Tagged With "advice"

Topic

Need help finding a doctor.

MelissaJB ·
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.
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Re: Need help finding a doctor.

Jess ·
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...
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Re: Need help finding a doctor.

MarkLaBoss ·
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...
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Re: Need help finding a doctor.

FPIESinMI ·
Hi there, 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...
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Re: Need help finding a doctor.

Jessica ·
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!
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Re: Need help finding a doctor.

MarkLaBoss ·
Hi Jessica, 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...
Topic

Hasbro/ RI Care

Emily ·
Has anyone had experience at Hasbro? My son is a patient there, and I am struggling to feel confident about their ability to provide quality care. I think all of the doctors are great in isolation, but they seem to be on completely different pages, and I am getting different and often conflicting advice from the nutritionist, GI doctor, and allergist. I am hoping it improves now that he has an official diagnosis, but I would love to hear if anyone has had a good experience to help me rebuild...
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Re: Hasbro/ RI Care

MarkLaBoss ·
Hi Emily, I know we typed before, but don't go to CT. We are so close to Boston and BCH is a center that truly understands FPIES. Dr. John Lee out of Boston Children's is on the Board of the FPIES Foundation... and you get a whole team working toward your progress. It can take awhile to get an appointment, but once you are in the system, its like gold. Who you have as a pediatrician is also very important as not many are familiar with FPIES. Dr Judith Westrict out of Anchor is Marcus'...
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Re: Need help finding a doctor.

Chris ·
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...
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Re: Need help finding a doctor.

MarkLaBoss ·
Hi Chris, 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...
Topic

6.5 Month Old with FPIES

Courtney Hamel ·
Hi all. New mom here as my 6.5 month old just got officially diagnosed with FPIES after 2 trips to the ER in 10 days. As I'm sure most are in the beginning, I'm feeling very overwhelmed on how to navigate through this new 'norm' for our family. Bananas and oats were involved in both attacks so we're being told to avoid bananas, all grains (including oats, barely etc), rice, avocados as well as eggs and peanuts (tested positive for both of these on a skin test). I know each kiddo is different...
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Re: 6.5 Month Old with FPIES

Murphy ·
Does your child have any safe foods? Don’t feel the need to go too fast make sure you have baseline for your child. Both my boys have FPIES and neither got a safe other than breast milk until 18 months and both gained weight and grew normally. Yes FPIES kids can have failure to thrive but typically those kids had ongoing chronic symptoms and never were at baseline. Personally we had to give up on the idea of almost all packaged foods but there are limited ingredient foods that food. Watch...
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Re: 6.5 Month Old with FPIES

Emily ·
Hi Courtney, I'd be happy to talk. Email me if you'd like -- emily.a.ochs@gmail.com , and we can try to connect.
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Re: 6.5 Month Old with FPIES

Jess ·
Hmmm . . . thinking back to 7 months old- when we were first diagnosed. My son first reacted very badly to rice, sweet potatoes, and squash. Banana and all grains weren't far behind . . . So, I would avoid those foods . . . All FPIES have different safe foods- no child is the same. So, what worked for us, might not work for you . . . So, tread carefully. My son existed mainly off of breastmilk at that age, but we did manage some Gerber 2 baby food at that age (pear, carrot went well). He...
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