Our 7 month old gorgeous baby boy has just been diagnosed with mild dyskinetic cerebral palsy. As of yet, the consultant is not sure of the cause as he appears to have a "normal" brain scan. I understand that this type of cerebral palsy is quite rare and usually effects the child's motor ability.

Are there any parents out there who has a child with dyskinetic cerebral palsy? I have loads of questions and would appreaciate someone in the same situation to help me out with some answers and advice.

Dyskinetic cerebral palsy is more commonly know as Athetoid cerebral palsy (athetosis) in England. Dyskinetic is the term favored in the States.

How your child is affected by his condition will be specific to him as an individual but here is some very general information copied from the Scope factsheet "Further information about cerebral palsy":
http://www.scope.org.uk/information/factsheets/

Athetoid cerebral palsy is caused by impairment in the basal ganglia area of the brain. It is characterised by involuntary and uncontrollable muscle tone fluctuations, sometimes involving the whole body. The muscles alternate between being floppy and tense and there will often be difficulty in maintaining posture.

The person usually has full range of movement in their joints, but not the stability or co-ordination to control their movements. Unwanted movements may be small, rapid, irregularly repetitive, random, and jerky, sometimes referred to as choreic movements. The unwanted movements may also be of a long slow, writhing nature. Someone with athetosis will often appear restless and constantly moving, only being still when fully relaxed and sometimes only when asleep.

The movements will often become worse when the person is excited or is attempting to do something.
Speech is nearly always affected to some degree, because of difficulty in controlling the tongue, breathing and vocal chords. Similarly there may be difficulties with eating and, the person may drool (have saliva coming out of their mouth).

My 4 year old son was diagnosed with cp at 13 months and it was only last year that the paed neurologist gave the name choreo-athetoid or dyskinetic, although my internet research had led me to that conclusion years before.

He is severely affected in all four limbs but as the moderator said earlier, every child has a different presentation of movements and ability. The neurologist did confirm to us that our little boy's intelligence is unlikely to be affected (something we already knew) and that he may be far more intelligent than we perceive. I have every faith that when he starts school next week he will positively shine and thrive on the academic input available to him and we can't wait for him to get to grips with a communication system.

It is very daunting to be given a diagnosis and bad days will follow good but you have found the right place to get advice and have your questions answered. Welcome to this group of warm and helpful people who really do know how you feel.

Trudi xx

My son is 4 and has moderate 'dyskinetic' CP or athetoid/ dystonic CP. He has speech, but it's laboured and difficult to understand at times. He is a full-time wheelchair user. Apart from his difficulties he is very bright, has little friends who thinks his equipment is really 'cool' and is right this minute entertaining himself with a computer game. I have a friend who has a child with dyskinetic CP and a completely normal MRI, so this can happen. Children with mild athetoid CP can learn to walk and talk, but maybe a bit later than other children.

I'm surprised that you have been given a diagnosis at such an early age as doctors are usually reluctant to say anything until the child is around 2, unless there is a very clear cause for the CP. This is because some suspected cases can often improve by the time the child is 2. I don't want to give you false hope, but your son is still very little and early intervention physiotherapy can really help. Try and look up Bobath physiotherapy and I can also recommend the book 'Handling your child with cerebral palsy' by Nancie Finnie.

I don't think 7 months is too early if there are clear indications of the presence of CP - my son (now 8) was diagnosed with athetoid CP at 7 months but we had basically come to that conclusion at around 5 months. He did however have problems at birth which were being monitored as he grew so everyone was on the lookout for something like CP.

I didn't have problems at birth, but my son was always difficult to feed and then at 14 weeks he started "posturing". At first he was being treated for reflux, but after a PH study it was ruled out. It was only then that the consultant suggested it could be cerebral palsy. We're still waiting for the results of some of his blood tests, but the likely hood is that its heredity. Total shock, as there isn't any evidence of cerebral palsy in any of our families.

Did you find that early physio helped? Within 2 weeks of therapy I noticed that my son started to grab for toys etc and started to turn his head to the left. Both these things he couldn't do before hand at all. Can the involuntary movements be controlled by medicine?

I've been told my son probably has mild dyskinetic cerebral palsy, so am eager to know in what way he will be effected. I know only time will tell, but just wondered if there were any other children with mild dyskinetic cerebral palsy and how it's affected them.

I'm so glad I found this forum, as it's really helped to have people to talk to in the same situation.

On a more positive note, we've just come back from our holiday in Fuerteventura where our little boy learnt to poke his tongue, much to his amusement and the locals!

Hi I was very interested to read your thoughts on dystonic cp as I have just been told that my daughter has it. She's now 3 and we have known for some time that she has cp but it is only having been to a Bobath training day that it has now been decided she has the dystonic form, previously we had been told it was the spastic form like her brother.

Dystonia had been mentioned by a physio early on, but her regular physio never seemed to pick up on it.

I feel like I know lots about spastic cerebral palsy as my son is 10, but nothing about dystonic cp.

Should they be treated in the same way?

Do different treatments help difference forms of cp?

I feel, that for various reasons, I have lost faith in my community physio and so I want to be really on the ball with knowing what to look out for.

Any advice is appreciated.

Donna

Hi Donna

The Bobath Centre diagnosed my son with the dystonic label. He'd been referred to as having the spastic type earlier. They were correct about dystonia. I remember they based it on what his trunk was doing. It could be straight one minute and flop the next. This is what they refered to as dystonic ie. interchangeable muscle tone. His legs and arms can get tight when he wants to do something and he tends to move his feet when he is moving his hands. I think this is the athetoid bit.

I'm not sure about the different way of treating them. I guess with dystonic/ athetoid CP you have to learn to control your excessive movements. The Bobath physiotherapists are the best to advice. That said, they are not the only answer. My son has also benefitted from physio that wasn't Bobath based. At the moment he has physio by a PT who is every enthusiastic about core stability.

It's taken me a long time to find the right approach for him. What seems to work is to set a short term goal eg. improve standing or improve sitting. Then we work in a block (8 weeks on and 8 weeks off) and try to focus on just that.

hi all,
if there is anyony out there that could sheed some light on Dyskinetic CP me and my wife would be very thankful,

my little girl has just had a feeding asseccment and the doctor present told us that Alexa had Dyskinetic CP, now she is only just turned 5 months!!

Will she be able to talk and walk

darren

Hi Darren,

I don't know much aout Dyskenitic CP ut I just didn't want to not respond to your post. Myself and my husand know exactly how you guys feel as we have an 11 month old who was diagnosed at 8 months as having Dystonic CP. We were warned when she was 2 days old it could be the case but it is still very hard to accept.

No one can tell you if she will walk/ talk as she is too young- I know how hard and agonising the wait and uncertainty is. Our daughter will be one three weeks today and they have just began to give us a slight indication of the way they think things will go.

We do the Scotson Technique which we have found to be great- http://www.scotsontechnique.com/

My advise is not to watch and wait as they advise- start therapy as soon as you can!

Take Care,

Aimee.

I can see that my last post on this subject was two and a half years ago!

My son is 6 with dystonic CP. He is extremely bright and he speaks with moderate difficulties. Children with CP are affected differently and to different degrees, so I'm not sure if telling you about my son will help you. There are a lot of involuntary movement in dystonic CP and this make gross motor skills very hard to achieve, like sitting, standing and walking. My son at 6 has only just mastered sitting unsupported for a short period of time and he doesn't walk. However, he is masterful with a computer and he has enough fine motorskills to eat independently (when the mood takes him), turn pages in books and magazines, play with toys etc. Last year he didn't get any joy with his gameboy, but now he can play that and he can beat anyone on the wii. I agree with Aimee that starting therapy early is useful. I also think the Bobath is excellent, particularly for parental education. I learned a lot about my son's condition by the therapists there. My son uses a powered wheelchair and he is very good in it. I have met children with dystonic CP who walk and talk. My son is moderate to severely affected.

Hi,
I am in Australia, but still like to check in here every now and then.

I have a 4 year old son with moderate athetoid CP, as a result of a brain injury at birth. He walks using a reverse kaye walker. His speech is definitely affected, but with the assistance of a wonderful speech therapist and the PROMPT system. We also attend an early intervention centre that uses conductive education.

Dianne