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First time user- I am pregnant

WDdiag04
  • By WDdiag04
  • Posted January 15, 2009 at 12:09 pm · 31 replies
  • In Pregnancy
  • Shared with the public
0 Recommendations

Hi all,

I am 22 years old, I was diag with WD in 2004 in high school. Was on penicillimine until recently when i found out i was pregnant and I started zinc.

I am in the early states. Two years ago my father had a liver transplant, they didn't say from WD though. I have no extreme symptoms, most symptoms were caused by the medication (e.g. sore muscles, sleepiness, minor pain).

Now i am pregnant and being monitored by both liver specialist and obgyn. No morning sickness or other major symptoms of pregnancy. I am at 17 weeks! I am expecting to have a regular pregnancy but would like to hear and comments or suggestions from others who have gone through a pregnancy.

Thanks in advance for your help. i have been looking for a group like this for years, glad to have found it now =D.

Liz

Explore topics in this discussion:

Eclampsia Childbirth Cholestasis Zinc acetate Pregnancy Anxiety Pain Cirrhosis High risk pregnancy Liver transplant Penicillamine Stress

31 replies

-Melissa-

Hi Liz,

Welcome! Glad you found this site!!

I was diagnosed with WD 2 years ago (Jan '07). I have been on Galzin (zinc) alone since July '07. Before that I was on a chelator (not sure which one, since I was in a research protocol through the University of Michigan).

I am also pregnant and just a couple weeks ahead of you. So far, so good with a normal pregnancy. Are you being seen more frequently for your pregnancy? I see a high-risk OB and have appointments every 2 weeks to monitor me and the baby. My WD doctor wanted me to see a high-risk OB. My 24 hr urine copper levels are also checked every 12 weeks during pregnancy.

I wish you the best of luck through the rest of your pregnancy!!

Melissa

WDdiag04

Thanks for you quick reply! congrats on the pregnancy!!

No mention of high risk OB for me(but my OB has experience with WD) but i am monitored. I just turned in my 24 hr urine sample this week. I have another one in 3 months...Regular visits to both doc's but still monitored.

I am in CA and not that research intensive as MI but I am still being monitored.

Thanks!

Liz

-Melissa-

WOW! I can't believe your OB has actually heard of WD!!! That's absolutely wonderful!!

Have your copper levels been good so far?

~Melissa

WDdiag04

I am testing either normal or a wee-bit above the normal levels already. So i guess I am on more of a maintenance.

- Ya the OB has had WD patients but none who were prego lol i'm his first. So wait, even your high risk Ob has not heard of WD?

-Melissa-

I guess I worded that wrong. A lot of doctors have "heard" of WD, but have never seen a real patient.

So my high-risk OB has heard of WD, but has never treated/seen a patient with it. There are more risks during pregnancy when you have liver issues too, so I think that is why they are wanting to monitor me closer. I was told that the chance of pre-term labor or getting pre-eclampsia, toxemia, etc...are higher by the mom having an underlying condition like liver disease, etc...

WDdiag04

Ya that totally make sense that the risks are higher. But my liver specialist told me to to continue as normal and just have routine blood work unless told otherwise.

Please let me know if you experience anything abnormal (message me) or if your doctor mentions anything that might also be relevant.

...i feel like with pregnancy (even with non disease women) it is easier for things to go wrong than not.

Thanks!!

McVeggie

wow no morning sickness... lucky you I terminated my pregnancy at 17 weeks. But the pregnancy symptons were on the dock weeks by weeks. Didn't miss one symptons at all. best of luck wishes you the best.

junebug23

Hi ladies. I am now 29 weeks pregnant and doing really well. I developed Cholestasis of Pregnancy due to the Wilson's - they diagnosed me at 17 weeks with insane itching - I got it earlier than usual so they're monitoring me closely. I have started getting weekly Non Stress Tests so they can monitor my baby really closely. No matter what they'll induce by 37 weeks as the risk of stillbirth goes way up after that but so far my LFTs are normal and my Liver Doc and High Risk OB are really happy.
Melissa - hope you and your baby are doing well. Liz - if it were me I would have a high risk OB no matter what. They are more familiar with complications that can arise with liver disease like cholestasis, pre-eclampsia and low birth weight. It wasn't even a question with my regular OB that I be transfered to a HR OB as soon as I found out I was pregnant and I'm glad I was. Cholestasis at such an early onset would most likely be untreated with a regular OB and passed off as regular itching of pregnancy.
Best of luck to you both with happy healthy pregnancies and babies. We have truly been blessed to be able to conceive at all, as most women with cirrhosis have a hard time.
Hilary

QueenofCopper

Hi all
Great to hear everyone is having babies with WD. I have one son, was a high risk pregnancy. My son is 15 and Free of WD Thank GOD!!! I had pre eclampsia and my liver levels were down when i was pregnant. but the good lord saw me threw it and here we are almost 16 years later. well best of luck to all you mommy"s to be, children are the gift that keeps on giving.
Denise

WDdiag04

thanks for your reply Junebug- i am at 24 weeks now, congrats on 29 so far!! i also had some itching in the beginning but realized it was because i wasn't moisturizing my body. now i am normal, thank the Lord. I went to a high risk obgyn the last two months and so far everything looks normal, re: Cholestasis and pre-eclampsia (when are those diagnosed anyway?)

this might be because i was treated earlier and my 24 hr liver samples show normal so far so it might not be affecting the baby. but thanks for the heads up i think i have been taking this for granted so far i need to be more careful,.

QueenofCopper- i think you are the first one i have seen who actually has a baby while with WD. Praise God for that. when was your pre-eclampsia discovered? when did they test him for WD?

-Melissa-

Hi Junebug and WDdiag04-

I'm 26 weeks (and some odd days) pregnant now. So far everything is going well (knock on wood!). I've been seeing a high risk OB for my entire pregnancy and they have been having me come in every 2 weeks. My liver enzymes seem to be pretty good. 24 hr urine copper just came back a little elevated, so now I worry about that, but will be getting in touch with my WD doctor this week to see if there should be any concern. My OB is also doing growth ultrasounds every 4 weeks, which started at 20 weeks. The extra monitoring really helps with my anxiety about the baby not growing properly due to the WD.

I'm also being monitored more closely for the development of pre-eclampsia, toxemia and anything else that having liver disease can aggrevate during pregnancy. I was told I won't be allowed to go past my due date and the chance of a pre-term birth is higher with me than someone without prior medical conditions.

Junebug--
Is the risk of stillbirth due to the cholestasis? Or liver disease in general?

Did either of you find out the gender of your baby? We're having a boy!!!

~Melissa

QueenofCopper

WDdiago4
My pre eclampsia was not till the last 2 months of pregnancy. i had my son tested from baby till 12 yrs old every year fathfully. I just had to be sure he was WD free and God answered my prayers on that one. All the best for you and your new baby.. It's a very happy time in life.

QueenofCopper

WDdiago4
My pre eclampsia was not till the last 2 months of pregnancy. i had my son tested from baby till 12 yrs old every year fathfully. I just had to be sure he was WD free and God answered my prayers on that one. All the best for you and your new baby.. It's a very happy time in life.

junebug23

Melissa,
congratulations on 26 weeks and no problems!! The stillbirth risk is from the cholestasis. My WD doc says the odds that I will go into labor pre-term are high and the cholestasis aggravates this too. Hopefully I will last 37 weeks!! I am having a girl, congratulations on your boy. Have you had your husband/partner tested for your same WD mutation? Mine will be tested next week to see if he's a carrier.
Hilary

-Melissa-

Hilary-
My husband was tested before we decided to have a baby. He isn't a carrier for the WD gene. He wouldn't have to have the same mutation as me in order for our son to have WD. I think that if he would have had a WD mutated gene that would be enough to put us at risk of having a child with WD. Thankfully we don't have that risk, unless our baby has a spontaneous mutation, which is even more rare (i think).

My doctor also says that my odds of pre-term labor are high...if thats the case, hopefully he won't be too early!

~Melissa

junebug23

Melissa -
I was told by my genetic counselor that my husband doesn't have to have the same mutation, just one mutation that he happens to pass on. I had previously thought the same as you, that he had to have the same one I had, but he corrected me. I am now a little confused. I think to be safe if he has any mutation at all I will have my baby tested at birth.
Hilary

junebug23

Melissa -
I was told by my genetic counselor that my husband doesn't have to have the same mutation, just one mutation that he happens to pass on. I had previously thought the same as you, that he had to have the same one I had, but he corrected me. I am now a little confused. I think to be safe if he has any mutation at all I will have my baby tested at birth.
Hilary

-Melissa-

Hilary~
I didnt think that he had to have the same one as me in order for our child to be affected. I knew that if he had ANY of the WD mutations in that gene that our child could potentially end up with WD. Sorry if I wasn't clear initially.
~Melissa

junebug23

Oh sorry Melissa - I read that wrong LOL. Isn't it comforting though to know that even if our babies got WD, all we would have to do is have them on zinc their whole lives and they would never have the liver or brain damage that we do? If my disease was scarier than that I think I wouldn't have had a baby.

Lenko

Hello,
I'm pregnant in 18 week with WD, monitored by WD doc, neurologist Doc, OB doc ...
Al is great for now, but need Zincteral, a Polish drug.
I'm from Bulgaria (Eastern Europe). I there anyone who could help me?

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