panicking mum alert - anyone had diagnosis of mild benign congenital hypotonia>

[mommie]

A paediatrician has mentioned this as a possible cause of my dd's late walking (she is 16 months and still doesn't like standing, let alone walking) and rather stupidly i have got onto the internet and into a panic about this condition. anyone any experience of it?

Thanks everyone. I've had so much on today I've not had time to look on MN. It was great to see all these posts. It really is the fear of the unknown thats getting me at the moment. Also a bit of guilt - keep wondering why he has this when my other three are fine, what did I do differentley during pg?
I'm going back to my neglected dh now.

It's great to hear how others cope and kind of gives me an idea about what lies ahead

Do children with hypotonia tend to sleep more? (I realise that hypotonia itself is actually a symptom rather than a disorder on its own). I've found that ds4 still seems to need a lot of sleep. When he's not sleeping he sucks his fingers and looks sleepy. 9 times out of 10 I put him down on his rug for a play and to do his physio but after 10mins or so he's starting to drop off again. I guess he is having to put a lot more physical effort into all his movements and this must be tiring. My hv didn't seem unduly worried, just wondered if other babies with hypotonia did the same.

My dd has always slept loads! At 3.4 she still naps for 2 hrs a day and sleeps 12-14 hours at night
She has always slept a lot. She is quite petite though and very active so that figures that she would tire more easily :)

Actually since my last post ds has livened up a bit today. I think he's been a bit under the weather.
Good to hear your dd is very active Piffle. Ds gets quite frustrated. He really wants to be on the move but either rolls and wedges himself under the furniture or gets his arms stuck under his body! He is getting stronger though. Feeling a bit more positive about stuff today.

Hi,

Not sure if any of you are still checking this thread, but would love to know how your kids are a year and a half on. I have just been told that the reason for my boy's slow motor development is likely to be mild benign hypotonia and am now trying to work out what that is and what it means! It looks like they are probably right in that he had difficulty breast feeding, had choking episodes from not chewing properly, didn't sit up properly until 9 months, rarely rolled over, wouldn't lie on stomach, didn't crawl until 17 months and now, at 18 months, can stand up when holding onto stuff but no balance and not much in the way of cruising either. He can only say a few words, despite understanding everything. Oh and he sleeps loads also - up to 14 hours at night and 2 hours during the day, if I leave him.

I took him for a developmental assessment which I think was helpful at idenitfying things to encourage him and he currently goes to physio, which has been fantastic.

I still feel though, that I'm not really sure what it is that is wrong with him (if anything). Does benign hypotonia just mean poor muscle tone, which can be resolved, or does it mean something more scarey? I would love to hear whether now your children are still experiencing problems or whether you managed to help them overcome their difficulties and how you did it!

Thanks loads.

Thanks so much!

Hi,

My son is nearly 4, now, and has hypotonia and joint hypermobility. At 15 months, he could only sit if put in that position or lie on his back. He was always clearly bright, had good fine motor skills and his receptive language skills were very advanced, but he couldn't really talk clearly until he was 3. He can now walk, run and jump, talks eloquently, sings in tune, and can already read fluently, with understanding and expression. He can also do some of his times tables and do simple addition and subtraction, so cognitively, he is exceptionally advanced. His memory and concentration are also excellent.

As for what he still finds difficult... He cannot really hop, yet, or skip, and whilst he can pedal a tricycle indoors, he can't get the pedals moving outdoors. He also walks quite slowly and runs slowly, but has the right technique. If he uses the correct pencil grip, he can only write and draw with a fat felt tip pen - he can't make much of a mark with a pencil unless he adopts a slightly more unusual grip. However, he can form all his letters and numbers - provided you're not too fussy about the size or positioning on the page, but then he's only 3, so that's pretty good going. He is not keen on drawing, or playdough, or other activities that might strengthen his hands up. He is also left handed, so I predict he will find learning to write quite tiring and frustrating, as well as using a knife and fork properly, as cutting up food requires quite a good grip and reasonable hand strength. However, he does build up strength gradually, so it shouldn't be a lifelong disability, just something he'll have to work hard at.

Even at 4, it isn't clear exactly what is causing his problems, but more serious conditions have ruled themselves out - all that's left, really, are mild connective tissue disorders, unbelievably rare myopathies (the least likely possibility), or something like aspergers, which can be associated with hypotonia. He has some unusual personality traits and social skills, and does seem to need to be taught a lot of his motor skills, rather than having them come naturally to him, but really, he isn't clearly anything at age 4, besides hypotonic and hypermobile, so we will just have to wait and see a bit longer. A lot of the more autistic-like behaviours he has already grown out of, or seems able to keep under control, so he would be on the very mild end of the spectrum if he is, and part of the needing to be taught his motor skills may be a personality and confidence issue, as there aren't any age-appropriate skills he hasn't been able to master through intensive teaching/bossing-by-mummy, yet, except for the hopping and skipping.

All a bit of a mystery, really! I know he'll never be an athlete, though.

DD is now almost 4.
She was dx,d with hemiparesis last year and is currently waiting to be asessed as ASD is suspected.
She can walk well although with a wide gait, she still wears her peidros with more support inside, she CAN run but tends to fall, the worst side effect is that she gets very tired quickly.
We have a wheelchair, its metallic purple and really funky and she loves it but we mainly use it on holiday and when we are going somewhere that requires a lot of walking.
we have applied for an asessment from LEA but t was turned down and we are at tribunal in may, oh and she still isnt toilet trained as she has a loss of sensation.
she,s doing really really well and we are so proud of her!!

Not much time to post here as getting ready for work, but my DD has hypotonia and hypermobility, is 16 months old and has absolutely no interest in standing/oulling up, can commando crawl at speed and sit forever, and stand holding on if you put her there. Physio comes every week at the moment as they want to try to get her interested in standing, but she is very interested in the world at floor level so they are not having much luck!!!

She can sit herself up very well from lying down too, I should add, which I hope is a positive sign.

Sorry for the multiple posts.So..I can't be of much help as a success story but am also interested to hear how other children have progressed, or talk to other mums in the same position

so we're another month on and we stopped going to physio when our boy started crawling. We have now restarted him as he hadn't really progressed in the past few weeks and in the space of two recent sessions he's starting to pull himself up and has begun cruising - albeit incredibly slowly! I can't believe how amazing the physio has been. I think it's really interesting how these skills that for most kids come naturally, he needs to have taught to him - but once he has, he seems to respond well in learning them.

I am considering (though it may be premature, but I'm thinking now that it is best to tackle these things early) whether to take him to a speech therapist. Has anyone else tried this or had experience. It sounds like there is a link between hypotonia and speech issues, which makes sense as we haven't progressed dramatically beyond mama and dada, whereas all of his contemporaries have.

Hi Hayley. My DD is nearly 20 months and has GDD, hypotonia, hypermobility and severe speech & language delay, with no overall diagnosis. Her gross motor skills are quite advanced (they also improved massively after starting physio) and she can walk confidently (although she does fall over frequently).
I'm just wondering if your DS has had his hearing tested? Our DD has glue ear and moderate hearing loss, which might be partly why she doesn't speak--we can't be sure until the fluid is drained. A SALT would definitely help with his language issues but I would consider getting a referral to your local audiology team too. Apparently glue ear's more common in children with hypotonia.
HTH

ive like to know how all your lols are getting on?

dd 9 1/2 months as to been told she as hypotonia! but thats cos she was assessed with having other problems, but i dont worry to much as i now its still early, but they wanted to be sure, the phsyo as done wonders with her got her rolling, bit still carnt sit though they now sending her to speach threpy as she can only eat mush,

Joining this thread late. My dd was said to have hypotonia as a baby, but nothing was done until she developed joint pains as a 6/7yo. In her case, the hypotonia did not come with speech or other developmental delays (other than those connected with motor skills,) and was eventually diagnosed as due to Hypermobility Syndrome (a connective tissue disorder). It also affects her bowel and bladder, but less and less every year.

Arabica - thanks so much for your advice. I took my son to a development specialist who diagnosed the hypotonia and is assessing him, so I have asked her about the speech therapist and hearing issues. I think its really important for my boy for me to start getting pushy, as it looks like early intervention really helps.

I've also asked whether he could have hypermobility, as I think my physio said he could have, though I don't really know what it is.

This is all pretty difficult - it seems really hard when your child starts off exactly the same as all their contemporaries, and as they get older, they start not being at same pace as them, with no reassurances that they'll catch up. I guess it's really important to enjoy them for being them and not worry so much, but am finding it a little tricky.

Think I need to avoid googling all these issues also, as finding far too much scarey stuff, which probably is wrong and unrelated!!

Hope everything works out great with your DD and thanks again so much for the advice!

Also Trace2, I had problems with my son's feeding - so that I had a few quite very scarey choking episodes on thick vegetable purees(though at the time I never realised that they were connected to hypotonia). I took him to a speech therapist specialising in eating - they ended up doing an xray test which videos him swallowing - though it showed that he was swallowing fine but I think there were some issues with chewing, or clearing the mouth or something - he still had a few gagging episodes afterwards, but nothing too dramatic.

I ended up just taking it really slowly weaning him onto properly solid foods and made sure as much as I could that someone else was always around when I fed him. Now he's a great eater, though I still am quite nervous feeding him, a year on!

I know what you mean about not wanting to worry too much when children are young, but you must follow your gut instincts about how much intervention is needed. With NT children, the normal world around them usually provides sufficient stimulus to promote growth and development. All you're doing is ensuring that your little one gets the same chances.

In my experience, where you have no overall diagnosis, nobody gives any direction about what to do--so kmowledge is power! Find out what the health professionals do at your local child development/children's disability centre, and get an assessment about anything that concerns you. Talk to the physio, who should know about OT and SALT services in your area.

I try not to listen to people whowithout any medical knowledgetell me they're 'sure' DD will 'catch up', because they know child A who didn't speak a word until they were 2, or Child B who didn't eat, or Child C who was a bit floppy...I could go on. Inevitably such stories are inaccurate: the non-verbal child was a prolific user of sign language; Child B ate well when his dad fed him just not when his anxious mum tried to overstuff him; and Child C simply went a bit limp one day when she had flu.

I know they mean well, but such comments are usually to preserve the speaker's own emotional wellbeing (who wants to think about children with disabilities) rather than empathise with me...

I agree. It's a really weird balance of not wanting to over dramatise the situation to suggest that your child has disabilities (before you know if that's actually the case), but also knowing that it isn't just that all kids develop at different speeds and people making out that you are being neurotic for worrying about it. At the end of the day, my boy couldn't sit himself up on his own until he was 16 months and there is an actual medical problem, that is causing a series of problems (starting with the feeding ones, leading on to choking issues and mobility ones now) and when I didn't take any action, he frankly wasn't progressing. Now I've intervened and been pushy (and am very grateful for having medical insurance), the physio has been amazing and I'm seeing real results. I'd like to now do the same thing with speech therapy as he hasn't really progressed much beyond mama and dada, which he started saying 10 months ago....

Do you or anyone else have any experience of speech therapists in London. My physio has recommended one, but thought I'd check if anyone had any good experiences?

Thanks loads!

I was firstly diagnosed with benign congenital hypotonia which later turned out to be "a red herring"! In my late 30s, I was diagnosed as having hypermobility ie Ehlers-Danlos Hypermobile Type - www.hypermobility.org alongside my son (and now my daughter). My daughter and I were bottom shufflers. All of us have been floppy. Gravity has a lot to answer for! In our own time, we have been able to learn to walk (ds 2 yrs, dd 19/12, me - 2 6/12). Hypermobility Syndrome is a hidden disability - you cannot really pick us out in a crowd but we do have issues re balance, co-ordination, sensory integration (esp proprioception - bumps into things eg doorways esp catching cuffs on handles), pain, fatigue and so on - better see the website! Just wanted to say that despite a slow start in life, we are all OK. I can thoroughly recommend physio, occupational therapy and orthotics (for boots with or witout inserts). Gt Ormond St have a fab exercise programme for hypermobility - again see website.

I do know how it feels to be someone with children with delayed development (and having had it myself!) - you learn who are your friends and to tolerate or avoid those who are not so supportive of your situation, esp those who are saying non-stop how wonderfully developed their little ones are!

Cheerio
Alison