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SN moms please come in to help and advise

Anonymous
Posted by Anonymous
  • 4 Replies

My 8 year old walks on his toes, has severe coordination problems and occasionally wets the bed.  According to the doctors and the school, per IEP testing, he is not autistic and has no known learning disability.  However, he does require a 504 physical disability accommodation from the school which includes lift-bus service, severely modified PE.  They make him use a pedi-walker and wheelchair to get around the school building.  He's not allowed to use the stairs.  

Hes been through MRIs, blood work, bone scans, X-rays and  to Easter Seals for more evaluation and therapy. Lastly, he gone through what's called serial casting to both legs for months in an effort to get his feet down.  The treatment had little effect, but did make it possible for him to put on shoes and have his heel reach the sole somewhat.  I'm told this is a birth defect.  His Achilles' tendons are too short.  A surgery has been proposed as our only option. Even still, the outcome and success is highly debatable amongst the specialists.  

Does anyone have a child experiencing this?  We've had two opinions and they both are sketchy. They simply diagnosed him as an idiopathic toe walker.  

Posted by Anonymous on Aug. 8, 2015 at 12:52 PM
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Replies (1-4):
mandee1503
by Amanda on Aug. 8, 2015 at 12:57 PM
The surgery to cut the tendons is very successful. My ds has had it done in his legs and will again when he grows and they get tight again. Have they talked about Botox injections? That's something that can be done prior to surgery.
Anonymous
by Anonymous 1 - Original Poster on Aug. 8, 2015 at 1:06 PM

No they haven't talked about Botox.  I will bring that up!  Also, their attitude toward the surgery is meh...last option. I'm apprehensive because of it.  He spent months and months in casts already.  I'm just panicking I suppose.  Thank you for sharing a positive story! I needed this.  


Quoting mandee1503: The surgery to cut the tendons is very successful. My ds has had it done in his legs and will again when he grows and they get tight again. Have they talked about Botox injections? That's something that can be done prior to surgery.


faire_jour
by Ruby Member on Aug. 8, 2015 at 1:08 PM

My brother did this as a child. They did physical therapy, but that wasn't the issue, it was anxiety. He still does it at 40 when he is super nervous.

ElvinCephalopod
by Gold Member on Aug. 8, 2015 at 1:18 PM

has he met with a physical therapist for the walking and mental health therapist or psychiatrist for any other issues? a regular dr will not diagnose autism, and a PT will be able to give better information about the walking, and what to expect after surgery

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