hypotonia - OT enough, should I ask to see consultant?

[wonderinglonely]

Feeling a bit low about DD's recent review appointment. She scored low and seems likely to get another 'label' soon. She was diagnosed with hypotonia as an infant. We have been doing the exercises as advised (though difficult as she doesn't always want to do them and/or is tired) and the OT has been great and offered further treatment with them. I am wondering should I also be exploring a parallel route (don't know what though) to see if there's anything else we can or should be doing at same time. She is 5, getting on fine at school but I can see there maybe issues ahead with stamina, pencil grip and generally mixing with other children when there is physical play. Any advice out there please? Thank you.

there isn't much out there other than ot tbh. do you think a physio referral would help with gross motor/ core stability? you could ask your paed for a physio assessment to see what they think? (in some areas the ot can refer for physio - maybe ask the pt if she thinks it would be beneficial?)

do you have an underlying reason for the tone issues?

dd2 is very low toned and gets ot, and physio for a few blocks a year if we ask (tbh at 7 she is functional and there are hods of kids in greater need, so we just take a block for core work every now and again)

what's ot working on? dressing etc? or just hands towards pencil use stuff?

i should add, there is a hhuge thread that runs on the sn board called eds or something similar that will have tons of ideas on if you haven't found it already (ehlers danlos syndrome) x

thanks mad. She has had physio in the past to get her to crawl/walk. I don't know of a reason for the low tone, nothing invasive has ever been done. She is functional enough and can dress (buttons tricky) velcro shoes etc. She can climb a bit in the park and has a go at dancing class.

She was slow against the clock it seems during the assessment of fine motor and a bit wobbly with gross motor.
I though she was getting on ok, which is why I was a bit down when the OT said she was still low on the scale.

At age 5 I do see a difference with her peer group, though I know many still struggle with dressing at that age. I suppose I am concerned it will become noticeable at 7, 8, 9 etc.
Intellectually she is fine, though I do see a lack of interest in things she now realises she may not be able to do easily.

keep up with the dance
dd2 is 7 and the physio is chuffed that she's still going. (she started at about 4 when she couldn't stand unaided, so had to hold onto a chair for static exercises )

maybe check out the eds thread? (dd2's tone issues are neuro based, so don't really go on the eds thread. it's very busy though, so i imagine there are a lot of kids that are similar. might be a good source of info and suggestions!)

what do school think?

with dd2 we don't have an issue (yet) with a lack of interest because she might not be able to do something or find it hard. we've always tried to be really pro, and will generally manage to find a way that she can do an activity or whatever. she's been having adaptive ski lessons and is now a blue runner, bless (as well having her first crush on her lovely ski instructor), but ther is no real way she's going to be able to ice skate - we pout skates on her and effectively dragged her around the pond at new year, but even with a frame she can't manage on her own. and i've drawn the line at skateboarding . but generally, she knows that either school or i will come up with a way she can manage to join in with whatever...

what is she struggling with? dd2 is pretty much definitely going to be a keyboard user long term - but we've always known that. (and got the ot to write it into her statement for yr r lol)

anyway - that eds thread will be brill for you, i'm sure.

Hi! Like Madwoman I also have a dd with hypotonia (trunk mainly and lots of hypermobility) due to neuro problems. She is 3 and still has physio but not OT at the moment. It is felt that the low tone in her core is the main issues so we are working on this and hoping the fine motor will improve as a result.

I have heard of people raving about chiro/osteopaths for children with motor difficulties although haven't been able to afford to try this for dd. Also, my dd's future school have special programmes for children with motor difficulties to help with their confidence - has lots of OT/confidence building exercises - might be worth asking your school if they could get one of the TA's some training?

Horse riding! it is great for improving muscle tone and core stability, gross motor skills, balance, spatial awareness, strength, coodination and stamina. Try contacting your local RDA (Riding for the Disabled ) group. Don't be put off by the name, no one is too disabled (well very rarely) or not disabled enough. A really wide range of people use RDA groups from those who can only walk round on a lead rope to those who progress through to faster work, even jumping and you can compete at any level up to paralympics. If you want any more info, just ask.

coincidentally, we did try a chiro (and earlier a cranial osteopath) with dd2. interesting but not really conclusive.

and she starts her first horse riding lessons (as part of an adaptive programme - the local equivalent of the rda) on 1st may . we've been meaning to do it for ages, but not been in any area long enough to get to the top of the rda waiting list!

dd2 also loves the trampoline - it's been really interesting to see how her core stability improves in the summer.

and swimming - she has some retained reflexes which are causing her some difficulties, but we're persevering.

Yes horseymum - can't wait for dd to start riding - we're on a waiting list until Sept at the earliest I just know it will make so much difference!

thanks everyone for taking the time to post. I think I will ask if there is an appropriate consultant referral and if possible another 'course' of physio.

I did enquire about riding but not it is suitable for us, though we may consider paying for lessons in future. I am getting round to organising some swimming lessons and see how that goes.

We perservere with the exercises and are grateful for the OT's input.