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Elenapap11

For Women With Children

pregnacy with dysautonomia  

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I was wondering how many of the ladies in the forum had a baby after being diagnosed with any type of dysautonomia.My doctor said that if i want to have a baby i should do it now that i am not under any medication.(i only take atrovent,aerius and medrol for sudden allergy attacks).My blood pressure and heart rate are generally good and don't need to receive medication but according to the doctors' opinion i should start Keppra at some point.They don't mind if i wait a year before i start as i don't have seizures and the only thing that indicates epilepsy is the abnormal EEG.(and my occassional migraines)

I would be very interested to hear your experience during pregnacy and if any children were affected in any way by the mother's condition.Any preconception tips are mostly welcome.

p.s.my family is not very keen on the idea of my having a baby.(they are afraid about my health)How did your environment and doctors feel about your decision to have a child?

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Everyone was supportive of me becoming pregnant. My doctor was fine with my decision not to take meds during the pregnancy, but I was not allowed to do much so that my heart rate would stay down. I had terrible morning sickness the entire time, which I have read can be associated with POTS, but not much info is really out there, or wasn't when I was researching anyway. I can't remember whether the maternal fetal dr or my EP wrote a letter to the hospital anesthesiologist describing exactly what type/dosage of anesthesia they should use should I end up needing a Caesarian, which came in handy because I had an emergency C-section 60 hours into labor. My son has had no problems and is healthy. He is three now. Immediately after birth my symptoms worsened, then got way better, and now are worse than they have ever been--a constant ebb and flow. Good luck!

(My only diagnosis is POTS.)

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Thank you for sharing your story Kay.I am sorry to hear that you are not well at the moment.I know the feeling of getting worse when you think that POTS might have forgotten about you.The thing about POTS is that when you are really sick you think it will never go away but somehow a day comes and you are better.I hope this day comes very soon again for you!

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oooh yes, I can relate to the constant nausea in pregnancy. i have managed to have two babies :-) both born early due to increasing difficulties during the last trimester. But both of my babies are healthy and happy children now. I am so thankful to have them in my life, they give me a reason to push myself when I feel like stopping... ultimately that is the most helpful thing in the world. My mummy-motivation keeps me going. All the best with the conception/pregnancy/early years. Never give up. Motherhood is the most valuable experience I have ever had.

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I voted but both my pregnancies were before POTs diagnosis or out of control flares. I believe I've had POTs for quite a while but pregnancy didn't make me worse or better. After delivery excessive fatigue but who isn't tired with a new baby. Now that I see how blood loss and hypovolemia affect me it makes more sense. Good luck.

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Thank you Girrafe&Relax86 for your wishes. :) Mothers with POTS are heroes and i really admire your strength.I wish you both the best for you and your babies.

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Both of my children were born before I was diagnosed. I think that you are ahead of the game with a diagnosis. If you want to have children I wouldn't let POTS stop you! You may have to let others help you when you need it, but my children are better people from living with a "sick" mom. They are compassionate, kind, helpful, not critical of others, and are learning to be more independent and lest selfish then some of their peers. Any mother can get sick at any time. At least you may have some idea of what to expect and be able to plan. Best wishes whatever you decide. Families deal with all sorts of problems, but can become better people as a result.

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I have had 5 pregnancies and 4 live births. I had a missed miscarriage with one baby at 14wks, due to an unknown cause. I didn't know I had POTS yet, but I sure did have the symptoms before(back to the teen yrs, but thought that was my 'normal'), and in the very early months of my last two pregnancies. I was SUPER lethargic, which I went to the ER for, and was told it was just how my body handled those particular pregnancies(my prior pregnancies were not like that). Later though, I felt great, all of my symptoms left, and life was good...until after the delivery, especially my last, this past Jan. The symptoms kicked in RIGHT after I had my son still in the hospital, and the almost fainting/dizzy spells made it to where I couldn't really get out of bed to walk to go to the nursery and got the Social worker called in for me, since my vitals were fine. :( My husband thought I was faking things, since I was great during pregnancy, but right after I was back to have a million "unrelated" symptoms, lol. Not a good feelind, that's for sure! I think the increase in blood flow that you get during pregnancy is what made me feel so wonderful.

Anyways, both of my son's came out healthy along with my middle daughter, but during my last pregnancy, I bled almost daily, the placenta was detatching from the wall. He came out fine though, and we made it full term. My oldest daughter also had Placenta Abruption and is Autistic. They all were full term babies, and are otherwise healthy and happy.

I was not on any medication with any of my pregnancies(except prenatal vitamims).

My kids also give me a great reason to want to keep pushing forward through all of this. Sometimes I do feel guilty that I can't be 'that' mom who is always on the go with them. A lot of this past summer we have been stuck inside because I can't take the heat, or I'm too dizzy to drive, or I'm just too weak. :(

My dad has been a huge help when I have really bad days/weeks/months, while my husband is at work. Accepting the help is tough, but sometimes it is much needed, and VERY appreciated!

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bled almost daily, the placenta was detatching from the wall. He came out fine though, and we made it full term. My oldest daughter also had Placenta Abruption and is Autistic.

I also had placetal abruption. It occured during labor at the hospital (my daughter was full term) so could be addressed immediately but even so it was quite severe and I needed blood transfusion. It was traumatic enough that, combined with severe POTS during pregnancy, I chose not to have any more children. I have wondered if there was any connection to POTS or something that might be the cause of my POTS but have not seen any information making this connection. My sister also had placental abruption with 2 of 3 pregnancies which caused her to lose one baby and put her in ICU 2X. She also has (mild) POTS.

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Elena,

My sister is epileptic although she has not had a seizure in 15 years (thank god) she is now 32 and has been on keppra for awhile now. She was previously on stronger medications like phenobarbitol and tegretol to control the epilepsy but switched to keppra because she wanted to conceive. I just wanted to let you know that she took it during the duration of her pregnancy and her son (now 1 year) has no problems and was born healthy. They did monitor his heart and other things during pregnancy just to make sure because she was on the drug. I know there isnt much research on that drug and it can affect different pregnancies in different ways but I thought you'd like to hear a positive scenario of how hers turned out.

As for me, I am currently 25 weeks pregnant and on no medication so I do not know how it will affect my baby but this pregnancy has been good so far. My doctor was encouraging about me getting pregnant and I just make sure I keep all my OB's up to date on dysautonomia because I do not know how I am going to react during delivery. My heart rate goes high but my bp is stable. I have sjogrens so they are monitoring the babys heart. I have felt pretty good during this second trimester and my GI symptoms have gotten remarkably better in pregnancy. Also, I think the prenatal vitamins make me feel better as well. I was nervous about getting pregnant as well but really wanted to start a family of my own and was feeling better in terms of where my illness is so I took the risk because I have lots of family around to help while my husband and I are still stationed here. I wish you the best of luck with your choices and decisions!

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Elena,

My sister is epileptic although she has not had a seizure in 15 years (thank god) she is now 32 and has been on keppra for awhile now. She was previously on stronger medications like phenobarbitol and tegretol to control the epilepsy but switched to keppra because she wanted to conceive. I just wanted to let you know that she took it during the duration of her pregnancy and her son (now 1 year) has no problems and was born healthy. They did monitor his heart and other things during pregnancy just to make sure because she was on the drug. I know there isnt much research on that drug and it can affect different pregnancies in different ways but I thought you'd like to hear a positive scenario of how hers turned out.

As for me, I am currently 25 weeks pregnant and on no medication so I do not know how it will affect my baby but this pregnancy has been good so far. My doctor was encouraging about me getting pregnant and I just make sure I keep all my OB's up to date on dysautonomia because I do not know how I am going to react during delivery. My heart rate goes high but my bp is stable. I have sjogrens so they are monitoring the babys heart. I have felt pretty good during this second trimester and my GI symptoms have gotten remarkably better in pregnancy. Also, I think the prenatal vitamins make me feel better as well. I was nervous about getting pregnant as well but really wanted to start a family of my own and was feeling better in terms of where my illness is so I took the risk because I have lots of family around to help while my husband and I are still stationed here. I wish you the best of luck with your choices and decisions!

Thank you for your reply Jackie..It's so encouraging to hear that your sister had a healthy child while taking KEPPRA.Congratulations on your pregnacy.I hope everything goes well for you and your baby. :)

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