CMT and children

[Guest guest]

Hi to Everyone,

I need to ask a question to anyone who has some input..Thanks guys!

I have a daughter who is 25 now and doesn't show any symtoms of CMT, except she

does constantly tap her foot and her posture was never that great, and I always

told her to keep her shoulders straight.

Anyway, I don't want her to get worried and am letting her live her life and

when she has any questions she knows who to ask.

My question is....I'm thinking about having another child but don't want to pass

on CMT to them. What are your thoughts on that because I see many of you have

children. It just scares me that I'll pass this on to him or her??

Thanks so much.

in the Keys

[Guest guest]

Hi in the Keys,

Yep, it sure scared me to, to think of having children and passing CMT

on. Being a CMT child myself, plus my concerns over my own CMT and

ability to care for children, maintain a career, and about 100 other

related issues, I chose not to have children. No regrets either. And this was

WAY before their was a defined 'genetic link' to CMT. I just figured since I had

it, I 'could' pass it on. Looking at 50/50 odds now, those are pretty poor.

If you are thinking of having another child, you may want to adopt, or

try PGD.

If it is concern of yours with your daughter now, why not have her DNA

tested? The result may just be 'peace of mind'.

~ Gretchen

[Guest guest]

Honestly that's a pretty hard question to answer. My wife and I decided to go

ahead and have a child even with that possibility. Who you really need to be

asking that question of is the person who will be the father.

[Guest guest]

There is some embryo testing that they can do. I believe it is called embryo

selection. The doctors test each embryo for CMT before you are even pregnant.

I hear it is a successful process.

[Guest guest]

Thanks so much.

[Guest guest]

Well I was told the prevalance is higher mother to son

and father to daughter but both are high risk. My

mother had it and I have a daughter who I think has it

but like I said in earlier posts I won't get her

tested. I was diagnosed at 5 and despite not doing

all the things a normal kid wants I still made lots of

friends and did most of the things I wanted.

I am the only one who notices problems with my

daughter. She walks up the steps holding on and one

step at a time. She falls a lot and is overall

clumsy. She is in karate, cheerleading and softball

so she is compensating someway. I think the only

reason I would want her tested is so people wouldn't

accuse her of being lazy or attention seeking like

people accused me of when I was young.

The question whether you should have kids is a

personal one. I think if two parents both are

extremely enthusiastic about having kids it can work.

I don't want my daughter to suffer and I hope I am

just wrong about her having CMT but if she does she

will be stronger like I was and still am.

Andy

[Guest guest]

Hi ,

I am definitely no expert so this is just a thought. I wonder if there is a way

to do it in vitro where they could remove the CMT gene first? Possibly a

genetic counselor would be able to help.

Carmella

[Guest guest]

I have CMT and I passed it on to my daughter and my son. In my family I am

the first " lucky " one to have it too. I have a 2 1/2 yr old grandson who

thankfully shows no signs as yet.

Barb

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[Guest guest]

Alot of people are talking about this here it seems. To get tested early early

on during the pregnancy. So then another question comes up, if it's positive

for CMT would you abort or have the child. If you would continue to have the

child then there is no reason to test.

Ron

[Guest guest]

I have pretty much buried my head in the sand when thinking about CMT and my

son. He is 18 years old.

My question and concern is: he has no knee reflexes.

I do remember when we took him to a neurologist regarding facial tics, he seemed

to have difficulty getting a reflex in his knee, but did not mention anything to

us, though we picked up on his concern.

My son't friends joke around trying to get a reflex and they think it is funny.

does not discuss this with me, but will talk to his father about it.

Could this be a sign of what is to come? I just emailed his pediatrician to see

if he has any notes documented regarding this. At this point, I do not want to

take him to a doctor as this is the only sign and he has so many other problems

this last year, that I do not want to add onto this.

Needless to say, I am distraught as there is no other family history and I was

hoping maybe it would begin and end with me. They still do not know exactly what

type of CMT I have and have had 2 separate genetic tests. I don't care about me

because I have had the mental resolve to deal with whatever life throws at me,

but I am afraid my son does not have this same resolve (at this juncture) and I

know I should not feel guilty about this, but I do.

Thanks for letting me vent!

Jackie

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[Guest guest]

Hi Jackie,

I am sorry your son is going through so much. My son is 14 and has CMT 1 (still

waiting for the results as to the subtype). He has not had knee reflexes for a

few years. Our family Dr used to joke about it and said it was nothing to worry

about. When I took him to a neurologist and told him what the family Dr. said

he was very upset. I found it helpful to know if Ethan had it. It helped

explain alot of problems he has has, I wish we knew sooner maybe then everyone

would not have pushed him to play a sport etc. It also helped with getting

modifications at school. There is no way they would just take my word that he

can't write and needs a laptop or that he needs someone to take math notes etc.

Even though Ethan has so many problems I know the world is a better place

because he is in it.

[Guest guest]

Hi Jackie,

My son is 17, diagonosed with CMT in Dec 06 and he has never had any reflexes

anywhere on his body. No Doc ever seem concerned about it, just got the usual

huh, how 'bout that. My sister also found out she has CMT and she doesn't have

any reflexes either.

After reading Gretchen's post about her not having them and then getting them

back, I find that really hopeful and look forward to passing that info on to my

son.

Did you have your genetic testing done through Athena?

Carmella

[Guest guest]

Hi Jackie...

A complete lack of knee reflexes was one of the first things that clued our

neurologist into the likelihood of CMT for Gavin. That along with gait, foot

changes and lack of balance on stairs.

Don't feel guilty. Any of us can have passed on genetic predispositions to a

whole host of things, cancers, diabetes etc, and even then new mutations happen

out of the blue, as it did for our son. If your son has it, he has likely been

adapting anyway, I'm sure with a strong and experienced Mum like you he'll adapt

also.

Take care

Sally

[Guest guest]

I think the choice to have children when CMT is a factor is a very

personal one. My husband has had it as severely as most will ever have it and

he wasn't treated until he was in his teens.

Even with CMT though he has made alot of his life, more than most without a

disease, and has stayed active.

When we decided to have kids we realized that life throws different challenges

at you in all sorts of ways and there is no way to guarantee a pain free life.

It is extremely emotional to think of our daughters having his disease, but

realize that it is not going to ruin their life and life is what you make of it.

His brother who is CMT free had a child with a life threatening illness called

Hirschsprungs. It has been extremely hard and has reminded us that challenges

can come to anyone not just those with funky genes.

Amelia

[Guest guest]

Yes, i had genetic testing twice through Athena and both times it came back

negative. First test was about 4 years ago and last test was last summer. The

last test was ordered through NIH and they requested a couple of different

panels to check different forms of CMT plus SMA. They do believe that from my

EMG and my muscle biopsy (20 years ago) that it is still pointing to some form

of CMT.

Jackie

[Guest guest]

i did get him an appointment with a neurologist in March, so will start the

process.

I just feel bad for him because he has struggled with typical teenage problems,

friends, making better choices of who to hang out with and today he has decided

to drop out of college due to learning difficulties. He is looking to pursue a

trade, possible an electrician. I am concerned because if he does come down with

CMT, i have a severe form of it and i want to make sure he makes a good career

choice.

He also has had 2 shoulder surgeries and needs another one due to constant

dislocating his shoulder. Of course, with dropping out of school, now i am going

to have to look for health insurance for him after he turns 19.

He does feel like he is ready to know whether he might have CMT and is taking a

mature stance in that he said if he does have it he will at least know what to

look out for and maybe not take as many physical risks to prevent any breaking

of bones. I told him 1 step at a time and we are probably just jumping the gun

here.

Jackie

[Guest guest]

Thanks for your kind words Sally. yesterday I was freaked out, layed in bed

crying for 2 hours and today I am back to myself of taking control and not

letting it beat me down and certainly staying very upbeat for my son. I have

always lived in 'don't worry about that that has not happened yet', but I think

it is time for me to take my head out of the sand. I did make him an appointment

with my neurologist, so he will know what to look for and take it from there. I

hope if he inherited the CMT that he also had inherited the ability to stay

strong and positive like everyone else in this group!!!!

Jackie

[Guest guest]

,

Did Ethan's doctor know about CMT in your family, or was it not discovered yet

prior to his diagnosis? My son's pediatrican has known about me having CMT

sinceI was pregnant with him, so I hope that he was looking closely for signs. I

guess I am grasping at straws hoping against hope that he does not have it, but

since I have lived with it for over 20 years, we will persevere and not let it

stop our plans with life.

Jackie

[Guest guest]

Hello ,

I have read the number of posts concerning this matter and I wanted to give

another opinion, although it will obviously not popular. My father has CMT. 3 of

my brothers and 1 of my sisters has CMT and so do I. That's 5 out of 7. My

sister has 3 boys, all have CMT. My brothers birthson has it. My other brother

has 2 kids, both have it. Now my nephews kids have it.

My niece has the worst case of CMT that I have ever seen. She has not walked

since she was around 4. She has severe breathing problems and scoliosis. she is

constantly in pain and in and out of the hospital constantly. I love her to

death and admire every inch of her strength and kindness, but I do not like to

see her suffer so much.

Until now, I thought that CMT really wasn't that bad, after all other than the

constant feeling of insecurity during my high school years which later turned

into bad substance abuse problems, I was able to live a halfway decent life.

Eventually I found a solution to my drug & alcohol problems, went to school and

have a halfway decent career.

I have learned though, that the problem with CMT is that it is unpredictable.

Some in this group my have a very mild case and are able to do things like run

on the beach. Others I have seen have to take pain medication constantly. But,

once in a while a very severe case, like Sara's, comes along.....that is the

hard facts. You cannot pre-determine how a child with CMT is going to develop

based upon yours or anyone elses experience.

I know that most of the people reading this are probably outraged and for that I

appologize, but I felt that there shouild be another opinion in this matter.

I personally do not have children not only because of the CMT but because my

wife has 2 children of a previous marriage and she isn't jumping up and down to

have anymore (win win).

I stated earlier that one of my brothers has a birthson that has CMT. He also

has an adopted son that doesn't (the adopted one is the elder). Have you

considered adoption? There are many children already in this world that are just

waiting for a chance at a good life.

[Guest guest]

Jackie,

I have no reflexes in my arms or legs. I know that when I was

diagnosed when I was 18 yrs. old that I had no reflexes. Not sure

how long I had been this way as never went to the Dr. but maybe a

couple times as a child. The only thing that would have been nice

about knowing about the CMT when I was in school was that I

would've had an explanation of why I walked the way I did. I

received a lot of ridicule from other students and even coaches

because of this.

If I would have known, I could've educated them.

Whether it would've done any good, because some people are just

mean. Also, it's not fun feeling like a guinee pig.

A couple of yrs. ago when I was in the hospital, my Dr. sent a med student in to

look at my legs, etc. and do the reflex thing. I know they have to learn

somehow, but it was uncomfortable feeling like a specimen.

It is frustrating worrying about your child inheriting the disease.

I have type 1A as do all my 3 siblings, however no other family

member shows signs. I have 2 children (almost 2 & 8 yrs. old), so

far neither show signs. It's hard not to worry about your kids

inheriting it. Everytime Cade falls down or Cassidy complains of

her " legs burning up " , I can't help but wonder. But worry doesn't

make matters any better. Prayer works wonders!

Holly

[Guest guest]

The test I was talking about was the pre-implantation test. A pregnancy would

come after the genetic test.

[Guest guest]

Wow Jackie you are doing great. I cried for at least two years.

[Guest guest]

Still do....and I'm 65!....Geri

Wow Jackie you are doing great. I cried for at least two years.

[Guest guest]

well, I am only at the beginning and since it is not confirmed, I choose to look

at the glass half full; not sure how I will really if we get a confirmed

diagnosis. Right now I am just so overwhelmed with his other " choices " in life,

so TODAY, CMT is not the worst!

Jackie

[Guest guest]

Jackie,

I have that going on with Spencer. He usually picks wrong instead of right when

it comes to a choice. Everyone tells me he will out grow this. I hope for his

sake he does.