Hypertonia?

[marne2]

Has anyone got a child with hypermobility and Hypertonia dx?

Was filling in the dreaded DLA forms for dd1 yesterday and looking through paper work when I discovered a report with all her diagnosis's, she has quite a few and for some reason I had never noticed 'hypertonia' on the list. The pead did say she had 'fluctuating muscle tone' is this the same as 'hypertonia'?

As dd gets older we seem to having more issues with her mobility and pain in her legs and ankles. He can't ride a bike and can't run very fast, she struggles with steps ( mainly going down ), we suspect she has dyspraxia but on her list of dx's it says something like 'sensory movement disorder ' isn't this the same as dyspraxia?

I am now totally confused about what she has or hasn't got wrong, the only dx's I understand are Aspergers and hypermobility .

I want to be able to do more to help dd1, she would like to ride a bike and run as fast as her friends but what are the chances of this ever happening?

She has been signed off by OT but I might ask if they can see her again ( though OT has been a waste of time as the OT keeps saying dd could ride a bike and she's just being awkward), the report with the dx on it was from 2 years ago can't believe I missed it but at least I found it before filling in the dla renewal forms ( so I can add it to the list of dx's).

Yes my 7 yo DD has a similar 'woolly' kind of dx! The hypertonia bit is caused by fluctuations in muscle tone (with effort etc) but she has underlying low tone especially in her core muscles. She has difficulty with her balance, fine motor, running and can't ride a bike without stabilizers or support.

Definitely try OT again but I've found you have to very specific about what you want them for (in our area anyway!). We found a supportive chair helps for school (OT provides this) and now hoping for some more equipment to help with writing/fine motor too. Really hoping she'll ride a bike one day but not convinced she will have strength/balance needed. Some areas offer bike riding courses for kids with Dyspraxia/similar conditions - might be worth asking OT if you can get another referral?

OT referred her for bike riding lessons but it was a week course at the children's centre, the children's centre is 30 miles away so would mean me driving 60 miles a day and find child care for dd2 so we couldn't do it . She did have a trike but there's nowhere safe for her to ride it near by and it wouldn't fit in my car, she doesn't really show any interest in riding a bike, she had a few lessons with OT a couple years ago and we only got to the stage of her getting on and off without falling over .

She has seen physio alongside OT but they have decided there's nothing else they can do to help ( and because we couldn't attend the bike riding lessons they thought I was refusing help ). I will contact OT as they are seeing my other dd anyway, I could do with some kind of report for when she starts high school.

Marne my DS has hypermobility and struggled with bikes as well.

What helped us was a glide bike. It helps them to learn how to balance and then 'glide' through a special bar where the pedals would normally go.

Once he mastered that and felt really confident, we tried the bike again & he picked it up straightaway. Now he cycles every day and it's helping with his low muscle tone.

They're not cheap, you might find one on eBay though. For me it was worth every penny and I donated it to the school afterwards

Link here glidebikes.co/specialneeds.html