question re: cystinuria and pregnancy

[Trish]

nevermind

[Matt Lewis]

Trish,
Hey there...
i'm sorry your post didn't get more replies... i don't think there are many here who have dealt with that particular situation. :(
I hope you can find some information that is of help to you. If you do find something, please feel free to post it here; i'm sure we'd all love to learn something new!!
Kind Regards,
matt lewis

[SandraDee]

Hi Trish,

Did you ever figure anything out about cystinuria and pregnancy? We're thinking about having kids in the next year and all my urologist could say was, "Well, when you're ready, we'll deal with it then." I think he means that I'll be taken off Thiola and deal the with consequenses after the pregnancy.

I do have an appt with my OB/Gyn to discuss a low protein diet and a high pH diet to see if that would be harmful. We'll see. I assume drinking a ton of water will be uncomfortable but will help too.

Hope you've found some answers.
Do share of you have.

Thanks,

[Natasha]

My renal doctor has really helped me.
She advised me that my cystinuria could & would pass on to my children.And that thiola could cause them to be deformed.
And during my therapy session with her it was suggested that i think about adopting.


I hope everything works out for you.

[SandraDee]

WHOA! Is the father is a cystinuriac as well? Then yes, your child will most likely be one too.

BUT IF NOT, have to tell you that I know women who have cystinuria with children and their children do not have cystinuria. The odds are NIL if your partner doesn't have, nor is a carrier.

If you and your partner carry the gene, then the odds are worse. But I believe that the statistic is favorable. That's why cystinuria is a rare disease, not many people have it. My Urologist and 2 others have confirmed this for me.

You should not be on Thiola while pregnant, but do get a second and third opinion before you make any decisions about children. I'm going for it.

See: http://www.cystinuria.com/
Go to "Handbook", then to "What Are the Odds".

hope this helps.

[Trish]

Well, since we know that my left kidney is clear (had a perc a few months ago) and my right kidney (which was damaged, infected, and causing high blood pressure because it was so enlarged) was removed in April, I have been given the all clear to concieve by both my nephrologist and uroligist. I am healthier now with the one kidney than I was before. I think the key is to make sure you start off healthy with no pre-existing stones that need to be removed or anything first. As far as passing cystinuria along to our children- it is EXTREMELY unlikely. It's not even possible unless BOTH parents carry the gene, which is why those of us with the problem are so rare (anyone else feel like a lab rat soemtimes, they like to bring the med students in to study me:rolleyes: ) I already have one son (who I had before I even knew I had cystinuria) and he is fine!

[Trish]

yes- the drugs for cystinuria are very dangerous during pregnancy. My nephrologist does want to try starting me on one but decided there was plenty of time for that after having my children. As long as your stone formation is under control with fluid pushing and alkalinization- then there's nothing dangerous (just gonna mean even MORE time in the bathroom:rolleyes: )

[SandraDee]

Oh great. Do tell me what you'll be doing to keep alkanalized. We'll begin trying next year and there's so little info out there, as you know.

Best of luck.

[Trish]

wow- I just thought I'd pop back in here real quick before I log off tonight- anyway... I simply drink a gallon of liquid a day (at least 3/4 is water) and I take potassium citrate (poly citra K). I wish I could say I remember to take that as often as I'm supposed to, but I'm supposed to take it three days a week. I'm supposed to have a cat scan every 6 months to make sure it works, but since it took several years to develop the last big one I had without this regime I'm keeping my fingers crossed that this works. Of course- I only have one kidney now, so I have to make sure it works!!:D Hope it works out for you-- good luck!!

[SandraDee]

Me too! I also only have one kidney. Mine was taken out when I was 18, I'm 34 now.

I've been taking Thiola and its been slowing down the stones. I'm on an every two year schedule. This stone I'm growing now was actually a piece they missed from my last perc.

During pregnancy, I'll just have to keep up the water and try alkanization with Vit C and other natural methods.

Thanks for the info. Please do let me know your progress. We have a lot in common here.

All the best.

[Samantha]

Hello.... this is my first post but wanted to reply on this subject. I first found out I had cystinuria when I was 13 and there was VERY little information given to my parents. I have tried multiple medications and they all made me sick so I went on just extra liguid and the old soda barb. which I am still on.

We have had 3 children. I had my first daughter when I was 23, my next when I was 30 and my son at 35. They were most concerned about my last one bcause of my age but they were all born on time and perfect! I took NO drugs before, during or after for that fact. The soda and water doesn't prevent all stones but it works a lot better for me than taking drugs that make me throw up.

I did have to go in and have a stone removed when my son was 9 months old - I waited until I was done nursing - which I was aware of about my 7th month But, given the choices, I had my son and waited. Had it blocked, I would of course been forced to move sooner.

I just wanted to tell my story so you know it is possible. I feel very blessed and by the way, all three have been checked and not one of them has cystinuria :)

Good luck

Samantha

[SandraDee]

Thanks for telling me your experience. I'm having a stone removed in the Spring and if I'm still stone free by Fall we'll start trying ourselves.

I'll be seeing a Naturopath next month to see what can be done about adjusting my diet and what natural products I can take during pregnancy to help prevent stones. It never made sense to me to see a Urologist about a genenic disorder who product is kidney stones. There's nothing wrong with our kidneys really, that's just the result. Anyway, I'll post what I learn.

Thanks again,

Sandra