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DS's hands and face contort when he runs or gets up quickly

11 replies

PrincessMarcheline · 16/10/2015 14:33

He doesn't have any condition, but as I said in the title, when he runs or gets up quickly, his hands and face contort. He looks like he has cerebral palsy, but only for a few seconds. He is very conscious of it.

Any ideas what this can be? Thanks.

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PrincessMarcheline · 17/10/2015 06:20

I have Googled, but this is all I can find:

www.doctorslounge.com/neurology/forums/backup/topic-31067.html

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Imnotaslimjim · 17/10/2015 06:59

That sounds very upsetting for him, especially if he is very aware of it. I couldn't even guess at what it could be, but it does sound like you could do with showing the Dr. Could you possibly record him on your phone in case he can't replicate it in the Dr's office?

PrincessMarcheline · 17/10/2015 12:22

That's a good idea Imnotaslimjim, I might try that before I take him. I just someone has an answer because it's really scary.

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BreadAndButter1 · 17/10/2015 19:05

I think you need to go to GP and explain the problem and as PP said, a video may support what you're saying. It sounds unusual, perhaps a neurological thing? It definitely needs investigating. It must be worrying for you but best to go to GP and get it sorted out xx

DriverSurpriseMe · 17/10/2015 19:10

I think videoing it is a good idea. Has he always done it, or is it a more recent thing?

Heebiejeebie · 19/10/2015 05:45

Could it be this? Did his father ever have it? I would ask to see a paediatric neurologist.

Paroxysmal kinesigenic choreoathetosis (PKC) is an autosomal dominant neurologic condition characterized by recurrent and brief attacks of involuntary movement triggered by sudden voluntary movement. These attacks usually have onset during childhood or early adulthood and can involve dystonic postures, chorea, or athetosis. Symptoms become less severe with age and show favorable response to anticonvulsant medications such as carbamazepine or phenytoin. It is the most common type of paroxysmal movement disorder.

PrincessMarcheline · 19/10/2015 16:40

That is it! That is it! Heebiejeebie you're a genius! Yes, DH also has it. I have just read the description to DH and he said that is what he has been trying to explain to doctors for 25 years! None of them knew what he was talking about.

I found this after googling PKD and it is so accurate: en.wikipedia.org/wiki/Paroxysmal_kinesigenic_choreoathetosis

Thank you so much. We are going to the doctors armed with this info and hopefully we will get some medication for DS.

I love Mumsnet - you girls really do know everything Grin.

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Heebiejeebie · 19/10/2015 20:07

So glad it sounds right to you and your husband (and that it's such a benign thing)! The GMC takes a very dim view of internet diagnosis, so I'm always a bit wary, please do go and see someone properly.

PrincessMarcheline · 20/10/2015 03:22

DH will take him to the doctors with the info we found so that he can explain properly.

The thing I am puzzled about is that DH also has epilepsy and he thinks the 2 conditions are related, but i can't find anything linking the two, other than them being similar conditions...

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Heebiejeebie · 20/10/2015 13:01

What kind of epilepsy does he have?

PrincessMarcheline · 20/10/2015 15:38

Grand Mal Epilepsy, but he has only had 3 fits in his life. He is on medication for it.

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