Re: Pregnancy and complications

[Guest guest]

Mosiunia,

Wow you have been through a lot.

I felt great when I was pregnant. I still felt like I had CMT but pregnancy

seemd to help my center of balance. Towards the end of my pregnancy I was way

to heavy and didn't walk much. I have had five babies all carried full term,

some were even over due.

[Guest guest]

Monia-

Both my pregnancies were before I knew I had CMT 1a .I just

remember being very tired and my legs ached and my doctor explained it with the

added weight of the baby .When the cmt reared it's signs were when I was put on

my side to get my epidural people were chatting and seems I only got the test

dose of the drugs but laying on my side everything went numb as it should. they

wheeled me to the OR for my c -section only to discover I wasn't numb and they

used regional instead and was put quickly to sleep cause I experienced shock

being cut into and not entirely numb. I do remember being super shaky waking up

from it not to mention sick .A few yrs later I was tested and it was an aha

moment and I learned my son and I both had this disease.

One other thing and I'm not sure if this was CMT related but my labor

contractions on paper were off the scale I remember nurses cringing and me just

going what ? during active labor this numbness washed over me without drugs to

help but I eventually was wheeled in for a c -section but the nurses were like

omg did you see how long and how hard she was contracting? I really only felt

slight cramps .

Deb

[Guest guest]

Monia,

I had my children when I was 28yrs old and 31yrs old I had great pregnancies. 

2nd is always harder than first.  My legs hurt alot - I would swim - do kicks in

pool and that helped alot.

I don't recall who did this study but in general women do not report huge

progression of CMT in pregnancy.

[Guest guest]

Monia:

I have a disorder which is very similiar to CMT called Hereditary Spastic

Paraplegia. The only difference is what the source of the disease is which is

the central nervous system, where HSP comes from. I was pregnant last year and

before. For six months I dealt with horrible vomiting, I was able to walk with

crutches. After that I needed a wheelchair due to not being able to bear

weight. I continued needing a wheelchair after. I had physical therapy in the

home starting the 6th month through the 3rd month post pregnancy.

The PT kept me limber during the pregnancy and after the pregnancy I worked my

legs out to start walking again. Ever since then I have been taking my walks

for exercise purposes. I use my wheelchair to take care of son and also because

I still have pelvis pain from the pregnancy. I am seeing a Urologist this week

due to the pain because my orthopedic surgeon stated that the pain is not due to

the pelvic bone but my bladder.

Marin

Bridgeport, CT

[Guest guest]

, thank you  -- and congrats five that's great.. all the best to you and

your family !

Monia

[Guest guest]

:

I have CMT1. Had daughters born in '86,'88,'90, Miscarried twins '92 (9 weeks

into prenancy) and a son in '97. I'm 46 now. The first four pregnancies were

before I knew I has CMT. During the last prenancy--I can't say my CMT was any

worse. I had a lot of discomfort in my hips--mainly due to my son laying

" cradled " between them sideways for several months. I had an office position at

the time and had to sit for hours at work with little movement so numbness was

an issue. A lot of my aches and discomfort were simply from it being my fourth

full pregnancy and my age. As far as fatigue with pregnancy, we definitely tire

out quicker than mom's who don't have it. But everyone knows their own limits

and don't over due it.

I have two daughter's who have a few possible CMT signs but so far none of our

kids having any problems due to diagnosed CMT. Oldest daughter has a 2 year old

son also with no signs.

The main problems I have currently at this age as far as pain is numbness/pain

in hands arms at night (sleep with carpal tunnel braces to minimize it) and 3

hammer toes!

I know there are varied opinions on having children or not. You have to make

your own decisions regarding it. My husband and I just celebrated 25 years of

marriage this past weekend. The kid's through a " surprise " anniversary party

for us including renewing of our wedding vows. Children are such a blessing

from God--Personally I would not want it any other way. They bring such joy

each day!

Best Wishes

Crock

[Guest guest]

Wow, Monia, after that, you can handle a pregnancy standing on your head. I had

3, all full-term and healthy. I noticed an exageration of the effect of the

relaxin hormone (yes, that's a real hormone) that deploys in the last trimester.

It's function is to loosen the ligaments in the pelvis so that the baby can

travel the birth canal without too much trauma.

Unfortunately the relaxin hormone and the ligaments in the rest of the body also

interact. I discovered that it is the reason for the pregnancy " waddle " , I had

always assumed it was because of the enormous beach ball lodged in front, but

it's because all the ligaments are loose and you have to kind of sway to get the

forward momentum. I

t's also the reason most women report foot " growth " during pregnancy. During the

last trimester and for the first 6 weeks postpartum I felt like a big wet

noodle. My joints seemed to be held together with old, stretched out rubber

bands. When I went to lift my foot my thigh muscle would contract and instead of

my knee bending as it always had, my pelvis would be pulled down and I couldn't

lift my foot onto a step or curb. I found that it still worked to lift my foot

to the back by contracting the calf muscle so worked around all stairs and curbs

by going up them backwards.

After my last child was born I herniated a disc in my back, necessitating

immediate surgery (6 wks post partum). I blame that directly on the loose joints

from the relaxin. Having said all that, I'm not entirely sure that my response

was CMT related. My father's side is where the CMT comes from. My mother's side

has hypermobile joints - a whole family of people who can delight with

contortionist parlor tricks.

I am the result of a DNA collision and it's hard to sort one out from the other.

I did not have increased numbness (other than after the disc herniation). I did

have fatigue, but I don't know a mom who didn't. I spent at least 4 years

without one single night of uninterupted sleep. But the looseness gradually

faded and is now no worse than it ever was.

I know that it is somewhat controversial to contemplate children by parents with

known genetic diseases (in my defense, I was not diagnosed until about 2 years

ago when my youngest was 8). But I do not regret any of my 3 in any way. Even

though my two oldest are starting to have the same symptoms I did (my complaints

got the response, 'oh that's no big deal, everyone gets numb fingers from using

scissors' -- everyone in our family anyway).

Luckily, CMT does not shorten lifespan and generally can be worked around. My

children are delights, even when they're not and I wouldn't change a hair on

their heads.

Holli

[Guest guest]

:

Everyone is different in their exeriences with pregnancy if you have CMT or not.

A great book that I have and all others with disabilities should have is The

Disabled Woman's Guide to Pregnancy and Birth by Judith , who is disabled

herself. It shows all different disorders and how they can all effect pregnancy

in different woman. It also goes through all trimesters, child birth, dietary

needs, exercises, contacts, and more.

Marin

[Guest guest]

I had all three of my children before CMT symptoms appeared. My last was an

emergency C-section, and with him and my first, epidurals did NOT work!

[Guest guest]

I was thinking last night I should mention that I had wrist pain for about 6

weeks after I had the babies. I think it was from all the twisting that your

hands do when you take care of a baby. It was only bad for a few weeks but it

did bug me for at least 6 weeks. I took care of a baby last night and that same

wrist pain crept right back up.

[Guest guest]

I had a test dose also and it made my entire body numb. Even my eye lids

wouldn't open. I did fine on less than a test dose.

[Guest guest]

Hi Monia,

I have one child so far, and he is healthy. I think I have CMT 4, although they

don't feel it is necessary to confirm this with expensive tests here in Sweden.

I have had CMT since I was 2 years old. My pregnancy was fine, until my water

broke in week 28. I have no id

I have no idea why, but I was really big, and I had possibly to much water. I

felt strange during the last week, possibly because I had started on an iron

supplement. I would like to warn against this, it can be toxic, but pregnant

women are supposed to take it no matter what.

I had difficulties walking during the last month or so, and I used power walking

sticks (two!), but otherwise pregnancy was great! Giving birth to a small

child, 1,1 kg, was not very hard. Maybe my body knew this, and wanted him out

when he was small and easy to get out. He was out in an hour or so, and it was

no big deal.

The contractions were fine, painful but on purpose. I didn't have time to test

any painrelievers, although I had planned epidural... My son was small, but

healthy, and he stayed in hospital for 8 weeks, mainly beacuse he needed to

grow, there were no complications.

I needed a walker during the first 2 days after giving birth, but then I could

walk again without problems, just like before pregnancy. I left the hospital 5

days after giving birth, but only to sleep at home, during the days I stayed

with my son.

Now, my son is 5 years old and he has no problems. I didn't want any prenatal

tests, I think that what you get is what you get. Two perfectly

healthy indiviuals can get a sick child and the way around. If you have

dominant CMT, then you can expect your child to be affected too, if you have a

recessive CMT, you will probably have a child without it.

Good luck with your preganancy! With CMT you need to struggle more, but it is

worth it!

Beata    

[Guest guest]

Monia -

I am 34; I had symptoms starting as a baby and first surgery (achilles tendon

release) at 15 months. I wasn't properly diagnosed with CMT 1A til age 19.

I have a 4-year old son. My pregnancy with him was difficult; I had hyperemesis

(severe vomiting) - hospitalized in first trimester for dehydration. I had

preterm labor starting in the second trimester, bedrest started at 22 weeks. I

was on bedrest, in and out of the hospital several times, and delivered at 35

weeks (5 weeks early). Vaginal delivery, epidural worked fine. Recovery was

fine. He was healthy; genetic testing was done as an infant and he does not

have CMT. I did have 2 discs herniate in my lower back during the pregnancy,

but they healed on their own with PT afterwards. I don't know if the

difficulties I had were related to CMT or not.

I had a miscarriage after my son.

Then I got pregnant with twins. Also a rough pregnancy. Cramping/spotting took

me off work right from the beginning. Gestational diabetes at 18 weeks.

Preterm labor started at 21 weeks, landing me in the hospital. On bedrest,

multiple hospitalizations the rest of the pregnancy. SEVERE neuropathic pain

and aching in my legs - I had to take Percocet the last half of the pregnancy

just to cope with the pain. And terrible Restless Leg Syndrome. Also my hands

started going numb when I would talk on the phone, or when I was sleeping.

Delivered the girls at 34 weeks (in Dec 2007) vaginally; epidural worked fine.

Had terrible lower back and pelvic pain after delivery - for weeks, I could

hardly walk or even turn over in bed. One baby was born with a cleft lip and

palate and was significantly smaller than the other baby; she is now being

tested for CMT. She is 15 months and not walking yet. The other baby has had

normal development.

Since the twins' birth, I have had continued numbness and worsening of the

weakness in my hands. My thumb muscles are very wasted and I have a terrible

time with buttons, doing my girls' hair, opening food items, etc. My

neurologist thought maybe it was carpal tunnel syndrome, and did NCV, but the

results showed that the CMT damage was much more pervasive than any possible

CTS, and there was little chance of me benefitting from carpal tunnel surgery.

I have continued to have a lot of pain in my legs as well. And I'm tired, very

tired.

I do believe the last pregnancy caused a significant decline in my CMT. I did

not have the hand symptoms or nearly the pain in my legs that I do now, as I did

before that pregnancy. That said, I wouldn't change it for the world - my

kiddos are my life!!

Good luck to you!

[Guest guest]

,

You are very strong lady, all more power to you. Thank you very much for all the

information.  It helps a lot.  I wish you and your family all the best.

 

Monika