Re: AFOs for CMT Kids-Parents please take note

February 19, 2008

Let me start by saying I am not a doctor or a nurse. I am a wife,

mother, school secretary and chief cook and bottle washer in our home.

That being said, since my sons diagnosis I have become aware that AFOs are

indeed appropriate for many many people diagnosed with CMT(both adults and

children). In the past 6 years we have seen 5 orthopedists who ALL agreed that

AFOs were not an appropriate option for our son due to the gait issues specific

to his CMT variant. We didn't avoid AFOs - we were told they were not

appropriate.

Our son is recuperating from an osteotomy, plantar something or other

and heel cord extension on one foot. We will be scheduling the surgery for his

other foot as soon as he is cleared for it. Once he has fully recuperated from

both surgeries, we have been told it is indeed possible that he may require

AFOs. If so, he will have them.

I pray to God that he will be able to walk and stop using his power assist chair

to travel around campus. We didn't go to " extreme " by getting the power

assist...we did what was necessary to keep him in school.

This support group is supposed to be a forum for exchanging ideas and

supporting one another and I guess I am growing weary of constant jabs being

posted about the way our family has worked with our sons doctors to best assist

our child. Since I am the only one who has ever posted about a power assist

chair for their child, I know that this was directed at us.

So, the point of this long-winded post is just to say to other parents: find a

doctor or doctors that you believe in and are willing to trust to help you make

informed decisions. Then, assess your childs needs and go with what your gut

tells you to do. Don't be afraid to ask a gazillion questions, and take

everything in and digest it.

As with everything else in life, CMT patients are all unique and while there are

many similarities...only you can decide what's right for your child. I have met

many wonderful people on this site, and have learned so much and felt the

support of so many ... I would hate to lose my comfort here as a result of the

narrow-minded thinking of some.

Recommended Posts