formula, because I really hate the idea of doing it again (although we will have to... eventually.) Oh- that's another thing- if it is EGID, you're looking at repeated scopes every time you make a change to diet or treatment to see how it's working, because the only way to see progress is to take biopsies and check eosinophil counts.

On the other hand, if there are eosinophils in the esophagus, they will eventually cause tissue damage. My DD1 also doesn't have any of the classic EE symptoms either, so you shouldn't necessarily rule it out because of that.

I have a couple posts on my blog about our experience with the scopes if you're interested.

[scsigrl]

First, are you sure you would not have to deprive your baby of BM for 5 hours prior to surgery?  I know for an upper scope it shouldn't be that long thought with a colonoscopy  I am sure you can ask on the BF section or a LLL leader and get what they suggest.  BM is considered a clear liquid!

Second, I know scopes sound scary.  They are.  My little was just over 3 when we had his done and I have NEVER been that scared in my life.  It is not fun for parents! Not at all.  DS, he could care less. He was fine after.  Got a cool toy.  Doesn't remember a thing about it!  We went back with him and I should have insisted more to be there when he woke up but he doesn't remember that anyway.

I agree totally with the "What are you going to do with the results."   If it's FPIES, they won't find anything on a scope.  If it's EE, I would want to know, but that's me.  Our scope was for Celiac.  Also, know that you may not get any result!  Ours was inconclusive and that drives me crazy!  We went through all that for nothing :(

Did your allergist mention anything about patch testing for FPIES?  I know it isn't a huge success rate but it isn't invasive and may give you more "Yeah, FPIES!" data so the GI would be less likely to want to scope (thought they do like to scope ;) )

Hugs and good luck!

Another FPIES Mom!

[KempsMama]

Regarding patch testing, I thought that was done with EE/EG but not with FPIES?  I'm so confused by all of this.

DH and I talked more, and we've decided that unless Jack starts having more problems, we aren't going to have the procedure done.  If he doesn't "outgrow" the oat issue after he turns three then we will re-evaluate. 

[scsigrl]

Like I said, it was only tested in one study (this is what my allergist said when we talked about FPIES at our last appointment about a month ago).  The results aren't *great* but for me, I would do that before a scope!

Glad to hear you and DH have a path set!  There is a site with a bunch of FPIES parents called Kids with Food Allergies.  May be something to look at if you have a minute!

[mytwomonkies]

Are Oats the only thing he reacts to? If he's not consuming oats does he still have some symptoms?

[KempsMama]

Originally Posted by mytwomonkies 

Are Oats the only thing he reacts to? If he's not consuming oats does he still have some symptoms?

Yes, so far oats is the only thing he reacts to.  He has had a variety of other foods and had no problems at all.  But if he so much as gets a crumb of oat he's sick for 8 hours or so. 

[kjbrown92]

To me, it sounds like a straight oat intolerance. If that's his only food issue, and it goes away when he doesn't have it, for me, I would not do further testing. I would just avoid that one food, which isn't that hard to avoid. If there was lost weight, no sleep, continued diarrhea, rashes, and more foods lost, then I would do testing. With one food, I wouldn't. But that's just me.

[scsigrl]

Originally Posted by kjbrown92 

To me, it sounds like a straight oat intolerance. If that's his only food issue, and it goes away when he doesn't have it, for me, I would not do further testing. I would just avoid that one food, which isn't that hard to avoid. If there was lost weight, no sleep, continued diarrhea, rashes, and more foods lost, then I would do testing. With one food, I wouldn't. But that's just me.

I agree with all this except what I bolded.  If the kid went into shock, it isn't an intolerance.  It sounds like the Dr. has labeled it FPIES which is way more than in intolerance.  I am not trying to split hairs but an intolerance doesn't grasp the full scope of what FPIES is.  I know that the treatment (avoiding) is the same but you don't typically need to get to the ER with an intolerance.

[kjbrown92]

Sorry, I didn't see the "shock" part. It sounds more like an allergy then. Has he been tested for an allergy to oats? I just don't think one food reaction is a whole syndrome. For me. But a child going into shock would make me want to get to the bottom of the cause.

[KempsMama]

Originally Posted by kjbrown92 

Sorry, I didn't see the "shock" part. It sounds more like an allergy then. Has he been tested for an allergy to oats? I just don't think one food reaction is a whole syndrome. For me. But a child going into shock would make me want to get to the bottom of the cause.

Yes, he had allergy testing to oats and it was negative.  Going into shock is typical of a severe FPIES reaction.  There are other foods that are common triggers with FPIES, but he hasn't been exposed to many of them yet, so there could be more.

[scsigrl]

Originally Posted by kjbrown92 

Sorry, I didn't see the "shock" part. It sounds more like an allergy then. Has he been tested for an allergy to oats? I just don't think one food reaction is a whole syndrome. For me. But a child going into shock would make me want to get to the bottom of the cause.

It is basically a non-IgE reaction that can often lead to shock.  So they list it as an intolerance that causes server GI issues and as noted shock in a lot of cases.  I think like with most things, it's a syndrome because there is no test for it.  It's basically by exclusion of IgE (RAST and SPTing) and reaction. 

[lil_miss_understood]

If you ever choose to do the scope to rule out an EGID, please please please I beg of you, do extensive research before hand. There have been far too many children who have had to be re-scoped simple because the doctor doing the scope/biopsies didn't have enough information. Unfortunately, these are disorders where the parents MUST be exceptionally informed and incredibly stubborn on the course of treatment and testing in order to make up for the ignorance of the vast majority of the medical community.