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
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First time user- I am pregnant
Explore topics in this discussion:
Eclampsia Childbirth Cholestasis Zinc acetate Pregnancy Anxiety Pain Cirrhosis High risk pregnancy Liver transplant Penicillamine Stress
31 replies
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- Newest first
- By christina_755
- Posted September 10, 2009 at 12:20 pm
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Hey Liz,
I was diagnosed with Wilsons Disease about 8 years ago and I am on my FOurth pregnancy. All have been natural deliveries, no drugs, and all my children so far have come out perfectly healthy. I took the Bradley Method natural childbirth class when I was pregnant with my first because I didnt want to take any drugs since all drugs process through the liver. I highly recommend that class. you can find it if you google Bradley Method. It teaches you what the medications do and which one s ar e good and bad and helps you try to give a naturally drug free birth. Hope this helps.
- By sshu
- Posted May 5, 2009 at 11:51 am
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Thank u very much Lenko n Liz for ur information.
Glad that everything is going good with both of u.
I will be Thankful to u Liz for asking the score for me.
- By WDdiag04
- Posted May 4, 2009 at 1:54 pm
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Hi Sshu,
Sorry i just saw your reply. Ya I took the last one is March and I will take another 24 hr urine in May (I am due end of June) I will ask about the score for you.
i am taking Zinc Acetate, just heard of sulphate from lenko. I am happy with it so far. message me for more details if interested =)
- By Lenko
- Posted May 4, 2009 at 4:19 am
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Hi Sshu,
I stopped penicillamine as soon as I find out - in 5th week, was with no therapy till 22nd week, started again penicillamine and Zinc sulfate now - in 23rd week.
Do Urine test , blood tests and as for now Docs said everything is OK.
- By sshu
- Posted April 29, 2009 at 9:54 am
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Thank u Liz and Congrats....
I want to ask u do u check regularly ur 24 urinary copper while ur pregency ,can u tell how much its reading if u dont mind.
And u take zinc sulphate or acetate.
Sshu
- By WDdiag04
- Posted April 28, 2009 at 9:15 pm
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sshu,
you should start zinc ASAP because penicillimine is considered level or category "X" meaning that it is known for sure to cause birth defects.
i started the day i found out i was pregnant, at 5 or 6 weeks into it already. i am at 31 weeks now and on zinc since then. I pray that i am not too late but so far so good.
Liz
- By sshu
- Posted April 28, 2009 at 4:42 pm
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Hi
i m 25 year old was on penicilamine for 4 years.
Planning for a baby, can anyone suggest me when i should start zinc during pregency or before.
pls need advice.
- By Lenko
- Posted April 9, 2009 at 8:36 am
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I saw baby's arms, legs, fingers - count them, heart beating, brain....
Such a beauty!
- By Lenko
- Posted April 7, 2009 at 5:07 am
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Sorry WDdiag04, for the bad news that I'm writing for.
I congratulate you for your pregnancy, as for me:
I'm in 19 week now, no morning sickness, no change of moods and if my belly was not being larger and larger I'll forget I'm pregnant! I started to feel a baby's moves in my belly :) it's like tickling!
I'm going to see my OB doctor tomorrow and shall write again ;) Which you joy!
- By Lenko
- Posted April 7, 2009 at 4:46 am
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Thanks WDdiag04!
I found the producers - Teva Poland but nobody answers my mails and calls. Anyway, Thanks God I'm working in international company and a colleague of mine from Poland will send Zincteral via courier!
But there are another bad news for all WD in Bulgaria!
Here the only drug for us is Cuprenil (D- Penicilamine), but due to expired license of the import company the drug is out of market! We buy the drug from pharmacies but there are any....
We are going to die...slowly and painfully...if there are no meds soon!
- By WDdiag04
- Posted April 3, 2009 at 12:13 pm
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Congrats on pregnancy, Lenko,
I have been searching online for you. I take Zinc Acetate but you are referring to Zinc Sulphate or Zincteral.
I found a polish website with phone numbers that you can try to contact. Not successful with anything else but this might be a good starting point for you.
http://www.espefa.com.pl/en/hurtownia_lekow_wlasnych/krotki_opis.html
Good luck !
- By Lenko
- Posted April 3, 2009 at 4:29 am
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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?
- By junebug23
- Posted March 28, 2009 at 8:14 pm
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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.
- By -Melissa-
- Posted March 28, 2009 at 2:24 pm
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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
- By junebug23
- Posted March 28, 2009 at 12:05 pm
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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
- By junebug23
- Posted March 28, 2009 at 12:05 pm
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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
- By -Melissa-
- Posted March 17, 2009 at 11:09 pm
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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
- By junebug23
- Posted March 17, 2009 at 7:56 pm
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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
- By QueenofCopper
- Posted March 10, 2009 at 11:49 am
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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.
- By QueenofCopper
- Posted March 10, 2009 at 11:49 am
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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.
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