Monday, December 11, 2006
All Weak in the Ankles
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.