Thanks for insight, what about wheelchairs vs. mobility scooters?

February 17, 2004

Thank you all for your insight into the CO2 retention. Collin is

having some difficulties right now, such as bizarre sleep

disturbances, pale skin, headaches, muscle cramps, fatigue, all the

dysautonomia trouble, etc. He must be in a energy crunch or

something right now. We never know if this is something serious that

needs medical attention or if the doctor is just going to tell us

what we already know. Our pediatrician locally is wonderful but she

refers on to the neuro who is hard to get in to who then refers to a

mito specialist who is harder to get in to. I am sure you all know

what I'm talking about. We need to pray for direction right now

because we are very overwhelmed. I went to a memorial service today

at the nursing home where my mom lived the last few yrs. of her life,

and I feel more overwhelmed knowing she had MD as well.

This group has been helpful because though I didn't post at first, we

read the emails and saw a lot of the same issues in our son. He

does well most of the time, but it's kind of like when is he well he

is pretty much like the other two children, aside from learning

difficulties and such, but when he is in a down

time he really spirals down. It seems like all or nothing with him.

Is that typical of mito kids or unique to him? He can walk

normally, but too much

walking hurts his legs and sends him into an energy crunch. We are

in the process of getting him a mobility scooter. How are those

versus a wheelchair? He can't use a wheelchair that he pushes

himself because of using so much energy to do that. What is your

experience? He is almost 11 and about ?lbs. (I can never remember

height or weight!)

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