for PipinJo.....
I can't scan or email the excercise sheets. (no scanner) but I could photocopy them. You could email me your details privately, i think I ticked the box for that. I'm not much good at this it lark...

vicky Are they Piedro boots?

my ds has low muscle tone and has been having phyiso and has special boots to help him walk it has really made a big differance and he is now alot more able to do things

Heh, I get that too anon. DS1 is quite willowy but very strong in some ways.

It's hard to say on size with ds1 as he is an August birthday so the youngest and one of the smallest in his class. I really need to compare him to kids in the class before. But he is wearing the appropriate sized clothes so I guess height and weight is about average.

My ds2 is the ltallest in his class too, he's 6 & in age 7-8 clothes, he's quite stocky too.
People don't believe me when I say he was premature.

jabber Oddly my son is huge too, he's over a metre tall at 3 and has been in 3-4 year old clothes since 2. It's tricky as he's the youngest and tallest at nursery and people forget he's so young!

On the other hand DS2 is the size of a 7 month old at 18w so maybe it's just genes?

Ds1 initially potty trained well, then regressed after ds2 was born. Cue another year and a half to potty train with the constipation and fecal impactions He was really bad to do a poo and then deny it even as the smell permeated the whole room. A friend who is a therapist said some kids with sensory issues rather like the warm, squishy feel of it and therefore it makes training that much more difficult.

troutpout ds also had chronically bad reflux as a baby and I wonder now if this was linked in some way. He became very sensitive and cautious about food and was sick at the drop of a hat. Even now, he is sick very easily. We went to a wedding last weekend and he was sick at the table (!) - I caught it discretely in a napkin fortunately - just because of a bit of coughing . People were amazed but there was I with spare clothes at the ready taking it in my stride. It's weird what you become used to expecting!

Also, DS was late with toilet 'training' and had 'accidents' at school in reception years (poos - sorry if tmi!!). I always got the impression that he just didn't 'feel' the sensations like others.

Anyway, babbling on here, but it is interesting to see if and how all these things are related! I shall be asking lots of questions as I go

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.

JW forgot to say and this is weird but...as soon as I concieved I had heartburn (didn't know I was pregnant at that point) but never stopped the heart burn until ds was born....stopped the second ds was born! It then only came back with anything containing milk...told you it was weird.

Can you scan/email those sheets Lauree?

My ds has a gym ball given to him by OT for his core stability. He thrives/seeks it out every morning? Umm no one has mentioned facial muscles I wonder if that effects swallowing? as they said he had verbal dyspraxia at one stage...nothing done though about it

He can hold a thick marker now, but took 2 years (still learning)thousands of hours and very bad escape behaviours to try and get out of it! He does peg exercises on paper (pincer grip).Blowing same situation sorry. Again lots of practice.

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...

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

JW I think I missed it too and I aint got no excuse! But I don't think the professionals would have done much to be honest...does your ds get terrible bowels with milk?

Ds gets absent seizure activity as well as bowel problems when he has milk. I am allergic to milk also and get severe heart burn/acid when I have chocolate but I still have it but had to have soya milk as milk in tea/coffee is so painful like drinking acid...so I know how the poor guys feel who have this milk reaction. I asked for ds to have allergy test for milk as he had the worst bowels I had ever seen when I started him on milk and carried on for 18 months until ds STOPPED drinking milk himself at 23 months old....he must have knew the pain it caused...but could not tell me as non verbal. GP refused to do milk allergy test and said this was 'normal' as my first dc didnt really know...but it was very bad mucusy/undigested food (sorry to much detail)

Its funny I think ds would like celery as he loves crunchy foods...he doesnt like 'wet' 'slimmy' foods. But thats eally good forr him...well done

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!!

I think they just plank out dyspraxia when dx asd as its like a scale and well ...oh ds got asd anyhow its not worth adding on something he aint going to get any extra help for IYGWIM!

He is 5 next month can't ride a bike, needs to be lifted onto steps up a slide....18 month olds can do more at the park....but ds in 7 yr old clothes as massive! Boy's are starting to call him names "girl" "woss" etc he is oblivious but it hurts me and want to slap their heads he cant play running games (cant keep up and loses energy very quickly) he also sweats very easily...soaking if running around short periods and has a cold clammy feel to him when hot! Oh he has SPD also...another triad in this muscle/sensory/asd link...Debs you need to ask for research into this...could get a breakthough OK any of your dc responded well to GFCF diet and did your dc have bowel problems (just checking if another comman symptoms!

I always believe it is autisms...their seem to be different groups of autisms and we have found common symptoms here...

Umm the vomiting is common then as well! Sport is the only thing really to try and build the muscles....karate is good idea

Forgot to say...he also has dyspraxia

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

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

Debs40 - did your ds regress very quickly into ASD? After a vaccine/other environmental change etc? Does he vomit if presented with new foods if you try and feed it to him? Also do you have muscle weakness i.e. poor upper body strength? Sorry if mito they say its from the mum!

My ds got down to 5 foods, he know on intensive eating programme and in last 3 months ate meat for first time without vomiting/gagging....but still has long way to go as appears very sensory texture/taste/colour even!

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.

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.

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.

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.

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

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.

A lot of kids like ds who have ASD and hypotonia has mitochondrial dyfunction.

Does your ds have diet issues too Debs40? Just wondering as this seems to over lap for some reason also??

DS on waiting list to see physio...he was dx hypotonia but nothing done...the gap is getting bigger with gross motor skills. I know a mum who say it defo helped her ds (physio)

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.

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.

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.

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

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

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?

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

Thanks