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September 3, 2009

Results: Idiopathic toe walking (ITW)

Well we went and saw the Pediatric Orthopedic Surgeon today. I'm glad we went "early" because it took us 30 minutes just to go through the process of signing in, especially seeing we were "new" patients. They took Superstar's picture today too for his records, which I still don't understand why that was necessary.

Anyway to the point. The Pediatric Orthopedic Surgeon looked at Superstar today, had him walk up and down the hall several times. Check his flexibility (or lack of it in the ankle area), reviewed his MRI and EMG/NCV results and told me that is diagnosis is Idiopathic Toe Walking (ITW).

Treatment: Well there are several treatment options, serial castings, botox, braces, and surgery. Some of these options can be done on their own, some can be in conjunction with other treatments.

However I was told today that Superstar's ITW is so severe that our only treatment option is surgery. The surgeon explained that we could do the serial casting and the botox, but he strongly felt that there would only be a 5% chance of them working. So in short he felt going that route would be a waste of our time and money. Surgery, would also require casting for 6 weeks after surgery, followed by Superstar having to where an ankle-foot orthosis for several years.

An ankle-foot orthosis is basically a brace that he would have to wear. His shoes would go over the brace. Part of the reason the Dr is saying that Superstar would have to wear a brace for years,  is because of how severe his toe walking is; that if not made to wear the brace of the extend period of time that Superstar would go back to toe-walking. (At least that is the doctors opinions)

I of course still have to talk to DH about all of this and we still have to process everything that was said. We could even go and get a second opinion, something the doctor even told me today, I could do. As I mention before in order to get a second opinion I would have to drive a several hours away. There simply is not another doctor with this specialization in my area. The doctor told me today that in the few months he's been in town, that he has seen 15 other cases like my sons, that have ITW, and that we are the first ones he has told that needs surgery. The doctor told us that even though he feels there is only a 5% change of the serial casting and botoxing to work that he would still do those things if that's what we wanted to do.

This was not exactly the news we wanted to hear today. Please pray for us.


  1. Just seeing this now. Yes, I will pray for you guys - for wisdom in what to do and what other options should be.


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