OP here, I just wanted to give an update. We saw a neurologist at Children's and she (thankfully) didn't find any scary reasons for the weakness. Ie. no evidence of stroke or serious neurological disease.

But she did confirm a diagnosis that DS's OT had suggested a while back: Developmental Dyspraxia and hypotonia. I don't know what to think right now. I guess I'm just processing this and what it means. For so long, I just hoped that he had some minor strength issues and that we could just do some therapy, get him strong, and be done with it. But at the same time, I knew it wasn't that. It's an odd feeling to feel relief because you are validated, but paralyzed with worry about your baby. Well he isn't a baby, but he's *my* baby and it's hard to think about his struggles and the road ahead of him.

15:55 here. My child sees a neurologist, Developmental pediatrician and a physiatrist. A neurologist is a good idea. But I would still consider making an appointment with a developmental pediatrician. The neurologist may be able to recognize that there are neurological issues that are causing your child's issues, but the developmental pediatrician will have tests done that will tell you why there is an issue. That why has helped us make sure our child received all the care for issues we did not know might be a problem. (Think of those football players who die on the field with an unknown heart ailment, well we found out our child might have among other things a heart ailment.) So our child had an appointment with a cardiologist with cardiac sonogram etc. (nothing invasive) which told us he didn't have a heart ailment, even though 50% of other children with our child's issue have a heart problem.) So, better to find out in a cardiologist office than on the football field at age 16.

If you make an appointment today with a developmental pediatrician, it won't be until July or August probably and you will have seen the neurologist within 2 months so you can either determine at that time that you want to keep the dev. ped. appointment of you can cancel it and someone else will get your appointment. But after you see the neurologist you should be able to tell. So you get an appointment with neurologist in March and then make an appointment with dev. ped. and you get it November this time. See how it benefits you to make the appointment and decide in 2 months you don't need it or to keep it.

My child is doing great. He has some issues, but nothing he can't deal with or we his parents can't deal with. I would err on the side of too much information than too little information. It is your call, your child.

Anonymous wrote:OP here. On the advice of our current pediatrician, I have now made appointments with a neurologist and a physiatrist. I will talk to them more about whether or not I should consider a developmental pediatrician. I am pretty nervous and worried about what they will find/say. But I tend to be a bit of a worrier, so I am trying very hard not to do too many "what if's".

To the pp 15:55, what kinds of things did they find and know to look for in your DC?

Don't worry too much. They are not going to give your child a disorder. Your child either has a disorder or doesn't. They are going to help your child if your child needs help, or clear your child, if your child doesn't need help. More information is always better than less.

OP here. On the advice of our current pediatrician, I have now made appointments with a neurologist and a physiatrist. I will talk to them more about whether or not I should consider a developmental pediatrician. I am pretty nervous and worried about what they will find/say. But I tend to be a bit of a worrier, so I am trying very hard not to do too many "what if's".

To the pp 15:55, what kinds of things did they find and know to look for in your DC?