Here are some suggested organisations that offer expert advice on SN.
I hope this is the right place for this. If not, perhaps someone could point me in the right direction.
My ds2, now nearly 10 months old, has been diagnosed with hypotonia. He was 6 months before he could support his head and has only just started sitting (falls over easily, though). He cannot roll or in fact do very much else, and does not hold things. I have been told that he is likely to make very slow progress and will probably need physiotherapy.
I was hoping to talk to other people who have been in this situation or have similar experiences they could share with me.
I know this probably sounds silly, but I keep looking at him - he's bright and smily and laughing - and thinking "These doctors must be wrong, how can there be anything wrong!"
Hello there alexpolismum.
I think you have come to the right place.. there are lots of friendly ears here and experience too, and although you don't often see the word hypotonia, there are bound to be others with experience.
my DS had severe hypotonia from and before birth, and couldn't sit up for ages. He had to have special equipment supplied by the Occupational Therapists eg chairs ( special supportive one for feeding, and a corner one that help the trunk muscles develop), walking frame, potty on higher legs, bath aids, special supportive boots for when he started walking , sticky placemat to help him feed himself...etc.
Physiotherapy would definitely help you. if it makes you feel any more hopeful, when we were sent home from hospital with a 4 week old floppy ragdoll baby, the nurses told us very kindly not to be too surprised if he never sat up. Now he's running around and enjoying life like any other 6 year old; still got weak joints and poor fine motor skills, but a million times better (have a look at my photos to see a pic of him). I put a lot of his progress down to physio, and up to age 2, the local portage service.
It's great that you see your son as a person without problems, but guard against being in denial, (I know I was for a long time) and get as much help as you can as early as you can... you can always say no to it later...
If you want any specific physio ideas I have kept all the excercise programmes the physio's recommended for my son, just let me know .
Any ideas as to the cause? From what I understand mild benign hypotonia will improve with physio and time.
My 3 yr old DD has hypotonia in her trunk area caused by neurological injury which is improving but she'll probably never be as strong as her peers. She was still needing support to sit at 1 yr but crawled at 15 months and walked at 20 months. She has physio and can now do lots of things I never thought she would - pedal a trike, climb etc.
We did lots of kneeling which improved DD's sitting as strengthened core muscles. I'm sure physio will advise with exercises. Is a slow road but physio does help and there is lots you can do to help him strengthen up e.g swimming.
Hi again I responded to your message on my thread giving you an idea of timings my son has done things. I hope it's of help! And as above the physio and ot have been a great help!
Me again - I hope I didn't frighten you in my own thread saying my ds is likely to have a genetic condition his hypotonia is only part of global developmental delay, in that he is delayed in all areas! I think there are many many reasons for hypotonia!
There are quite a few genetic conditions that can cause hyopotonia and GDD...
DS has sotos syndrome, which is very rare and also features overgrowth and large head amongst other things. Like Downs and other syndromes there is a particular look which you can learn to recognise... my DS has 'the sotos look' and a few people have mentioned to me that a friend or relative has a child who looks really similar... some without realising that it might be a syndrome. I'm only writing this in case anyone here has a quick look at my photos and has a flash of recognition.
Hi Lauree - I had a nosey, gorgeous boy, cracker smile! My ds has the opposite - small head only 0.4 centile while he's 50 centile for height and weight! Of course I've googled every combination of GDD, small head genetics etc etc in an attempt to diagnose myself all useless of course! The Internet can be a bit of a curse!
Lauree - thanks for the offer re physio exercises. I have an appointment with a specialist coming up and shall see what they have to say first, but I might take you up on that!
I don't know about the cause, but perhaps the specialist will have more to say to me. I have two other children who have no problems at all, so I don't think it's genetic.
Hi there. My DS2 has hypoptonia too. He has Prader-Willi syndrome. When he was born he was so floppy and couldn't feed. He had other symptoms that lead to his diagnosis at 5 weeks. PWS is a genetic sydrome but it doesn't mean it's an inherited condition. It's a random mix up of genetics at conception.
He is now 7 months old and his hyptonia has been downgraded from severe to moderate! He had had physio twice a week since he was diagnosed. I also take him swimming (bit of a struggle as he still can't hold his head up!) If you get a diagnosis you may find there are other interventions you can use to improve tone. For example my son will start growth hormone soon which should improve his muscle strength and tone. Good luck
Hi, another hypotonic kid here...
My DS2 was quite floppy, and took a long time to get going... hypermobile joints too.
We had test after test but in the end gave up on the diagnosis hunt and just got on with it (took years mind!) but he has done much better than we ever expected He wasn't smiley and interactive either..didn't smile til nearly 1! However he is now a fab young man.. yes he has problems still (learning disabled, ASD, still hypotonic) but he's doing well and we have had lots of good support over the years, from physio, to splints etc.
If it is of any help his story is here..
Welcome to MN
Yes indeedy Sport, the internet can be a true curse... but also sometimes I find it a great help to know there are others 'out there'... can be a bit lonely when you feel like no one in RL has the same issues.
Sotos is also a freak genetic malformation, although once you've got it there's a 50% chance of passing it on. It's a funny syndrome and the effects appear reduced in adulthood.
actually getting the diagnosis only helped us insofar as it helped with getting a statement before primary school, and maybe getting DLA: there's nothing to be done to 'cure it', so like kidsncatsnwine we just get on as best we can and get any help we can get hold of. It's whole new learning curve; maybe not what yu would've chosen, but a couple of years down the line we will all be experts in child development and paediatric physiotherapy. Great stuff if any of us get the time to consider a new career!
hypotonia can also be present with cerebral palsy (i'm sure you know that if you've googled 'low tone' or 'low muscle tone') but tbh there are so many conditions that can lead to low tone being present, as well as just having low tone. there is an EDS (Ehlers Danlos Syndrome) thread that runs on this board which has lots of ideas for low tone babies and kids.
dd2 has low tone now (she has cp) and physio and ot are really important. (she's 7, in mainstream, g&t ) she's also my third child, with no sn in the first two. she has neurological damage though, not a genetic issue.
just noticed something about your comment on the other thread - you do understand that 'hypotonia' is just a description of the symptom, don't you? it just means low tone, so it's just telling you what you knew already - that he has low tone. the cause of the low tone hasn't been identified yet?
Hi alexpolismum my DS has hypotonia & hpypermobility (among other things). I would say really, really push for physio, as IME they give you specific exercises, which don't look like they will do a lot, but do in fact make a huge difference.
DS is now 15m and has been having physio fortnightly since about 7m. Great excitement last weekend when he pulled himself up to standing for the first time!
You say that you have an appt with a specialist coming up, but your HV and / or GP will be able to refer you to physio in the meantime. Sorry, not telling you what to do (or at least i'm trying not to ) but i really believe physio has made a huge difference to my DS, and it also meant that there was someone seeing him regularly, who can offer advice and refer on to other HCP where necessary.
hi have ds with low muscle tone amongst other things
and tend to chat on the Eds post on here, pop over and have read chat if you like
what i learnt now is mostly wish i known and yelled for earlier first being decent phsyio input othe rone being equioment as ds was not walking for quite some time i would have pushed for things like standing frames so he would have been building muscles and trying things same age as his peers
Ds started walking at 3 and he does use a wheelchair now but please dont worry remember that ds has other issues that run alongside for the most dc do well with low muscle tone .
But yes phsyio is best thing and you can make it fun build it into everyday life
Hi! Another one here- dd had hypotonia and was a floppy baby. In her case, it is due to hypermobility syndrome and not related to any learning difficulties or general developmental delay. The condition causes joint pains. She has got much stronger since her growing slowed down at 13.
Thanks to everyone for all the responses.
As it happens, I didn't know that hypotonia was known as low muscle tone in English, so thanks for that. I live in Greece, and the doctor told me that ds has hypotonia in a way that made it seem like that was the whole problem. I now realise I should have pushed for more explanation, and I plan to do exactly that. I just translated hypotonia into English, but now I know a bit more, so thank you.
Thinks work differently over here. Ds is registered with a paediatrician, who has now referred him to a specialist (I have no idea what to call the specialist in English, even though English is my mother tongue, but the word in Greek translates literally as neonatal paediatric neurologist).
It has taken a long time to get anyone to listen to me, I have been saying for ages that there is something wrong. At first they put it down to a traumatic birth (he was breech), and then told me I was imagining things. I'm hoping that now they've admitted there is a problem things might move a bit faster.
Do you think I should google physio? I'm worried I might do the wrong kinds of exercises. The paed says I won't get to see a physiotherapist until after the specialist has seen ds.
I'd definitely try looking up some exercises - you really don't need to be a specialist to do them it's just small simple things which can help with posture and positioning which you can incorporate into your normal day until you do get some proper instruction - we try not to think - oh we've to do his physio we just try to build it into play time and all the things we normally do!
Hi alexpolismum. My DS also has hypotonia and I agree with everything that has been said here about physiotherapy being a priority right now.
My DS is 22 months now and is bum shuffling around, enjoying himself exploring the cupboards and drawers in the house. There have been times when I never thought that I would see him moving independently.
He started holding his head up at around 5 months, could sit with a pillow behind him at 8 months. He rolled at about 12 months and tried an inefficient form of commando crawling towards toys for ages until he was able to bum shuffle around at 20 months.
He would not weight bear on his feet until 14 months and now he can stand supported for a few seconds.
At times his progress has been very slow and hindered by infrequent physiotherapy sessions (we don't live in the UK and to get decent, regular physiotherapy you have to go to a private physiotherapist), a move to a different city and a number of hospital admissions as DS has serious immune system issues to deal with as well.
When my DS was at the stage your DS is, the physiotherapists recommended lots and lots of tummy time and playing in a supported side-lying position (next to a mirror provides some good entertainment!). He will need to develop his core muscles in his torso before he can sit steadily and move on to propping with his arms and crawling.
I have not found much free physio information on the web, but I have ordered a book that was recommended on another forum. If it's any good I'll let you know.
some of the best physio we do is swimming , lots of crossing the midline so making him pass things from hand to hand or put a toy on the floor and he has to twist around to reach it were now trying to do that in a kneeling postio0n
How olod is your ds? and is there any chance you could maybe pay for a one of private session to get some ideas?
sadly even in uk not much phsyio available wish i had found mn when ds was a baby ,infact now at 5.3 d gets 4 sessions a year so ended up paying for someone to teach nme
peasantgoneround - I cannot get him to pass things from one hand to the other, as he is still unable to hold things. He doesn't grip. He is about 10 months now.
PJs - as I am also not in the UK, I know just what you mean (where are you btw?). I might also have to pay for some private physio. I am wondering if I might be able to pay for one or two sessions to see what to do and then do it by myself. I can't afford to pay for private long term.
Your dates sound similar to mine - head supported at 6 mths here, and now at 10 mths can sit with support - cushions at the back and sides.
I like the mirror idea. I have a big mirror on the wall in the hallway that I can take down, I'm going to try that.
The only trouble is that he strenuously objects to tummy time and cries piteously every time I put him down on his tummy. I suppose I shall have to keep at it and hope he gets more used to it.
Please do tell me any other physio recommendations, it's very helpful. Actually, it's helpful just to read about other people's experiences, it makes it seem not so bad to see that other people have been there too and have made progress. I do feel a bit isolated in not knowing of any other real life cases if you see what I mean.
I also meant to add - thanks for the swimming advice that several people mentioned. At least that's one thing we can do without having to google or research!
alex mum is he trying to re4ach out for things ?
and i did the same paid for couple of private sessions then carried on doing myself even now i do his physio mysel f we don t get any more than 6 hrs a year
alex - get a gym ball and do tummy time on that to start with. they can find the vibrations interesting enough to soothe, esp if you tap. can he bang? dd2 couldn't hold anything for a long time (didn't sit until 12 mos) but loved to bang against the gym ball.
physio could also lend you a physio wedge which just props them a bit more upright instead of flat, but you can effect similar with your knees (lay him across them) or rolled up towels under chest, head higher than bottom.
when dd2 was bigger, i used to prop her against the stairs with my knees each side of her supporting so that my hands were free to help her play.
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