Developmental pediatrician - is it necessary?

[tantrums]

In December, when DS was first diagnosed, his doctor recommended we see a developmental pediatrician. This one is supposed to be very good - out of Good Shepherd in case anyone in PA knows of them. I JUST got the appointment - had to receive, fill in a book of forms and wait for them to review them first. It is a whole year away.

 

I don't know. It seems silly to me. There were no developmental concerns for DS prior to PANDAS. He just had a full child study team eval and they found above average intelligence, no need for OT (although a sensory defensiveness the psych discovered brings that to question) and he will be getting a 504.

 

I was debating looking elsewhere to see if I can just get an appointment sooner with a different dev. pediatrician since he is currently in full exasperation and the pandas is the issue, rather than wait a year. He is already 7.

 

Does anyone have an opinion on if this is even helpful?

[Megs_Mom]

In December, when DS was first diagnosed, his doctor recommended we see a developmental pediatrician. This one is supposed to be very good - out of Good Shepherd in case anyone in PA knows of them. I JUST got the appointment - had to receive, fill in a book of forms and wait for them to review them first. It is a whole year away.

 

I don't know. It seems silly to me. There were no developmental concerns for DS prior to PANDAS. He just had a full child study team eval and they found above average intelligence, no need for OT (although a sensory defensiveness the psych discovered brings that to question) and he will be getting a 504.

 

I was debating looking elsewhere to see if I can just get an appointment sooner with a different dev. pediatrician since he is currently in full exasperation and the pandas is the issue, rather than wait a year. He is already 7.

 

Does anyone have an opinion on if this is even helpful?

 

Keep the appt - if you need it next year, use it. If not, cancel. A month before appt, call and see if they understand and treat PANDAS at all. If not, cancel anyway.

 

In the meantime, run, don't walk, to a specialist that can help you with PANDAS as soon as possible.

 

Wish someone said that to me before the Developmental Ped took titers (negative) and told us and our pediatrician that there was nothing to be done, she did not have PANDAS, she had GAD and we probably did not notice before (you mean before last week????) He was wrong, but caused a year's worth of #@^&%.

[tantrums]

Oh we've also seen Dr. T actually. Our ped is being great, our immunologist (had been seeing her just for croup for a couple years and she turned out to be GREAT with this as well!) and have appointments at CHOP and Bristol Myers Squibb in the next few months. Starting to wonder if it's overkill at this point

[peglem]

I'd keep the appointment and a month before, decide if this is something that could help at that time. You have no way of knowing what you'll need a year from now. How ridiculous...making kids with developmental problems wait a whole year for the help of a specialist! A year in the life of a child is a very long time w/ lots of changes...I bet they seldom see new patients that still have the same problem they were referred for.

[tantrums]

I know - really? I work in Developmental Disabilities for the state. Early intervention is crucial!! Doesn't help much if you have to wait a year for the doctor, does it? Luckily, I don't feel this is a critical need for us at the moment.

 

I agree - I'll just hold on to the appt. for now and see later on. I'm doing the same with Bristol Myers (UMDNJ children's hospital). I made the CHOP rheumatology appt after that one. BMS is in october and CHOP is August, so if I'm happy with CHOP I'll cancel BMS.