Re: I took my 4 year old to the orthopedic surgeon

[Guest guest]

Amelia,

Physical therapy for me for so long saved me from alot of

deformities. So did wearing good quality shoes properly measured as

I was growing. I will also tell you that as a CMT kid, I was

encouraged to be as active as possible; horses, beachwalking,

swimming. Not everyone needs surgery, like not everyone needs

braces. Can you ask the surgeon to put you in touch with a Physical

Therapist, or, if he won't, look in your phone book, maybe also try

your local hospital.

I understand your bummed out. Your little girl has every advantage

and opportunity waiting for her, despite the CMT. There ARE many of us with CMT

who lead wonderful, full lives. She's too young I think to teach meditation - or

how thoughts in the mind can reflect in the body, but anything positive like

that you can do now will reflect in her later. Like self-esteem, body

consciousness, etc.

I had surgery (needed it, due to the roll of my feet) when I was 10.

It has lasted all these years too, quite an adventure, and no

needing braces now. That surgery I had required a week in the

hospital and weeks in plaster casts. Now I think it can be done on

an outpatient basis. You may want to get another opinion on the

surgery issue. And definitely check into physical therapy.

Good to hear you're working out. Good for 'stress'.

Gretchen

[Guest guest]

Hi Amelia...

I not sure why your surgeon is so pessimistic.

Our experience is that focused twice daily physical therapy for several

months kept Gavin from having to have tendon surgery and serial casting.

Our orthopedic surgeon suggested we switch his time wearing AFOs from

nightime (stretching his heel cords) to daytime, so that they were on

while he was weight bearing and thus got the triple benefit of 1) heel

cord stretch 2) stabilization and 3) prevention of or slowing the

progression of foot deformity. In the 3 years since he has worn AFOs

(he is 7 now) during 8 hours of daytime his ankles have stopped slipped

inward and his toes have stopped curling out.

Maybe you need a second opinion. There is hope, everyone's experience

seems different. Our team's opinion at the neuromuscular clinic is that

no you can't stop it, but all the modern interventions/therapies are

making the outcomes much better than 30 years ago.

Best of luck

Sally

[Guest guest]

Hi Amelia,

My Doctors feel the same way about PT. They want the kids to play and have fun,

swim ,ride bikes and just enjoy being a kid. They feel like the exercise they

get in the world is all the PT that they need. Now I was in PT as a kid, I went

for a few years until they told me it didn't do any good.

Of course not all doctors feel the same way and not all kids are built the same.

Just wanted to say my specialist at Cedars and the specialist at Southern

California Orthopedic Institute feel the same way. Oh an add the team that I

took Adam to at Children's.

The one thing that I thought if is that you have said Addie is a really mellow

girl. Did you mention that to him? Maybe he would consider PT if he knew she

didn't care to run around like a tornado. You can always do fun stuff at home in

place of outside PT.

What I have done for my kids in place of PT: Play doh- (I had a great recipe for

it) swimming, bikes, the mini scooters oh Adam loves that scooter! He goes

through several a year. That is how he gets around the neighborhood. A

trampoline has been their favorite by far. I found a low large one at at Sears.

It was only about 3 feet of the ground but 6 feet wide. When they out grew it I

gave it to a friend for her three big dogs to lay on. always was in a

girl scout program. They were always hiking and camping. She has also been in

art class since she was 7. Adam has joined a guitar class, Spencer has a

computer game WOW that he types on all night.

hands are showing improvement since the guitar class.

You can't really sit and wait for surgery You and Addie have a life to live.

A happy healthy life Amelia with a lot of good stuff.

[Guest guest]

My four year old has very good doctors that are familiar with CMT. They do call

her very interesting sometimes but everyone works together greatly so they are

all always on the same page. They all are very PRO PT, OT, and AFO !!!

They tell me to get her to wear her braces as much as possible but at least 12

hrs a day. Her Orthopedic surgeon talks of tendon transfer that may fix the drop

foot and has sent me info on the surgery but doesn't recommend any surgery until

there are severe deformities which with the right AFOs they can be prolonged or

avoided.

I am sorry to hear that you have a doctor that isn't very optimistic about your

child I couldn't imagine. I would defiantly look into a second opinion or new

provider all together.

Best Wishes

[Guest guest]

Dear Amelia!!!

The work for parents of children with disability is no easy. I believe you are

doing so much for your little girl: you believe she is a girl before she is a

disabled girl. This is the first step for encourage her to believe in herself,

for building a life like an integral human being, not only like a person with a

body with CMT. Before to take any option about surgery you have to have enough

information about advantages, disadvantages and alternatives. But don´t denied

it if the girl really needs it.

I ever said to my patients " is more easy carry the weight with two arms " , search

the help of your husband, your family and your friends, if they don´t know about

surgeries, they know of love and company. Your daughter needs you, but she needs

you in very good conditions, take care for yourself, remeber that before a

mother you are a woman, and a human being, too.

[Guest guest]

Hi Amelia -

The doctors that we have seen for have all said that some

kind of activity is always good to help stave off the the symtoms of

progression. For the longest time, was able to ride his bike

to and from school every day. He also loved riding his scooter.

When his balance started to fail, the bikes and the scooters were no

longer an option. (He broke his elbow falling off his scooter at

one point - but got back up and rode again for several more months

until it became too tiring)

Swimming is the one of the best activities of all. We also bought an exercise

ball and while watching TV he will roll and stretch.

Just keep Addie as busy as you can while watching for the signs of fatigue. It

doesn't matter what you are doing. Roll the ball on the floor back and forth

and make a game of it. She'll never know you are stretching her muscles. Have

her sit with her legs forming a V shape. Then roll the ball back and forth and

target inside and outside of each leg while maintaing the V shape. Or, have her

try to push the walls down!

Stand back from the wall at and have her lean forward to push

against the wall. Slowly have her move further away from the wall

and still lean forward to push down the wall. loved this

one. It stretches the heel cords. At 4 she is at the age where she

can be engaged into these kinds of activities and not worry about

how much they can be helping to strengthen and stretch.

When they hit 14, like , it becomes work....so far, though, he has only

had heel cord extensions done once (at the age of 4 1/2). He still swims and

works out with the ball.

We used to use Playdough for hand excercises, and then moved onto

the Therapy Clay. Computer keyboarding helps to a certain degree,

but then you have to worry about Carpal Tunnel developing. There's

a delicate balance there. The game of Operation is great for

grasping dexterity.

Brushing the dog is great. Building with blocks and Legos are also helpful. So,

despite the doctors pessimism I think you'll find that the parents here all

agree you can help your child without them knowing it at first, and you will be

instilling good habits for them to continue with as the CMT progresses.

[Guest guest]

Amelia,

Feel free to vent here. Don't let your daughter see your

discouragement at the situation. She'll feed off of your emotions and

staying positive for her is essential. The other thing you can do is

get her active, in the pool, in the park, wherever. Keep encouraging

her to do what she can. Your attitude and positive outlook will shape

her attitude now and in the years to come. It'll make more of a

difference than you'll ever realize.

Hugs,

T.

[Guest guest]

I wanted to say thanks for all the good advice and positive outlook

from all of you. You are a great support to me when I feel like no one really

understands me. My husband is always optimistic and super

positive AND he is the one who has CMT.

I am just in new and uncharted water for me and I'm learning as I go. I will

say my baby is a physical handful though and sometimes I think of Addie's very

laid back, relaxed personality and I marvel at how different they have been from

birth.

I just wanted to say thanks. All your feedback made me feel super

comforted and hopeful and I need to get a second opinion before I do

anything major. Addie goes to her phys. therapist Dorie on Thursday

and we just love her and I'm going to try to go 2 X a month because it helps us

stay on track and keep motivated. We haven't been there for maybe 3 months or

so. Take care.

Amelia,

[Guest guest]

Hi Amelia,

Yoga DVD's for kids are also alot of fun.

I was diagnosed as a toddler and found exercise to be fun and a great way to

bond with my mom.

Never regretted having CMT as a kid.

Well wishes,

Chris