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**st. augbride**

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in Special Needs

I was reading your torticollis FAQ and would like to learn more about how Benign paroxysmal torticollis was diagnosed in your son. Who DX'd it?

I think Nate has this. His trunk also bends and he has nystagmus like described in the Wikipedia page I looked at.

TIA!

WAY 2 Cool 4 School


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Re: **st. augbride**

  • st.augbridest.augbride member
    We honestly never got an official diagnosis of BPT, but a more general diagnosis of benign paroxysmal dystonia, which encompasses BPT. He got this diagnosis from a neurologist b/c he also has had a few other similar movement disorders come and go, nystagmus being one of them actually! He developed it at around 5 months and then it was gone by 7 months. It just is obvious to us that he has BPT as his PT did nothing to make the tilt go away, and then once is switched sides on us our very experienced PT said she had never seen that and it's something different. It used to involve his whole trunk too, but less so these days. He was almost always in a tilt his first year and it definitely would further affect his gross motor skills and balance. Even now the tilt still comes and goes and switches sides. We find a right tilt throws him off much more than a left for some reason. They tend to last 1-2 weeks and then go away. There is a really active facebook group for BPT which I recommend checking out.
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  • Assembly_ReqdAssembly_Reqd member

    Thanks for the info! I will bring the BPT wiki page to our next neuro appt in Nov. and I will also check out the Facebook group...

    ETA Now that I have read more on this I think Nate having this would be a bit of a long shot. He does not have any spells like they describe but it was interesting learning more about it!

     

     

    WAY 2 Cool 4 School


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  • st.augbridest.augbride member
    Ds has never had the vomiting or anything other than the intermittent tilt. Many kids on the BPT facebook group only present with the tilt and associated balance issues. We also don't have any migraine related issues in our family, though I did deal with vertigo as a kid.
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