anyone else dealing with 'just' low muscle tone? Are there always other issues?

[wonderinglonely]

hello all, I have also posted this on the EDS thread, just not sure where best place would be.

I expect I am about to explain this quite badly. I have posted a few times about DD who has hypotonia. She coming on reasonably well with physio and OT help and seems to be getting on fine at school, though I worry a bit about handwriting etc due to motor skills delay (she was a late walker). Her coordination is improving and dressing etc is ok, if a bit laboured.

Anyway, I know that low tone can also be a symptom of/associated with other conditions. However, I think she is a bit too young for a dyspraxia diagnosis, for example.

She did a lot of flapping when she was younger though this has abated (still does a bit of tapping when playing on her own). She is almost 6, reasonably sociable if a bit shy and seems to have formed particular friendships at school.

Could she just have low tone or are there inevitably other issues? Is anyone out there who is just a bit badly coordinated and bendy?

thanks, sorry, I meant this to be short!

My DD2 is 'pure' low tone. Late milestones, (physically and speech) and had physio for a few years. Absolutely no other issues. She is 17 now..on track to get great A level grades and hopefully off to Uni to be a Learning disability nurse next year:)

However she still can't ride a bike, and refuses to try to learn to drive because she is definitely a bit uncoordinated and thinks it will be a disaster (I suspect she is right ) She gets tired very fast and her body almost shuts down in the cold. She had Glandular Fever at the beginning of this year and was very poorly indeed and it has taken her a lot longer to recover physically that it should have.. her low tone still really shows up when she is unwell as she flops even now.

On the plus side her ridiculous bendiness has proved great for party tricks!!!

Incidentally my mother is also low tone and still amazingly hypermobile in her 60s... she was a child in calipers......

So yes you can be low tone and get along with no other issues:)

My DS2 on the other hand has a huge heap of issues with his hypotonia :/

I think as time has gone on, more and more rare disorders have been discovered that can help explain otherwise unexplained low muscle tone (eg very rare metabolic issues or muscular issues, or connective tissue disorders, or more generalised issues with the central nervous system/dyspraxia/aspergers, etc). I think it is possible for whatever causes it not to really cause any major problems in life beyond the low tone itself, though - so, being more bendy than usual, tiring more easily than usual, possible mild co-ordination issues can be the limit of the experience. In other words, hypotonia always signals the possibility of something "more" going on (something has to be causing it, after all...), but it doesn't have to transpire that there is anything hugely significant to notice and the problems caused by the hypotonia often lessen in these cases as the child gets older, provided he or she remains active.

I definitely don't think she is too young to be dx with dyspraxia - DS1 was at 3.5 yr. As others have mentioned - low tone, hypermobility and all the related can be an indicator of other things - but is in no way an indicator of how much they will be able to achieve.
Definitely there can be a genetic link. DS1 dyspraxia, DS2 bends like a contortionist and very muscular and athletic, i have a beighton scale of 7/9 and over 40 yr .
The thing to watch with low tone is that we can only see the external manifestations of low tone - handwriting, buttons, using cutlery etc. What we can't see is if there is any low tone on the internal muscles. For that you need medical assistance. It's worth getting checked out.
Medusa - lol at the party tricks. DS1 and DS2 can do the nose picking thing without using their hands - tongue only (tmi)

thanks everyone, that is very encouraging. Certainly, she seems to be improving and is 'age appropriate' now with many exercises etc. However, I do see she is not as able as others. Her speech was always very good (DD2 not so clear at the same age).

Yes, I have already projected to her wanting to learn to drive! I expect its scary enough at the best of times for a parent, but I do wonder if she'll be able to manage it. She is a long way from losing the stabilisers on her bicycle.

DD2 was not an early sitter upper or walker either but not enough for any alarms to ring. She seems very able but I think until she's at the stage where self care/dressing would be expected, its hard to know if she will be affected.

I have heard of muscle biopsies (I think?) but maybe too invasive in DD's case as otherwise 'ok'. I wonder what they can reveal in terms of finding a course of treatment etc? Would it be worthwhile? Physio and OT seem to have assisted here.

thanks again everyone.

my dd is 14 months old she as hypotonia, hyper mobility,plagiacephly and spinal cord defect she scores 9/9 in beighton scale and her party trick is scratching the back of her head wit her little toe lol

wonderinglonely - I think muscle biopsies are extremely invasive and wouldn't result in you being offered miracle treatments, even if your dd turned out to have a rare and mild neuromuscuar disorder, as there aren't currently any miracle treatments or cures. If your dd's reflexes are normal, her heart sounds normal when the doctor listens to it, she has no problems with her eyes, she doesn't get regular chest infections, she doesn't have problems eating, and physio, OT and keeping active seem to work in building up her muscle strength and stability and helping with her co-ordination, there probably isn't a huge benefit at this stage in pursuing more answers. If she starts to complain of pain or her symptoms get worse, or new symptoms appear, or it becomes more apparent that she does have issues beyond low tone, then obviously more must be done to find out why, but there are just so many possible causes of hypotonia that with only that to go on, it is a bit like looking for a needle in a haystack trying to find out why your child is like that.

My DS2 did have a muscle biopsy ..under the care of Prom Muntoni and Manzur who are the neuromuscular gods in London... but we didn't learn much from it ..it was mildly abnormal and non specific!

It wasn't a nice thing to put my son through but at the time they thought he might have a serious condition so it was necessary. In the end, for us , it has been a wait and see affair!