Posted by: Laurie ®
04/18/2006, 13:14:43
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Hi. I don't have any real world experience on this, but do recall once hearing an MD who provides botox comment that while botox is generally contraindicated in pregnancy and while breastfeeding, some of his patients have used it without a problem regardless.For me, I'd either give up botox for x number of months while breastfeeding simply out of paranoia or, more likely, I'd just not breastfeed! With SD, I'd prefer to be able to talk to my baby versus breastfeeding him/her, struggling to communicate and becoming very unhappy. I can personally understand that for someone with severe dystonia botox and/or other dystonia medications may not be compeltely avoidable during pregnancy, but there is no requirement to breastfeed thus eliminating that what-if-it harms-the-baby dilemma after birth. That's very much just my opinion. Laurie
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Posted by: Amelia Walker ®
04/18/2006, 13:42:12
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Hi Jessica. I just had my daughter 12 weeks ago. I had a conversation with my ENT doctor about botox and breastfeeding after she was born and here is what he told me...there have been no studies on botox and pregnancy or botox and breastfeeding and probably never will be as a pregnant woman is not going to risk the health of her child to test the results of botox. He will not inject a pregnant woman, just to be on the safe side. If you are breastfeeding and want botox, he suggested pumping enough milk to last a couple of days and then get the shot. Once you have had the shot, you could pump for a couple days and throw it out. Does that make sense? Well, by the end of my pregnancy I was so desperate for botox that I breast fed for 2 weeks and then switched her to formula and went and got a shot. I just didn't feel great about botox and breastfeeding. I trust my ENT and very much respect his opinion on botox and pregnancy. Dr. Goding is affiliated with University of Minnesota and HCMC medical center in Minneapolis.
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Posted by: christine ®
04/18/2006, 14:24:08
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Hi Jessica,
I am a nursing mother and talked to my ENT about this. There haven't been specific studies, but he believes that the risks are very low given that the botox is injected in a specific muscle and that the molecules are large enough that it is highly unlikely for it to pass into the breastmilk. But, to be safe, he recommended I "pump and dump" which I did for 3 days. I did my first shot in February. Just my experience...
Christine
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Posted by: Jessica DMRF ®
04/18/2006, 15:00:53
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Thank you all so very much for responding and sharing. I will pass along your valuable information to the woman who contacted me. I look forward to reading additional posts if others weigh in as well.You all are a great resource! Best wishes,
Jessica
Modified by Jessica DMRF at Tue, Apr 18, 2006, 15:02:24
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Posted by: Lynne ®
04/18/2006, 21:53:32
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Hi Jessica,Always best to err on the side of extreme caution, if collecting information especially, since any case is anecdotal and not being able to do tests of pregnant/nursing moms makes sense and the effects might not show up for years. I've never taken Botox but was a nursing mom for 14 months (5 months with one son and 9 months with the second) and other than having a periodic beer (the yeast is recommended for good nursing), I never even took even an aspirin while nursing and watched my diet completely. The utmost in nutrition. Having done alot of research on "nursing" many years ago, it only makes sense that moms should never be taking Botox while nursing, unless they are willing to assume a potentially high risk which can never be measured or tested. To me, the potential risk isn't worth it. My younger son is severely mentally ill and if I'd been taking Botox during those nine-months of nursing, I'd be beating myself up with guilt over the possibility that I caused it. As it is, he had the best of nutrition, so I know it wasn't from anything I did during that early feeding process. It's bad enough he inherited Paranoid Schizophrenia through my genes, with all the neurological disorders in the family. Just my personal experience in paying attention to everything that went into my body while being the prime feeder. If a clear, strong voice is important and Botox is necessary, then nursing doesn't make sense. However, I don't know a baby anywhere who would care if his/her mom didn't have a perfect voice temporarily. "Coo'ing" is really easy with a bad voice. Since I had substantial vocal tremors for many years prior to SD, neither of my sons ever heard a strong voice back in the 70's. It's only when we go back to work or need to deal with society that it becomes important to have a better voice. Lynne (AD-SD; RLN surgery; PVFM; Northern California)
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Posted by: Jessica DMRF ®
04/19/2006, 08:25:05
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Thanks, Lynne! The woman who inquired is working closely with her doctor and of course I advised her to discuss any of the ideas presented on the BB with her doctor, who is in the best position to advise her on her unique situation. She was having trouble finding any published information on the matter and was curious about how other women had handled similar situations. Your post is very helpful, and I will pass it along.Thanks again & hope all is well,
Jessica Jessica Feeley, Editor
Dystonia Medical Research Foundation
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Posted by: Lynne ®
04/19/2006, 14:23:45
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Hi Jessica,I think all of us who related to this thread (moms who have nursed or are thinking about it) appreciate this extra information, on behalf of the patient who is asking for more guidance. Good for you to advocate for her. It would probably make a difference if she was a first-time mom or whether she'd had previous children. First time moms tend to be very intent (almost obsessive) on nursing as part of the baby-experience. It's not absolutely necessary to nurse but it is very gratifying to a mom and important to a baby, if the mom is healthy. My best guess (only based on experience) would be that the patient you mention may do better just "going with her gut" and doing other research about pre/post-natal health, on the Internet and within the health literature, as opposed to focusing on the effect of Botox. Doctors who administer Botox (no offense) generally operate based on averages, studies and facts. Since most of the situations we discuss here are anecdotal, and every patient's experience is different, a doctor would generally average them into the mix without having alot of long-term experience of Botox patients who have nursed. And, frankly, alot of doctors haven't nursed so might not grasp the entire situation. In the early 70's, when I was pregnant and nursing, we had just come out of the 60's and natural health and organics, etc. were very much in the mainstream consciousness for the age-group of new mothers. Nursing was becoming popular again. Thus, in doing research (through La Leche League and the book "Let's Have Healthy Children" by Adelle Davis, among others - there were alot of them then), I made a personal commitment to my babies to deliver and nurture them in good health. We had an organic garden, made our own natural grain bread, went to yoga/pre-natal classes, had them with natural childbirth (no pharmaceuticals/epidural/spinal block), etc. Sounds quite old-fashioned now, since the world has changed but that was what we mostly did then. In the 30+ years since, baby formula has probably gotten better (I hope) and, let's face it, one of the main reasons for nursing is the bonding between mom and child, not just the breast milk. Cradling the baby while bottle-feeding can do *almost* the same thing. Nursing is tremendously gratifying, but it just doesn't make sense to me (personal opinion, for sure) to nurse if something called a toxin was in my body. Maybe it's just the 60's/70's speaking. Babies don't need a good voice from a mom for at least 9 months, unless a mom needs to call the doctor. They could benefit from a good voice about then also, when they start to make sounds (da-da) and when they are beginning to move around and need to be stopped in their tracks, with a clear vocal command, if they are getting into a dangerous situation. A good voice would be for other purposes. Appears your client is struggling to make the right decision for her baby, so kudos to you for assisting her and I hope the information we've offered is beneficial to her decision-making process. Best wishes to her. Have her write to us if she has Internet access and feels comfortable doing so. Lynne (AD-SD; RLN surgery; PVFM; Northern California)
L7martinez@aol.com
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Posted by: LauraH ®
04/21/2006, 17:32:31
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Hi Jessica,I was diagnosed with SD in '99 while I was pregnant with my first child. For the aforementioned reasons, my ENT would not administer botox during my pregnancy, and by the time I delivered, boy did I need it. After "speaking" with my pediatrician, OB/GYN, and ENT, I went ahead with my first injection 2 weeks after giving birth(none of my doctors were concerned with it, as they all felt that b/c botox is such a locally affecting drug, it wouldn't pose any problems.) I have continued to receive botox every 3-4 months, and nursed my first child for 12 1/2 months, and my second child for 10 months. Both are very healthy, with no negative side effects to date(they are 6 1/2 and 3 1/2 years old.) I certainly think that if there were to be side effects, they would have already manifested themselves.... Great question. I look forward to reading additional posts. Laura
ADSD/PA
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Posted by: amsterdam ®
05/03/2006, 15:40:15
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Dear all,Thanks so much for responding to my request regarding Botox and breast feeding which Jessica posted on my behalf.
Laura: your response is such a relief and I'm happy to read that your children are fine. In the meantime, I finally managed to contact a dystonia-pro neurologist here in Holland who said he didn't think there was a risk or problem at all. Also, my sister contacted the Ministry of Health and they too basically said they didn't think it was a problem for a combination of reasons. The pharmaceutical companies advise against because it's never been tested and therefore they're scared of claims. I am going to 'pump and dump' for 1 or 2 days just to feel a little more secure (I'm expressing milk in advance to cover those days). Laura, on a different note: do you think there's a reason why your SD manifested itself during your pregnancy? I'm thinking maybe hormonal changes could trigger SD? I had SD approx 8/9 years ago (I was 25 at the time), and it slowly but surely disappeared (after a variety of treatments, ao Botox) And, similarly, after birth of my son the SD has only become worse, To such an extent that I'm even inaudible alot of the time and it's simply better to not even try to speak because it's too tiring. I'm curious to hear your thoughts on this. Anyway, it's clear that there needs to be some testing done on Botox and breast milk AND the influence of hormones on SD. I'm going to try and convince the doctors here (why not simply express post-botox treatment milk, bring it to a lab and have them test it on traces of botox? Or is that too simple??) Regards, Aliefka
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Posted by: LauraH ®
05/04/2006, 09:20:59
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Hi Aliefka,Although I was diagnosed while pregnant, the SD started about 2 years before I became pregnant, so there isn't a correlation between the two in my case(the symptoms were minor initially, to the point that I thought it was just allergies affecting my voice, but then they progressed to the point that I knew medical attention was necessary.) Your suggestion regarding testing post-botox breastmilk makes perfect sense to me, which means we're either both simple, or absolute geniouses:) By the way, congratulations on the birth of your baby! Boy or girl? Laura
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Posted by: amsterdam ®
05/05/2006, 02:32:39
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Hi Laura!Baby boy! His name's Tristan and he's doing remarkably well (he started off sick and in an incubator which is why I'm pushing for breast feed). I understand from what you posted earlier on that you're still needing Botox and that it's been a couple of years? How's that working/feeling for you?
I'm hoping my SD will slowly but surely pass this time around again... If you like, you can email me directly: mail@aliefka.com Warm Regards, Aliefka
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Posted by: Paula B ®
05/03/2006, 19:49:43
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Hi Jessica,I have nursed all three of my children. Fortunately it was before I was diagnosed with SD, so I didn't have to make such a hard decision. I just wanted to mention, which you may or may not know, that from what I have read, that breast feading is better for both the child and his or her mother than formula. Not only does it create a bond between the both, but it can give the child a better immune system, and even prevent breast cancer for the mother. I have read and heard this many times. I am sure that my daughter, who is now 3, was not effected by my ADSD voice while I nursed her. This is just my opinion here. Thanks for listening, Paula
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