@ related- developmental pediatrician?

[ProfessorArtNerd]

Background- Joey is 3y 1m, and has a speech delay. We already receive early intervention services in home (speech teacher and kindergarten readiness teacher, 45mins per week each)

Tomorrow is his appointment with the developmental pediatrician. Finally, we made the appointment in March (!!).

If anyone has the time and inclination to tell me about your experience with developmental peds, would you mind sharing? On ELECTION DAY of all days, I’m starting Xanax now lolsob

[momof2]

Well, here is my story:

In our case, we got referred to a developmental ped after early intervention was involved. My daughter had shown delays in all areas. Our regular ped kept saying “she is so smart, she will catch up.” But we had been having three different types of weekly therapies at our house for a year and I wasn’t seeing improvement. I expressed my concerns to the regular ped and they were sort of like “well, if you really want to we can refer you to neurology and a developmental ped.” And in my mind I was like “I have never even heard of this kind of doctor and why has it taken so long to get this referral.”

So, after months on the waitlist, we saw her. In parallel, we were getting testing from the school system that would provide an autism diagnosis. I honestly cannot remember if the school or developmental ped said “autism” first because it was all right about the same time.

We walked in, she asked a lot of questions and was like “yes, your kid has autism.” She didn’t run us through formal tests, she was just like “yep. She has it.” My husband was put off by her bedside manner. I appreciated the candor after three years of feeling like various regular peds blew me off when I expressed concerns.

She also gave my kid a hard look and also focused on her toenails. She said “look, I really recommend genetic testing.” We did that. They called me a few weeks later and said “she is negative for fragile x.” I thought that meant genetic testing was done. Apparently it wasn’t, because the call came later giving the specific diagnosis. She also gave me the “real deal” that this genetic diagnosis meant an outcome of moderate to profound intellectual disability. Again, the candor was a breath of fresh air even if the news was devastating.

I will be forever grateful that she saw the “syndromic signs” that the regular peds could not see. I’m so glad to be able to name exactly what is going on. I literally said to my husband last night “aren’t you glad we have a specific diagnosis and aren’t just flailing around having no idea what was going on?”

I’m sure you have an entirely different situation. But I will say that having someone who specializes in figuring this stuff out is really helpful. Regular peds default to “everyone will revert to the mean”, and I hope your kid will do that and catch up. But it was great for us to have someone that sees the harder situations help us. I’m sure plenty of kids that see a developmental ped do catch up with the right therapies. But they can give advice on therapies. They also can prescribe for behavioral situations that regular peds won’t touch if you need that at some point.

[ProfessorArtNerd]

Her toenails? Wow, interesting. My older daughter is autistic and I think maybe Joey is too. But she and my middle son went through testing for that (middle son doesn’t have autism).

Thank you for sharing your experience with me!

[jg183]

I had also never heard of one until we ended up going to one but I think more people need to know about them (although they already have such long wait lists so apparently everyone knows about them)!

Pediatricians have so much to know about in terms of illness that I'm glad there is a specialty devoted to this but I feel like too often peds are hesitant to send people to them- I don't know if it is because they are so full or they don't see the kids long enough in the appointments but they really are the experts.

Ours... he knew his content but his personality was the most blah I've ever met. It was so hard to even handle the appointments with him I almost lost my mind each time. But he did get us on the right track

[plutosmoon]

DD saw a developmental pediatrician when she was 3.5 years old. It's been a while, but I believe they did an ADOS assessment. We submitted a parent and teacher questionnaire prior to the appointment, these had already been reviewed by the doctor. The appointment was a couple of hours, they asked us some more questions, attempted to ask DD questions and had DD play with specific toys. I think they may have given her some instructions related to the toys. They did some physical exam type things as well.

I honestly can't remember if we were in the room, or we were watching from the hallway during the assessment. It was a pretty easy appointment, we left with diagnosis of Autism, SPD and some sort of language diagnosis along with a list of suggested IEP adjustments. We implemented some of the suggestions, but some suggestions were really intense or impractical in my opinion for a 3 year old. We were also referred for genetic testing, which found nothing.

They had us come back in a year, which was with an intern instead. The actual developmental pediatrician position was phased out, so we never managed to see her for any follow up.

Good luck tomorrow!

[ProfessorArtNerd]

Update-

The doctor was very nice, and played with Joey for a little while, and had already read his file. She says he’s on the spectrum, just barely. I’m having a little bit of a hard time wrapping my head around all three kids having a diagnosis. (Lucy 16, AuDHD, David 9, clinical anxiety and ADHD, Joey 3 ASD). It’s ok, I’m jus having a moment I guess.