Who coordinates all the treatments/therapies for you? Looking for a doc who sees all the pieces...

[Anonymous]

Honestly, i think you should make an appointment with a developmental pediatrician and put the question to him, as I suspect they are all different. Even having a diagnosis, our doctor is tied in to all the various interventions and recommends terrific practitioners, he will trouble shoot with teachers about issues at school (and advise about appropriate schools), is extremely knowledgable about medications, helps with behavior modification when necessary. It isn't about the testing.

That being said, my DS has an ASD, so hopefully someone will come along who also has a child with a genetic syndrome.

[Anonymous]

Anonymous wrote:8:53 here. My DD is 8 months old, so we are at the start of our journey. The positive part about the brain disorder being identified as genetic is that it means we don't have to subject DD to any more tests. We know the cause, we know it won't get worse, and we move forward. Still hoping someone might answer the question as to what specifically a developmental pediatrician might do, and am wondering whether it wouldn't be as helpful for us where the neurologist/geneticist are most in the know as to symptoms of the disorder.

My child (now 4) has hypotonia, movement disorder, eating disorder, hearing loss, seizure disorder and chromosome duplication. I absolutely think you could benefit from a developmental pediatrician. It can take 6-8 months to get a first appt, so even if you think you might benefit, get an appointment. Of all the doctors my child sees, I think the developmental pediatrician has helped us the most (well maybe second to the feeding disorders doctor). It was the dev. ped who had my child take all sorts of tests to find genetic disorder as well as check for other disorders. He even went against the (then) neurologist we were seeing and told us point blank to see a movement disorder specialist whereas the neurologist thought my child had much less movement disorder than some of his patients (not that he might be helped).

As for complex care, I think ask for it if you need it. Our complex care doctor suggested we see a physiatrist (physical med. specialist), I don't think I would have thought of that. Also suggested seeing another geneticist (since we didn't care for the bedside manner of the first one).

If I had to choose between dev. Ped and complex care, I would chose dev. ped, hands down. A dev. ped is much more on top of what a child's development is at any particular age, much more than a pediatrician. He has suggested different courses, therapies, doctors, tests and just keeps an eye on things.

[Anonymous]

OP Here -

15:58, what type of movement disorders and eating disorders does your child have? I wonder if my daughter would benefit from those types of doctors. What are the names of the docs (and the practices) you see for that? Also, who is your Dev Ped?

Called Dr. Shapiro - not open to new patients at this time. We do have an appt with Dr Conlon scheduled for Oct. Which Dev Peds travel outside of their office to see the child in the environment?

Thanks!

[Anonymous]

To OP. your neurologist (or dev ped)should be able to recognize if your child has a movement disorder. Ask him/her next time you go. If you need a specialist, there is a movement disorders clinic at Children's Hospital. Your child does seem to have a lot of issues around the mouth, you could call a feeding clinic if you think that would help. The way into the feeding clinic at Children's is thru the GI department. I guess because your child already had been identified to have reflux, how you figure out if there is more going on I don't know. The reason to go thru the GI dept is to rule out any physical disorder that may cause feeding issues. My child does not have any physical or chewing issues related to food.

[Anonymous]

We've tried Complex Care at CNMC - we still see them every now and then - but honestly, I haven't found it to be all that helpful. I'm interested in checking out this Dr. Shapiro that a few of you mention above. Can someone provide his website or contact info? I've Googled him, but a few different Dr. Shapiro's come up. Thanks!

[Anonymous]

It's Dan Shapiro.

[Anonymous]

Dan Shapiro in Bethesda maryland

[Anonymous]

We just saw Dr. Conlon for our ASD child and he was great!!! He made a lot of suggestions, gave us "next steps" and had good resources.

[Anonymous]

I'm a new mom here to DC, and we have a son who is almost 13. We would like to find him a devleopmental ped. I got loads of referrals for neurologists for him (he also has epilepsy)......but not anything for reg. ped./devel. ped.
I also received a name for a psychiatrist for my other son, here in town, Dr. Jean Thomas. Anyone know her and what you think of her??? We live near Rockville/Potomac, I'd rather not have to drive all the way to DC Children's for a ped. appt. for my kids, if possible.......hospitalizaiton is one thing.....but not just to the "dr."........so, and I hear a lot about Dr. Shapiro here, looking online he does not accept new patients nor insurance??? Clarification please......he is the closest dr. by far, however, we do need someone who covers insurance is willing to listen and has a good head on their shoulders.....we've been doing this for 10 years....we just don't have the time/energy to "train" a new dr.

[Anonymous]

oh, and thanks in advance for any information. I appreciate the help.

[Anonymous]

Dr. Shapiro is not the only dev ped in the area. A lot of people see Charles Conlon (I believe he is in Bethesda). Karin Belsito is also good and she is at the Pediatric Care Center in Bethesda. Not sure about Dr. Conlon and insurance but the Pediatric Care Center takes a few plans. Otherwise, you pay and submit out of network (that is what we had to do).

[Anonymous]

The idea of a developmental ped. is that they know more than your typical child development....they are familiar w/ special needs......and can serve as a "reg. ped." and a specialist all in one (neurol./devel. psychol.) Most neurologiests we've dealt w/ are more about the medical side of the neurological "disorder/diagnosis" you have and the idea is that any developmental/educational issues could be discussed more w/ the devel. ped. than a ped.neurologist....then, these are all "general" statements and not true for all docs! Basically, what you are trained in is typically your default position......right??? There are many combos to use, some folks use a behavioral or developmental psychologist and a reg. ped.....others use neuros/peds. or develop/neurol.....u just need to use the best support for your child...it's another set of eyes on your child......but it's more money too as you r paying more copays! lol......so, your child's health plan is up to you......if things are working well for you now, I wouldn't change/add another dr.......but if u find you need more support a devel. ped. may be helpful for you.....it's your call.