Recommendations for Developmental Pediatricians in Greater Boston area?

Mmm79

I have been lurking here for a little while.  I have concerns about my 15.5 month old DS- specifically his lack of pointing, waving and joint attention/shared experience behaviors.  I have scheduled an appointment with DS's pediatrician and will be asking for a referral to a developmental pediatrician- but I have no idea if there is a specific clinician or team that is better/best in my area?  In my google research, it looks like Mass General Hospital and Boston Children's Hospital each have departments devoted to developmental issues, including ASD.  Has anyone here had experience with either?  

To say that I am absolutely terrified right now would be an understatement.

Thanks in advance for any insight. 

Junebug060609

No recs, but I think I recognize your name from the AL boards. My DS has an ASD dx. I'd be happy to talk with you via pm if youd like.

BTW, it is awesome you are pushing this so early on. I know it's scary as hell, but its good for your baby My pedi wouldn't listen until DS was 18m, probably bc insurance wouldn't cover things till then. Whatever is going on with your LO, the sooner you get help, the better.

I also second calling EI. It often takes months to get services rolling (well, it did for me in California and Virginia), so the sooner you start the better.

typeset

Sending you a PM in a bit.

Mmm79

@-auntie- Thanks for the response.  I had read that the wait lists were long, which is why I wanted to get DS on one as soon as possible.  However, do you think that they wouldn't be willing to see him for an evaluation before he is over 2 years old, even if I could get him an appointment?  I thought that it was encouraged to seek interventions as early as possible and I thought I had seen that some folks here got a dx as early as 18 or 20 months, but maybe I misunderstood? I just want to be as proactive as possible because I keep reading that the earlier you get help, the better. 

As for EI, DS was in EI for some PT and just discharged in April.  I had contacted them when he wasn't sitting independently at 7 months.  Of course by the time they evaluated him at 8 months he was sitting!  He didn't "officially" qualify for EI PT, but they took him into the program based on clinical judgment and he received twice a month PT through April- and made great strides.  In April they did an evaluation and scored him in the categories of Adaptive, Personal-Social, Communication, Motor and Cognitive.  He scored over 100 in every category but adaptive where he got a 90.  Since the criteria for continued services was 77 or below, he was discharged.  However, there was no discussion at the evaluation about pointing, waving or anything about joint attention or shared experience.  I honestly didn't even know he was supposed to be doing those things until I stumbled across it in a book and started Googling.  Then I started observing him based on what I was reading.  When I called my pedi last week to express my concerns, she seemed to think that since EI just discharged him in April, they wouldn't take him back?  But maybe I should give them a call and express these new concerns?

 

@Junebug060609 Thanks for the response. Yes, I have been active on the AL boards- I recognize you, too.  As I said in my response to @-auntie- , we are already in the EI system, but I wasn't sure about calling again.  But I think maybe I will just to get the ball rolling.  In my experience so far, it hasn't taken a long time to schedule the evaluation and begin services, but maybe that's because it was PT?

I should add that I think another thing I want to bring up with EI is that his language hasn't progressed all that much since the evaluation 2 months ago.  He's added "hi" (recently) and seems to be trying to say "strawberry" (staba), but he has decreased his saying of "mama" and even now, I am not sure he knows what it means beyond saying the sounds.  Of course, he does seem to know "dada" and says that pretty frequently.  

 

Thank you for  

 

Mmm79

@auntie Thanks for the response.  I had read that the wait lists were long, which is why I wanted to get DS on one as soon as possible.  However, do you think that they wouldn't be willing to see him for an evaluation before he is over 2 years old, even if I could get him an appointment?  I thought that it was encouraged to seek interventions as early as possible and I thought I had seen that some folks here got a dx as early as 18 or 20 months, but maybe I misunderstood? I just want to be as proactive as possible because I keep reading that the earlier you get help, the better. 

As for EI, DS was in EI for some PT and just discharged in April.  I had contacted them when he wasn't sitting independently at 7 months.  Of course by the time they evaluated him at 8 months he was sitting!  He didn't "officially" qualify for EI PT, but they took him into the program based on clinical judgment and he received twice a month PT through April- and made great strides.  In April they did an evaluation and scored him in the categories of Adaptive, Personal-Social, Communication, Motor and Cognitive.  He scored over 100 in every category but adaptive where he got a 90.  Since the criteria for continued services was 77 or below, he was discharged.  However, there was no discussion at the evaluation about pointing, waving or anything about joint attention or shared experience.  I honestly didn't even know he was supposed to be doing those things until I stumbled across it in a book and started Googling.  Then I started observing him based on what I was reading.  When I called my pedi last week to express my concerns, she seemed to think that since EI just discharged him in April, they wouldn't take him back?  But maybe I should give them a call and express these new concerns?

 

@Junebug060609 Thanks for the response. Yes, I have been active on the AL boards- I recognize you, too.  As I said in my response to @-auntie- , we are already in the EI system, but I wasn't sure about calling again.  But I think maybe I will just to get the ball rolling.  In my experience so far, it hasn't taken a long time to schedule the evaluation and begin services, but maybe that's because it was PT?

I should add that I think another thing I want to bring up with EI is that his language hasn't progressed all that much since the evaluation 2 months ago.  He's added "hi" (recently) and seems to be trying to say "strawberry" (staba), but he has decreased his saying of "mama" and even now, I am not sure he knows what it means beyond saying the sounds.  Of course, he does seem to know "dada" and says that pretty frequently.  

 

Thank you for  

Mmm79

Sorry- not sure why that posted again when I tried to edit it.  And now I can't seem to delete the duplicate.

ShieldMaiden

You can call around to find out current wait lists. I did that last June when I was trying to get my then 23-month-old DD evaluated. Our EI center recommended getting on multiple wait lists.

At the time, Boston Children's had a wait list of one year. They told me I would receive a call to schedule the evaluation 6 months from the date they received the paperwork, and the appointment would be about 6 months from that date. They do a team evaluation.

Floating Hospital for Children at Tufts Medical Center (CCSN department) also does a team evaluation. I submitted paperwork in June, and got an appointment notice in August for an evaluation scheduled in the first part of October.

We were able to get into a developmental pedi through the same health system as our regular pedi. Since we ended up loving her so much and we ended up with the services we needed, we opted not to do the evaluations through Children's and the Floating. If you'd like our doctor's name, send me a PM.

Mmm79

@ShieldMaiden Thanks for the response.  I just sent you a PM.

Junebug060609

My DS got what basically amounted to a provisional dx at a day shy of 21 mos (last June). In California if they are under3 and labeled "at risk" that will get them services. In Virginia you need the actual dx, which we got in January when DS was 27 mos. Not sure how Massachusetts works. Both in California and here the wait for developmental pedi appts was months, so for sure pursue it now. Worst they can tell you is to call again later, best case you get a leg up on getting him in asap. It's worth calling EI to ask.

If I could make a suggestion... don't go aloneto the ddevelopmental pedi appt. I had to bc of DHs work and it was a hard experience even before they dropped the A-bomb (I was completely blindsided by it, so you have a leg up on me there).

Your DS sounds a lot like mine a year ago. The lack of pointing, shared interest, waving, few/declining words. How does he do with responding to his name? This time last year was so hard for me. Knowing something wasn't right, but not knowing what...and thenbeing told what and having to adjust to that. Not to mention DS was in the midst of his regression and it was scary as hell to see him moving backwards and not knowing when it would stop.

There may be something else going on with your DS, I'm certainly no doctor, but I'm absolutely here if you need an ear.

Mmm79

Thanks @Junebug060609

 

I just have a very bad feeling that something is off w/DS.  As for responding to his name, I paid attention to that at around 12 months and he seemed to do it ok, so I hadn't really paid attention again until this weekend when I was looking for it.  I'd say it's anywhere from 70/30 (responds) to 50/50 based on the last two days. 

As for shared interest, when we are playing "chase", he will take off, then look behind him to see if I am following him and if he needs help with something, he will turn back to me- for example if a toy is not on and he goes to it and presses a button that should make noise, if it does not he turns around and looks at me.  But like I said, no pointing and no bringing me things.  He seems social and happy- giggles and smiles at things- but does not seem to engage in any pretend play. He plays peek a boo, but does not initiate it (so I say "DS, peek a boo?" and he will cover his face with something and then pull it off and smile). He will look to something that I point at and he does seem to recognize me when I have left a room and renter, but it's definitely not every time.

 

Sorry, I am rambling a bit here. I know no one here can dx him via the internet.   

typeset

Our second opinion was at Children's in the fall of 2012. At that time, they were fast-tracking evals for kids under three. It was two months from submitting our paperwork until he was evaluated. If you can, tell them when you submit your packet that you can have him in the same day if they get a cancellation. Still sending you a PM with more details about our experience and current clinician.

Mmm79

@typeset Thank you!

 

Mmm79

@Junebug060609 I am sending you a PM