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distonic cp

missy2 Member Posts: 9
edited May 2014 in Cerebral palsy
Hi this is my 2 time on here my 11 week old baby was diagnosed with distonic cp 2 days ago I would like to hear from anyone who has this condition or any information about it .also how people felt when they found out and what to expect from my little man xx


  • ScopeHelpline
    ScopeHelpline Member Posts: 207 Courageous
    Hi Missy

    You will find a list of resources for parents of children newly diagnosed with cp at:

    Cerebral palsy is a very diverse condition, so how each individual is affected is specific to them.

    If you call the Scope Helpline: 0808 800 3333 they can talk to you about your concerns. They can also send you information in the post and refer you to other Scope services, if that is what you wish.

    Best Wishes

    Forums Moderator.
  • forgoodnesssake
    forgoodnesssake Member Posts: 406 Pioneering
    Hi, my son is now 13 and was diagonsed with athetoid CP (quite/very like distonic) at 7 months (but we had worked it out by 5 months)
    I must admit 11 weeks is the youngest diagnosis, esp of dystonic CP, that I have ever heard of....the problem can often be for parenst that medics don;t want to commit themselves so sometimes children are 1 and 2 years old before diagnosis.

    Because your child is so young it is hard really to say what you might be able to expect - he may be mildly or more seriously affected, he may have some problems with walking and hand control, he may have some problems with feeding and he may have some problems with speech development.....but I really don;t want to alarm you....at this stage I would say assume he can do everything until you are proven otherwise! And don;t let any professionals give negative prognosis about his likely abilities....they simply do not know that this very early stage and for quite a while yet.

    What I would say though is that if you have any concerns about his speech development when the time comes that he should be starting to talk....make sure you get referred to a speech therapist who knows about this issue and can, if necessary, introduce you and your son to other ways of communication...even if this is only needed temporarily. I say this cos so often parenst are pointed at physiotherpay (for walking issues etc) and therefore much of the focus for the young child goes on mobility; Yes mobility is important, but being able to communicate, express yourself is in my view, more important but can get overlooked til kids are school age....and of course if you have poor or no method of communication, how can you get an education?

    My son has no speech at all and so has used symbol books, and now spelling boards and a talking communication aid since he was 15 months old (and beginning to show signs of frustration at both being unable to play and move about, but also cos he couldn't communicate with us) He is now year 9 of a mainstream school and hoping to take maths, science, French and drama GCSEs......
    Best wishes
  • stephgreen
    stephgreen Member Posts: 28
    hi there we have just had mri done and showed that Jack has damage to the basal ganglia. For months they told us how unusual it is to be showing signs of dystonia so young, jack is 1 now but we have known he had movement problems since he was anout 5months. The docs were saying its probably genetic dystonia and we were having lots of tests done. I think its very hard to tell what your child will or wont do, all you have to do is wait and see. Frustrating as it is but just stimulate him as much as you can, at least with brain damage you can create new pathways in the brain, you take care Stephx
  • ScopeHelpline
    ScopeHelpline Member Posts: 207 Courageous
    Hi Steph

    For information and support with genetic dystonia you might find this organisation useful:

    Best Wishes

    Forum Moderator
  • stephgreen
    stephgreen Member Posts: 28
    Hi Jacks Dystonia is due to brain damage not genetics. They seem to think that jacks neurotransmitters are not working properly due to the area of the brain which has been damaged, from when i had a huge bleed at 32 weeks. They are trying him on dopamine hope this helps him a bit. Thanks steph
  • endrizzitolomeo
    endrizzitolomeo Member Posts: 1 Listener
    hi, I was diagnosed w/ slight cerebral palsy and my parents enrolled me in a special school when I was a kid. I had speech therapy sessions while i was in grade school. Cerebral palsy is due to lack of oxygen inside the brain of a newly born infant. Genetics has nothing to do w/ it.
  • missy2
    missy2 Member Posts: 9
    Hi thank you very much It is nice to hear from others with similar condition as my little one he is very young but we hoping this will be in his favour by starting with the speech and language and Physio now as many children are not diagnosed till later on .it is fantastic to hear about your son I bet you are so proud of him best wishes
  • missy2
    missy2 Member Posts: 9
    Hi steph it is hard having so many tests done we had the generic test done and it was negative .it is so hard as we don't know what to expect with him so we doing lots of Physio and listening to ourselves as well as the experts .how is jack doing ? Thanks for your reply x
  • stephgreen
    stephgreen Member Posts: 28
    Hey jack is doing well thanks weve just been to brain wave, was very good. Just trying to help him as much as possible. From what i gather cp can be genetic but its very rare, i have actually met a parent with a child who has been diagnosed with the genetic form but i know its 5%chance of being genetic. It was the dystonia that could of been genetic due to a gene mutation rather than brain damage!!
  • Melvey
    Melvey Member Posts: 1
    Hi Missy, we have 8 yo twins with the severest form of dystonic CP. It's hard work, I wont pretend It isn't, but the rewards of having disabled kids are also very significant. It's a really worrying and uncertain time for you now, i remember it well, but focus on your little man and his personality and enjoy being Mum. Even if he does have a severe disability - and there's just no way of knowing so early on - you will find your life greatly enhanced in ways you can't possibly predict. Good luck.
  • missy2
    missy2 Member Posts: 9
    Dear melvey Hi there thank you so much for your reply do u have boys,girls or one of each .I have gone through so many emotions already but I know it going to get harder . would u mind if I asked you what support groups or sights u found helpfull I live in Wales and can't find that much out there in ways of support for cp only online ? I am so scared at mo have no idea what to expect ?and soo many questions I can't find much about distonic cp either ? Thanks
  • missy2
    missy2 Member Posts: 9
    Hi steph what is brainwave I have never heard of it is it local to where u live??? . glad jack ok .i tried him on baby food yest only the tiniest bit and he did taste it and seemed to like it .have u been told about bobath training it's intense Physio for them ..
  • Bongyorno
    Bongyorno Member Posts: 9
    hi Missy,

    have you ever heard about conductive education?

    It is a holistic approach to learning, educating the child as a whole rather than treating the disability in isolation. The holistic approach develops the whole personality of the child through active learning (playing), also enabling the child to become more independent and confident. The system of learning is rich in opportunities for realising the child's full potential.

    I think it could really help to your child. if you have questions, dont hesitate to ask them!


  • coolyute23
    coolyute23 Member Posts: 1
    I am so sorry to hear about your illness. Please be strong and take care.
  • anniemac5
    anniemac5 Member Posts: 1
    Hi Everyone, this is my 1st time on this site, so not too sure how it works! But I really need someones help or knowledge! My sister beutiful 5 yr old Rosion has CP, she needs to wear a splint, which means my sister finds it impossible to get a trendy pair of shoes to fit! Rosion is a typical 5yr old seeing the styles her peers wear....and then seeing her old done trainers she is wearing....she cries not wanting to go to school, not wanting to wear the splint.....my sister is at her wits end! My sister is a one parent family, whom has done done fantastic work on her own to raise her family of 3! But she has had absolutely no support from doctors etc....she has no paediatric social worker, whom I think would be a great lifeline for my sister. No one seems to be able to tell her how to get the simple necessities to make Rosion's life a bit happier and more comfortable.....a pair of nice trendy shoes (for a very trendy little girl!). If anyone knows where i can find suitable shoes and trainers pleasew please let me know, even if they are expensive I can help her to pay for them. I am just off the phone to her, she is so upset that she is sending her child out to school in old raggy trainers. We live in N Ireland so if anyone knows of specialist shoes in this region or can give advice in general please let me know.
    Thankyou so much for taking the time to read this!


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