Narcoleptic9876

Pregnancy, Breastfeeding Xyrem Use

11 posts in this topic

I am curious if anyone on here has had an experience of becoming pregnant and/or breastfeeding while using Xyrem. I was diagnosed with narcolepsy last year and have been on xyrem. I would like to get some feed back from people who have done this and what their experiences were. I've talked to doctors but they can only tell me that xyrem is not expected to cause harm to your unborn baby and not enough research has been done on breastfeeding. So I'd like to reach out and see if anyone has tried either becoming pregnant and/or breastfeeding while on xyrem.

Thanks for any insight anyone has on this! I've searched sites and read the Canadian study done but would like to get insight from real people who have been through it.

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There are several threads on here if you use the search function located at the upper right of your screen. I think the general consensus for both is that it is probably mostly harmless. Speaking personally, I wouldn't do it, because Xyrem hasn't around long enough for the children (whose mothers used during pregnancy) to grow up, so there's no way to know for certain about defects and anomalies. But there's several anecdotal accounts on here that are saying so far, so good.

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I'm currently 37 weeks pregnant, and with my doctor's supervision, I've stayed on Xyrem through my entire pregnancy. My baby is healthy and growing exactly like he should, and Xyrem has caused no complications during my pregnancy.

 

I do plan on staying on Xyrem while breastfeeding by pumping milk for night time feedings, but I haven't done it yet, so I can't say how it will turn out.

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Thank you polandera11! I truly appreciate you sharing!! If you don't mind would you keep me posted on how breastfeeding goes? If you are not comfortable with it though I understand as well! Thanks again!

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As death rabbit said there are a few threads regarding this out there. I actually just commented on one of the more recent ones under the Treatment category. This is what I said:

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Just an update. I'm currently 22 weeks pregnant and me and baby are both doing very well. I stopped taking my stimulants right after i found out i was pregnant (aprox 5 weeks) and weaned off my antidepressants (completely off of them by aprx 12 weeks) but have stayed on Xyrem (max dose) and continue to throughout. I am still undecided as to whether or not I will stay on Xyrem while breast feeding.

My OBGYN and sleep doctors both said as with any pregnancy, it is ideal to get off all meds but that they would support my decision to continue Xyrem as it is a category B drug (like Tylenol) and even though there haven't been studies in humans, all animal studies indicated no ill effects.

Just a few side notes, this is my second pregnancy. The first was before I was diagnosed w N or on any meds and I actually had more issues with that one. I developed preeclampsia and had to go on bed rest by aprox 6 months but I strongly believe that was due to gaining way too much weight (90 lbs total). I have gained a bit more than recommended this time around as well but no where close to last time. Currently no signs of preeclampsia or any other issues but ill try to post an update if anything comes up.

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After I posted the above comment my screen refreshed and low and behold there were several new comments about how Xyrem has now been changed to a category C drug so I will have to read up on that. My hubby is in his final year of medical school so ill probably ask him to look at everything as he understands so much more about verbiage and examples, etc.

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I have a 3 week old daughter, and I find that breastfeeding while having narcolepsy is incredibly difficult; maintaining my milk supply is hard, but I want the best for her since breast milk produces antibodies that will help her immune system. I am currently supplementing with formula, but am trying to increase my supply since I know she needs it.  I am not on medication at the moment, but was on Xyrem until I found out I was pregnant. My neurologist at the time decided to discontinue the treatment and I felt that was best for the baby since the medication is so strong, I hated the side effects so it gave me a break from that too.  However pregnancy fatigue and narcolepsy absolutely sucked, but I knew it would be worth it in the end when I held my baby in my arms.   My current neurologist and my daughters pediatrician suggest I go back on Xyrem or some other medication, since I have really bad excessive daytime sleepiness combined with having a newborn who loves staying up late I am extremely sleepy even more now.  While I am still on maternity leave whenever my baby is asleep I am constantly looking up ways to increase my milk supply and also safe medications that I can take that will aide my narcolepsy and be safe for breast milk.  The idea of pumping and dumping is heartbreaking to me, but will probably be my reality if I have to take Xyrem, since it is not known if the drug transfers into breast milk.  I have an upcoming appointment with my neurologist to begin treatment again, since I will also be returning back to work, it's going to be hard road ahead of me, but I'd rather be on treatment than risk having a cataplexy attack while around the baby.  Cataplexy is the scariest part of narcolepsy, but I have those episodes about twice a year, but that is still too much for me to handle especially with a newborn.  I am hoping there is a treatment option out there that is right for me, but until then I'm just trying to balance my life and be the best mom I can to my baby. :)  

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I am curious if anyone on here has had an experience of becoming pregnant and/or breastfeeding while using Xyrem. I was diagnosed with narcolepsy last year and have been on xyrem. I would like to get some feed back from people who have done this and what their experiences were. I've talked to doctors but they can only tell me that xyrem is not expected to cause harm to your unborn baby and not enough research has been done on breastfeeding. So I'd like to reach out and see if anyone has tried either becoming pregnant and/or breastfeeding while on xyrem.

Thanks for any insight anyone has on this! I've searched sites and read the Canadian study done but would like to get insight from real people who have been through it.

 

 

I have not personally but i know support groups that would be good for anyone wondering the same or similar things... 

 

 

 

For those who are looking for more support for their children, and better understanding and knowledge should check out some of these groups, whichever apply to you and your children / child;

 

*Groups I Find Priority (Most Helpful)*: 

 

 

 

For Women/Females With Narcolepsy:

 

Sleeping Beauty (Women With Narcolepsy):https://www.facebook.com/groups/390034154391843/

 

 

Moms With Narcolepsy:

 

Support Moms With Narcolepsy: https://www.facebook.com/groups/228539353828226/

 

Pregnancy / Babies PWN: https://www.facebook.com/groups/363533600446306/

 

 

Xyrem Support & Information Groups:

Xyrem Support Group: https://www.facebook.com/groups/204112109766609/

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I took xyrem throughout my whole pregnancy. My baby boy was born just days ago at 39 weeks 4 days, healthy and whole. He had an Apgar score of 9.9 out of 10 and was a healthy 22 inches long and 7 lbs 5 oz. He was alert and very active at birth even after being born just 9 hours after a xyrem dose. I stayed on the lowest dose of 3g twice a night. I have severe narcolepsy, cataplexy, apnea, restless leg, and hypnogogic hallucinations when not on xyrem. I basically am disabled and would not be able to be pregnant if not taking the medicine. It changed my life 10 years ago and allowed me to finish college, get a masters degree and work full time. If you are this affected like I am just know there is hope. My pregnancy was very healthy, and as a precaution I underwent monthly ultrasounds to make sure the baby was well. Honestly I was healthier pregnant than normal. My dairy allergy went away and my severe constipation vanished. I was also an older first time mom at 34. My labor was very quick and I woke up after taking xyrem 2 hours before at about 9 cm dilated. We barely made it to the hospital. I'm not sure if this is a symptom of the med but thought I'd mention it. I had no Cataplexy complications at delivery since I stayed on xyrem throughout. I even have hernia mesh for an inguinal hernia that remained intact and pain free during delivery.

I am a strong believer in Jesus and prayed every night and was prayed for constantly for by at least 30 people during my pregnancy. I believe this was extremely important as well.

 I made my choice after thorough research about xyrem and pregnancy most notably citing a european study that said the noted risk was very minimal during pregnancy as the animal study that was conducted dispensed xyrem at lethal levels incomparable to human dosing standards.

My obgyns supported my decision to stay on my meds but my sleep pathologist did not. I'm thin so I basically didn't mention it to him til I was 8 months pregnant and very much finally showing. He was pissed but I really didn't care. 

I've been advised not to breastfeed although I desperately want to. If you breastfed on xyrem and your child is older now please let me know. I'm looking for more data to support me breastfeeding about half of the day when I presume the medicine would be out of my breastmilk.

Prayers and blessings over all women waiting to be mamas.

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So happy for you! :D So Xyrem is still fully effective for you after 10 years? That's amazing. Hope you find the answers you need regarding breastfeeding.

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https://www.ncbi.nlm.nih.gov/pubmed/26968013

This study concludes you should wait at least 5 hours. I suppose if you wanted to be super careful, you could always pump every night at the 24 hr mark from the last dose and breast feed that way. So yea, it sounds like there's a risk, but it can be minimized to a large degree, though, of course, Xyrem is still not well understood, so any advice I give has to come with that disclaimer. Hmm, I wonder if any of the date rape drug self-test kits you can buy at walgreens et al could be used on the milk so you could determine for yourself.

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