My daughter’s PT

Hi, my daughter (11), whose GBS began 2/07, is doing PT with a therapist 1x a week. She does some exercises and assisted exercises/stretches 2x a day, with us at home. She can walk w/ a wheeled walker, but it is very hard, very slow, and very exhausting. So anything more than walking from one room to the next, she’s in a wheelchair. Like you, she has resumed her ‘regular’ life within limits, going to school, etc, and when she began going to school PT became much harder for a while. She just didn’t have as much energy. That is probably the case for you, too. Trying to do your ‘regular’ tasks takes a lot of energy and probably is providing a good deal of ersatz PT in and of itself.

I think PT is helping maintain her strength/flexibility but as far as speeding recovery, not really. Hindering: yes, if she does too much. First time she did Aquatic therapy, they did 50 minutes of non-stop therapy. She fell asleep in the dressing room and was out the rest of the day, and her legs got numb for a couple hours, she could barely do 10 ft walker-walk to bathroom the rest of the day. So, we are still doing Aquatic, but take it a little slower.

Just saw a rehab doctor yesterday and he said frequent, brief exercise is better for her than longer sessions. The therapy visits are always pretty tough on her, but she’s bouncing back much faster now, so that is progress. We are all terribly impatient and really want her to walk asap, but I am coming to realize that more PT will not make her get better faster. Rehab doc was assessing her to see if inpatient rehab would help, but he said it would not help her get better any faster. The nerves have to heal, and as long as we maintain strength, range of motion, and flexibility (which he says we are doing well)—then we just have to wait! Very hard to be patient, as I am sure you know!