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Pregnant While On Xyrem...reporting In


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#1 cmcardle74

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Posted 27 July 2012 - 09:53 PM

I've posted about this in a couple of different threads and I thought it would be more helpful to encapsulate it all in a new one; I know there are a few folks on these forums interested in this topic.

My wife has narcolepsy and cataplexy. She takes Provigil and Xyrem (max dose). After researching and talking to doctors we decided to try for a baby. She went off Provigil for a month before we started trying; she stayed on the Xyrem. She got pregnant right away after her month of waiting.

There have been no discernible ill effects from staying on the Xyrem. She has to nap a few extra times during the day without the Provigil, but she drinks coffee, tea, or soft drinks to take the edge off (our moms didn't give up caffeine and we turned out okay!). Every trip to the doctor has resulted in excellent tests; the pregnancy is textbook. Our son (!) is healthy as far as the doctor can tell, and all tests keep coming back normal. A couple of weeks ago he started moving discernibly and now regularly kicks and shifts as expected.

Of note for those with cataplexy: her cataplexy HAS gotten a bit worse. Her triggers bring it on a little bit more readily, but it isn't debilitating. For safety's sake she only drives locally and only after she's fresh from a nap; I drive the rest of the time.

We're in the sixth month now and are due around Thanksgiving. She'll be having a C-section because no one wants to mess around with natural childbirth and cataplexy. If all goes as planned I'll probably update this thread once he's born so that I can share the results!

#2 xyrem2011

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Posted 29 July 2012 - 07:37 PM

I've posted about this in a couple of different threads and I thought it would be more helpful to encapsulate it all in a new one; I know there are a few folks on these forums interested in this topic.

My wife has narcolepsy and cataplexy. She takes Provigil and Xyrem (max dose). After researching and talking to doctors we decided to try for a baby. She went off Provigil for a month before we started trying; she stayed on the Xyrem. She got pregnant right away after her month of waiting.

There have been no discernible ill effects from staying on the Xyrem. She has to nap a few extra times during the day without the Provigil, but she drinks coffee, tea, or soft drinks to take the edge off (our moms didn't give up caffeine and we turned out okay!). Every trip to the doctor has resulted in excellent tests; the pregnancy is textbook. Our son (!) is healthy as far as the doctor can tell, and all tests keep coming back normal. A couple of weeks ago he started moving discernibly and now regularly kicks and shifts as expected.

Of note for those with cataplexy: her cataplexy HAS gotten a bit worse. Her triggers bring it on a little bit more readily, but it isn't debilitating. For safety's sake she only drives locally and only after she's fresh from a nap; I drive the rest of the time.

We're in the sixth month now and are due around Thanksgiving. She'll be having a C-section because no one wants to mess around with natural childbirth and cataplexy. If all goes as planned I'll probably update this thread once he's born so that I can share the results!


Congratulations, so happy for you!!!!!

#3 lndsylou111

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Posted 08 August 2012 - 09:03 AM

I would be very interested in how you guys made the decision to stay on your Xyrem and what your doctors' input was at that point. I am also on Xyrem (7.5 grams per night) and methylphenidate daily for wakefulness for the treatment of narcolepsy with cataplexy. My cataplexy is pretty mild when I am on my medication but I went about a week a few months ago with no Xyrem because of a hold up with insurance and it was not fun in the slightest and I noticed my cataplexy seemed more easily triggered by laughing.

Anyways - my husband and I are wanting to get pregnant. My sleep doctor consulted with the doctors at the Center for Narcolpesy at Stanford University for medication recommendations and they all concluded that I should be off ALL medication at least 2 months before trying to conceive and then remain off all medication throughout my pregnancy. I am REALLY concerned about being off of Xyrem. I am a teacher and have been on summer vacation and have actually been off the methylphenidate during my vacation, but getting off of Xyrem would be very hard. That is why I am interested to know how you guys decided to stay on Xyrem and what your doctor's recommendations were regarding that. What did your OB doctor say about everything? Are you seeing a high risk doc because of the N?

I would not be able to stay home during a pregnancy, I would need to work. Is your wife able to work normally aside from her naps or is she staying at home? I am basically seeking more information as your wife and I seem to be kind of in the same place - we are still researching and looking at all our options. Any advice and help would be greatly appreciated!

Thanks,
Lindsey

#4 cmcardle74

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Posted 08 August 2012 - 01:38 PM

I would be very interested in how you guys made the decision to stay on your Xyrem and what your doctors' input was at that point. I am also on Xyrem (7.5 grams per night) and methylphenidate daily for wakefulness for the treatment of narcolepsy with cataplexy. My cataplexy is pretty mild when I am on my medication but I went about a week a few months ago with no Xyrem because of a hold up with insurance and it was not fun in the slightest and I noticed my cataplexy seemed more easily triggered by laughing.

Anyways - my husband and I are wanting to get pregnant. My sleep doctor consulted with the doctors at the Center for Narcolpesy at Stanford University for medication recommendations and they all concluded that I should be off ALL medication at least 2 months before trying to conceive and then remain off all medication throughout my pregnancy. I am REALLY concerned about being off of Xyrem. I am a teacher and have been on summer vacation and have actually been off the methylphenidate during my vacation, but getting off of Xyrem would be very hard. That is why I am interested to know how you guys decided to stay on Xyrem and what your doctor's recommendations were regarding that. What did your OB doctor say about everything? Are you seeing a high risk doc because of the N?

I would not be able to stay home during a pregnancy, I would need to work. Is your wife able to work normally aside from her naps or is she staying at home? I am basically seeking more information as your wife and I seem to be kind of in the same place - we are still researching and looking at all our options. Any advice and help would be greatly appreciated!

Thanks,
Lindsey


Lindsey, my wife works at home and I am the primary source of income, so we don't face that particular challenge.

We had thought we wouldn't be able to try for a baby because she really can't go off of the Xyrem at all; her cataplexy is too severe without it (but, happily, well controlled on it). But when I saw the results of some Canadian study (I think I found links to the research through this site) that indicated no pregnancy complications or miscarriage likelihood with Xyrem, we checked with her neurologist. She trusted the FDA's decision to classify it as a Class B drug and told us we could get pregnant, with the proviso (paraphrased), "The decision to stay on any drug is yours because it will always carry some risk; but as the FDA has deemed this a Class B, it should be okay so long as you are willing to accept the risk." Our family doctor concurred. Our OB is fascinated because he's never had a narcoleptic before, so we gave him some literature and he's studied up on his own; we're pretty impressed with him all around so we feel quite safe with him.

Ultimately, my wife said if she couldn't stay on her Xyrem we would not be having a baby this way. Our doctors all thought it was safe, so we ran with it. So far, so good. :)

#5 lndsylou111

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Posted 11 August 2012 - 02:01 PM

Lindsey, my wife works at home and I am the primary source of income, so we don't face that particular challenge.

We had thought we wouldn't be able to try for a baby because she really can't go off of the Xyrem at all; her cataplexy is too severe without it (but, happily, well controlled on it). But when I saw the results of some Canadian study (I think I found links to the research through this site) that indicated no pregnancy complications or miscarriage likelihood with Xyrem, we checked with her neurologist. She trusted the FDA's decision to classify it as a Class B drug and told us we could get pregnant, with the proviso (paraphrased), "The decision to stay on any drug is yours because it will always carry some risk; but as the FDA has deemed this a Class B, it should be okay so long as you are willing to accept the risk." Our family doctor concurred. Our OB is fascinated because he's never had a narcoleptic before, so we gave him some literature and he's studied up on his own; we're pretty impressed with him all around so we feel quite safe with him.

Ultimately, my wife said if she couldn't stay on her Xyrem we would not be having a baby this way. Our doctors all thought it was safe, so we ran with it. So far, so good. :)


WOW! That is great. In preparation for my check up with my sleep doctor, I was doing a little research of my own when I came across your post. I shared it with my sleep doctor and he is doing some more research and info gathering but it is looking like my husband and I will also try to get pregnant with my staying on my Xyrem during the 2nd and 3rd trimesters...did your wife stay on Xyrem through her 1st trimester? I am going to be completely med free for 1st trimester. I am so interested to follow you guys' progress and delivery as I will be going through it soon as well. There is simply so little information and documented cases for other moms and moms-to-be, I am so glad I found your post. Please keep me posted. Thanks again!

lindsey

#6 lndsylou111

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Posted 11 August 2012 - 02:02 PM

Lindsey, my wife works at home and I am the primary source of income, so we don't face that particular challenge.

We had thought we wouldn't be able to try for a baby because she really can't go off of the Xyrem at all; her cataplexy is too severe without it (but, happily, well controlled on it). But when I saw the results of some Canadian study (I think I found links to the research through this site) that indicated no pregnancy complications or miscarriage likelihood with Xyrem, we checked with her neurologist. She trusted the FDA's decision to classify it as a Class B drug and told us we could get pregnant, with the proviso (paraphrased), "The decision to stay on any drug is yours because it will always carry some risk; but as the FDA has deemed this a Class B, it should be okay so long as you are willing to accept the risk." Our family doctor concurred. Our OB is fascinated because he's never had a narcoleptic before, so we gave him some literature and he's studied up on his own; we're pretty impressed with him all around so we feel quite safe with him.

Ultimately, my wife said if she couldn't stay on her Xyrem we would not be having a baby this way. Our doctors all thought it was safe, so we ran with it. So far, so good. :)


WOW! That is great. In preparation for my check up with my sleep doctor, I was doing a little research of my own when I came across your post. I shared it with my sleep doctor and he is doing some more research and info gathering but it is looking like my husband and I will also try to get pregnant with my staying on my Xyrem during the 2nd and 3rd trimesters...did your wife stay on Xyrem through her 1st trimester? I am going to be completely med free for 1st trimester. I am so interested to follow you guys' progress and delivery as I will be going through it soon as well. There is simply so little information and documented cases for other moms and moms-to-be, I am so glad I found your post. Please keep me posted. Thanks again!

lindsey

#7 gathering_string

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Posted 07 September 2012 - 05:26 AM

I've posted about this in a couple of different threads and I thought it would be more helpful to encapsulate it all in a new one; I know there are a few folks on these forums interested in this topic.

My wife has narcolepsy and cataplexy. She takes Provigil and Xyrem (max dose). After researching and talking to doctors we decided to try for a baby. She went off Provigil for a month before we started trying; she stayed on the Xyrem. She got pregnant right away after her month of waiting.

There have been no discernible ill effects from staying on the Xyrem. She has to nap a few extra times during the day without the Provigil, but she drinks coffee, tea, or soft drinks to take the edge off (our moms didn't give up caffeine and we turned out okay!). Every trip to the doctor has resulted in excellent tests; the pregnancy is textbook. Our son (!) is healthy as far as the doctor can tell, and all tests keep coming back normal. A couple of weeks ago he started moving discernibly and now regularly kicks and shifts as expected.

Of note for those with cataplexy: her cataplexy HAS gotten a bit worse. Her triggers bring it on a little bit more readily, but it isn't debilitating. For safety's sake she only drives locally and only after she's fresh from a nap; I drive the rest of the time.

We're in the sixth month now and are due around Thanksgiving. She'll be having a C-section because no one wants to mess around with natural childbirth and cataplexy. If all goes as planned I'll probably update this thread once he's born so that I can share the results!



First, the obligatory CONGRATULATIONS!! That is so exciting, and I am elated for you both:O) And, THANK YOU for bravely reporting the details!!!!!! I'm so glad to see a report of a family actually dealing with this scenario successfully. Many of the threads that I have read previously were loaded with naysayers about remaining on meds during pregnancy. Their comments were very judgmental and discouraging, despite the fact that they were not really educated on the topic or going through the process themselves.

I have investigated this topic a lot, because my husband and I would really like to have a second child. However, we now know that I was having severe full body cataplexy attacks before, during, and directly after labor with my first. My delivery only lasted 6 and 1/2 hours, but it was a very scary and traumatic experience because we had no clue at that point that I had narcolepsy, let alone cataplexy. They just thought I was passing out because of not eating enough, or losing too much blood, or maybe they just thought I was a wimp. I just thought it was because I delivered a 9lb 12oz baby with no drugs! Go figure...

Now that we are aware of my condition, and it is being treated relatively successfully, we are really feeling that "call." I spoke to my sleep specialist on the very first visit about pregnancy, and she reassured me that there are many women that have successful pregnancies while staying on meds. I researched that claim, and the risk categories of the meds that I am currently taking (Xyrem/max dose, and Nuvigil/150mg). Turns out, Xyrem is classified in the same category as Tylenol (Class B) for pregnancy risk! Nuvigil is an absolute no-no though, as it presents severe teratogenic and mutagenic effects in the developing baby. That was all I needed to hear to be convinced that we could have another child. I'm pretty sure that I can deal without the Nuvigil, but the Xyrem is essential to my daily functioning. I know that I will not ever be able to be without it in order to live any semblance of a normal life.

My sleep specialist did also confirm that I would have to have a scheduled c-section. I am still mentally processing that one, grieving over it actually. My first delivery was all-natural at a birth center. I had the most natural, drug free, medical intervention free pregnancy and delivery the first time around. Back then, I wouldn't even take Tylenol unless I was desperate. I have always been very adamant that child birth is not a medical ailment, but boy have the tables turned! I will have to get to the acceptance phase before actually trying for a pregnancy. I'm still getting to the acceptance phase of having to take heavy duty meds every day for the rest of my life just to feel normal:o/ But I know in the long run, a second child is what I really want. I want my son to have a sibling to share the world with; a comrade and confidant. This is way more valuable than any idealized vision of child birth.

Anyway, I didn't mean to ramble or steal any of your thunder:o) However, I just wanted to confirm for others that my sleep doc said virtually the same thing as yours: 1) Get off the stimulant drugs at least a month before conception, and stay off of them throughout pregnancy. 2) Many, many women stay on Xyrem during conception and throughout their pregnancy without negative effects for the mother or baby. 3) If you are narcoleptic, cataplexy or not, you will have a scheduled c-section for delivery. 4) I can confirm from personal experience that the scheduled c-section is both extremely necessary, and in a weird way highly desirable. You will avoid the risk of complications from cataplexy, and you won't wear your body out through natural delivery.

The one thing that I have not gotten a conclusive answer on, however, is whether or not you can nurse while on Xyrem. This is still one of my hang-ups. I really want to nurse. My first time around didn't go very well. I was undiagnosed at that point, and nothing was going well for me (to put it mildly). I am definitely anxious for a second chance with that. Mr. (Ms.? I don't like to assume, no offense) cmcardle74, would you please post with any information you receive about Xyrem and nursing? I would be really grateful for the information! We are planning to start trying for a baby in January, so I am amassing all of my research. Also, please continue to update us in general. You are my/our only live lead so far!

Take care!

#8 cmcardle74

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Posted 03 November 2012 - 10:07 AM

Greetings all!

I can now happily report that our son was safely delivered a couple of days ago and all is well. My wife's pregnancy largely went without difficulty for the full time; staying off of the Provigil was a chore, but doable. The Xyrem never caused any particular problems. She did develop preeclampsia early this week which precipitated an early delivery--about 3 weeks early--but once we got the little guy out things are smoothing out.

Our baby is perfectly healthy and doing as expected for a child who is technically premature (he needs a little oxygen, but that's it). There is no evidence at this point that the Xyrem caused any complications. My wife's cataplexy became a bit of an issue during the administration of the epidural because it took four attempts to get the needle properly inserted. That was very painful and triggered cataplexy, and by the time they got it done she was pretty blitzed. It did wear off pretty quickly, though. We had already had preparatory meetings with the head of the anesthesia department, and all the doctors in the practice had read the literature and met us, so my wife could give them all explicit instructions on what to do if cataplexy happened (calm down and let her relax!). They did this with no argument or tension, thankfully! Once they got started delivering everything went smoothly and we couldn't be happier!

As for the breastfeeding, my wife has chosen to not breast feed. She's really loopy at night while on Xyrem so it probably wouldn't be safe for the baby at that moment, and she wants to get back on her Provigil right away--which we don't think is safe for our son!

So yeah. All went well, no regrets, and prayers and blessings for anyone else contemplating or doing this!

cmcardle74 (_father_ of the baby, for you who wondered!)

#9 Hank

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Posted 03 November 2012 - 10:22 AM

Greetings all!

I can now happily report that our son was safely delivered a couple of days ago and all is well. My wife's pregnancy largely went without difficulty for the full time; staying off of the Provigil was a chore, but doable. The Xyrem never caused any particular problems. She did develop preeclampsia early this week which precipitated an early delivery--about 3 weeks early--but once we got the little guy out things are smoothing out.

Our baby is perfectly healthy and doing as expected for a child who is technically premature (he needs a little oxygen, but that's it). There is no evidence at this point that the Xyrem caused any complications. My wife's cataplexy became a bit of an issue during the administration of the epidural because it took four attempts to get the needle properly inserted. That was very painful and triggered cataplexy, and by the time they got it done she was pretty blitzed. It did wear off pretty quickly, though. We had already had preparatory meetings with the head of the anesthesia department, and all the doctors in the practice had read the literature and met us, so my wife could give them all explicit instructions on what to do if cataplexy happened (calm down and let her relax!). They did this with no argument or tension, thankfully! Once they got started delivering everything went smoothly and we couldn't be happier!

As for the breastfeeding, my wife has chosen to not breast feed. She's really loopy at night while on Xyrem so it probably wouldn't be safe for the baby at that moment, and she wants to get back on her Provigil right away--which we don't think is safe for our son!

So yeah. All went well, no regrets, and prayers and blessings for anyone else contemplating or doing this!

cmcardle74 (_father_ of the baby, for you who wondered!)



Congratulation to you and your wife on the birth of your son.

#10 sleepylune

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Posted 03 November 2012 - 12:39 PM

Greetings all!

I can now happily report that our son was safely delivered a couple of days ago and all is well. My wife's pregnancy largely went without difficulty for the full time; staying off of the Provigil was a chore, but doable. The Xyrem never caused any particular problems. She did develop preeclampsia early this week which precipitated an early delivery--about 3 weeks early--but once we got the little guy out things are smoothing out.

Our baby is perfectly healthy and doing as expected for a child who is technically premature (he needs a little oxygen, but that's it). There is no evidence at this point that the Xyrem caused any complications. My wife's cataplexy became a bit of an issue during the administration of the epidural because it took four attempts to get the needle properly inserted. That was very painful and triggered cataplexy, and by the time they got it done she was pretty blitzed. It did wear off pretty quickly, though. We had already had preparatory meetings with the head of the anesthesia department, and all the doctors in the practice had read the literature and met us, so my wife could give them all explicit instructions on what to do if cataplexy happened (calm down and let her relax!). They did this with no argument or tension, thankfully! Once they got started delivering everything went smoothly and we couldn't be happier!

As for the breastfeeding, my wife has chosen to not breast feed. She's really loopy at night while on Xyrem so it probably wouldn't be safe for the baby at that moment, and she wants to get back on her Provigil right away--which we don't think is safe for our son!

So yeah. All went well, no regrets, and prayers and blessings for anyone else contemplating or doing this!

cmcardle74 (_father_ of the baby, for you who wondered!)


congratulations!!!

#11 wanttosleep1

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Posted 05 November 2012 - 01:07 PM

I am dealing with the same issue!! I want a second baby. I was completely med free with the first one was completely miserable. However, I had the luxury of being able to sleep whenver I wanted. Now I have a 2yr old son and I can't just lay around all day. I take Adderall and Ambien currently. I know I can't take my Adderall during pregnancy but I need SOMETHING to help me sleep at night or I would not be able to take care of my son during the day. My sleep doctor said I have to be med free during pregnancy and did not mention Xyrem. I have not heard of Xyrem. Is it a sleeping pill? I am desperatly trying to find out as much info as possible before I decide to get pregnant again. I hate how this hypersomnolence is dictating my life but so be it. I need to be ok and be able to care for my son.

#12 DeathRabbit

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Posted 05 November 2012 - 03:31 PM

I am dealing with the same issue!! I want a second baby. I was completely med free with the first one was completely miserable. However, I had the luxury of being able to sleep whenver I wanted. Now I have a 2yr old son and I can't just lay around all day. I take Adderall and Ambien currently. I know I can't take my Adderall during pregnancy but I need SOMETHING to help me sleep at night or I would not be able to take care of my son during the day. My sleep doctor said I have to be med free during pregnancy and did not mention Xyrem. I have not heard of Xyrem. Is it a sleeping pill? I am desperatly trying to find out as much info as possible before I decide to get pregnant again. I hate how this hypersomnolence is dictating my life but so be it. I need to be ok and be able to care for my son.

Xyrem's way more than an ordinary sleeping pill, and I would strongly suggest you not take that whilst pregnant. The whole reason it was made illegal was because young teens started using it to party and it killed some of them. Ever heard of GHB? It's chemical chimera of that.No offense to OP, but I shudder to think what might happen to a developing brain if exposed to too much of this stuff. The therapeutic dosage is fairly low, compared to what partiers and date-rapists would use, but I could easily foresee accidents where someone double doses on it whilst sleepy, and though that would be bad notwithstanding, that might prove fatal for a fetus. I'm not being judgmental here; everyone has to make their own decisions and what may be right for one isn't for another, but personally I'd feel like wed be playing Russian Roulette with our unborn child if my wife was on Xyrem during pregnancy.

EDIT: See the section marked pregnancy. FDA Xyrem White Paper I will say I'm probably a tad biased. Nothing against children, but they need a father who's more stable, and my gf that I might be marrying is not a very steady person either, so no kids for me prolly. Combine that with the fact we were both miserable growing up, due to anxiety/depression and a general inability to socialize, plus given my narcoleptic genes (not to mention the state of upheaval in the world), we've decided bringing our kids into this world would be cruel for them. Sorry if I seem overzealous on this issue, but I'm really sensitive to it, because it's something I've thought long and hard on and discussed with my mate frequently. Also, my Aunt was diagnosed with Epilepsy, back when they knew as much about it as they do narcolepsy now. They had her on anti-seizure meds, the kind that turned out to cause a 1/4 chance of severe physical and mental retardation, but they didn't know that then. So, my poor cousin ended up being fairly deformed with an IQ of about 85. Sometimes they catch this stuff in clinical trials or animal trials, or are able to predict it with theory, but the lion share of the time, the way they find out about medicine causing birth defects is if it happens to a statistically significant amount of babies, whose mothers' took the drug, enough for it to catch the FDA's eye.

#13 Megssosleepy

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Posted 09 November 2012 - 10:52 AM

Greetings all!

I can now happily report that our son was safely delivered a couple of days ago and all is well. My wife's pregnancy largely went without difficulty for the full time; staying off of the Provigil was a chore, but doable. The Xyrem never caused any particular problems. She did develop preeclampsia early this week which precipitated an early delivery--about 3 weeks early--but once we got the little guy out things are smoothing out.

Our baby is perfectly healthy and doing as expected for a child who is technically premature (he needs a little oxygen, but that's it). There is no evidence at this point that the Xyrem caused any complications. My wife's cataplexy became a bit of an issue during the administration of the epidural because it took four attempts to get the needle properly inserted. That was very painful and triggered cataplexy, and by the time they got it done she was pretty blitzed. It did wear off pretty quickly, though. We had already had preparatory meetings with the head of the anesthesia department, and all the doctors in the practice had read the literature and met us, so my wife could give them all explicit instructions on what to do if cataplexy happened (calm down and let her relax!). They did this with no argument or tension, thankfully! Once they got started delivering everything went smoothly and we couldn't be happier!

As for the breastfeeding, my wife has chosen to not breast feed. She's really loopy at night while on Xyrem so it probably wouldn't be safe for the baby at that moment, and she wants to get back on her Provigil right away--which we don't think is safe for our son!

So yeah. All went well, no regrets, and prayers and blessings for anyone else contemplating or doing this!

cmcardle74 (_father_ of the baby, for you who wondered!)


Great news! I was just thinking of you this morning and was so happy to see your post! Congratulations :D !

#14 The~Crazy~Lyfe~Of~Me

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Posted 26 November 2012 - 01:01 PM

Hello All! I just want to share my input on being pregnant while on Xyrem. I am currently pregnant with my second child. When I was pregnant with my first child I had no clue I had a sleeping disorder so it was really had for me to function during and after pregnancy. But I will say this pregnancy has been totally different since I know how to better schedule my day and time. Before pregnancy I was taking Provigil and Zoloft, but when I became pregnant I stopped all meds and stuck to a strict schedule as long as my two years allowed it. But I knew by my third trimester I would need to start Xyrem given my experience with my last pregnancy. I can understand how most people are really cautiousness about taking this medicine. The word GHB can be really scary. My husband and I went over and over about whether or not to start Xyrem, but in the end the choice was clear because I also had to be able to take care of my son during the day. Xyrem is Category B and and only stays in your system for a short while that's why you have to take two doses at night. Its strictly regulated and they continuously monitor your treatment especially if you're pregnant . For me starting Xyrem was the best decision I could have made for my pregnancy. I will say that the med doesn't seem to effect my baby. She kicks all night long. Xyrem is meant to help you sleep not keep you asleep like most sleeping pills. If my baby is extremely active it takes me longer to go to sleep. If she says active continuously then I wake up every two hours instead of the intended 4. But when I do sleep it is a very peaceful sleep and I wake up refreshed. As far as breastfeeding while taking Xyrem, I can't really tell you what I would do. I do plan on breastfeeding during the day but maybe not so much during the night. You could always nursing before you take Xyrem and substitute at night until you have enough milk on stand by. That way you only miss a couple a feedings at night. I would still suggest pumping at night to avoid engorgement. But I also feel if I was able to take Effexor XR (category C) and breastfeeding my son for a year and him turn out fine then Xyrem should be more than fine since its not meant to stay in your system all day. But I would suggest only doing it if you child feeds every 3-4 hours and not every 2. Again the medicine is a short acting medicine and is only meant to help you sleep and not keep you asleep. But ultimately the choice is yours. But if no one is willing to at least give it a try then we will really never know and the information about the drug will never change.

#15 kyethra

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Posted 11 December 2012 - 04:38 AM

I would be very interested in how you guys made the decision to stay on your Xyrem and what your doctors' input was at that point. I am also on Xyrem (7.5 grams per night) and methylphenidate daily for wakefulness for the treatment of narcolepsy with cataplexy. My cataplexy is pretty mild when I am on my medication but I went about a week a few months ago with no Xyrem because of a hold up with insurance and it was not fun in the slightest and I noticed my cataplexy seemed more easily triggered by laughing.

Anyways - my husband and I are wanting to get pregnant. My sleep doctor consulted with the doctors at the Center for Narcolpesy at Stanford University for medication recommendations and they all concluded that I should be off ALL medication at least 2 months before trying to conceive and then remain off all medication throughout my pregnancy. I am REALLY concerned about being off of Xyrem. I am a teacher and have been on summer vacation and have actually been off the methylphenidate during my vacation, but getting off of Xyrem would be very hard. That is why I am interested to know how you guys decided to stay on Xyrem and what your doctor's recommendations were regarding that. What did your OB doctor say about everything? Are you seeing a high risk doc because of the N?

I would not be able to stay home during a pregnancy, I would need to work. Is your wife able to work normally aside from her naps or is she staying at home? I am basically seeking more information as your wife and I seem to be kind of in the same place - we are still researching and looking at all our options. Any advice and help would be greatly appreciated!

Thanks,
Lindsey



#16 kyethra

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Posted 11 December 2012 - 04:56 AM

I have an almost one year old and I stayed on Xyrem throughout my pregnancy and while breastfeeding. I discussed this a couple of years before I wanted to get pregnant and decided that I would get off of Xyrem during my first trimester and then get back on. I had managed to get down to a lower dose of cymbalta (original plan was to get off of cymbalta and onto zoloft, but didn't seem to manage). But then my doctor retired and my new doctor didn't want me on xyrem at all. So I switched doctors to one who would let me stay on Xyrem and was local. He did have a phone consultatation with a high risk specialist. Originally the plan was for me to not work and get off of meds, but I spent over a year on fertility treatments and life happens. I started working part time and wanted to keep doing that. It has been hard being off of provigil too.

So I stayed on the Xyrem and was foruntate enough to be able to nap between clients. I did have a high risk pregnancy and I developed severe preeclampsia and I was hospitalized prior to delivery. They would lock the Xyrem up and then bring it in to me. I ended up having a C section at 35 weeks. My baby was initially sleepy both in the hospital, and outside for a bit. However, he has always done pretty well for a preemie and was only in the NICU for a couple of days. He started out at the fifth percentile and at his nine month check up he was 75th percentile height and 50th in weight. I decided that I wanted to breastfeed and my husband and I had plannned that I would pump before bed and sleep for four hours then get up again, pump, and when I was ready for more sleep I would pump again and so forth. This way I wasn't on xyrem while giving baby milk. At the hospital the neonatologist didn't want me to breastfeed because of the xyrem, but I felt this was not reasonable. The nurses were great advocates for me-- and we ended up having the pediatrician be the deciding doctor. He sided with us and we agreeded to initially pump and dump after xyrem to be extra safe. After a couple of weeks of that going well I stopped dumping milk.

I really miss provigil. If I was working full time I would have likely stopped pumping by now (I ended up exclusively pumping) and gone back on the provigil. I wanted to get on ritalin but because my blood pressure is still a little high and the stuff one gets on while breastfeeding isn't the best at controlling it all the time, my neurologist said no. So I take caffeine. I nap. it has been really hard on me, but in a couple of weeks when I stop pumping my son will have enough milk to last until his first birthday.

#17 gathering_string

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Posted 18 December 2012 - 11:26 PM

Xyrem's way more than an ordinary sleeping pill, and I would strongly suggest you not take that whilst pregnant. The whole reason it was made illegal was because young teens started using it to party and it killed some of them. Ever heard of GHB? It's chemical chimera of that.No offense to OP, but I shudder to think what might happen to a developing brain if exposed to too much of this stuff. The therapeutic dosage is fairly low, compared to what partiers and date-rapists would use, but I could easily foresee accidents where someone double doses on it whilst sleepy, and though that would be bad notwithstanding, that might prove fatal for a fetus. I'm not being judgmental here; everyone has to make their own decisions and what may be right for one isn't for another, but personally I'd feel like wed be playing Russian Roulette with our unborn child if my wife was on Xyrem during pregnancy.

EDIT: See the section marked pregnancy. FDA Xyrem White Paper I will say I'm probably a tad biased. Nothing against children, but they need a father who's more stable, and my gf that I might be marrying is not a very steady person either, so no kids for me prolly. Combine that with the fact we were both miserable growing up, due to anxiety/depression and a general inability to socialize, plus given my narcoleptic genes (not to mention the state of upheaval in the world), we've decided bringing our kids into this world would be cruel for them. Sorry if I seem overzealous on this issue, but I'm really sensitive to it, because it's something I've thought long and hard on and discussed with my mate frequently. Also, my Aunt was diagnosed with Epilepsy, back when they knew as much about it as they do narcolepsy now. They had her on anti-seizure meds, the kind that turned out to cause a 1/4 chance of severe physical and mental retardation, but they didn't know that then. So, my poor cousin ended up being fairly deformed with an IQ of about 85. Sometimes they catch this stuff in clinical trials or animal trials, or are able to predict it with theory, but the lion share of the time, the way they find out about medicine causing birth defects is if it happens to a statistically significant amount of babies, whose mothers' took the drug, enough for it to catch the FDA's eye.


I just want to take a moment to provide some information that you might want to consider before making up your mind so steadfastly. GHB is a natural compound, and is even produced by your own body. It has been synthetically produced for over 100 years. According to the FDA website you provided, Xyrem is rated pregnancy category B which is indeed the very same category as Tylenol, ibuprofen, pseudoephedrine, Benadryl, and asparatame. Though extensive studies have not been conducted in humans, there was no evidence of teratogenic effects in rat and rabbit offspring, and those animals received many times more (proportionally to their size and weight) than the maximum recommended nightly human dose. Though not entirely conclusive, it is a pretty sound indication that there are no concerns with birth defects. It might seem incredible, but taking Xyrem during pregnancy is deemed by the FDA just as safe as taking two Tylenol and washing it down with a diet soda.

Furthermore, I would also like to clarify that it was made illegal in the '90s because people were trying to make it themselves (from paint stripper and sodium hydroxide!!) and were abusing it in the scariest of ways (mixing it with alcohol and other street drugs, using it to incapacitate women and take advantage of them, etc.). Xyrem is manufactured by a reputable pharmaceutical company, not an amateur makeshift lab in a drug dealer's garage. When used as directed and under close supervision of a doctor, Xyrem is very safe and in no way even remotely resembles a game of Russian Roulette with your unborn child.

While I respect everyone's personal opinions about medication use in pregnancy, I really feel strongly that this is not the venue to propagate fear through unfounded, sensationalized claims about what *might* happen to someone's unborn child. Pregnancy is anxiety provoking enough on it's own. I think that we all owe it to each other to make sure that we are providing support and positive messages. If you are a member here, I'm sure that you can relate to the need of being surrounded by as many kind and understanding individuals as possible, no?

#18 DeathRabbit

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Posted 19 December 2012 - 01:13 AM

I just want to take a moment to provide some information that you might want to consider before making up your mind so steadfastly. GHB is a natural compound, and is even produced by your own body. It has been synthetically produced for over 100 years. According to the FDA website you provided, Xyrem is rated pregnancy category B which is indeed the very same category as Tylenol, ibuprofen, pseudoephedrine, Benadryl, and asparatame. Though extensive studies have not been conducted in humans, there was no evidence of teratogenic effects in rat and rabbit offspring, and those animals received many times more (proportionally to their size and weight) than the maximum recommended nightly human dose. Though not entirely conclusive, it is a pretty sound indication that there are no concerns with birth defects. It might seem incredible, but taking Xyrem during pregnancy is deemed by the FDA just as safe as taking two Tylenol and washing it down with a diet soda.

Furthermore, I would also like to clarify that it was made illegal in the '90s because people were trying to make it themselves (from paint stripper and sodium hydroxide!!) and were abusing it in the scariest of ways (mixing it with alcohol and other street drugs, using it to incapacitate women and take advantage of them, etc.). Xyrem is manufactured by a reputable pharmaceutical company, not an amateur makeshift lab in a drug dealer's garage. When used as directed and under close supervision of a doctor, Xyrem is very safe and in no way even remotely resembles a game of Russian Roulette with your unborn child.

While I respect everyone's personal opinions about medication use in pregnancy, I really feel strongly that this is not the venue to propagate fear through unfounded, sensationalized claims about what *might* happen to someone's unborn child. Pregnancy is anxiety provoking enough on it's own. I think that we all owe it to each other to make sure that we are providing support and positive messages. If you are a member here, I'm sure that you can relate to the need of being surrounded by as many kind and understanding individuals as possible, no?

It was just my opinion. Everyone has to make these kind of decisions for themselves. I'm not propagating fear or judging or anyone. I'm sorry if I've offended. If you knew me IRL, you'd know that I am probably the least judgmental person on the planet. The only reason I contributed was to offer a different point of view, for variety's sake.

#19 Megssosleepy

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Posted 19 December 2012 - 11:25 AM

I just want to take a moment to provide some information that you might want to consider before making up your mind so steadfastly. GHB is a natural compound, and is even produced by your own body. It has been synthetically produced for over 100 years. According to the FDA website you provided, Xyrem is rated pregnancy category B which is indeed the very same category as Tylenol, ibuprofen, pseudoephedrine, Benadryl, and asparatame. Though extensive studies have not been conducted in humans, there was no evidence of teratogenic effects in rat and rabbit offspring, and those animals received many times more (proportionally to their size and weight) than the maximum recommended nightly human dose. Though not entirely conclusive, it is a pretty sound indication that there are no concerns with birth defects. It might seem incredible, but taking Xyrem during pregnancy is deemed by the FDA just as safe as taking two Tylenol and washing it down with a diet soda.

Furthermore, I would also like to clarify that it was made illegal in the '90s because people were trying to make it themselves (from paint stripper and sodium hydroxide!!) and were abusing it in the scariest of ways (mixing it with alcohol and other street drugs, using it to incapacitate women and take advantage of them, etc.). Xyrem is manufactured by a reputable pharmaceutical company, not an amateur makeshift lab in a drug dealer's garage. When used as directed and under close supervision of a doctor, Xyrem is very safe and in no way even remotely resembles a game of Russian Roulette with your unborn child.

While I respect everyone's personal opinions about medication use in pregnancy, I really feel strongly that this is not the venue to propagate fear through unfounded, sensationalized claims about what *might* happen to someone's unborn child. Pregnancy is anxiety provoking enough on it's own. I think that we all owe it to each other to make sure that we are providing support and positive messages. If you are a member here, I'm sure that you can relate to the need of being surrounded by as many kind and understanding individuals as possible, no?


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#20 ZombiePrincess

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Posted 10 January 2013 - 10:52 PM

I'm so thankful for this post! I am finally ready to start a family-- well as ready as I'll ever really be. Unfortunately my sleep doctor and OBGYN haven't been very helpful about finding answers to my questions and concerns regarding staying on meds (primarily Xyrem). Thanks again for all the info!