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Juvenile Huntington’s Disease Forum concerning all aspects of JHD

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Old 09-01-17, 08:47 PM   #1
MrsG
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Default advice needed regards 4yr old

Hi just looking for some advice really grandson who I have guardianship of is 4 years old my ex husband has HD parent of my GS has not and won't be tested. I have some worries with regards my GS and his mobility very rigid movement in left leg can walk but like a toddler and when he runs his left leg swings out. I have taken him to consultant as gp thought physio would fix issue but have been advised it is either brain or spinal issue so have now been referred to neurologist.

Not sure if I am being overly cautious/paranoid but could symptoms start to show I'm such a young child.

Any advice or help would ne truly welcomed
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Old 11-01-17, 07:12 AM   #2
Trish
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Default Re: advice needed regards 4yr old

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Originally Posted by MrsG View Post
Hi just looking for some advice really grandson who I have guardianship of is 4 years old my ex husband has HD parent of my GS has not and won't be tested. I have some worries with regards my GS and his mobility very rigid movement in left leg can walk but like a toddler and when he runs his left leg swings out. I have taken him to consultant as gp thought physio would fix issue but have been advised it is either brain or spinal issue so have now been referred to neurologist.

Not sure if I am being overly cautious/paranoid but could symptoms start to show I'm such a young child.

Any advice or help would ne truly welcomed
Hi Mrs G

Welcome to Messy Board

Juvenile HD (JHD) can start quite young but is very VERY rare in someone as young as 4. I did a search on JHD and 'rigid' and came up with a piece on the HDA Site which has been done for schools. See HERE

He has been referred to a neurologist so you have been brilliant to get him in the system for assessment. Chances are it won't be HD but getting him checked out, whatever it turns out to be, will be the best thing you can do for him.
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Old 12-02-17, 10:47 AM   #3
nightowl
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Default Re: advice needed regards 4yr old

Hello Mrs G. There's not many contribute to this section as you've seen if you read my posts.JHD is like the bogey nobody wants to pick!
My younger ones are primary age too and its hard sometimes not knowing or being able to discuss openly your worries. We have had concerns about behaviour and speech, cognition processing. Recently had a cognitive functioning test done by psychologist this gives a baseline so in the future any change can be mapped.
Perhaps an occupational therapist or Physio can do similar for your grandson following the neurologist referral?
Do keep posting its such a resource for us all here. You're not alone.x
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