Ladies!

[ZappedCanuck]

My husband and I are doing some family planning.

Are there any pointers or advice from any ladies out there in regards to their seizure activity and nutrition measures they were offered?
Did your seizure activity change during pregnancy?
Were you asked to change anything in your diet? (folic acid, etc.)
Feedback would be great, eh.

 

[Bernard]

Well, I'm not a lady, but I do have some experience with the family planning.

Stacy was told not to change up her diet as she was already eating healthy. She started taking a good prenatal vitamin before conception. We were told that the best formulations are the ones that you are supposed to take 3 times a day (it's not a superconcentrated dose that you take one time and 90% of it goes right through you).

Stacy had no seizure activity with child #1, but became very active after delivery. Her seizure activity got worse while pregnant with child #2.

Pregnancy will disturb your hormones and this may help or wreak havoc with your seizures. Another potential problem is disturbed sleeping patterns once you are pregnant. Stacy did not sleep well at times and disruptions in her sleep pattern are problematic for her.

I had to leave a large throw pillow near the restroom when Stacy was pregnant with #2 because she got in the routine of waking to pee at 3-4am every night and would occasionally have a seizure while on the throne (once every two weeks or so). I had to jump out of bed and catch her before she hit her head on the floor and set the pillow in place so she didn't hurt herself.

One thing that Stacy swore by is Red Raspberry Leaf tea to short circuit nausea. She would start getting nauseas around 5-6pm every day if she had not eaten dinner yet. A cup of the tea and the nausea went away and she could eat dinner without problems.

You should definitely talk to your doc about the risks of birth defects if you are taking any AEDs.

 

[ZappedCanuck]

Hormones

I don't know if your wife or you have any feedback on the following. Here it goes: I've delt with catemenials since I hit puberty and I get nailed when my glucose drops. So, I know there are a number of endocrine related functions which will give me a run for my money. Our biggest challenge is just for me not to miscarry this time. But, here's a concern. Because my seizures get a lot worse with my hormone levels, I've been doing a lot of swiping with my magnet the last week. I'm wondering if the swiping causes problems. My VNS is set a lot higher when I swipe than just the regular setting. (one of the benefits of seizing is that I don't feel it when it goes off. my aura's just long enough to get my magnet out. But, by the time I'm cognizant again, everything's over with). I'm finally on monotherapy due to trying to conceive and I'm doing all I can not to take the Rxs that are written PRN just to limit the drugs in my body. The high risk doctor said to keep away from the Diastats for certain.

 

[Bernard]

I wish I had some answers for you, but your situation is a bit beyond my sphere of experience.

I'm not aware of any studies done with respect to the effect of a mother's VNS (vagus nerve stimulation) on a developing fetus.

 

[Birdbomb]

*Pre-clinical Study, Teratogenic Effects: There are no adequate and wellcontrolled studies of VNS Therapy in pregnant women. Reproduction studies have been performed using female rabbits stimulated with the commercially available VNS Therapy System at stimulation dose settings similar to those used for humans. These animal studies have revealed no evidence of impaired fertility or harm to the fetus due to VNS Therapy. Because animal reproduction studies are not always predictive of human response and animal studies cannot address developmental abnormalities, VNS should be used during pregnancy only if clearly needed. Although the operating ranges of the VNS Therapy System and
fetal monitors are dissimilar and no interaction would be expected, testing has notbeen performed. Therefore, the potential may exist for interaction between the VNS Therapy System and fetal monitoring systems.

This is from the Physicians Manual.

http://www.vnstherapy.com/depression/hcp/Manuals/default.aspx

 

[ZappedCanuck]

Thanks

Thanks, Birdbomb -

I somehow expected that was the case. Like the high risk doctor & the neuro have stated, regardless of my reluctance to use my magnet when I'm having bad days, my own well being has to take precedence over everything else or I won't be healthy enough for the baby. (My hormones are making each day seizure filled as it is). I'll keep trying to minimize my Rxs that are written PRN and pray that Someone greater than myself is in control and keeping an eye on things. As many doctors as I see right now, I trust the Master Physician is the one who will get me through this pregnancy safely.

 

[Herb]

ZappedCanuck,

The following information has been reported and may be of interest to you. I might also suggest trying to contact the doctor(s) reporting the information to obtain any current information, details and/or suggestions.

Pregnancy and delivery while receiving vagus nerve stimulation for the treatment of major depression: a case report

http://www.annals-general-psychiatry.com/content/4/1/16

Pregnancy/Gender Issues

http://www.blackwell-synergy.com/doi/abs/10.1111/j.1528-1167.2005.460801_12.x

Improved Care for Pregnant Women With Epilepsy

Women with epilepsy who worry that their current therapy poses a risk to their unborn offspring are encouraged by the recent U.S. Food and Drug Administration action concerning the lack of teratogenic effects in one form of therapy. The agency approved a change in labeling for VNS therapy to inform women and their health care providers that abnormal physical or developmental effects were not observed in offspring during animal studies.

VNS therapy involves an implanted device that stimulates the brain through tiny electrical impulses transmitted through the vagus nerve. The device is implanted near the collarbone with a subcutaneous lead to the nerve at the side of the neck.

"Pregnant women with epilepsy have a critical need to know how epilepsy therapies may impact the physical development of their child," said Eric Hargis, Epilepsy Foundation president and CEO. "The Epilepsy Foundation welcomes this clear and positive change in labeling of VNS Therapy and the expanded understanding of this treatment that it reflects. It should help guide women and their providers in making informed decisions about choosing the best epilepsy treatment options."

There are approximately 1 million women of childbearing age with epilepsy in the U.S. More than 90 percent of babies born to these women are normal healthy children. However, the risk of having a child with birth defects among women with the disorder is two to three times greater than for women in the general population.

http://scholar.google.com/scholar?h...ub.com/cgi/content/full/7/4/368+vns+pregnancy

Good luck to you and yours and best wishes for a healthy child.

Warmly,
Herb