Questions from a lurker.
outnumbered
member
I usually just lurk, but I have a few questions. My daughter is 4 yrs old. She was diagnosed with low muscle tone at 18 months and did not walk until she was over 2 years old. She received services through EI until she was 3 and now she currently receives PT through the school system on a 504 (step down from a IEP). I have read recent posts in which it was mentioned that their child with low muscle tone had a neuro work up. My daughter never had this done is it something I should look into? A friend suggested that I get her independently evaluated outside of the school system to see if I could get her more services. have you had your child evaluated outside the 'system'. They suggested New England Medical Center (floating hospital for children). Have you been there? Thanks.
Re: Questions from a lurker.
hi,
my daughter was dx'd with low tone as well (she's not quite two)... it was her low tone, combined with global developmental delays, that prompted a neurological consult. we just began a neuro work-up at Children's in Boston, which, as it turns out, is ranked as one of the best pediatric neuro. departments in the country by US News and World Report (didn't know this when I made the app't, but was happy to learn it nonetheless!) Just thinking, if you're in the Boston area, you may want to try Children's... We don't have any answers yet, but I've been really happy with their level of inquiry and willingness to explore every possible avenue.
All this being said, I'm sure NEMC is great as well... I suppose that's one of the great things about living in Boston- most of our options are quite good!
Good luck!
Obviously, different hospitals are better at different fields. I can't speak to Children's rankings in other specialties- the listing I was given was specific to Pediatric Neurology, which is what we were interested in:
https://health.usnews.com/health/best-hospitals/childrens-hospitals/neurology-and-neurosurgery-hospital-rankings/
And obviously, rankings like this can be subjective and should only serve as a piece of the decision-making process, rather than the whole. But it's helpful, esp. in areas like Boston, where there are SO many options and everyone's had a great (or horrible) experience at every hospital, to be able to look at somewhat "objective" (and yes, I use that term loosely!) data to help guide your decisions.
Our son Owen had extreme low tone and was diagnosed with SMA in December. We are an hour out of Boston and go to Childrens Boston. The pediatric neurology department is amazing and trust me we have lots of contact and dealings with them. They are a pleasure to work with and we are thrilled with the advanced care that Owen gets.
It was a big difficult for us to get in at the beginning...if you are interested I would get a referal from your pedi and call right away...it took us a few months to get in.
Best of luck and if you have any questions let me know if I can help!
Matthew and Christopher have low muscle tone. They were evaluated by neurologists for different reasons. We were told Chris was having seizures so he was followed by a neurologist. We took Matthew recently because the school system felt there could be a motor processing issue. I don't think we would have necessarily gone to a neurologist has we not had the other issues.
We did take both of them to a neurodevelopmental pediatrician. Christopher goes since the 2nd neurologist we saw felt he was autistic as did our ped. We took Matthew because we wanted that outside evaluation. The district felt he was very low and should be in a different placement than what we felt.
My DD has hypotonia on her left side. I am 99% sure she has very mild cerebral palsy, although she has yet to be diagnosed. We have had two MRIs at Children's in Boston (we are on the Cape). Children's is amazing, I would call immediately to get an appointment. Because they are so good, the waiting lists are long.
We are going back to Children's to see a geneticist on Friday. DD is in the middle of a full work-up (neuro, orthopedist, EI, geneticist, developmental pedi, opthamologist, physical therapist). Because her MRIs came back as normal, we may not get a diagnosis for a while.
From what I understand, low tone is never unexplained. There is always a reason for it. The problem is that sometimes the doctors just don't know what is causing it even after every test, and you never get a dx.