My son is 18 and has DMD. He has 90 degree leg contractures and I am finding myself having major problems trying to get his legs comfortable at night. I started using a wedge and then I had to start adding pillows to raise his lower legs parallel to the bed. Now we have progressed to using a lot of pillows and different size blankets to get his legs comfortable and sometimes we even have problems with leg cramps. Does anyone have any ideas to make getting him comfortable at night easier? I have searched hundreds of handicap equipment sites and seem to only find "the wedge".
Also, my son only weighs about 90 lbs and is about 5'4". His tail bone and tailbone can be felt just under the skin. He is constantly waking me several times a night to relieve pressure off of these areas. I have tried to position him on his side among many other things to help but he is not comfortable unless flat on his back. He has a hospital bed and we have put 8 inches of memory foam on top and I cannot seem to get it soft enough.
If you have any experience with these problems or any suggestions...I welcome them. The older he gets, the harder caring for him becomes.
Thank you in advance,
Are the sheets or blankest on top (covering him) pulling down on his legs causing the pillows/wedge to slowly slide out of place? If that is the cause, I have seen a device that lifts the sheets up, creating a little dome or tent effect to prevent this. It might help. Maybe you could get one as a try-out. Godspeed.
Hi Kathy. My son is 22 and has DMD. We use 2 or 3 inch foam in between his knees and between his feet when he is on his side. I bought the foam at a fabric store.. I also have wool cushions...I know that sounds strange..The material is like the inside of UGG boots. We use these cushions between his knees. We also use a pillow next to his back on side positioning. When he is on his back I use pillows, foam and the wool cushions. Have you ever had a sleep study done? When my son starting waking more than usual at night it really wasn't the positioning it was that his oxygen level went down during the night. He now uses a Bipap machine and things are a little better. Have you tried any other mattresses? We are using a turnq mattress,(but it doesn't turn him) It is an air mattress. Hope these ideas help you.
Lambswool mattress pads maybe.
Have you tried a pressure relief mattress? Your insurance might cover it as medical equiptment, since he is definately at risk for skin break down, because he is thin and does not turn himself. Check with the company that supplied the hospital bed or his PT to see if you can get one.