Re: Re: MAD vent on red tape

[Guest guest]

I would suggest that you immediately contact your dr and get a letter faxed STAT to the PTs. Who referred you to the PT? I would also advise you to contact the PT supervisor or patient advocate..........

The MDA may also be a source to ask for help. I know they have helped me tremendously.

I hate how people judge your credibility as a parent....I wished every one knew how mito affects the body, some seen, some not seen.

Big hugs

Ann

Ann,

I did call the doctor (it is the MDA one) and they promised me they would "educate" the PT lady, so I called her back to see if she had a better understanding and I got no where, even with the doctor explaining it she doesn't get it! She still wants to put him through more testing, I am livid, I told her I wasn't going to allow her to torture my child, she says I am being unreasonable and that she isn't going to harm him by seeing him walk longer than 5 minutes, she tells me people fake all the time, please how exactly do u fake a muscle biopsy? Plus this is the place we are supposed to be taking him for the water PT the doctor ordered, my DH was like heck no, you find somewhere else! I hate this, in the chair store my boy was riding around smiling and saying I can go outside in this baby, his face was lite up, I haven't heard him want to go outside in years! He has to get a chair...plus for camp, otherwise I know he will not go. (Talked to them at MDA about camp today, the applications go out this week for our area) I am so not giving up, I agree though I need to call the supervisor...so I did, he will get back to me.

My day just got better (NOT), happy April's fools to me, get this, the lawn guy hit my car, we live in an apt, and my car was parked, and they guy working on the lawns backed into my car with his truck, the bumper is destroyed. LOL what a day!

J, Mom to 15, mito unknown, Mirella, 4 months, status unknown (showing some signs but could be because she was early)