Hi there, I'm not sure what they mean by 'built in stiffness' but I do know my daughter (she's just turned 4) has what you describe at 'involuntary stiffness'. My therapists call this 'dynamic tone', meaning when she cannot do two things at once, for example hold herself in a sitting position and reach out for something. She becomes very stiff and cannot stretch out properly. But if she's laying down or sitting in a chair she can reach out really well.

As far as I know there is no real treatment for this other than muscle relaxants but as you found they often have undesirable side effects.

I don't know what country you're in, I'm in Australia and for my daughter we use a Kelly Chair for table sitting. It has a pummel between her legs which keeps her legs apart and stops her sliding out of the chair. It has arm rests and foot plates which are all adjustable. We also use a 'Bumbo' for a lot of her sitting. You can buy these at most baby stores, they say for babies up to 6mths but my daughter is 4 and still using hers to sit at the table. It gives her that support so that she feels safe in her seating position and therefore her tone doesn't become dynamic. We also have a Dynamic Standing Frame, where she is strapped in in a standing position will full supports for her legs but her arms are free for her to play at the table or blackboards etc.

There are quite a few seats available for children with CP, have you talked to your therapists? I know in Australia we can get funding for specialised equipment for when they go to daycare, kinder and school.

Don't let Skanda's inability to sit alone stop you from putting him in a playhome, you just need the right equipment and to make sure the carer has an understanding of his needs.Good luck.

Hi,
May be skanda's therapist thought I will not understand "dynamic tone"...so he might have given the alternate (which they use here) "involuntary stiffness" . As you explained Skanda becomes very stiff when he is sitting & want to reach out for something, when he wants to get up (he tries a lot...! ), when he gets excited & so on...

From past 3 months Doc's prescribed Tizane 2mg (Tizadine) & looks like its working out well. He was given only .5 mg in beginning... as he was taking it well (didnt had any side effects) doc's decided to increase the dose to 1mg from saturday. We hope this may help him more.

Skanda has kelly chair (we call that high chair..!) & also dynamic standing frame. After we started with standing frame, his standing has improved a lot.... but again, dynamic tone is what making him to fall.
We are eager to put him in playhome & looking for a suitable one, but with all the activities he is going thru now - MMSP & physio, he looks pretty much booked . Doc's have also suggested to put him in speech therapy, so we need to find a time slot for that too.

Thanks for your reply & good luck.