Re: CMT & Hip Dysplasia

[Guest guest]

Best of luck to you and especially your son. Your going to a very good

hospital.

Barb

[Guest guest]

Jim,

What were his symptoms? My son has a hip thing going on and I am not sure what

it is. The orthotist thinks it is his AFOs making his hips weak. I am not so

sure now.

Thank you

[Guest guest]

Jim,

My older son broke his leg, rebroke his leg and had two surgeries all within two

years. He was in a cast a total of 12 months. He was so good at dragging that

cast around. We had a school teacher come to our house so he could keep up with

his class. He actually passed them up by 6 months.

As far as atrophy there was some but nothing that stopped him. He was able to go

up my nephews stairs without using his hands after a few months. Kids recover so

quickly.

[Guest guest]

Jim,

My 4 year old also has CMT and hip dysplasia, which was diagnosed at age 2 when

we were running a series of test and x-rays in his initial neuromuscular rulling

out phases. He has been followed with x-rays every 4-6 months and was told at 3

years he needed surgery.

We were extremely concerned about his recovery and loss of function especially

in this early development stage after being told he would wear a body cast for a

minumum of 10 weeks. We received a second opinion by an orthopedist in the MDA

clinic who was knowledgable of CMT and took this into consideration.

Her suggestion was to place him in an abduction brace which he wears every

night. He has now been wearing it without fail for almost a year. His last

x-ray showed no worsening of his dysplasia so we are continuing the bracing. He

may need surgery down the road but at this point everything looks o-kay so we

just keep monitoring it. We are very glad not to be going the surgery route.

His first orthopedist felt he could end up needing a total hip replacement as an

adolescent if we didn't do the surgery. So time and bracing may change that

coarse.

Please let me know what your orthopedist decides. Best of luck.

[Guest guest]

-

Thanks for your support and encouragement. He did go through heel cord

lengthening surgery and came through that OK. We don't know what needs

to be immobilized for hip surgery yet though, or for how long.

As for symptoms, he really didn't have any. A couple of years ago he

complained of some hip pain, that Tylenol took care of. We felt it was

just general aches associated with CMT. He's always had a gait that

was 'off', he runs stiffly and slowly, and has poor balance. Again we

thought it was the symptoms of CMT. If your son is having some hip

issues, an X-ray can't hurt, and can give you some peace of mind. Our

doctor was surprised at the results. Let me know what happens.

Jim

[Guest guest]

Thanks Barb - The Boston area has great hospitals and doctors, but we

still have to educate them about CMT. Many of the doctors and staff

have just never heard of it.

Jim

[Guest guest]

Thanks Jim,

Next time I am at the Dr. I am going to have him X rayed.

[Guest guest]

Interestingly, our two children both had hip dysplasia that was fortunately

discovered at birth. It was resolved by casting both legs as babies for a couple

of months. We have not had hip problems since. We however, only discovered both

had CMT a decade after the fact. I recall looking at the ultrasounds and no

socket to hold the hip bone was present however, things looked fine after the

casting.

Also, as an update to the group, our 15 year old son had multiple procedures

performed by Dr. Pfeffer at Cedars Sinai (CA). It was performed on an outpatient

basis and I have nothing but positive things to say about the whole process and

results thus far!

Geoff Woodward

Edmonton, Canada