Re: - the spinal tap

[Guest guest]

My husband is going to go with me to drive. both tests

he'll be alseep for, yes. and i realize he would be in

the hospital for a day or so. and i can handle that.

these past 2 months have been nothing but doctors

visits for him. and still is till next week. and i

think it would be the same if not for christmas lol.

it's taking it's toll on me as well. he can't really

enjoy the fact that santa is coming soon from worrying

about doctors visits. not only for the CMT but he also

just had tubes put in his ears. he has always had bad

ear aches and ear infections all the time since birth.

wonder if it has anything to do with CMT? even now he

has trouble hearing at times. also at times his CMT is

worse so maybe they are somewhat linked. he has been

pushing himself alot lately. he's been working with

dad to spend time with him and not think about all

that's going on. he has to be active or he's not

happy. and he struggles at times but he's not giving

up. and he wont even mention that he's tired or

hurting, i can just tell by the looks on his face and

him slowing down alot. i hope his attitude doesn't

change. i think it does him good.

renee

--- Gretchen Glick <liliwigg@...> wrote:

> Glad I could help . I did not realize how young

> your son is and

> that he waas going to have the spinal tap the same

> day. I had that too,

> at a different time and I was older. I just had to

> lie down for a few

> days after the tap or I'd get a headache. Will your

> son be asleep for

> the tap too?

>

> I will be truthful, that DID hurt, although I have

> heard it has

> improved.I had no anesthesia and felt it all!

>

> Maybe the Dr. could do both on the same day? Your

> son will probably feel

> worse from the tap for a few days. Is the Dr.

> looking for CMT or

> something else, because the EMG and DNA test are so

> NON-Invasive for

> CMT.

>

> , my heart goes out to you, your son and these

> tests. My Mom and I

> were in your shoes once, only I was a bit older.

> , I came through

> all those tests OK and have lived to tell about it,

> yes, it was hard

> times and I hated Drs. and hospitals for years to

> come because of it.

>

> I got over it and my life has been rich and full so

> far (not over yet!

> LOL) One thing that if I had kids of my own now I

> would demand I be by

> their side for everything! My parents were NOT

> allowed in testing with

> me and even tho I was a young teen, I was scared.

> For my surgery and all

> other times, my parents were there when I went

> 'under' and when I 'woke'

> up. That was a great comfort.

>

> Can you get a friend or other family member to go

> with you in case you

> don't want to drive but just comfort your son?

>

> ~ Gretchen

>

>