hypotonia

[alexpolismum]

Hello,

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!"

peasant - yes, he reaches for things, as long as they are very close. He won't stretch to reach if you see what I mean.

NickofTime - He does bang things, and I have a wedge shaped cushion that someone gave me when I was pregnant (I still haven't worked out what it was for!) that I can put him on. I think he might like that.

Mintyfresh - thanks for the link. Off to have a proper look at it now!

I do feel a bit out of my depth and ignorant here, I hope I'm not the only one!

Hi I'm just wondering if anyone is still around from this thread and how your LO's are doing? My son has just turned 1 and was diagnosed with hypotonia at 6 days old so we have never really known 'normal'! We've had lots of tests done and nothing has been found, still waiting for some more now that have just been done by the neurologist. I've been lucky that i've always been listened to and have a good GP, neurologist, pead and an geneticist who is bloody weird but knows his stuff!! He gets physio (since 4 months) too but its really been cut down and i think its a bit vague so i think i might need to step that up a bit and become a bit more demanding. My son has always fed pretty well, he couldn't latch on but i think this was a combination of things, bt he has weaned beautifully and loves his food and can finger feed pretty well. He's been sitting unaided since just before 6 months and picks up toys, passes them from hand to hand and flicks and fiddles with them. He has fairly good balance now when he sits. He's never had a choice about being on his tummy, i was strict about it and he is happy there now and can lift his chest off the ground and roll both ways and across the floor. But he doesn't get from his tummy to sitting, or sitting to his tummy, he doesn't crawl and when he stand with support (he's been weightbearing for a long time) he doesn't even try and put a foot infront of the other and doesn't bounce much. His feet curl in the way and he stands like charlie chaplin :)

He is an incredibly alert and smiley little boy and is a bit of an entertainer. He is a cautious little boy and pretty chilled out, so i think its part of his nature to take his time with things. There is no history of muscle weakness in the family - i walked very early as did my sister and my OH. Its such a mystery so far. This past year has been one of pure joy and also of absolute worry and great sadness. I find it very difficult to know where i belong, my child is not quite 'normal' but yet i don't know if he will have special needs or if and when whatever problems he has will be identified and even when they are will it matter? I'd never even heard of this before last July, even though i have worked with children with specail needs and was not an completely clueless or ignorant. Now i feel i know far too much and spend far too much time trying to find a diagnoses and researching every known cause of hypotonia and story of a child with it. I'm driving myself crazy just now and so want to somehow put it behind me. Also what does this mean for having more children? I so want to have another.

sorry to rant i'm in a weird place right now!!

Lou x

It is very difficult, isn't it Lou? But he seems to be doing well in many ways. Sitting at under 6 months, and weightbearing at 1 yr sounds pretty good really.

Dd didn't sit until nearly 9 months and didn't walk until 19 months. She used to roll instead of crawling.

Hello Lauree

My nearly 8 month old son has been diagnosed with hypotonia and he has had a few sessions of physio which is helping him. Our pead has recommended tests n consultations with a neurologist' geneticist, neuro muscular surgeon n potentially a MRI n a biopsy. We are in the process of getting all these done.. Would like to know if you had the same round of investigations ? My son has been breast feeding well.. Eats his meals has no trouble swallowing, recognises people, reaches out n grabs things and is quite alert. He loves to kick his legs in the bath and we are shortly taking him to a one one one as we'll at the pool. I would be very grateful if you could kindly let me know your sons progress along with his milestones from 6 months onwards please. Hope he is keeping well. Thanks a lot. S

Hi Sue321, I wonder if we are the only ones left on here now...I see that you are going through a similar scenario with your son as I am. Have been going out of my mind with worry and trawling the internet finding some very frightening things....I have decided that I need to find others going through the same worries in the hope we can gain support from one another.
My son is 1 this month. We recently saw a paediatrician who has told us he has hypotonia and we have a genetic blood test later this month, I do not know of any other family members with other neuro/muscular problems. We are also waiting for physio. He has been sitting up for sometime now but occasionally folds forwards and gets stuck. He is unable to lift his head up when having tummy time-lots of work on this now means he doesn't scream when put on tummy....it was this that alerted me to a problem plus the fact he won't weight bear on arms or legs. He rolls onto his sides and can occasionally roll from tummy onto his back. His fine motor skills and social interaction are unaffected, he is a bright happy funny lovely little boy who we all adore. Lets hope that we both have some peace at some point, I am under no illusion that the path may be a hard one though. Sending happy positive vibes your way cos we need them in tough times! All the best x

A few milestones in our experience...we saw a paediatrician at 5 months old as my son struggled to hold his head up - diagnosed hypotonia and hypermobility. He started physio at 7 months old (echo the calls for getting physio as early as possible!) and he's made great progress since. He sat up approx 9 months, can't remember when he crawled but was standing and cruising round furniture from 14 months. Swimming was really useful. He was very nervous about walking without holding on but finally did it at 23 months and now at 25 months is having a ball!

His fine motor skills were equally delayed, which in turn delayed his learning though playing, but he doesn't have learning difficulties as such. He struggled with solids at 7 months which we assumed was due to low muscle tone in and around mouth, but now eats everything. He has no speech/words yet, but he does babble and shout in context so hopefully proper words will come once we start speech therapy. He is a lovely lively happy sociable little boy who is interested in the world and exploring it like every other toddler, it's just taken him a bit longer to get there! Hopefully this gives you a few pointers about milestones...it has been tough as he was quite dependent for such a long time, but he's great fun too!

He has recently undergone genetic testing which showed a chromosome deletion, but we are hopeful that the "problems" he has now will be the full extent of what he has to cope with. Have a look at Unique's website for more details, but they don't know much about this area of medicine yet, so best approach is to try and deal with the issues you know about, and not worry about what might be. Our little boy is a joy!

Hello, I realize this is a very stale thread, but could you please comment on how your little ones are doing now?