Anyone with experience of hypertonia?

[DuncanDisorderly]

Today I was told one of my twins has hypertonia. It's been obvious for a while that he is very stiff so it's not a surprise.

What can we expect in the way of treatment etc? He is due to be assessed by the Child Development Team in a couple of weeks so I will find out more then.

I also suspect his twin brother has hypotonia as he seems incredibly floppy. They were born at 23 weeks so problems were expected, I just feel bad 'labelling' them, kwim?

How old are your twins duncan ?
DGS was quite stiff in his early months and diagnosed with spastic quad CP. 18 months on his back and neck have quite low tone and there is no major stiffness in any of his limbs. I think the disability consultant will eventually revise the diagnosis expecially as the neurologist could only detect some minor high tone at the same time.

I think it takes til 2 for the end CP to really show itself, but it is so variable in every child, as you've seen in your twins.

The good thing with hypotonia is it is easier to build up loose muscles than loosen tight ones. There never seems to be two presentations the same.

I didn't realise I had managed to post this twice, sorry.

The twins are only just 7 months (14 weeks adjusted) so lots of time for things to change. I think I had managed to convince myself that my babies would be the first ever 23 weekers to not suffer long-term problems but I was clearly deluding myself.

Whatever the future holds for them, I am just so extremely grateful to still have them both and will deal with any problems as best we can.

I have replied on your other thread about sleeping but make sure you get regular physio, it is really the best possible thing you could do. It depends on your area but we had weekly physio and OT in term time from the age of 6 months on the NHS. It is possibly worth looking at private physio of the NHS one does not come through fast.

If the physios or CDC doctors this cerebral palsy is a possibility then there is a book called "handling the young child with cerebral palsy at home by Nancie M Finnie which is fab for ways to hold and support and stretch your child. I don't know much about hypotonia but do you think that it may be the contrast between the DC's or is it more than that?

I'm stalking Hairy it seems, and have posted on your other thread too.

DS has experienced both hyper- and hypo-tonia, mostly due to drugs for his epilepsy. As far as his CP goes, he has pretty varable tone - mainly high in the limbs, low in the trunk - though that can swap about too!

Personally, i found the hypertonia more difficult to deal with - harder to dress and handle than when he had hypotonia.

We had physio input from 10 weeks which definitely helped. We find doing his stretches after a bath is easiest and now he is bigger we integrate them into play.

If you haven't got one already, demand a physio at your appointment. It helps to know you are able to do something for them that can help them.

I agree with everyone, physio input is invaluable. DGS was monitored from birth as it was very traumatic and his MRI showed some brain damage to the basal ganglia. Even then the CP was not as the MRI predicted. Will your DCs have an MRI? It can give an indication of the type of CP to expect. (Although in DGS case not in the slightest!)

The book suggested above sounds ideal and I think you can get it from amazon. Also I would get:-
www.amazon.co.uk/Teaching-Children-Cerebral-Movement-Disorders/dp/1890627720/ref=sr_1_1?s=books&ie=UTF8&qid=1283028187&sr=1-1

These books should complement each other, but I would not start stretches until demonstrated by the physio. My DGS started hydrotherapy at 7 months and it has been brilliant for him, certainly helped loosen some bits and strengthen others!

CP babies need careful positioning to avoid complications and floppy babies just as much so. The physio should also help here. Do they tolerate tummy time? This is vital to gain control, strength, and prepare for crawling. My DGS hated it, and still does, hence can't be bothered to crawl much as he knows we've tricked him into rolling onto his tummy, and will just roll back in disgust!

DS2 had physio follow up from discharge from SCBU 7 yrs later we still do all his stretches etc in the bath. When he was a baby I would just get in with him, I found it so much easier (especially on my back) to massage & stretch in the water & he actually liked it.
It was also essential to have the correct support in high chairs etc only once we
go the correct chair could we start working on head/kneck control and strength & getting him to use his arms.
DS2 had very stiff legs, floppy body & he didn't realise he had arms at all, he has changed & improved hugely over the years. I know this isn't always the case but as the others have said, it is very ahrd at sucha young age to tell how severly effected your dc will be.