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Behaviour/development

Talk to others about child development and behaviour stages here. You can find more information on our development calendar.

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Original poster

Treatment for Hyptonia

11 replies

GoodyB · 07/04/2009 21:37

Newby online. My ds is 14 mths and has been diagnosed as hypotonic and developmentally delayed (gross/fine motor skills of a 6 mth old). He is now sitting unaided but is still not mobile. The docs continue to look for a diagnosis - he's had an MRI, muscle tests, blood tests and chromosome testing by the geneticists - no luck so far. He has been seeing physios since birth for tortocollis and his floppiness. He is now having physio and hydrotherapy as well as speech and language therapy (he's a pretty poor feeder just to add into the mix!). Does anybody know of any other treatments we could be trying / if they are any good? I've heard there are different types of physiotherapy...conductive treatment or smthg??? Happy to pay privately if necessary. Also we've been referred for portage. Anybody know anything about this / if it's worthwhile? Any advice greatly appreciated...

OP posts:

BiscuitStuffer · 07/04/2009 21:51

There are loads of things you can be doing at home with his on a daily basis that will really help him. You need a good osteopath who is familiar with this and can do some work with him and show you all the things you can be doing yourselves with him. Whereabouts are you?

Original poster

GoodyB · 07/04/2009 21:55

We're in Thame, Oxon.

OP posts:

castlesintheair · 07/04/2009 21:58

Goody, it might be worth posting this on the Special Needs board

BiscuitStuffer · 07/04/2009 22:02

I can't recommend anyone there but you can go to General Osteopathic Website and phone up your locals and go from there.

Some of the things you can do:

Lie him down and tap his feet together and also get them to touch the opposite hands too

Have him sitting on your lap facing you and holding his waist move him around in big circles still sitting on you back and forth and side to side - this will help his balance.

Hold him facing away from you but hold him as close to his waist as you can - he will have to use his upper body to stop flopping forward.

Sit down with your legs outstretched and have him sitting sideways on your lap and tip him back on to one hand and then forwards and up on to his feet (or as close as you can) and catch him with the other hand. ie rocking back and forth on your lap.

Give him lots of things of different size and texture to play with that he can help himself to (google 'treasure basket')

...

asteamedpoater · 07/04/2009 22:04

Hi, GoodyB,

You could try asking on the ivillage Hypotonia web-board (messageboards.ivillage.com/iv-ppchdhypoton). As many of the posters are based in the US, I expect you'll get the low down on every sort of treatment imaginable. Obviously, you'll also get lots of support and understanding from other parents whose children have hypotonia.

BiscuitStuffer · 07/04/2009 22:08

Hi Goody - sorry my posts have been a bit rushed - welcome to mumsnet where we are all struggling with one thing or another!!

Original poster

GoodyB · 07/04/2009 22:09

Thanks BiscuitStuffer. Will check out treasure basket and the Osteo website. Was just thinking about putting this on special needs - prob a good idea

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Sidge · 07/04/2009 22:15

Portage is fab - my DD2 had it for nearly 3 years and it did wonders for her. (she has profound hypotonia as a result of a rare genetic disorder).

As for the low tone, we found a Haberman feeder fab for her (her floppiness meant she couldn't suck, and the Haberman doesn't need much suck, if at all). We got her off her NG tube with the Haberman.

We also did physio, hydro and had OT input. Many day to day things were very difficult (eg making her safe in a car seat, feeding her) but we pushed for equipment and advice from the physio and OT and got creative! I found the leg of a pair of tights filled with cous-cous made a great neck support

Original poster

GoodyB · 07/04/2009 22:24

We haven't seen the OTs yet - due to soon. What did you do when your dd2 got too big for the Group 0 car seat?? My dd is (slowly) getting up to the weight restriction and also getting too long for it but not sure if it's safe to put him in a forward facing seat.

OP posts:

chegirl · 07/04/2009 22:28

Hi GoodyB I would recommend the Portage (but then I would as I have just started work as a portage worker ).

Is your area involved in the Early Support programme? Do you have a key worker?

If you dont know about Early support they have a v.good website. I dont know how to post links but its earlysupport org uk.

Sidge · 07/04/2009 22:29

We didn't put her in a front facing seat for AGES - can't remember exactly, but I think she was about 2, 2.5. She was pretty dinky so was in her group 0 seat until about 18 months and then I had a Group 1 seat that went rear facing and also reclined.

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