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 my trust in them. And if others have had bad experiences, I'd appreciate recommendations for doctors in the area -- considering going to CT or Boston.
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' pediatrician and she has been amazing in terms of working with the Boston Children's Team.
Finally, County Square Pharmacy, in Attleboro is a compounding pharmacy that has been really beneficial contact. We have tried a few compounding pharmacies that are closer, but we have found them to be the best and make the drive there for all our scripts now, just because they are amazing. Simple things like ear infections become really big deals when there are traces of milk protein in the normal cvs/walgreens flavorings.
Hope this helps,