Age at Walking

[Guest guest]

Hi ,

My son (CMT 1B) crawled on target and started walking a couple weeks after his

first birthday. He did walk on his tip toes alot. Didn't find out until Dec

'06 that he had CMT (he is now 18) He just recently had surgery to correct a

foot deformity caused by the CMT and I'm not sure if walking on his toes was

related.

Carmella

[Guest guest]

Toe walking is related to CMT. My daughter also reached all developmental

milestones on target. She just has always had drop foot. I noticed the abnormal

gait and had 3 doctors say it wasnt nothing. I finally go told the pediatrician

I wasn't satisfied with nothing's wrong and we keep going to other specialists.

It took over a year to get a CMT diagnosis and as of now the DNA testing says

negative. She does have 2 small mutations on in the GDAP1 and the other in the

LITAF both genes are related to CMT types but according to a very known CMT

genetic researcher should not cause CMT he believes it is another gene they

haven't found.

[Guest guest]

My daughter walked at 14 months

[Guest guest]

Adam was 15 months old when he started walking but he is also dyslexic. (Late

walking is a sign of dyslexia).

was 13 or 14 months.

Spencer was 10-11 months.

Jase (non CMT) was 13 months.

[Guest guest]

I walked at eighteen months. I was a toe walker too. I have type 1A.

[Guest guest]

Hi Michele,

My son did not walk until 22 months and then it was very unsteady with

frequent falls usually into the " w " sit. He did cruise furniture and could walk

behind a push toy since 14 months but apparently did not have the upper muscle

tone to walk for a while. There was a time we thought he may never walk. This

was all before his diagnosis.

He finally learned to pedal a bike, hop, stand on one foot( only for 2 seconds)

and can actually walk up a couple steps without a handrail at 41/2 years. So he

is still just reaching his milestones. His upper leg muscles have strengthened

enough to enable all these accomplishements. I believe his AFO have helped in

strengthen his legs. He started wearing those after he learned to walk because

of tripping over his toes with foot drop and hyperextension of his knees. Hang

in there.

[Guest guest]

Hi!

My son walked a week after his first birthday. He also hit all the

target dates for growth. His toe walking always bothered me because

he was also pitched forward. Finally at age 4 1/2 a doctor paid

attention to me. A very smart orthopedist suggested that I take him

to a neurologist for evaluation before we rushed into heel-cord

extension surgery. We found a pediatric neurologist who did tests

and found that he had a very high CPK level and then said it was

o.k, to do the surgery along with a muscle biopsy. The biopsy

showed atrophy, but again the neurologist said - no worries - go

home and be happy - the surgery will have corrected the problem.

It did, for about 1 year, maybe 18 months, and he started toe

walking again. Another round of doctors, etc. and finally he was

diagnosed at age 9 with a CMT variant. It took forever to get the

doctors to pay attention. By diagnosis my son was having trouble

with fine motor skills, slurred speech and tremendous fatigue.

Stay diligent....we are the only advocates our kids have!

[Guest guest]

Hi Lenka,

I was a toe walker too and my ankles were rolling. Dr. Lockes shoes, God I hated

those things.

Ed

[Guest guest]

Hi,

My daughter, now 20, walked at 14 months. We didn't really start to

notice CMT symptoms until she was about 10 or 11. Well, we didn't really GET IT

until she was about 12, but looking back I could see things that then made

sense; like the fact that she absolutely could not learn to ice skate.

Best of luck,

[Guest guest]

My daughter started walking independently at 18 months. She was not

a toe walker though and she started toe walking just recently and

we've been doing nightly stretching and she hasn't toe walked in a

while. My husband's mom claims he didn't walk till 22 or 23 months.

Amelia