Pre-medicating before activity

[Guest guest]

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