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Developmental Pediatricians?

ncsubridencsubride member
in Special Needs

I do not post here often but I wanted to get some opinions. 

Ben was diagnosed with pachygyria (bascially his brain did not form correctly and parts are smoother than they should be).  He is doing really well but does have delays, so far they are motor related but we will not know the extent of the delays until he is older. 

So far we are seeing the regular pediatrician and we did meet with a neuro but he said he couldn't do anything else bc it is what it is and we just have to wait and see and we would only go back to him if he ever had a seizure which is common (thankfully he has never had one). 

Should we be seeing a developmental pediatrician on top of his regular pediatrician?

Thanks

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Re: Developmental Pediatricians?

  • OctBaltBrideOctBaltBride

    My son doesn't see a dev. pedi but I am interested in your sons brain development.  Reason being my sons brain did not develop properly while in utero.  It is the right side that controls his sensory.  Developmentally he is doing beautifully, couldn't ask for better.  On the down side my son has epilepsey from this and has seizures but not often.  I have never met anyone that has something similar and who know your situation may not be similar at all. 

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  • ncsubridencsubride member
    kerri.marsh@gmail.com if you want to chat more.
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  • newmoh529newmoh529
    I didn't find the dev pedi we saw to be helpful at all. All she really did was give my DD a physical exam...before the developmental testing, by the way, so my DD was non-complient after being poked and prodded, and some standard developmental tests. After all was said and done, after spending $1200.00 ( yes, TWELVE HUNDRED dollars) she deferred to our neurologist who had recommended setting up an eeg and bloodwork. I'm sure they are helpful in some cases, but definately not in ours. We were trying to dx my DD's speech delay, and after MANY specialists, it turned out to be just that....a speech delay! She is now 4 1/2 and completely age appropriate. Good luck and God Bless!
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  • MichelleWPMichelleWP
    My cousin had the same question regarding her little girl (her brain also did not develop correctly/smooth gyri - hers is due to congenital Cytomegalovirus but it sounds similar, her motor development is expected to be the most impacted), I know when she asked her neuro she was told that the dev pedi would take the place of the neuro and at this point she was better off staying put - but when she's a bit older and they are able to get a better picture it might be a good course of action. I believe they are still seeing the neuro because she is on Keppra to try to clear some "cloudiness".
    Michelle
    3 boys (15, 8, 6), 1 girl (4)
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  • K&O4262006K&O4262006
    Ditto all the other ladies. They usually arent't ongoing pediatricians or specialist. Some medical plans allow a periodic check up but if you feel you are hooked up to the right specialists then it might be good to have one less dr appt for your little guy. He's adorable by the way!
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