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How important is a dev pedi?

JenGKJenGK
in Special Needs

I'm really struggling to find a good developmental pediatrician for Z, and am wondering if we really need one at this point.  He's been receiving services for global developmental delay since he was 2.  He's going to be placed into an autism classroom next year for kindie (based on a school evaluation).  Insurance covers no therapy, and we have a pretty good set-up (2 hrs. of speech, 1 hr. of OT, 1 hour of Floortime training privately per week).  I just don't know what a dev pedi can do for us right now.

We saw Dr. Greenspan before he passed away.  Then I held off on finding another until Z was closer to kindie.  We saw another locally, but it's been 5 months and I still don't have a report (despite my repeated emails and calls).  I've asked around to other ASD moms, and no one is really happy with anyone in the area (options include Children's National, KKI, and a couple of other solos).  There is one who people like -- but she is not accepting any new patients.  Should I go with someone who gets mixed reviews?  Any ASD moms in metro DC have someone you like?

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Re: How important is a dev pedi?

  • houndbabyhoundbaby member
    We only saw the dev pedi once to get a dx, he told us our ds doesn't have to be seen again unless we ever have any issues that we want to see him for. I don't know if or when we'll go back to see one again
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  • realisticdreamsrealisticdreams member

    We see a developmental pedi (who also runs the CP clinic) at UVA.  The wait is pretty long, for example, I just rescheduled bc it was Friday and I'm still not feeling up to all of that walking with her and now it's June 15th, for a follow up.

    I did get his report kind of quick but I wasn't very impressed.  He hinted she had something "wrong" with her because she cried when she saw him.  She had just had her surgery and a couple of MRSA abscess's lanced!  She was afraid something bad was going to happen again.  

    We will continue to go until they tell us we don't need to though. 

    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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  • Assembly_ReqdAssembly_Reqd member

    We see a neuro-dev-pedi who is also the head of the CP clinic at KKI. We like him a lot, although I was somewhat put off regarding his assessment that Nate does not have ASD based only on our office visit. He didn't do any formal assessments, which I guess is O.K., but is still leaving me unsure based on how all the other ASD kiddos on here have been assessed. *shrugs*

    He has also said that we really don't "need" him because we are organized and all therapied up but we can see him when we feel at a loss of where to go next. Our last appointment was helpful for us because when we mentioned that Nate was still stuck cruising and not walking independently since last September he got us hooked up right away with an intensive P.T. program they offer at KKI. He also gave us an official prescription for Hippotherapy which we may use this summer if the outpatient therapy program still does not get us some gross motor results.

    The reason why we like to see him is because he has taken more time to explain things we had questions about regarding Nate's MRI findings. Visits to his office are also "feel good" visits for us because he tells us how great we are doing and he wishes that more parents were like us. Embarrassed So, for the feel good reasons alone, we will probably continue to do yearly follow-ups.

    WAY 2 Cool 4 School


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  • MaxandRubyMaxandRuby member
    DS2 has seen a developmental pediatrician once. There is actually one here on base and he also heads up EFMP (we are Army). I had a consult put in to see him simply to make sure that we were doing everything we could for DS2. He pretty much said we were and he wants to see us yearly. I'm comfortable with that and really don't think we would need to see him any more regularly unless I had questions or something else came up. Checking in with him annually will help me to make sure that we have continued to get plugged into everything we need to be doing via in the military world and in the civilian world. He is truly a great resource for us.
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  • His(1&only)wifeHis(1&only)wife member
    DS has not seen a dev pedi.  He sees a pediatric psychologist who specializes in ASD.  He diagnosed Quinn based on in office observation and several different standardized eval methods.  We see him every 2 months and he is basically our "team leader" since we do private therapy.  He got Quinn set up with his SLP and OT.  He also is helping with the IEP process and getting Quinn set up with the SN preschool.  He also is very helpful for me and helps with setting up behavior management plans, dealing with sleep issues, and anything else.  At this point he is more for me than Quinn I think.  He helps me with understanding and dealing with what is going on.  I can email or call him anytime we have an issue come up and he is quick to respond.  Quinn's regular pediatrician is very happy that we see him.
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  • st.augbridest.augbride member
    Ds isn't diagnosed with ASD but we recently started seeing Dr. Dan Shapiro and I know he specializes in ASD. We only recently started working with him, but he is very responsive (got our report in a week and he emails within an hour usually when I write him) and knows the other therapists, docs and schools in the area well. From what I've seen, I highly recommend him. How old is your son? I know he was taking new patients under 4.
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