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  #1  
Old 10-12-2009, 06:32 PM
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I am 25 and was just diagnosed today with simple complex seizures. I am lost... I wanted to get pregnant next year but am afraid of the medications. Anybody help with options?

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Old 10-12-2009, 11:08 PM
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Hi mom22boys!

Welcome to the forum. There are a number of folks here who have children while on anti-epileptic drug meds. The newer meds (Lamictal and Neurontin among others) have a good track record. It's a matter of working closely with your doctor and neurologist to monitor your condition throughout the pregnancy. #1 thing to do now: take folic acid.

I'm sure the parents on the site will chime in with good advice. Feel free to search for more information on specific topics, and also chat, vent, ask questions, and share.

Best,
Nakamova
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Old 10-13-2009, 10:26 AM
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Hi mom22boys!
I agree with Nakamova. I was diagnosed on October 6th this year, and when my neurologist talked to me about drug options he went over what would be beneficial for me to be on should I choose to become pregnant in the future.

He went over 2 options with me. Valpouric Acid (spelling?) and lamictal.

He said the Valpouric would be most effective in controlling my seizures faster but would be most harmful to a baby and had side effects like breaking of my hair etc.

With Lamictal (or Generic version Lamotrigine) he said was the least harmful to a baby and also had the least amount of side effects (usuallty tired or blurred vision. Occasionally the severe rash that you would need to go to the ER for.) Down side was that it would be ramped up slowly. (because of the risk for the rash) This is the one I chose.

Also when you speak to your neuorlogist about the meds, make sure you ask what the generic names are for the med you chose and if he would prefer you to be on name brand or generic. If he has a prefrence make sure he writes no substitutes on the Rx.

I was told this after I got my Rx and I wish I knew otherwise. I'm seeign him again ont he 20th to make sure.
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Old 10-13-2009, 11:36 AM
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Hi mom! Welcome to CWE. The talk about meds and pregnancy is definitely one to be had with your doctor. 6 years ago, when I got married, my neurologist, hubby, and I had the talk. It was actually started by my doc. He asked if we were ever considering having kids. My hubby and I both said that we would like to some day..but not at that time. The doc suggested that I wean off of depakote because of it's effects on babies (and because I had "outgrown" the type of seizures it was controlling). He told me to start taking folic acid immediately. 8 mg. a day. We also discussed which meds I could switch to. He warned that there is no such thing as a 100% safe med for seizures. But that the dangers from seizures (in my case) were higher. ( I have grand mals...and I tend to get hurt during them...) Last year, I got pregnant. And this July I gave birth to a perfectly healthy 9lb 9oz baby girl. My personal opinion is that she's the most beautiful baby in the world. ( But I'm allowed to think that....I'm a first time mom... ) The neurologist saw her recently and was just beaming as he played with her toes and "talked " to her. (Seeing a 60 yr. old doctor who is normally a sourpuss sitting there and "ga ga"ing and cooing with a 3 month old is hilarious! )

yes, there are some risks you take if you take meds while pregnant. But you have to step back and research the issue. For me, it was important that I stay as seizure free as possible. the meds helped that. My neurologist and I didn't want to switch to the newer meds because honestly, alot of them haven't been around for a lot of research on pregnancy and their effects on babies. I chose the med I did (Dilantin) because it has a 10% chance of effecting the baby. That means 90% chance of having a child that is perfectly healthy! (Yes, I try to see the positive about things...)The cleft palate and facial abnoramlities that can happen with dilantin were all things that were covered by my insurance...so if she had had cleft palate, my hubby and I could have gotten it taken care of. Yes, I'm breastfeeding...and yes, meds can leach into breastmilk. But my neurologist and OB/GYN say that the breastmilk is doing more good then harm. Even with the meds, breastmilk can raise a baby's IQ 20 points! That, and the fact that breastmilk is phenomenal for a baby's immune system, were the reasons I am breastfeeding.

Yes, it's possible to get pregnant and have a good and healthy pregnancy. The things to remember are to take care of yourself. Make sure that you eat healthy, take your vitamins, try to stay as stress free as possible ( and this means make sure you have a great support system set up...and use it! ), and in my personal opinion think happy and positive thoughts.
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Old 10-13-2009, 12:13 PM
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Rae1889 wrote: With Lamictal (or Generic version Lamotrigine) he said was the least harmful to a baby and also had the least amount of side effects.

My reply: Hello Rae1889, I was just wondering how you are getting on with the Lamotrigine tablets because I will be starting them as of tomorrow alongside my Keppra? The idea is for me to eventually come off the Keppra tablets because they are causing my hair to fall out badly. Iím just worried the Lamotrigine tablets will cause me to have a rash because I have sensitive skin. I will be on 25mg for 14 days, then 50mg and so on. Thank you for your time.

mom22boys wrote: I am 25 and was just diagnosed today with simple complex seizures. I am lost... I wanted to get pregnant next year but am afraid of the medications. Anybody help with options?

My reply: Sorry mom22boys I canít help you with your question though hope you find this site very useful. The people on here are very friendly. I was diagnosed with epilepsy at the end of July 09. I will be 25 in November. I hope you are ok.

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Old 10-13-2009, 01:29 PM
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Originally Posted by Deb12345 View Post:
Rae1889 wrote: With Lamictal (or Generic version Lamotrigine) he said was the least harmful to a baby and also had the least amount of side effects.

My reply: Hello Rae1889, I was just wondering how you are getting on with the Lamotrigine tablets because I will be starting them as of tomorrow alongside my Keppra? The idea is for me to eventually come off the Keppra tablets because they are causing my hair to fall out badly. Iím just worried the Lamotrigine tablets will cause me to have a rash because I have sensitive skin. I will be on 25mg for 14 days, then 50mg and so on. Thank you for your time.
Hi Deb12345! I have seen no side effects yet except as far as the drowsy effect. BUT I am taking it slower than you as this is my first anti-epileptic drug. I'm taking 25mg every second day for 14 days, and then every day for 14 days. every two weeks adding another pill etc. I have extremely sensitive skin and brusie easy too. But I am not worried about the rash as i was told it has less to do with the skin as it does with how this drug is absorbed. When your body cannot tolerate the drug or it becomes too much in the system you become allergic. The rash is just the noticable part of the allergic reaction.

So far I really like this drug. except that it has eliminated my auras.
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Old 10-13-2009, 02:21 PM
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Yeesh, judging by the dose changes described here, my partner's doc upped his lamotrigine way too far, way too fast. Same with the Neurontin he was prescribed later -- that might be why he had such a bad reaction to the latter drug.
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Old 10-13-2009, 02:48 PM
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Thanks! more questions..


So my husband and I got to talking and all your information has been helpful...a few questions though...

Has anyone ever had simple complex seizures and tried the ketogenic diet?

What's your take on it?

The doctor recommended Keppra, as it would be the 'safest' if we were to try and get pregnant(at this point it looks like it has been taken off the table for a year or so) as I will only be turning 26 next month.

I guess I am just lost, as to how this can all of a sudden start, I have never had neurological symptoms before?

Any other 'natural' ways to help? I am not against meds, just would like to try other ways before them.

Deb12345 - I am just wondering what got you started on the Keppra? were there reasons behind that particular drug?

skillefer- Thanks for your story, I am sure that I will think of it when I decide which route to go! I am sure that I can add you guys as a great support system too

Thanks guys!
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Old 10-13-2009, 03:07 PM
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mom22boys wrote: Deb12345 - I am just wondering what got you started on the Keppra? were there reasons behind that particular drug?

My reply: Hello again, it was my Neurologist who put me on 1000mg Levetiracetam (Keppra). I trust him completely. I started on 250mg and gradually increased to 1000mg. He put me on Keppra because at present I am under investigations regarding my heart too, and Keppra has no side effects on the heart. Personally I would say go for it, though don’t know the side effects it would have on an unborn child. Sorry! If it wasn’t for my hair falling out I would of loved to have stayed on Keppra. My Neurologist said there was only a 7% chance of someone’s hair to fall out on Keppra but unlucky for me I am one of those 7%. I wish you all the best. Kind Regards Debbie

Last edited by Deb12345; 10-14-2009 at 05:30 AM.
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Old 10-13-2009, 11:04 PM
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Re diets: The ketogenic diet is mostly used for children. For adults there are the GARD diet, MAD diet, as well as the Mediterranean diet -- all of those can be beneficial for your overall health and some folks have found they have helped in reducing or controlling seizures. The results take time, and require consistence and patience.

Another "natural" approach to consider is neurofeedback, which is basically re-training the brain to avoid bad brainwaves and generate good ones. At this point neurofeedback isn't covered by most insurance plans, and it can be tough to find a practitioner, but is worth considering because it is non-invasive.

I recommend that you read "Epilepsy: Towards a New Approach" (you can this book on Amazon). It covers quite a few self-care techniques that can help reduce seizures.

Best,
Nakamova
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Old 10-15-2009, 11:25 AM
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Epilepsy can be puzzling. My doctor gave me the label of "Idiopathic Seizure Disorder" which is fancy talk for "you have seizures but we arent't sure why..." I know...inspires confidence doesn't it?

Things that can cause seizures are head injuries, spiked fevers as a child, as well as it being a response to allergies to certain chemicals and foods...this isn't all the causes...just some. You'll find that alot of people here are like you. We didn't start seizing while we were infants. Some weren't diagnosed till they were in their 30s or 40s of even later.

As for natural methods...check out the alternative treatment thread. It talks about all sorts of interventions...and if you have questions, feel free to ask. Lots of people here have researched or are using some of the alternative treatments to compliment their meds. Good luck.
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Old 10-15-2009, 12:06 PM
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Mom22boys

I feel the same way. I just was diagnosed in July 2009. I wanted to look into the possibility of having children but I'm extremely worried about the effects of antiepileptic medications on a baby. I'm only 21 so I do have time but Epilepsy has changed my entire outlook on life. Good luck with everything, you'll be in my prayers.

Last edited by Danie; 10-15-2009 at 12:11 PM.
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Old 10-15-2009, 12:33 PM
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Hi there


mom22boys.

I've used the GARD diet myself, for a number of years, and then I had to switch to an even stricter diet, the celiac diet because I was diagnosed as a celiac patient in April. Both are similar, but the celiac is VERY strict, at least in my case.

The GARD diet has helped me keep seizure control quite well--as long as I stayed on it. Yup, I'm on meds, too, but the diet to aid in control was needed, and the doctor says it helps. Right now, as I'm learning to make more involved foods on the celiac diet, and baking things for myself now, my body is becoming more normalized, and the seizures, which started to go out of whack again, are back in control.

Neurofeedback is something else to consider........as Skilly suggested, you might want to check out the threads on it, as it is an alternative treatment.

Welcome to CWE, by the way, if I haven't welcomed you already.

Take care!

Meetz
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Old 10-22-2009, 07:59 AM
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to mom22boys:

Medication: the lesser of two evils, as opposed to a seizure during pregnancy. I have two grown children whom I took Dilantin with during pregnancy. They are both dileriously healthy. Stay away from processed foods as much as possible. The above mentioned diets are to our benefit. Any relaxation exercises you can add to the mix is helpful. Best of luck and stay in touch!
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Old 10-24-2009, 04:47 PM
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My neurologist and OB-Gyn consultant both told me that as well as Lamotrigine (Lamactil), Gabapentin (Neurontin) has a very good outcome during pregnancy. Also you should be on high-dose folic acid from your doctor (the ones you buy over the counter are only 5 microgrammes, the ones you should take when trying for a baby if you're on epilepsy meds is 5MG). Good luck, and try not to worry, most women with epilepsy (if their seizures are fairly well under control) have perfectly healthy babies.
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Old 10-28-2009, 04:56 AM
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My doctor and I discussed which was best for me and decided stopping medication all together was worth a try as even though I had grand mal seizures I did not have them often and I "knew" when they were coming 95% of the time. I did not have any seizures until the day of my daughters birth and was able to give them 4 hours notice that it was going to happen (due to lack of sleep during labour). I now have another daughter and everything went like clock work. I would take your doctors advice as while I was lucky to be able to go off my meds I am a very rare case. Good luck, motherhood with "e" is just like normal except I made sure my children slept through the night very early on!
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Old 10-28-2009, 05:14 AM
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Originally Posted by mom22boys View Post:
I am 25 and was just diagnosed today with simple complex seizures. I am lost... I wanted to get pregnant next year but am afraid of the medications. Anybody help with options?

Thanks
Hi my name is Ruth, I am 66 years old. I have had epilepsy for 60 years now. I have 4 children and 3 grandchildren.

I had epilepsy when I had my children. I am not sorry. I love all of them. I did not think of the medications when taking my medicines. You have to keep taking your medicines. I can only speak from my experiences.

Welcome to the forum. It was made out of love by Bernard for his wife Stacy.That love has permeated throughout the whole forum.
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