Re: serial casting for my toddler

[Guest guest]

I had the heel lengthening done 14 years ago when I was 35..They cut the cord

,little snips all the way up,then casts for 6-8 weeks..It was very painful

for the first few days ,but so glad I had it done...I wear sneakers all the

time now,Before I had to wear shoes with a heel to walk..I would fall very

easy..now my balance is alot better and dont feel funny about walking bare foot

in front of people..I'm so glad I had it done..Good luck Heidi

[Guest guest]

Mandy,

I had the casting series done when I was 4. I also had heel cord lengthening

at 7. I have heard good things and bad things about the heel cord surgery. I was

told it makes your feet weaker and that they have another procedure that is

better. I have been told that the heel cords stretch out over time with physical

therapy. Then on the other hand everything is case by case. Have you tried water

therapy or stretching? That is the first thing I would try. Then the casting

then the surgery is what I would do.

[Guest guest]

Hi Mandy, I also wanted to add that you need a few more opinions and make sure

you get her into see a Physical Therapy asap.

[Guest guest]

Dayna,

You are not being negative at all. We need honesty on this list. Thank you for

being honest we need to know the pros and cons to be able to help each other.

[Guest guest]

Mandy,

I haven't tried it, but I would suggest perhaps you get other medical opinions -

from a pediatric orthopedist or at least an orthopedist who specializes in feet,

and an orthopedic surgeon. Get many professional opinions as you need to before

making a final decision on your daughter's feet.

Gretchen

[Guest guest]

My daughter went through castings at the age of 1 and 2. She is 8 now. The

casts did not seem to help, but at the time, we did not know about the CMT. She

had movement at that time. We let the ortho do the heel cord lengthening, but

it backfired. After the surgery, her feet just dropped. She could not move her

feet or toes. The foot drop continued even with therapy. Many of my

neurologists told me that we should not have done this surgery at that time.

She still has severe foot drop and cannot move her feet. The surgery seemed to

injury her muscles and nerves.

I wonder now if we had not had the surgery done where she would be. I would

definitely research this and get more opinions. I just wish I had. Hate to be

negative, but wanted to tell you honestly.

Dayna (Mom of Becky)

[Guest guest]

My son went through 7 weeks of serial casting and yes it did work for him. He

was a little over 2 when we started it. Before the serial casting, he couldn't

stand flat at all and when he'd walk, he'd be on his toes, take approx. 8-10

steps and his ankle would give. He is going to be 4 next month and he can walk

flat. He does still walk on his toes on occassion but as soon as I say " off your

toes " he can immediately go flat.

The PT that he saw said she saw a big improvement after the serial casting.

Feel free to email me if you'd like.

Sunshine

[Guest guest]

We do physical Therapy weekly. She does well in therapy for a two year old.

She has very little attention span, but the therapist is great and works well

with the younger kids.

We will try to get some second opinions, but in our area, there are few doctors

out there knowledgeable about CMT. The orthopedist is next on our list. Not

necessarily for surgical purposes right now, but more to get a base line for the

future.

Thanks all for the info.

Mandy

[Guest guest]

Hi Mandy,

I don't know if this is the same thing as " serial casting " but when I

was small this is what was done.

I wore casts every night when I went to bed from about age 5 to 11 or

12. I don't know if they still do this. At the time I was not even

diagnosed with CMT technically but this was what was done. Also my

parents were instructed on different stretching exercises for my heel

cords. This was done with a dilingence that at the time, I cannot

say I appreciated. However now at age 45, I can say that it was

worth it. I have never had to have surgery and my heel cords are

still in pretty good shape.

You are very wise to seek alternatives...

Cheryl