Developmental Pedi

realisticdreams

So we went to UVA today and met with the D.P.  His specialty/interest is CP, so that was nice.  The actual location, kind of irked me, perhaps I didn't find the handicap parking (i have a heart problem) but I had to walk up a fairly steep hill and carry Peyton and it was quite a ways and it was rainy.  

I was beat by the time I got up there.  I thought the location was odd for a clinic that does PT/OT/etc.  But anyways, moving on.

He said that basically every aspect of her development is atypical and that he really thinks she has some genetic component.  I told him genetics said we can stay on their service for 2 more years but only to come in if something new comes up or we come up with anything.  She saw them at 10 months & then again last month.  

He said he didn't have anything to offer really, but that he wants to see her in 6 more months, and probably on 6 month intervals thereafter, as well.  If I was OK with that.  I agreed that was fine.  I'm having ALL of her medical records sent to him as well, so he can review as well.

Basically, it wasn't exactly what I expected out of the appointment.  He didn't have anything to offer on her facial tics/whatever, and he said her inability to self soothe is probably partly her personality combined with everything she's been through.

 

MaxandRuby

Can I ask you a question mostly not related to this topic? It is CP and developmental pedi related. I have been wondering in the back of my head lately whether DS2 needs to see one. I'm not sure what they do. Since we just moved to a new state, I have to get DS2 set up with new referrals for everything under the sun anyway and just curious if I should add a developmental pedi to the mix.

Why did you choose to go to this doctor (not specific doctor just the kind of doctor he is)? What does a developmental pediatrician do?

realisticdreams

MaxandRuby:

Can I ask you a question mostly not related to this topic? It is CP and developmental pedi related. I have been wondering in the back of my head lately whether DS2 needs to see one. I'm not sure what they do. Since we just moved to a new state, I have to get DS2 set up with new referrals for everything under the sun anyway and just curious if I should add a developmental pedi to the mix.

Why did you choose to go to this doctor (not specific doctor just the kind of doctor he is)? What does a developmental pediatrician do?

I had wondered if we needed to see one, since it seems like it's the only specialist we haven't had to see, but I wasn't sure.  When we went at 15 months for her neuro appt they were really worried about her speech and said she needed a developmental eval.   Then I had to reschedule bc of her surgery so it's been about 4 months to get to the actual appointment.  I really don't know what they do, normally it's a team of people I think like to give autism/add/adhd diagnosis, etc.  The D.P/neurologist/psychologist.  

We just saw the D.P.  I didn't ask to see this person, I just called and said we needed an appointment, and I told them she had CP and it's who they set us up with.  I assume they basically just keep better track of development and making sure they get all the therapies they need.

He said he wants her to start in the preschool the county has for developmentally delayed kids.  They start at age 2, but she missed the cut off, so that means next year she could start school.

Full day school.  Scary.

I found this on google,

https://treatmentofcerebralpalsy.com/12-pediatrician.html 

jsugrin

Well I'm glad things went reasonably well but bummer he didn't have any great revelations for you guys.  My oldest DS has zero ability to self sooth too ( he had a severe speech delay, evaled at 9 months at 23 months and has some level of SPD that seems to be difficult to pinpoint as he's getting older).  For him I'm sure the sensory seeking aspect plays into his inability to self sooth but even after working for years now on giving him tools to do so it just doesn't happen.  It just seems to be his personality without some underlying root cause. 

Full day school at 3 does seem like a lot, wow.  DS started preschool at the beginning of summer and of course for summer she does full week only camps.  While it wasn't full day ( 8:30-12) I was so worried about him going from full time mama to 5 days a week of school.  It was so good for him, so easy, no big deal at all.  I thought maybe I'd get lucky and we'd get naps back but no such luck.  I think the full week made the transition super easy since he settled into such a strong routine.  I hope you have similar success with P when she starts school.

realisticdreams

jsugrin:

Well I'm glad things went reasonably well but bummer he didn't have any great revelations for you guys.  My oldest DS has zero ability to self sooth too ( he had a severe speech delay, evaled at 9 months at 23 months and has some level of SPD that seems to be difficult to pinpoint as he's getting older).  For him I'm sure the sensory seeking aspect plays into his inability to self sooth but even after working for years now on giving him tools to do so it just doesn't happen.  It just seems to be his personality without some underlying root cause. 

Full day school at 3 does seem like a lot, wow.  DS started preschool at the beginning of summer and of course for summer she does full week only camps.  While it wasn't full day ( 8:30-12) I was so worried about him going from full time mama to 5 days a week of school.  It was so good for him, so easy, no big deal at all.  I thought maybe I'd get lucky and we'd get naps back but no such luck.  I think the full week made the transition super easy since he settled into such a strong routine.  I hope you have similar success with P when she starts school.

Yeah I wish she could self soothe in some aspect.  I'm pretty torn now on what to do to get her some independence at nap & bedtime.  

I *think* that with the school program (I can't believe it starts at age 2!) you can do some type of personalized schedule.  Like maybe 2 or 3 full days or 5 half days, i'm not 100% sure.  I do know that I don't want my 2 year old (because she will be almost 3, but still 2 next September) riding on a bus..without a car seat.

So chances are, I will take her, even though it's a little ways away.

I need to go down there and get all the information on it, our EI said they start the process in April.

If I have EI rallying for her & a developmental pedi maybe we will get in, who knows.