Re: inheriting - children

[Guest guest]

<< http://www.ultranet.com/~smith/files/Dyck.discusses.CMT.txt >>

Interesting article. There certainly has been a lot learned about CMT in the

ensuing 11 years. For example, the following segment:

<< Remember that in dominantly inherited HMSN-la and -b and also in HMSN-11,

although the probability is that 50% of offspring of a person with the

disorder will be affected, a lesser percentage will have the severity of

involvement that the parent has. On average the affected children are going

to be less affected than the affected parent. That's good news. >>

The correct % is 50% chance for EACH pregnancy, not 50% OF offspring, for

most types. Some families have a 100% hit rate, some have 0%, and the rest

are in between. Each child has the same 50/50 chance. This is very confusing

for some CMTers.

Of the hundreds of people I've spoken with in the past 4 years, almost all of

them have children who, if they inherited at all, are affected earlier and

more than the CMT parent, NOT less. When they compare how they were at their

child's age they report their child is more affected for the same age. Often

the CMT grandparent didn't have significant symptoms until rather late in

life, if at all.

None are sorry they have their children, and they love them dearly, but some

moms suffer greatly from guilt, believing they have inflicted this " terrible

thing " on their children. Some children go through periods of anger about it,

especially in the teen years, but they would be angry anyway. CMT is just

something they can focus on. After the teen years, many CMTers find their

place in the world and live a reasonably good life, as the article says. Most

kids are pretty adaptable and learn what they CAN do and how to work around

their limitations. I do worry about the ones who have weak hands when they

aren't even in grade school yet, or are in school. Legs we can support and

brace. Hands are different. Fortunately for todays children, computers are

being developed that are more and more helpful - voice activated software and

such. I hate to think of what life would be for a child with physical

limitations in an underdeveloped country, but perhaps they would fare well. I

don't know.

There are many worse afflictions a person can have. I find most CMTers to be

loving, compassionate, thoughtful, and intelligent. Some marry and some

don't; some have children and some don't; the same as in the general

population.

We are always learning, too.

Kat in Seattle

[Guest guest]

KathleenLS@... wrote:

<< http://www.ultranet.com/~smith/files/Dyck.discusses.CMT.txt >>

Interesting article. There certainly has been a lot learned about CMT in the

ensuing 11 years. For example, the following segment:

<< Remember that in dominantly inherited HMSN-la and -b and also in HMSN-11,

although the probability is that 50% of offspring of a person with the

disorder will be affected, a lesser percentage will have the severity of

involvement that the parent has. On average the affected children are going

to be less affected than the affected parent. That's good news. >>

The correct % is 50% chance for EACH pregnancy, not 50% OF offspring, for

most types. Some families have a 100% hit rate, some have 0%, and the rest

are in between. Each child has the same 50/50 chance. This is very confusing

for some CMTers.

Of the hundreds of people I've spoken with in the past 4 years, almost all of

them have children who, if they inherited at all, are affected earlier and

more than the CMT parent, NOT less. When they compare how they were at their

child's age they report their child is more affected for the same age. Often

the CMT grandparent didn't have significant symptoms until rather late in

life, if at all.

None are sorry they have their children, and they love them dearly, but some

moms suffer greatly from guilt, believing they have inflicted this " terrible

thing " on their children. Some children go through periods of anger about it,

especially in the teen years, but they would be angry anyway. CMT is just

something they can focus on. After the teen years, many CMTers find their

place in the world and live a reasonably good life, as the article says. Most

kids are pretty adaptable and learn what they CAN do and how to work around

their limitations. I do worry about the ones who have weak hands when they

aren't even in grade school yet, or are in school. Legs we can support and

brace. Hands are different. Fortunately for todays children, computers are

being developed that are more and more helpful - voice activated software and

such. I hate to think of what life would be for a child with physical

limitations in an underdeveloped country, but perhaps they would fare well. I

don't know.

There are many worse afflictions a person can have. I find most CMTers to be

loving, compassionate, thoughtful, and intelligent. Some marry and some

don't; some have children and some don't; the same as in the general

population.

We are always learning, too.

Kat in Seattle

---------------------------------

---------------------------------

[Guest guest]

KathleenLS@... wrote:

<< http://www.ultranet.com/~smith/files/Dyck.discusses.CMT.txt >>

Interesting article. There certainly has been a lot learned about CMT in the

ensuing 11 years. For example, the following segment:

<< Remember that in dominantly inherited HMSN-la and -b and also in HMSN-11,

although the probability is that 50% of offspring of a person with the

disorder will be affected, a lesser percentage will have the severity of

involvement that the parent has. On average the affected children are going

to be less affected than the affected parent. That's good news. >>

The correct % is 50% chance for EACH pregnancy, not 50% OF offspring, for

most types. Some families have a 100% hit rate, some have 0%, and the rest

are in between. Each child has the same 50/50 chance. This is very confusing

for some CMTers.

Of the hundreds of people I've spoken with in the past 4 years, almost all of

them have children who, if they inherited at all, are affected earlier and

more than the CMT parent, NOT less. When they compare how they were at their

child's age they report their child is more affected for the same age. Often

the CMT grandparent didn't have significant symptoms until rather late in

life, if at all.

None are sorry they have their children, and they love them dearly, but some

moms suffer greatly from guilt, believing they have inflicted this " terrible

thing " on their children. Some children go through periods of anger about it,

especially in the teen years, but they would be angry anyway. CMT is just

something they can focus on. After the teen years, many CMTers find their

place in the world and live a reasonably good life, as the article says. Most

kids are pretty adaptable and learn what they CAN do and how to work around

their limitations. I do worry about the ones who have weak hands when they

aren't even in grade school yet, or are in school. Legs we can support and

brace. Hands are different. Fortunately for todays children, computers are

being developed that are more and more helpful - voice activated software and

such. I hate to think of what life would be for a child with physical

limitations in an underdeveloped country, but perhaps they would fare well. I

don't know.

There are many worse afflictions a person can have. I find most CMTers to be

loving, compassionate, thoughtful, and intelligent. Some marry and some

don't; some have children and some don't; the same as in the general

population.

We are always learning, too.

Kat in Seattle

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