Re: Pregnancy at age 42

July 8, 2010

Hi Billie,

I do not know much about the type of cmt that your daughter has but wanted

to offer you some words of encouragement.

Many Mom's with CMT feel that their symptoms get better with pregnancy.

After the baby comes I often hear complaints of carpol (sp) tunnel symptoms

(from all of the lifting and hands on with the baby) but after several weeks

that also gets better. Of course you will worry about your daughter but

this must be worth it to her to go through all of the IVF etc... Just be a

good support system for her and hope for the best.

In a message dated 7/8/2010 10:28:55 A.M. Pacific Daylight Time,

k9qt@... writes:

I lost a lot of muscle strength. In fact, I never knew I had a problem,

except weak ankles until that point. She refuses to listen to my concerns.

I'm hoping that you will be able to shed some light on this subject for me. I

don't know of anyone else locally who has CMT especially early onset CMT.

My neurologist is no help. I am his only female CMT patient.

July 9, 2010

Hi Billie.

I also have early onset CMT1A and I gave birth to our son at the age of 28. I

experienced no exasperation of my CMT. I should note that my pregnancy did not

go to term - I had our son at 31 weeks. (I had a placental

abruption...COMPLETLY unrelated to my CMT. Just a freak occurance).

For the record, my Mom was worried about me the whole time too...

Good luck to you and your daughter.

-

July 9, 2010

I know of at least one woman who said her CMT leg symptoms got worse after

giving birth. My own experience with surgery is that nerve blocks make the

neuropathy worse, my nerves don't recover, so I would be very wary of an

epidural. O

Re: Pregnancy at age 42

Hi Billie,

I do not know much about the type of cmt that your daughter has but wanted

to offer you some words of encouragement.

Many Mom's with CMT feel that their symptoms get better with pregnancy.

After the baby comes I often hear complaints of carpol (sp) tunnel symptoms

(from all of the lifting and hands on with the baby) but after several weeks

that also gets better. Of course you will worry about your daughter but

this must be worth it to her to go through all of the IVF etc... Just be a

good support system for her and hope for the best.

In a message dated 7/8/2010 10:28:55 A.M. Pacific Daylight Time,

k9qt@... <mailto:k9qt%40live.com> writes:

I lost a lot of muscle strength. In fact, I never knew I had a problem,

except weak ankles until that point. She refuses to listen to my concerns.

I'm hoping that you will be able to shed some light on this subject for me.

I

don't know of anyone else locally who has CMT especially early onset CMT.

My neurologist is no help. I am his only female CMT patient.

July 10, 2010

Billie,

My own mother (no CMT) had me when she was 43 (gasp!) in the 1950s. That was

pretty unheard of. And a C section too. After coming home, she had a nurse, my

grandmother and father to help out. I'm sure your daughter will have help after

the birth there as well. Your daughter sounds knowledgeable enough about CMT to

know what she's doing. Is she in touch with CMT UK for their info?

Women of all ages have been having babies (CMT or no CMT) for millions of years.

Actress Jane Seymour (Not CMT) had twins in her 50s. I applaud your daughter's

efforts to go through pre-implantation genetic diagnosis.

Has your daughter been exercising prior to the pregnancy and during it? Like

Yoga, Tai Chi or Pilates? This can help strengthen inner core muscles that may

get overextended. Does your daughter wear AFOs to help from falling, does her

doctor understand about her mitral valve, has she talked to her doctor about the

Medical Alert list and given him/her a copy and talked to an anethesiologist?

Read through some of the articles here

http://www.lindacrabtree.com/cmtnews/pregnancy/pregnancysubtitles.html

Then start knitting a beautiful soft sweater for the Non-CMT new baby. What a

blessing, a child without CMT. If PGD was around during my childbearing years,

and my subtype known, I would have done it too. Not enough information was

available then and I was too afraid of passing CMT on, my choice was no

children. No regrets, we are all different.

Do you know about the CMT Support Groups in your state?

Gretchen

July 11, 2010

Hi Billie, I'm I am from Illinois as well. I am 23 years old and I have

CMT1A I also had very early onset I was delayed on most of my milestones as

well. When I was 20 I gave birth to my son, my whole pregnancy was high risk as

a precaution because of the CMT, I had many complications when I was about 6

months pregnant my doctor was doing one of my weekly ultrasounds and found my

son's umbilical chord had a vein varix which is a cyst in the chord that blocks

the bloodflow to the baby, they decided to induce me early, they were going to

do an amniocyntesis to check if his lungs here developed, but then after doing

another ultrasound found he had intrauterine growth retardation, which is when

the baby stops growing, at this point I was 35 weeks pregnant and the baby was

only showing 31 weeks gestation, so they skipped the amnio and induced me 3 days

later because they thought I was going to lose him. The labor went fine, but

Hunter was born with Torticollis and needed a lot of therapy, he also has CMT.

On top of the pregnancy complication, I went through a major exacerbation during

it, a couple months after I had him I filed for disability, CMT for some woman

can cause a lot more physical problems, has your daughter ever considered a

surregote? Has she seen a fertility docotor yet because I wouldn't be suprised

if the doctor tries and talk to her about how risky it is.

>

> Hi,

>

> I am very concerned about my daughter. She lives in England and is planning

to become pregnant with her first child at age 42. She is slight of build and

has had CMT since infancy....not sitting up until 18 months, rolling over at 13

months and walking at 2 years. Her fingers bend backwards, and she falls

frequently. They are planning invitro fertilization, by having the embryos

screened for CMT beforehand. She also has a mitral valve that bows the opposite

direction.

>

> I've read that those whose CMT manifests at an early age tend to have more

problems wtih pregnancy. I'm concerned that she may lose what little strength

she has left and not be able to take care of a child and herself while her new

husband travels with his business. I know that after my pregnancy wtih her, I

lost a lot of muscle strength. In fact, I never knew I had a problem, except

weak ankles until that point. She refuses to listen to my concerns. I'm hoping

that you will be able to shed some light on this subject for me. I don't know

of anyone else locally who has CMT especially early onset CMT. My neurologist

is no help. I am his only female CMT patient.

>

> Thanks for your help

> Billie in Illinois CMT 1A

>

July 16, 2010

I've read somewhere (can't find the source) that nerve blocks for CMT patients

are best avoided. I'm sure you can google it and find references.

Paralitics during surgery are also best kept to a minimum ... and especially in

foot/leg operations we probably don't need as much as other people.

>

> I know of at least one woman who said her CMT leg symptoms got worse after

> giving birth. My own experience with surgery is that nerve blocks make the

> neuropathy worse, my nerves don't recover, so I would be very wary of an

> epidural. O

>

> Re: Pregnancy at age 42

>

> Hi Billie,

> I do not know much about the type of cmt that your daughter has but wanted

> to offer you some words of encouragement.

> Many Mom's with CMT feel that their symptoms get better with pregnancy.

> After the baby comes I often hear complaints of carpol (sp) tunnel symptoms

> (from all of the lifting and hands on with the baby) but after several weeks

>

> that also gets better. Of course you will worry about your daughter but

> this must be worth it to her to go through all of the IVF etc... Just be a

> good support system for her and hope for the best.

>

> In a message dated 7/8/2010 10:28:55 A.M. Pacific Daylight Time,

> k9qt@... <mailto:k9qt%40live.com> writes:

>

> I lost a lot of muscle strength. In fact, I never knew I had a problem,

> except weak ankles until that point. She refuses to listen to my concerns.

> I'm hoping that you will be able to shed some light on this subject for me.

> I

> don't know of anyone else locally who has CMT especially early onset CMT.

> My neurologist is no help. I am his only female CMT patient.

>

July 20, 2010

Hi Billie,

I have had CMT since birth too, and with similar symptoms as your daughter,

though my fingers are a bit stronger, I guess. I became pregnant when I was 31

(naturally) and gave birth to a son. I had doubts too, about pregnancy and

taking care of a baby, but I am very happy that I went for it, because my son is

the best thing in my life.

Pregnancy was easy, no problems until week 28. I had two walking sticks for

additional balance support, although I normally don't use any aids. (Now I wear

braces, but don't need anything else.) During the 28. week I was given some very

strong iron supplement pills, and I felt ill. After 5 days on the pills (I think

I should have stopped takng them before,but I trusted the doctor saying they

were necessary) my water broke. I spent 5 days in hospital, but baby wanted to

come out, so I had a premature baby. Giving birth was very easy, I didn't have

time for any pain releif, and he was out quickly. Only problem was they had put

me in a lye-down position, but it is easier to give birth sitting or standing

up. My partner held me upright and that way it was very easy. At that time it

felt bad of course to have a premature baby, everybody wants a child born after

40 weeks, and not a tiny 28 week baby, but there was nothing wrong with him, and

he just needed to grow. I spent 8 weeks in the hospital wit him, which was

actually great, since I learned to take care of him properly. I breastfed him,

changed his nappies, dressed him and there was holding time, when mothers and

fathers could hold their babies for hours. Nice and low stress! After 8 weeks I

had my tricks ready. I knew that I could not stand up from a low chair holding

my baby, so I had his pram beside me all the time indoors, putting baby in it

first, then standing up. I did not carry baby around, but pushed him in his

pram, indoors too. I knew which clothes I could put on (zippers or velcro is

best) and which not to buy (buttons!!!). I had feeding time every third hour, he

was used to that (very comfy!). So when I went home it was no problem. I had

requested an assistant, which is free for disabled people in Sweden, but after 2

weeks I realized I didn't need her, we just used to chat and she did not do

anything really, so after that I took care of my son together with his father,

who was working but of course at home evenings and weekends. I have had a lot of

help from my mother too, whom we see almost every day, she lives nearby. There

were some problems, like giving baby a bath (his father did that). When he got

older, I could not run after him and catch him from getting into trouble (like

running out onto the street), so there was only the possibility of teaching him

to listen, obey and avoiding dangerous sitiuations. Kids are much better at this

than we think. He has never run away from me, but if his father was around too,

he could run away, because he knew his father could run after.

Now he is a 7 year old school boy, and he is a very sweet child. No problems

with him whatsoever. He is now a great little helper, runs down to the grocery

shop, helps me carry things and he is still very good at seeing when I need help

and what to do.

I think I got weaker after pregnancy, but I don't know if it is because of the

pregnancy or if I would got weaker anyway, since CMT is a progressive disease. I

have now diffculties with stairs, though I could manage stairs more easily

before. After having a baby, there are those years with prams and buggies to

push, which is great for balance. So I did not see how hard it was to walk until

my son was 5 years old and his buggy was not needed anymore. But then I got my

braces, and I am able to walk quite well again.

I think IVF could be stressful for your daughter, but I would not advice against

having a child. Even with CMT, it is manageable. We find our own way to do

things. Maybe we get weaker, but we also get a child, which is a great gift and

which makes the weakness bearable. I would advice your daughter to have help

around the house with the baby until she knows exactly how to cope with

everything. Also, she needs balance support during pregnancy, canes, a walker or

a wheelchair. You can't fall during pregnancy, so that must be avoided. I don't

know if it is more common to have premature children with CMT, but having a

premature child is only a problem during the first weeks or if the child is

unhealthy.

Beata