CMT as a kid

[Guest guest]

Hi louise,

Thanks for asking the questions to me - and others - who have had CMT since we

were children. I only got my diagnosis about 8 months ago, but it is clear that

I have had CMT my whole life - it is like putting a puzzle together. My mother

also had CMT (sadly has passed away so I can't ask her questions now - but

reading the bulletin I now understand her a lot better) and I think my sister

has it too (it is not officially diagnosed for her - but she has the same issues

that me and my mom did/do).

What Gretchen says about the second wind is true. Even now I find that I push

it, get really tired, rest for about 30 minutes, then feel about 1000% better

and could do it all again. I am hoping to find that second wind next weekend,

when I am doing a 60k walk aver two days for breast cancer!

I think the most important thing is patience with her pace of walking. For me I

was constantly harassed by mom and dad to walk quicker and pick up my feet. It

was not fun. Just let your daughter walk at her own pace (not dawdling, but

slow if she needs to) and then that is fine.

I never played my parents for " fools " with my CMT - if anything we did not know

I had it, so there was no playing to do. I remember being about 11 and going

through a really rough patch, where I slept for about 20 hours a day for 2 weeks

and did not go to school. They checked me for mono and other sicknesses, and

nothing. It coincided with a big growth spurt. Mom and dad just let me stay at

home and sleep, and take it as easy as I needed.

One thing I wish they had done was to encourage me to do more sport as a child.

My balance was not good, my running slow, so when I was discouraged they would

not really push me too hard to still try and just be a part of the team. I

think if I had done more sport when younger it would be better for me now - you

know the cheerleading is so good. Also make sure your little girl gets into

swimming - it is just the best exercise there is as we get older (for anyone -

CMT or not). And stretching / yoga would be great (mother daughter / family

stuff here maybe). The most important thing, CMT or not, in any family of

course, in my opinion, are together activities -

and anything active is great as well for health etc. So lots of the walks (5k

charity ones), swimming, etc. That is what I would recommend - as a joint

activity.

Any other questions let me know. I would really look into the hypermobility

thing - as one of the other posts said, the dislocation (hip or knee like I

have) could be caused by hypermobility, which can be managed by easy physical

therapy.

All the best from London,

Donna

[Guest guest]

Donna,

Thank you for all your amazing advice and for sharing your own personal

experiences.I have found a new approach to helping and caring for Katelyns

needs.I will never fully be able to understand what Katelyn is feeling, however

by listening to yours and others experiences has helped me to better understand

what she might be feeling.

I have been looking into the swimmimng. We have a pool and she loves to swim but

now that the colder days are coming I definetly need to find a place to take

her.My PT has also just mentioned to me about how good yoga would be for her,so

that is my next goal.Would you happen to know if health insurance or any

organizations would help with the costs of these activities for kids with CMT?

I definetly will check into the hypermobility.She sees her orthopedic dr on

10/05.Its on my list of questions already.Thanks.

louise

[Guest guest]

In a message dated 9/21/2005 11:08:51 A.M. Pacific Daylight Time,

mylittleangel427@... writes:

Would you happen to know if health insurance or any organizations would help

with the costs of these activities for kids with CMT?

They can pay for physical therapy. I went as a child for years. I had other

kids with me. We made stuff, played games, swam and cooked. It wasn't all

bad.