questions, questions, questions,

[Guest guest]

Hi All,

Got the test results from Athean for my 17 year old son and I have a

bunch of questions. A million things buzzing through my brain so

please bear with me.

He has a new mutation in the MPZ gene and they aren't able to classify

which type of CMT it is. (my sister's results exactly the same) Is

there any issue related to treatment if you don't know the exact type?

Can anyone give an idea regarding progression? I realize that

everyone is different, just looking for statistics. He seems to be

having more and more problems especially over the last 6 months and

being that he is only 17 I'm concerned. Is stating that he is having

trouble with his hands, not being able to make a tight fist, open

jars, noticing slower reaction time like when playing video games.

Foot seems to be stiffing up. Back hurting more and more (assuming due

to the foot)

Any medications that can slow the progress?

Any info on what to expect related to surgery to his foot. Types of

surgery, healing time. Questions we should ask? He will be 18 in a

few months - pediatric Doc? He has been diagnosed with cavus foot and

hammertoes. It looks like, for lack of a better work, that his

foot/ankle is deformed. He can't physically roll his foot inward to

try to make his foot flat.

Does anyone with CMT have allergies to an unusual large amount of

antibiotics?

Pretty much any advice, thoughts, suggestions would be appreciated.

Have an appointment with his neurologist tomorrow so you will probably

hear from me again.

Thanks!

Carmella

[Guest guest]

Carmella,

Go back and read my posts this week about progression and prediction.

Right now the 3 top " treatments " emerging for CMT are all for CMT

1A. That's because 1A affects about 70-75% of all CMT. Meanwhile,

pay attention to the toxic medications list and ask your son's

neurologist and orthopedist about supplements, exercise, possible

medications, nutrition, sleep, physical therapy,etc.

There are no medications that slow CMT.

An orthopedist can look at his foot and back to discern what's going

on and offer suggestions/advice. As for surgery on his foot, ask

your doctor for his opinion. This may be a wait and see approach,

perhaps first trying in-shoe orthotics, physical therapy, or AFOs. I

had surgery at a very young age, tendon surgery, both feet, healing

time was 6 weeks. I would suggest that you consult with an adult

orthopedist for surgery, not a pediatric one - although a peds might

be a good 2nd opinion. The doc who did my surgery was an adult

orthopedist, even tho I was a kid.

A physical therapist may be able to suggest foot exercises or ones

to strengthen his foot. Perhaps getting your son into a swimming or

beach walking program may be beneficial, as it was for me and still

is. (although now a bit " chilly " here on the beach!)

~ Gretchen

[Guest guest]

Carmella:

I also have an " unknown variant " on the MPZ gene. I don't think it is all that

unusual, in fact, I'd love to know how many of us there are who don't neatly

fall into one of the categories. Maybe a topic for a poll sometime Gretchen?

Gretchen does us all a great service providing all the research and links (thank

you, thank you!). I try to stay on top of it and pay particular attention to

articles concerning the MPZ gene.

All best,

Tami

[Guest guest]

Gretchen -

Can't thank you enough for all that you do. You have made a HUGE difference for

us with all the time you take to help provide whatever info you can. I can't

express enough how wonderful it is to ask anything - no matter how stupid it may

seem - and you just do so much to help each person. You are a very special

person and I truly appreciate this group and all the support it is giving me.

Carmella

Carmella,

Go back and read my posts this week about progression and prediction.

Right now the 3 top " treatments " emerging for CMT are all for CMT

1A. That's because 1A affects about 70-75% of all CMT. Meanwhile,

pay attention to the toxic medications list and ask your son's

neurologist and orthopedist about supplements, exercise, possible

medications, nutrition, sleep, physical therapy,etc.

There are no medications that slow CMT.

An orthopedist can look at his foot and back to discern what's going

on and offer suggestions/ advice. As for surgery on his foot, ask

your doctor for his opinion. This may be a wait and see approach,

perhaps first trying in-shoe orthotics, physical therapy, or AFOs. I

had surgery at a very young age, tendon surgery, both feet, healing

time was 6 weeks. I would suggest that you consult with an adult

orthopedist for surgery, not a pediatric one - although a peds might

be a good 2nd opinion. The doc who did my surgery was an adult

orthopedist, even tho I was a kid.

A physical therapist may be able to suggest foot exercises or ones

to strengthen his foot. Perhaps getting your son into a swimming or

beach walking program may be beneficial, as it was for me and still

is. (although now a bit " chilly " here on the beach!)

~ Gretchen

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__________________________________________________

[Guest guest]

Hi Tami,

Do other family members have CMT? Can I ask what issues you have with CMT? In

regards to treatment, have you had any issues since you don't have a specific

know type?

Carmella

Carmella:

I also have an " unknown variant " on the MPZ gene. I don't think it is all that

unusual, in fact, I'd love to know how many of us there are who don't neatly

fall into one of the categories. Maybe a topic for a poll sometime Gretchen?

Gretchen does us all a great service providing all the research and links (thank

you, thank you!). I try to stay on top of it and pay particular attention to

articles concerning the MPZ gene.

All best,

Tami

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__________________________________________________

[Guest guest]

Hi Carmella,

I was told that anytime a child is growing CMT can act a little worse. After

their growth spurt it mellows out. Hopefully your son is growing. I also have a

17 yr old son with CMT.