Re: welcome Jennie and son

[Guest guest]

Dear Jennie...

Please do pursue OT and PT with your son right away. Our son Gavin was

diagnosed at 3-1/2...He was behind on his gross motor and some fine motor

milestones. We got him into weekly therapy right away (although we did have to

pay for it) and after 6 months he was hugely improved.

The way the therapist explained it was the instability he had been

feeling was causing him to not try doing certain moves that most kids

do...their bodies learned new skills by pushing the limits...She showed him how

to do those moves in a controlled way that really helped, and worked on target

strengthening. After those 6 months friends said they were amazed at what he

was doing.

Always trust your instincts. We did recently when we weren't happy with what

our Neuro was saying and as a result visited Wayne State and got great

advice...resulting in Gavin being virtually pain free now after 3 months of a

new approach.

Cheers

Sally

------------------------------------------------

Sally Pehrsson, Ph.D

Project Leader, Flin Flon Project

Targeted Geoscience Initiative Program

Geological Survey of Canada

601 Booth Street

Ottawa, Ontario

K1A 0E8

613-943-8883 (phone)

613-943-0843 (fax)

pehrsson@...

[Guest guest]

Jennie,

I have two children with CMT ages 2 1/2 and 5 1/2. I feel for you!! Just keep

trying. I would take them to a neuro at a childrens hospital. we take our kids

twice a year even though the hospital is 4 hours away (one way). We are from a

small rural area and although all their docs (pediatricans, physical therapist,

ect.) that they see around here have knowledge of CMT none of them had actually

treated a child with CMT.

We go to the Seattle Childrens Hospial (a MDA clinic) and see the neurologist,

physical therapist, and occupational therapist. They see children with CMT all

the time so they know what to look for through experience. They put together a

" game plan " for the care for my children and then I take it to their physical

therapists and other docs and they follow it. So far so good!

My son was evaluated at 18 months and had no delays or muscle/tendon tightness.

He will be evaluated again in April and I and fear he won't do as well this

time, I am seeing tightness begining and starting to notice a difference between

him and children his age in balance, running abilities, and coordination. My

daughter was evaluated at 3 1/2 and scored at a 2 1/2 level.

She has been re-evaluated every 3 months since and consistantly has a year

delay, but I look at it as a victory that it hasnt gotten any worse than a year

and she is making her goals though not as quickly as they would like. She has

really tight hamstrings and achillies tendons, she wears DAFOs to help with this

aswell as streatching she dose with the PTs and at home. I hope you find some

great help soon! feel free to e-mail me if have any questions i might help with

or just want to talk to a mom whos going through something similar