Re: Pre-medicating before activity

[Guest guest]

No ideas to help you out (sorry), just wanted to say that I hope

your visit at the Mayo Clinic is productive! We can't get in to see

Dr. Whiteman but will be seeing one of his colleagues at the end of

March! Have a safe trip!

> As we do our final preps for getting to Mayo next week I am trying

to

> clarify my thoughts on some things and am hoping you all might

have some

> thoughts/experiences to share with me.

>

> After initially having Madison's Endo last summer say that she'd

like to

> see Madison in PT for the purpose of trying to build her

endurance, we

> discussed it with Dr. Whiteman last visit and he felt like this was

> definatly worth trying to see and gave us some guidelines (heart

rate

> and respirations) to use while doing so. We just yesterday

finally had

> her PT eval done and the PT seemed to " get " her issues and they

were

> careful and conservative in what they had her do yesterday and

included

> a number of rest periods into the eval for her. When all was said

and

> done though, she was having alot of leg pain last night, no doubt

from

> the evaluation, and woke this morning feeling " tight " from the

knee down

> in one leg in particular. The PT is recommending what we were

hoping

> for.....aquatic PT......and was even " wise " enough to say that

while a

> 30 minute session will be blocked off for her, she would start out

> initially only working her for 10-20 minutes so as to not overdo.

> Ultimatly the PT's hope is to get her in for 2 of these sessions a

week

> and I do think this would be wonderful IF we can get her to a

point of

> tolerating it. The PT explained too that watching heart rate and

> respirations while in the water won't help alot because those

systems

> work differently under water than they do on land. In other

words, she

> wants to be careful and conservative since we don't have those

tools to

> use to know when Madison has had enough.

>

> So all we're really left with is trying to address the leg pain

that may

> or may not be an issue afterwards....not for sure that the water

therapy

> will cause the same issue yet, but trying to be prepared in case it

> does. I hate to see her in pain and we know that as high as her

pain

> threshold is, when she complains of pain, she is in real pain. So

I am

> wondering if maybe we might premedicate her before her sessions

and see

> if this might stave off the pain later on though am not sure

whether

> this is the best way to handle it or not. Has anyone else had this

> experience and found a way to make it work? I am sincerely hoping

there

> will be less of this when its water based therapy, however know

there is

> a chance we'll have the same issue there. I desperatly would like

to

> see her build some endurance in hopes we could relax some of her

> restrictions and ultimatly be able to play more, so am very

hopeful this

> type of therapy will lead to some improvements.

>

> Any thoughts, ideas, experiences are VERY needed and welcome. We

head

> for Mayo on Monday and I'd like to be able to intelligently

discuss this

> very thing with the doctors there. Thanks as always for ALL your

> help!!!

>

> -- BIG hugs,

> Kass, proud mom to Chance(10-Mito), Madison(7-Mito), and Abby(6-

Mito)

> " Life is not measured by the breaths we take, but by the moments

that

> take our breath away " Carlin