Back to the PTC Community Morgana When you're pregnant, what are your biggest concerns? (Both without PTC and with PTC). Effective pain management was a big problem.  There aren't many painkillers you can take nor many treatment options for dealing with high pressure.  Also you do tend to feel a bit alienated from the rest of the world when you are pregnant, and it's worse when you add PTC to it.  I lucked out having people like Zelpha going through it at a similar time to compare stories with.   Depression is another concern because the alienation of going through something that traumatic alone gets a little overwhelming.  During my first pregnancy, I didn't have PTC, but the concerns were still there. If you have been pregnant with PTC, what treatments, if any, where you able to continue? (This applies to all meds - pain and meds such as Diamox, as well as LP's and shunts). I had to discontinue every medication.  Certain medications are unsafe for fetal development up to 20 weeks (I have a list somewhere I can forward.) Others have to be avoided due to neurological development concerns.  Also there is little pain medication to take beyond vicodin because a) they can't be taken due to blood related issues, or b) they are narcotics that can harm the fetus with prolonged usage.  LP's can be done safely, however you will not be allowed the luxury of fluoroscopy except in rare cases due to fetal damage from x-rays. What treatments needed to be modified? Most diuretics needed to be discontinued.  LP's cannot use fluoroscopy.  Sometimes the only treatment option available is repeated LP's.  (With my first PTC pregnancy I only needed 1 LP, with my second I needed 25 LP's.  But once hormones settle, you do tend to go into a "remission period".) If you have been pregnant with PTC, how would you rate the overall pregnancy, in terms of "ease" (if there is such a thing!). Please rate on a 1-10 scale, 1 being the easiest, 10 being very difficult. (Remember, in relation to PTC and associated symptoms/conditions). 6-9. I’ll be honest, it differs from pregnancy to pregnancy.  My first pregnancy with PTC was incredibly easy.  One LP and 8 months of enjoyment.  My 2nd pregnancy with PTC was a lot more painful, I spent most of the first two trimesters in bed with low pressure headaches.  But I did have four months of remission at the end where I could enjoy being pregnant.  Advice:  Find a good doctor who is willing to talk to you. Have you had children prior to PTC diagnosis? Yes.  I had one baby before ever getting diagnosed.  To be honest, the PTC acted more like severe morning sickness than anything else until you get the pressure headaches.  Once you learn to identify the difference between a pressure headache and morning sickness it actually is pretty simple to self diagnose when you are going to need PTC treatment. Were your PTC symptoms less noticeable, or were you more aware of them? I think I was more aware of them, because when you're pregnant you start to develop a second sense to your body.  You feel the baby kick, you feel the fatigue, you more easily notice a pressure headache. If you experienced an ease in symptoms during your pregnancy, did they develop again after giving birth? Yes, this isn't a disease we can get rid of overnight.  However, they are a LOT easier to deal with when you aren't pregnant. If you've answered the above questions (you were pregnant with PTC), how was the baby delivered? (Example, C-Section). Vaginal deliveries for both of them. How many people (this applies to everyone), were advised they couldn't or shouldn't get pregnant with PTC? When I was first diagnosed I asked the doctor right off the bat, "Does this mean I can't have more children?"  He said, "You can have kids as long as you're ovulating.  Don't you know where babies come from?"  In fact, I've never had a doctor yet tell me I couldn't or shouldn't get pregnant.  In fact, the baby I had on Monday was planned and all the doctors knew I was trying to conceive.  They changed my treatments accordingly. What was the reasoning for this advice? I was told that I can have the symptoms return.  I was told I could go blind.  But above all, I was told to make sure all the doctors worked together to monitor me.  That's what they were being paid for. Would you have another baby with PTC (without thought to cost or situation - would you do it again?) Alex is only two days old but definitely.  Having a large family has been a dream I've had to cling to during the dark days of having PTC.  I have 3 kids now, but I want to be able to follow my dream of a large family.  It's one of those things that give me hope. What advice and tips would you offer someone who becomes pregnant with PTC? Someone considering it? I'm going to quote Zelpha. "Everyone is different. Follow your heart".                                                                                                                           Back to the PTC Community