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TOPIC: Focal dystonia

Focal dystonia 3 years 3 months ago #3307

  • Kerrie1234
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Hi my 12 year old son has recently been diagnosed with focal dystonia. His left foot has slowly been turning inwards for the past year or so causing him lots of pain when walking for any periods of time,I don't really know how to feel about this as have been looking on the Internet and it just makes me sad as to think that their is no cure the has just started taking 1mg of trihexyphenidyl a day slowly increasing it throughout a month just wanted people's views really on whether this drug made any difference or whether he will just have to live with the pain
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Focal dystonia 3 years 3 months ago #3326

  • stargazer
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I have cervical dystonia and take 12 mg Trihexyphenidyl per day, and get Botox every 3-4 months Because my conditional is quite variable I find it hard to know how effective the tablets are in comparison with Botox alone. However my condition has improved since I was first diagnosed two-and-a-half years ago and I don't have any bad side effects apart from a dry mouth sometimes.
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Focal dystonia 3 years 3 months ago #3331

My daughter has this type of Dystonia, she is in pain all the time. I wish I could take it from her, she is in her 30's and only got this about 18 months ago.
Her foot turns inwards at almost a right angle and she has hardly any muscle left so she is in chronic pain 24/7. She wears a solid plastic splint which her husband changes for a night one every night and back to her day one in the mornings. She suffers agonising pain when this is done, it keeps her foot almost straight but it curves back immediately during the change over. She takes many different pills but none seem to help with her pain.

We see her consultant on Monday for the first time in 12 months, i am not happy at the way she has been left all this time and don't know where to turn for more help, I want botox for her, pain management and orthopaedic help but I doubt her consultant will offer anything. She uses two crutches to get about but is tired all the time and sleeps when the pain is bad to try to get through it.

She had to buy an orthopaedic shoe type thing as she can't wear normal one on her bad leg, surely these should be provided for her as her splint is just a back splint and winter is coming again and she needs something to keep her foot warm as the cold affects Dystonia more.
I wish we know where to go for help for her.
I wish you help for your son also. xx
Last Edit: 3 years 3 months ago by morticia5519.
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Focal dystonia 3 years 3 months ago #3333

  • Kerrie1234
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Thanks for your reply it's kind of reassuring knowing that he isn't the only 1 going this hope you get answers on Monday! My son has had a special insole moulded from his foot to wear in his shoe as his bad foot is 5 sizes smaller than his good foot. Now we are just waiting for him to go and have a lumber puncture then we will go from their I suppose, everything just seems to take so long and when it's your child in pain you just want it sorted asap
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Focal dystonia 3 years 3 months ago #3334

I know how you feel it's horrible watching your child suffer knowing you can't help them. My daughter is the youngest of 3 and she is 35 her husband is amazingly supportive to her but I think it's time her Consultant did more for her. Her splint is solid plastic and her husband has to gently force her foot into it and then it is strapped in with velcro but then it is hurting her all the time. Are you in the UK? there seems to be so much more help in America....the tablets your son is on made my daughter lose her speech it scared her and us so much, she had to stop taking them and slowly her speech came back, it was like she had stroke symptoms it was horrible. Keep in touch on here and let me know of any new developments and I will do the same. I will let you know what her Consultant says on Monday xx god bless x
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