Need resources in Boston (FTT, peds endocrinology, etc)

[NCGrandma]

My 15-month-old DGD2 continues to be stuck at the very bottom of the growth charts and barely holding her own, despite taking in at least 150% of the daily calories she should need. After not getting anyone local to take their concerns seriously, my family is ready to expand their horizons to get a full work-up and try to figure out what's going on. Boston is their obvious next step, despite being a couple of hours away.

Any experience with growth clinics, FTT, endocrinology, GI, etc. resources in Boston? My DIL has heard both good and bad things about Boston Children's Hospital. Mass General might be another option, about which we don't know much. DIL is feeling a bit burned by the specialists in her area who seem to think she is lying about DGD2's food intake and who think that all growth problems are 'the mother's fault.' Argghhh!!

Any recommendations or anti-recommendations welcome. Feel free to PM me if you prefer. And I would welcome some P&PTs since I know that many BBBers have also had experience with trying to find medical specialists who will take you seriously.

[hollybloom24]

I would go to Children's personally, unless there is some compelling reason to go to MGH. The Growth and Nutrition Program at Children's is nationally known. There is a reason why Children's is always ranked 1st or 2nd in the country! We go to Children's for everything and my husband is a physician there. I have never had any provider not take me seriously - totally the opposite - I always feel like my kids are very well cared for and everything is taken seriously. I would not worry about this. Children's takes complaints against providers very seriously, and the staff who work there understand this and are trained to be sensitive to people.

See this: http://www.childrenshospital.org/clinicalservices/Site2160/mainpageS2160P11.html

If available, is so much easier to go to Waltham than the Longwood area. It is basically right off 95/128. But I don't know if the services you need are offered there, but worth asking.

Good luck!

[Momit]

We have a good friend who is a physician at Children's and he has nothing but good things to say. He's an incredible doctor and could have gone to work anywhere in the country and he chose Children's. I know it's not the same as knowing someone who was a patient there but I would absolutely trust him when he says it's one of the best. Unfortunately he is in a totally different specialty than what your DGD needs.

[dogmom]

I have intimate knowledge of both places. If you need a more coordinated/holistic approach in most areas Children's is your better bet. It has had programs that utilize a wide range of resources for decades. My son goes to a nurse practitioner who is in the PIPS clinic that is part of developmental medicine. She JUST deals with issues around incontinence from every angle. If I went to MGH, which is where I would get most my care, I would see a urologist that would have only some of the tools. So for the kind of issue you are talking about I think Children's is better. Some of the bad rap comes from it being a big teaching place with lost of sick/involved kids. So appointments get lost, parking is expensive, waits are long, some people probably don't treat you with the kind of understanding you are used to at you local peds because, honestly, they might be looking at you thinking of the 4 other parents/kids in much worse situations than you are. I'm sure there is burn out.

[wellyes]

I have intimate knowledge of both places. If you need a more coordinated/holistic approach in most areas Children's is your better bet. It has had programs that utilize a wide range of resources for decades. My son goes to a nurse practitioner who is in the PIPS clinic that is part of developmental medicine. She JUST deals with issues around incontinence from every angle. If I went to MGH, which is where I would get most my care, I would see a urologist that would have only some of the tools. So for the kind of issue you are talking about I think Children's is better. Some of the bad rap comes from it being a big teaching place with lost of sick/involved kids. So appointments get lost, parking is expensive, waits are long, some people probably don't treat you with the kind of understanding you are used to at you local peds because, honestly, they might be looking at you thinking of the 4 other parents/kids in much worse situations than you are. I'm sure there is burn out.


I agree with this. All the peds around here rave about the doctors at Children's. No one likes going to Children's. But I'd definitely recommend it.

I took DD to Children's for a failure to thrive concern. It was logistically a pain, lots of hassle, it was frustrating and depressing. But it was clear to me that the 2-3 doctors I talked to were very competent. None of the physicians rushed me, and they listened to me . They worked together to figure out a plan. All for a child who was getting checked out "just in case" even though she was happy - just underweight. In a hospital where every elevator and waiting room were just full of kids with obvious, serious medical concerns.

So, in your shoes, I'd definitely go the Children's.

[ett]

I would definitely go to Children's. My DS's both see specialists there and we have been very happy with the care they've received.

[starmommy]

Love Children's! My daughter saw Dr Rachel Rosen for GI issues. She was great, took the time to listen, and come up with a plan. And best of all, helped my daughter.