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Update to: hoping you all can help

mhg2010dsrmhg2010dsr member
in Special Needs
We saw the special needs doctor at our practice today for our second opinion/droopy face. She listened to my concerns. She saw what I was talking about. He actually kept his toes curled on his left foot almost the whole time, sitting and standing, which he doesn't always do-just like clenching his fist. She believes he has mild CP. She doesn't think we need to see a neurologist at this point. She wants us to continue with EI and get evaluated for OT and maybe ST. We will reevaluate for PT when/if needed (he was delayed but not enough to qualify).

I just wanted to update you all and thank you for the encouragement and guidance you have shown me.
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Re: Update to: hoping you all can help

  • thetwinkies&Vivithetwinkies&Vivi member
    I'm glad you have some answers and a plan of action now. I hope the evaluations can help arrange the appropriate services for him. Good job listening to your intuition.
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  • ToastieSimonsToastieSimons member
    I'm glad your doctor listened to you and made you feel vaildated.

    However, I will give you one piece of advice.  If you see a neurologist now, you'll build a rapport with them.  It will be a doctor who is able to watch and observe them in their neurological development.  It may be beneficial to go just to have a doctor who has seen your child at multiple points in their developmental stages.

    Another doctor I love is a good physiatrist.  They specialize in how the muscles interact with the skeleton.  They're great for observing tone and managing side effects of CP or other tone issues.

    But, it sounds like your pedi is proactive and willing to listen to your observations which is great!
    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
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  • MaxandRubyMaxandRuby member
    I am curious as to why the doctor didn't feel it necessary to see a neurologist for a neurological disorder?  Personally, I'd go ahead and make an appointment with one not only for what Toastie said (which is super true) but also to get a doctor who is more specialized and to get medical records stated with that.

    I am a mother of a 4.5yr old with CP.  We do not see a physiatrist and I cannot tell you why we don't (we see an orthopedist though).  @ToastieSimons, I have always been curious as how a physiatrist differs from other specialities that DS2 may need.  I suppose I could look that up too.  :-)  I have brought it up to our developmental pediatrician and was basically told that he feels DS2 is pretty well covered with the specialists we have (orthopedist, ophthalmologist, PT, OT, SLP, brace guy, neurologist, and I think there is one more but it is slipping my mind at the moment).
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  • ToastieSimonsToastieSimons member
    MaxandRuby said:
    I am curious as to why the doctor didn't feel it necessary to see a neurologist for a neurological disorder?  Personally, I'd go ahead and make an appointment with one not only for what Toastie said (which is super true) but also to get a doctor who is more specialized and to get medical records stated with that.

    I am a mother of a 4.5yr old with CP.  We do not see a physiatrist and I cannot tell you why we don't (we see an orthopedist though).  @ToastieSimons, I have always been curious as how a physiatrist differs from other specialities that DS2 may need.  I suppose I could look that up too.  :-)  I have brought it up to our developmental pediatrician and was basically told that he feels DS2 is pretty well covered with the specialists we have (orthopedist, ophthalmologist, PT, OT, SLP, brace guy, neurologist, and I think there is one more but it is slipping my mind at the moment).

    Our physiatrist prescribes Baclofen, orthotics, equipment, and injects Botox
    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
    Report Reply
  • MaxandRubyMaxandRuby member
    Interesting! Our neuro will do Baclofen (we have not done this yet) and Botox. Our PT prescribes the orthotics, but we also see an orthopedist and we have a brace guy that casts DS2 for the braces, and the PT also starts the equipment process.  Thanks Toastie!  :-)

    Sorry to hijack your post MHG!
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