Low muscle tone anyone?

[debs40]

Hi

I posted earlier about DS 1 (6) who is being investigated for sensory issues.

The consultant paed we saw confirmed the community paed's opinion on his low muscle tone saying he was very bendy and floppy and this would impede his writing etc.

The community paed had initially told us she would refer to physio for this. But she didn't put it in her report and when chased, she spoke to the physio team and they said we were best just carrying out normal activities like helping him learn to ride a bike etc.

I have two questions (!):

1. What is the link between hypotonia and ASDs? I can see from my reading that there is one but does anyone know why?

1. Has anyone else been sent to physio in the same situation? Did it help?

Thanks

[wrinklytum]

Hi dd is not on the autistic spectrum but has hypotonia.Phsio has helped wrt exercises and so on.I know you were asking re asd specifically so help you get some more replies xx

[meltedmarsbars]

Sorry, another one with very hypotonic dd but not asd so not much use to you, but bumping for more replies for you.

[juliehplus6]

Hi My 7 yr old ds was diagnosed with hypotonia when he was little. he has since also been diagnosed with righ hemi cp, severe joint hypermobility syndrome, muscle weakness in his respiratory muscles and anxiety issues. He has lots of sensory/proprioception issues too. The school recently refered him to the Ed Psych because they believed he was showing signs of ASD however the Ed Psych agreed with us that it is more a panic/anxiety disorder which can occur alongside joint hypermobility syndrome.

Re physio our ds has been receiving it since he was 13 months old and it has been an absolute lifesaver. He has come on so much in that time although he still suffes from extreme fatigue which means that he is part time wheelchair user.I suppose how useful physio would be depends on how severe the hypotonia ( and any other issues) are. It is usually an Ocupational therapist that deals with the sensory side of things.

[FabBakerGirlIsBack]

My DD was dx with this at about 10 months. We weren't told this but read it in her red book when we got home. He did say she would be late to walk and run.

She walked at 13 months.

She has had some physio but I don't think it helped tbh and now she is 5 and doing fab. She was at the hospital a while ago as she wa walking with her foot turned in but she has some stretches to do and seems fine 95% of the time.

She was late to sit up (9 months) and had plagiocephaly but is doing brilliantly and we are so proud.

HTH.

[laumiere]

No idea about the link but DS1 has cerebral palsy, hypotonia and ASD. He's just started walking at 3 and can draw a bit using a fist grip.

[anonandlikeit]

DS2 has Mild CP, hypotonia & ASD. He has had physio at birth as he was very prem, physio has def helped but for hypotonia the best treatment is regular exercise, little & often!
If you feel you & he would benefit for a full physio assessment then ask again for a referal.
Also an Occupational therapist is maybe the better person to ask about fine motor skills stuff & to advise about writing etc, I would ask for an OT assessment too, should be able to advise the school & help with sensory issues.
Ignore me waffling if you already have an OT.

[laumiere]

anonandlikeit our boys sound like twins! Except our useless PCT didn't DX for 19mo....

[debs40]

Thanks for your responses.

We are on a waiting list to see an OT so I will ask about this.

Also, I used a physio for a while after a back problem so perhaps I will ask her what she thinks about physio too.

PipinJo DS is a very fussy eater and has a limited diet.It is strange the way these things fit together!

[anonandlikeit]

laumiere alhough he had hysio from birth (standard as born at 28wks) they didn't dx the cp until nearly 3 up until then it was low tone, mixed tone etc etc.
Although I can't complain PCT & pre school services were great. He is 6 now & school age services aren't quite so joined up IYKWIM.

[laumiere]

anon DS1 was born at 31w, bt we got nothing at all until we moved areas and finally got a referral. We're looking at a school for DS1 now and it's tricky because he doesn't speak so we're trying to prove he's got normal cognitive development.

[anonandlikeit]

They do sound so similar, ds2 wasn't speaking at 3 either but he does now.
Sorry for the hijack debs!
Laumier if you want to chat more just shout.

[jabberwocky]

DS1 has sensory processing disorder and low muscle tone. We encourage him in activities such as swimming, karate and climbing - dh installed a very low-tech climbing wall in the playroom that has been a bit hit.

I'm not entirely sure why the two are so commonly seen together; that is an excellent question. We did do OT for it and I saw some improvement.

Other things to encourage are types of "heavy work". Any time you get a chance to have him carry or push something, do so. He might grumble a bit at first but it really makes a difference.

[debs40]

Jaberwocky thanks for the tips! I will work on encouraging him to carry something! I think the karate also sounds good. There must be things that all that bendiness comes in handy for!

PipinJo - yes he does respond negatively to changes but not always. I have hypermobility myself - nothing major - I discovered it when I had an accident and did physio so I routinely follow a resistance training programme at the gym where I can

DS's food choices have whittled down but occasionally he will try something new. He has frequently been sick at smells in particular.

Thanks for the feedback! It would be interesting to know what the connection was between ASDs etc and poor muscle tone. I shall certainly ask the OT when we get our appointmnet

[troutpout]

ds (12) asd..also has poor muscle tone and hypermobility
He is pretty good with food (well it's one of the few areas which isn't a problem anyway! )...but had awful reflux as a baby and still reflux vomited occasionally at 3. I've always wondered if it was linked somehow

[troutpout]

Forgot to say...he also has dyspraxia

[jabberwocky]

bowel problems here too although not atm, thank goodness. I think retrospectively that ds1 had reflux as a baby but we just missed it. Got misdiagnosed as just "really bad spit-up" I feel a bit guilty about that now. He is finally widening his palate a tiny bit which is nice. Of course, we are dairy-free so that is limiting in itself but he actually started eating celery this summer!!

[jabberwocky]

I really should have known not to ever try ds1 on dairy as I had to stop milk and ice cream when bfing him. But, live and learn I guess. His bowels and temperament are much better now that he is dairy-free.

Mine too, come to think of it

[Lauree]

Hi there.. seems like there's a lot of us with hypotonic kids here... my DS (5) very wobbly and clumsy, very poor grip; it's a real problem with writing, at the moment he can't hold a pencil to scribble. he can run, but he can't jump... leaving the ground is going to take a while yet!

DS gets physio, and i think it really helps. mostly for teaching the parent how to help the kid, those paediatric physios really do know how to motivate! I have some excercise sheets I could send on if anyone's interested. He gets seen by physio and OT's school, and the LSA's also do excercises with him, and try to mix it up with the other kids so he doesn't feel left out. I think you really have too push for this extra help,and a dx can really help. we're very lucky where we live to get such good support

My son's schoolteacher, who was also a great Ormond Street nurse, puts a lot of store by the physical strength. she says don't worry about drawing and writing yet... he has to get his core stability up first. there;s time for the other stuff later... I've come round to her view, DS is not going to be able to learn to write until he can control his arm movements a whole lot better. They really encourage crawling on the floor.. apparently its great for coordination and core stability. Big movements with the arms... patting a balloon up, throwing a ball, standing in a hoop and lifting it over the head. standing on one foot.etc etc. and also log rolls. DS also has problems with facial muscle tone affecting his speech, and also sometimes very dribbly. If anyone has any tips how to teach a child to blow... like blowing bubbles or a candle, i'd be grateful. We are really stuck with thhis one!

I make my son sit on a space hopper to watch TV. Its good for the trunk muscles to sit on a wobbly excercise ball. The physio's are great at giving you ideas. One day we put pegs on the back of the T shirt he was wearing so he looked like a hedgehog, and he had to reach over the shoulders to pull the pegs off. I find the hardest thing is to let him do things by himself.. so slowly... sometimes i think other parents think I'm being heartless when he falls over and I stand back so he has to pick himself up off the floor...

[jabberwocky]

very weird, pipin!

As far as facial muscles and swallowing goes, has anyone done the straw and applesauce exercise? Basically you just pour some applesauce on a plate and they have to suck it up through the straw. Ds1 thinks it is hilarious and doesn't realize it's good for him I also have some of those "silly straws" so that he has to use a stronger suction.