Please recommend children's allergist who is familiar with FPIES

First, we don't even have an official diagnosis, but on three separate occasions after eating avocado the poor baby projectile vomited for 6+ hours. First time I thought it was a stomach bug. Second time it was *maybe* a coincidence, but decided to not give him anymore avocado just to be safe. Then a few weeks later a relative accidentally fed him avocado and again he puked all night long. We went to the doc, who basically said "it sounds like an allergy" and to just not give him avocado. I was confused, no hives, no problems breathing. Then someone else posted about FPIES, and damn if it doesn't fit the bill. But he's getting older now, so I want an actual diagnosis, and also to know if/when to do a food challenge since IF it is FPIES then there is hope that he may outgrow it.

And for anyone who has done an oral challenge for FPIES, if the kid hasn't outgrown it, is there anything they can do at the office to stop the reaction, or does the little guy just have to tough out 6+ hours of projectile vomiting?

ETA: Not sure if this is relevant or not, but the very FIRST time he ate avocado he didn't have a reaction, it was only after that first time that he reacted badly to eating it.

Re: your last sentence - not that uncommon to have no reaction at the first exposure. Happens with poison ivy at times - the body's reaction is 'primed' at the first exposure and the body reacts at the next exposure.

spontaneous said:


And for anyone who has done an oral challenge for FPIES, if the kid hasn't outgrown it, is there anything they can do at the office to stop the reaction, or does the little guy just have to tough out 6+ hours of projectile vomiting?

Conclusions

Parenteral ondansetron is significantly more effective than traditional therapy in resolving acute symptoms of FPIES. The relative risk = 0.2 greatly reduces the bias linked to the lack of randomization. These findings suggest an effective treatment for vomiting in positive FPIES OFCs and allow for more confidence in performing OFCs.

dickf3 said:

spontaneous said:


And for anyone who has done an oral challenge for FPIES, if the kid hasn't outgrown it, is there anything they can do at the office to stop the reaction, or does the little guy just have to tough out 6+ hours of projectile vomiting?

Conclusions

Parenteral ondansetron is significantly more effective than traditional therapy in resolving acute symptoms of FPIES. The relative risk = 0.2 greatly reduces the bias linked to the lack of randomization. These findings suggest an effective treatment for vomiting in positive FPIES OFCs and allow for more confidence in performing OFCs.

Thank you. So now I just need to find an allergist who is good with diagnosing FPIES and who will also use zofran if my child reacts to an oral challenge in their office.

FWIW, my kid's allergic reactions when he was younger was vomiting without any other symptoms. In one case, it progressed to anaphylaxis, i.e. he passed out. In any case, it turns out that he has IgE mediated food allergies and as well as some level of FPIES. We went to his regular allergist at Mt. Sinai who also practices with a GI who specializes in food allergies and intolerances. I highly recommend her - Dr. Chehade. She also treated my then infant for proctocolitis.

dg64 said:

FWIW, my kid's allergic reactions when he was younger was vomiting without any other symptoms. In one case, it progressed to anaphylaxis, i.e. he passed out. In any case, it turns out that he has IgE mediated food allergies and as well as some level of FPIES. We went to his regular allergist at Mt. Sinai who also practices with a GI who specializes in food allergies and intolerances. I highly recommend her - Dr. Chehade. She also treated my then infant for proctocolitis.

Our pediatrician said that it progressing to anaphylaxis was a possibility. She did blood work and he did show IgE levels. She said they were higher than zero, but lower than what would normally be considered a positive result.

Dr. Chehade isn't in network, and the way our plan works is that we pay 30% of out of network charges PLUS the difference between "customary and reasonable" and what the doctor actually charges. In the past this "difference" has been as much as $500 for a single visit, so I'm wary about seeing doctors out of network.

Don't know if any of the Mt. Sinai Peds allergists are in your plan, but you could also try Dr. Nowak there too. She is more attuned to FPIES in that practice. The benefit of Mt. Sinai is that they can look at the IgE results and use their 95% confidence intervals to predict whether a reaction is likely or not. Not too many pediatricians keep up with that. I don't know how old your child is, but with younger children the low levels of IgE can lead to reactions while such levels may not for adults. At MS, they look at both skin tests and blood tests and compare them. If Mt. Sinai does not work, Maybe try Goryeb, too?

dg64 said:

Don't know if any of the Mt. Sinai Peds allergists are in your plan, but you could also try Dr. Nowak there too. She is more attuned to FPIES in that practice. The benefit of Mt. Sinai is that they can look at the IgE results and use their 95% confidence intervals to predict whether a reaction is likely or not. Not too many pediatricians keep up with that. I don't know how old your child is, but with younger children the low levels of IgE can lead to reactions while such levels may not for adults. At MS, they look at both skin tests and blood tests and compare them. If Mt. Sinai does not work, Maybe try Goryeb, too?

He is two now, he was about a year old (give or take) when they did the blood work. If Goryeb is a part of Morristown Medical Center, then yes, they are in network. If it is a separate entity then they are not.