My son is 10 months old and violently throws up if he eats rice or Formula containing cow milk protien. I am getting no where with his pediatrition here in Coldwater MI. Feeling overwhelmed and stressed and discouraged because these docs are treating me like I am crazy. And advice would be greatly appreciated.
Well, I'm one state too far from you (WI). Hopefully, someone from Michigan sees your post and can give you a personal reference. This site does have a healthcare professional directory if you find that helpful- http://fpiesfoundation.org/fin...healthcare-provider/.
I am surprised that your son's doctor would think you are "crazy" with vomiting with rice and cow's milk- both are common triggers for FPIES. My son reacted to both of those foods. Do not be afraid to switch doctors and find specialists- you need to find one that is open to the FPIES diagnosis and listens to your concerns. The medical team most often found in the US is an allergist, gastroenterologist, and dietician to help you manage your son's condition (we have all 3).
I had to tell my doctors that my son reacted to Elecare (a formula noone is supposed to react to), packaging (all canned food), and, now, almost all fruit. I'm pretty sure a lot of doctors would think I am "crazy." Luckily, in reading the posts on this site, I feel better knowing there are parents with FPIES kiddos with a very limited diet and atypical food fails. So, trust your instincts and fight for your son.
Sorry to hear about your struggles Melissa. FPIES is so rare that alot of pediatricians don't know about it. We have received some crazy looks from a few docs as well. That is until Boston Children's accepted us into their program and a diagnosis came from them. Now everyone is much more helpful.
Our pediatrician originally put us on Nutramigen because she thought it was just a normal cow allergy. However there are still cow proteins in Nutramigen so we had a lot of problems until Boston Children's switched us to elecare. Neocate is a similar product. Amazon has been very helpful as far as seeking out our formula on a timely basis as a lot of the pharmacies where we are do not carry it in store. That said once you get a diagnosis you can start to claim the formula on your insurance if your doctor writes it as a script.
You may want to start touring and interviewing other pediatricians who have heard of fpies or are familiar with other conditions similar to this.
Best of luck! We know how hard it is.
We are not too far from you and see someone in Ann Arbor. U of M allergy has some great FPIES docs who also have nutritionist support I believe. We got our diagnosis at Mott children’s hospital. Multiple people there told us to see Dr. Harvey Leo. He does not work for U of M but we have seen him with both our FPIES kids. I’ve really liked him but also want to warn you that I was wanting clear answers and with FPIES from our experience that’s not something you’ll get. But he did help us come up with a plan. And if I hadn’t been breastfeeding could have given us the prescription for formula that is hypoallergenic.
There are moms around me with FPIES who swear by the U of M doctors. One specializes in FPIES but I cannot remember who it is. But if you call I think they would know! We didn’t go that route because of recommendations and we didn’t want to have to wait as long as we usually have to get into a doc through U of M.
good luck mama!
Hi! We were referred to Boston children's and i was not all that happy with the doctor we saw, as every question I asked he said to come up with a plan with our pediatrician. WHich Fpies specific doctor did you see at childrens? Thanks! Any help is appreciated!
Marcus sees a team over in the EGID Clinic on the main campus of Boston Children's. His doctor is Dr. Ngo and his allergist on that team is Dr. Lee who is one of the founder of the FPIES Foundation.
In our view, everyone on the team has been amazing and extreemly approachable. Though our pediatrician has reached out to the team for questions on certain meds for ear infections, etc., the Boston Children's folks came up with our food trialling, medical formula, etc.
Marcus just turned 3 and our speech services were just transferred to our school district and the EGID Clinic team put worked together and put together a perfect letter to direct the school department in setting up Marcus's IEP and school nursing plan.
We do have a proactive pediatrician and a great school district... but they are being guided by the EGID Clinic. If you want chat further, shoot me a direct message and we can exchange phone numbers.
Good luck! Mark
Hello, Jessica and Mark
My son has been seeing Wayne Shreffler at MassGen since he was diagnosed in 2013. I’ve been very pleased. That being said, my son has had chronic abdominal pain for almost 1.5 years, and though I do like the pediatric GI we’ve seen at MassGen, I am set to visit children’s for a second opinion in January.
He is set to see Eitan Rubinstein, and I was wondering if either of you had any experience with him.
Also, nice to “meet” fellow Boston area FPIES-ers. Not the club I was looking to join, but nice to meet you.
All the best,
Sorry to hear about your boy and welcome to the club. My son Marcus will be 4 in April and still complains once or twice a week about his belly hurting and reports daily that his belly is full which is a weird way of describing the need to poop an hour or so later.
We have seen Dr. Ngo & Dr. Lee in the EGID clinic, Dr. Hait at the Boston Children's satellite, Dr. Lee on his own at a satellite in and Dr. Ngo on his own at a satellite. We have not seen Dr. Rubinstein.
If I had to choose... I'd say your best bet is to start seeing the team at the EGID clinic and go from there. It was a long but good experience. Not to say the others were not proficient... just to say that there were more professionals putting their heads together at the clinic rather than just one doc through one lens.
Maura who aligns the vast majority of appointments for the clinic docs is extremely helpful but it is better to email her than call as she manages a bunch of different doctor's phones.
Be patient, you will get through this.