Hypotonia (low muscle tone)

[allycat06]

DS (18 months) just got diagnosed by the physio today so I'm still trying to get my head around it all.

As far as I can gather it seems to only be in his legs. His feet are very turned in and legs quite bowed. He loves to sit in the W position (legs tucked in underneath) and his hamstring muscles are very short and tight. His speech, fine motor skills and all other development is perfect. Apart from the lack of walking he is a total monkey, climbing everything and still manages to get around pretty fast walking on his knees.
Which is promising I guess. He is only now really making a slight effort to walk, a few tentative, very wobbly steps.

I'm hoping we have picked it up early enough to be corrected and are booked in for fortnightly appointments with the physio. She seems to think as long as we work hard to strengthen his legs it shouldn't be a long term issue.

Just wondering if there is anyone else around who has had a child with this condition? What is it caused by? How are they coping? And if they are older has it improved?

Our next step is to find out the cause of DS's low muscle tone, we have an appt with a paed in early Jan. I suspect rickets or Marfan's Syndrome which runs in DH's family. His dad, brother and uncle have it (mildish cases), DH hasn't been formally diagnosed but has many of the traits.

[loulabelle]

Hi,

Dd has the same condition she was diagnosed at around 12 months when she still wasn't crawling. She is now almost 17 months.
Although I can't tell you how the future will go, I can say that physio has been so helpful. She seems to make great progress after each session. She's not walking but is crawling and pulling up now. She has a bit of trouble cruising due to her feet refusing to stay straight, her ankles just can't quite hold the weight yet.
It's hard for her because she desperate to walk and has a shoe obsession! She crawl around the house trying to find shoes! She's frustrated.
I've never heard of those other conditions though. What is involved in them? We have another pead appointment in a couple of weeks so I guess we'll find out more then.

How is your ds coping?

[allycat06]

Hi Laura
Sounds like your DD is making great progress with the physio. It's hard to watch them struggle isn't it? I'm glad we've actually got some answers now. I took DS to the GP recently and he made me feel so stupid for even being worried, said his legs looked completely fine but said I could have a referral to the paed 'if I really wanted to'. Thankfully we moved house and started seeing a new MCHN and she's the one who commented that his legs didn't look right and strongly recommended seeing the paed and a physio.

DS is coping fine, apart from the fact he is no longer allowed to sit with his knees tucked under which is frustrating for him. We are constantly following him around correcting it. Actually he just chucked a massive tanty because I won't let him do it! The physio suggested putting sweatbands around his knees to make it harder for him to sit like that, which I think I might have to do. The only time his muscle weakness is really obvious is when he tries to walk alone, it's like watching a baby horse. He doesn't seem to let it get him down though which is good.

Rickets is caused by vitamin D deficiency and causes the bones to soften and deform (like bowed legs) and Marfan's is a genetic disorder of the connective tissue. MIL told me that BIL was diagnosed with hypotonia at 2 and he has Marfan's so could be a connection there. Although one of the most tell tale signs of Marfan's is height (BIL is 6'8 and was always off the charts for length as a baby) and DS is tiny. Hopefully the paed can get to the bottom of it.

[Early Kids]

DS is coping fine, apart from the fact he is no longer allowed to sit with his knees tucked under which is frustrating for him. We are constantly following him around correcting it. Actually he just chucked a massive tanty because I won't let him do it! The physio suggested putting sweatbands around his knees to make it harder for him to sit like that, which I think I might have to do.

I don't have experience with hypotonia, but my DS2 is bow-legged, inward toeing and w-sits! He's never sat 'correctly' and we are having such a difficult time correcting him. I just wanted to say thanks for posting the tip from your physio! I'll have to try that