Monday, December 11, 2006

All Weak in the Ankles

My floppy ankled little girl

Hypotonia or low muscle tone is a common symptom of 1p36 Deletion Syndrome. It's probably the biggest struggle my daughter is currently facing. I've mentioned in the past few weeks her progress climbing the stairs and standing up with the help of furniture. Those things are all made more difficult because she is just so frail and weak.

Another problem with low muscle tone is poor joint stability. Parents of older 1p36 children have mentioned dislocated joints and the trouble that can bring. Thankfully, my little girl hasn't faced any separated or dislocated joints. But she does have trouble with incredibly weak and floppy ankles. A while back my wife and I bought her some shoe inserts that help support her arches. The hope was that the inserts would also help my daughter's ankles to straighten up. It hasn't worked all that well.

When my little girl pulls up on the couch and stands her ankles tilt inward almost to the floor. It can't be all that comfortable. If my wife or I force her to stand on the bottoms of her feet she will, but she won't do it by herself which makes me think she's just not strong enough to position her feet that way herself. (In the picture above you can see her left ankle turning in even after we positioned them straight in order to take her picture.) We're going to need to speak with the therapist about this. I think maybe some ankle braces would help her keep them straight until she gains the muscle to do it by herself. She wants to walk so badly and I don't want this to hinder her. Hopefully we'll find something that can help her out. I'll report back on how things turn out.


bella said...

That is a gorgeous picture!! Love it!

About the shoes/splints/braces: they made a huge differenc to the way EK stood -- she walked on her ankles (still does if she is barefoot), and her knees knocked together because of the poor balance.

She wore splints for about 5 months, and we saw huge improvements, even allowing for setbacks where she had to learn to use muscles while wearing the splints that she'd never used before.

When she 'graduated' from wearing them 100% of the time, one of her therapists suggested that we move her to "a good pair of shoes, preferably high-top, with good arches and a broad base", and we finally settled on a good pair (pricy, but we saw an immediate difference in her posture/ankles when she put them on) of Stride Rites.

Anyway... long story short: absolutely ask about splints/braces/supports (DAFOs, for example), and look into the StrideRite shoes... at least take her in and have her try them on, then stand her up and see if you can see a difference with them; they're free to try!

And again: What a wonderful picture!! She looks so happy standing up there! :)


Nate said...

Hi Bella,

Good to hear from you. Glad you liked the pic. I think we'll be making prints for the Grandparents for Christmas.

Thanks for the tips on the little one's ankles too. We're going to have to go shoe shopping, I think. And we'll have to look into a pair of those splints. I really think if she could trust her ankles to support her, she'd be a lot more confident about getting onto her feet.