Physio for Low Muscle Tone

[lac13ma1]

Hi every one,
Has anybody had private Physio for Low muscle Tone.
And did it help?
DD 4 has Low muscle tone and NHS physio is really a bit of a waste of time (see her every 3 or 4 months)
Recently had private SALT and it was amazing, (NHS SALT is also a joke)
so i was just wondering if anyone had any experience with Private Physio for Low muscle tone and did it have any effect and how much improvement did you see?
Would really appreciate anything anyone can tell me.
Thanks

We went up to GOSH for hypotonia and hypermobility and I would recommend seeing their team there if hypermobility is also an issue.

We paid privately and then got it on the NHS.

I have to say that I found their aftercare on the NHS was very poor which made my son laugh when they were promoting GOSH in the Olympic ceremony. But I think that was problems with a particular team.

I haven't found that local services have got the necessary expertise to be honest and I have largely been disappointed with everything DS has received through the NHS which is largely generic and not helpful. And I say that as a massive supporter of the NHS.

It is frustrating because they will say that they are generalists but will never accept there is something they don't understand/know as that would mean referring you on.

Do PM me if you want details of the GOSH team,

We have had the opposite experience TBH, at our local hopsital they have a physio who specifically deals with hypermobility. he didnt actually work with Dd3 but the physio she was assigned to consulted with him and got him to come to a session with Dd3. They were a good team and Dd3 has benefitted hugely.

If you can find a decent physio either private or NHS they can make a big difference.

Good luck

The most important thing is to get a thorough assessment.
Is it genrealised low tone or is it specific muscle groups/areas.

If it is specific muscle areas then any physio should be able to give exercises or more appropriate for children is recommend which activities/games would be good.

For general low tone then exercise that covers all areas is always recommended (swimming etc) unless there is something specific that you would like your child to achieve (sitting, crawling, sitting from lying etc) then targeted exercises/games should eb used.

It may be worth investing in a good thorough intial assessment & then build your own home physio programme.

What is GOSH??

I'm thinking it's generalised low tone, but im just guessing as the first time i saw the word Hypotonia was on an O/T report, so i haven't really had the chance to ask too much about it.

slaclucyHow would i go about getting a good thourough initial assesment. That sounds alot like what i had in mind.

DD was referred to Paed at 18 mnth by H.V and shes now 4 and TBH have just wasted 2.5 years not doing any physio. I think if its going to help her at all then it needs to be done now. don't see why NHS have to just prolong everything. It's not only a waste of time and money but also a waste of DD's childhood.

My dd has low tone in her trunk and high tone in her legs. Brainwave has been fantastic for us. They do a full 2 day assessment and give you a home program to follow you then go back for a day every 4-6 months.

GOSH is Great Ormond St Hospital

Am sorry to hijack but DS 9 months has just been referred for assessment as is delayed in gross, fine motor and speech skills. hV queries if there is cognitive delay also. DS had poor neck tone at two months and I suspect this is still the case and is now clearly a barrier to more normal development.

We have managed to get a paed appointment for tomorrow but we are keen to source any resources available that might help. Can I ask what brainwave is?

We are very anxious but know he can progress and want to make sure we are getting the right assessments and help.

So sorry gain to hijack thread, just very anxious this morning.

Not to worry ouchdownthere The earlier you get going with things the better.

I wish there were services like those mentioned in Wales. There dosen't seem to be anything. (or there is but i just dont know about it yet).

I have heard alot of people saying about Brainwave lately. Where is that based?

I am not in the UK, but my son has had (private) physio 3 times a week for hypotonia for the last 18 months, and it has been AMAZING. He has made so much progress with it.

At home, one thing that's been very helpful is using the gym ball.

Thanks lac, I managed to find brainwave, The brainwave centres ltd. there are three in the UK, Somerset, Essex and Warrington. Have also been told about Portage via a thread I started so def going to look into that.

I think we need to find a good physio to help us do the right exercises with DS, am sure he does respond to repetition of action he just isn't that keen to mimic and explore.

we had and still do have an nhs physio and they have always given me exercises and schedule to do at home no matter how often they have seen us. Do they not do this with everyone else?

We have also found this also helps, having a trike, going horseriding and swimming regular

ouch, when ours was so little we were told to help them do the action, so for rolling over you would them roll, for crawling you would have to do the actions with them, so you hands around their arms legs and helping them move each limb etc

Lac13, have a look at BIBIC, they are based in Bridgewater so perhaps not too far.

DS2''s physios have always encouraged as much exercise as managebale for ds2, swimming, trampoline, gymn ball, climbing in & out of cardboard boxes, through tunnels. Anything really, the key is to keep it varied & interested & never tell them its their exercises.

When ds2 was a baby we had to concentrate on developing core stability, reflexes & improving head control.

So endless row, row row the boat to improve head lag. Rolling him in a blanket & tipping him upside down & tilting him across my lap to improve the reflexes.
We had to touch his hands to stimulate reaching for objects & teach him hand over hand how to do things.

Much of it is doing what comes naturally as parents but with far far more repetition

My DS is now eight and with hypotonia;
we had great help from portage when he was young, so please find out if your Council provides a protage service; also physio services,
but essentially phyiso service was about teaching the parent to try everything you can to encourage extra physical activity: by not helping the child so he has to do things for himself; making the child reach for things, by putting toys up on a shelf so they have to reach and go on tiptoes, And encourage to reach out with his left hand for a toy on the right side and vice versa: massage, stretching out any little hands that are being held in a funny position, encouraging them to climb up and down stairs, first both feet onto one step, then alternate feet one alternate steps: getting up and down from the floor, sitting cross legged, etc. jumping on a a little trampoline from argos,,etc etc.
and being tough when they fall over, so they have to get up themselves ( this one is really tough to do but it's good for them!)

The best thing I learned from the physios is to use whatever the child loves to do to incentivise physical activity; eg with my DS, he had to clamber over a home made assault course of cushions and boxes to get another page of story read to him
Keep going , push your chid as much as you can, even though it might make you feel bad ( like when they fall over and you make them get up themselves with no help, and all the other parents look at you in horror) and good luck with getting extra help

Thank for all that, really helpful.
Had an appointment at orthoics today to order some new boots.
Said that she has improved since he saw her last in november.
The muscles in her hips, trunk and arches of her feet need to strengthen, but they will do in time,
as she gets older she will go from boots to just insoles which she wont have to have forever.
And basically said the same as what you've all said above.
so i feel so much better now knowing that there's nothing, i'm not doing to help her.

Do you have a Conductive Education service near you? If so it would be worth contacting them them and asking for an assessment. Many run free sessions or ask for a contribution to costs. They can and do help children with Hypotonia. If you are in or near Nottingham have a look at www.schoolforparents.org

grannytothree thanks for that i will have a look at it.