Facing the challenge of having epilepsy and being a parent

Guest post by Ashley Mosquera

familyEpilepsy is one of the most misunderstood and most hidden brain disorders in the world. Whenever I say I have epilepsy people automatically think that when I have a seizure I flop around like a fish out of water and swallow my tongue. I do not do any of those things–I actually suffer from complex partial seizures. That means I do fall to the floor (or anywhere for that matter) and my consciousness is impaired.

For those who are not familiar with the disorder, there are many different types of seizures. Those in which you jerk around on the floor are called Grand Mal seizures. Having a seizure disorder is very dangerous since we could have an “episode” at anytime, anywhere. All of us with epilepsy have different things that trigger seizures. For example, my seizures are triggered by stress, lack of sleep, different light patterns, physical exertion–even some smells making my everyday activities a gamble.

I was diagnosed on my 16 birthday with epilepsy–not exactly the words I wanted to hear. I knew one day I would be faced with the thought of having kids and this would be a big mountain to overcome. Given that pregnancy is hard enough on a woman’s body, throwing in epilepsy would make it that much harder and this scared the living shit out of me.

Well, one day I ended up with the sweet surprise of pregnancy. First, excitement set in and then, the sound of all my doctors yelling at me filled my head. Once my doctor confirmed I was pregnant, the craziness started. I was booked to see my neurologist & the obstetrician at 15 weeks pregnant. Normally you see your OB at 26 weeks. I had to go for MRIs and EEGs once a month. I was also taken off my medication since the side effects to the baby could be fatal. We were told the chances of our baby having a cleft palette or spina bifida are pretty high given that I have been taking anti seizure medicine for 7 years. Now, passing epilepsy on to my baby was another risk we were facing, but my fingers and toes where crossed that my baby would never have to go through what I had already endured.

My pregnancy was not piece of cake. I had countless doctor’s appointments to make sure the baby was okay and to make sure that I was feeling fine. Since I was off my medicine, I was trying not to think about the fact that I could have a seizure triggered by my body going through this change–but my doctors kept reminding me everyday.

At 32 weeks pregnant I was taken to the hospital with severe pains in my stomach. My OB came into the room and checked me over, and it turned out that I was starting to go into labour due to my body being stressed. The doc immediately started to push meds through my body to stop the labour. Thankfully she stopped Xavier from coming out too early.

She also talked to me about my final birth plan. She decided that being induced at 38 weeks (if I could make it to then) would be best for the safety of the baby and was afraid that I could have a seizure brought on by stress. The doctor told me that she would be giving me an epidural no matter what due to the fact that labour could throw me into one of my episodes. I was also ordered to bed rest for the final weeks of my pregnancy.

On November 10th 2009 at 3:45pm I gave birth to my son Xavier. I ended up 38 weeks and had a completely normal delivery despite all the worries the doctors had. He also came out without any medical issues. He was healthy and absolutely handsome. I could not believe I had just given birth to my son, and all my fears of having a seizure during labour where gone. But the threat of having seizures was, unfortunately, not, and a few weeks after giving birth I had a seizure at 3 or 4 am due to lack of sleep. Luckily, I was not holding my son at the time of the seizure.

I have been medication free for over a year now and have had only 1 seizure since being off of it. The threat is still there every single day but I try not to let it take over and stop me from enjoying spending time with my son. I go on living my day raising him and hoping that he will not have epilepsy.

Comments on Facing the challenge of having epilepsy and being a parent

  1. Thanks so much for this article. I’m 20 and love this website and also have partial complex seizures and have always been told not to worry about anything pregnancy related since it’s so far off (let’s hope anyway!)

    But thank you, one for bringing to light that not everyone falls down and twitches (I feel that I have to explain this daily) and two, for your insight. Congrats on the year without medicine, keep staying strong!!

    • you are very welcome!!!! I am glad that I can help give some insight to others with Epilepsy. It is so misunderstood…and I understand eplaining yourself to people who do not understand.It gets tiring explaining all the time but it is good for others to know that not everyone with Epilepsy are the same. Thanks for the congrats too!!!

  2. I’m so interested to hear about your experiences being pregnant with epilepsy! My epilepsy is completely controlled by my medication, something I am thankful for everyday as I went 10 years not knowing I had it and trying to deal with absence epilepsy (‘petit mal’ seizures) by explaining it away as a teenager. I am not planning a baby for another few years, but my doctors give me knowing looks and talk about coming off my meds if I want a baby at some point. This frankly sounds terrifying to me as I have grand mal seizures right away if I even miss one dose. On the other hand, I don’t want to jeopardise my future child with deformaties in the womb. It’s such a minefield. So good to know you went through pregnancy with relative ease.

    On another note, I have found I rarely have to tell people here in the UK that there are different types of epilepsy, they seem to know. I wonder why that is? I don’t think we’re particularly medically enlightened over here!

    • I’m also well-controlled on meds, starting to talk babies. Some meds are safer than others. Lamictal is one of the safest, but its effectiveness is related to hormones, so the dose needs to be checked frequently during pregnancy. My neurologist told me that I’ll probably be considered “high risk”.

      I plan to stay on my meds, get checked frequently, and it sounds like the odds are good for having a healthy pregnancy and baby.

    • I’m from the UK and the reason I know about different types of seizures is because I volunteer with St John Ambulance – maybe you’ve met a lot of people trained in first aid over here?

      • You know, because my epilepsy is under control, I usually only have to tell people in certain circumstances, like at a new job or when staying away for work. These people tend to be the first aiders, so that is an entirely plausible explanation!

  3. I have mild epilepsy with seizures that sound similar to yours. I have never had to take medication but am also triggered by things like smells and stress. My doctor “strongly suggested” that I have an epidural during birth and that shocked all my friends who are all natural birth advocates. But you have to do what is best for you and your baby. I didn’t have a seizure during my pregnancy or my birth but I did go with the epidural. I’m so glad that you shared your story!

  4. Wow, I’m so glad to read about other peoples experience with pregnancy and epilepsy-Great article! I’ve been epileptic since I was 8 with good medication control, and finally diagnosed with JME at 27. I have grande mal, petit mal, and myoclonic jerks, the last two I didn’t realize I was having until the JME diagnosis. I’ve spent so much time in my life having explain myself to people because of seizure characteristics and side effects I experienced on various meds . My first pregnancy was high risk with both JME and with the discovery that I was carrying twins! I was followed very closely the entire time by my neuro and neonatologist with not much data about the effects of Keppra on pregnancy. On May 8th I gave birth to 2 beautiful and healthy baby boys by emergency c-section, born a month and a half early. I’m struggling with sleep right now and getting enough of it because that’s one of my big triggers. So far things have been going well. It’s fantastic that you’ve been doing so well med free!

    • I was diagnosed with JME too! But over the years the myoclonic jerks have stopped and they now think I have generalised idiopathic epilepsy. Keppra is my drug too, and like you, the doctors can’t tell me much about it as it’s so new – great to hear you had a healthy pregnancy. Congratulations on your twins!

  5. I am so glad that I decided to click on the Offbeat Mama tab from the Offbeat Bride!

    I was diagnosed with epilepsy 9 years ago and have had great success with Lamictal to manage seizures (only 1 since starting meds!). This is so helpful to hear the stories of others who have seizure disorders and have made it through pregnancy successfully. I’ve talked it through with my neurologist and my GYN about the procedures/cautions, but this is a perspective that neither of them could share with me. Thank you and I look forward to moving from an offbeat bride to an offbeat mama!

  6. I’m so glad you pointed out that there are different types of seizures. I believe many people are more familiar with Grand Mal seizures, as they are the ones dipicted on TV. There is a lack of awareness that seizures take many forms, and people can go for years with un-diagnosed epilepsy because of it.

  7. I am stunned at how your post could be one that I wrote myself and the same story of my pregnancy. I too was diagnosed with epilepsy at 16 and have complex partial seizures. I was so worried my whole pregnancy and ended up with an induction and C-section but a very healthy 8lb10oz boy. I still struggle with my seizures but know that anything is possible as long as you are aware of your body and triggers.

  8. Great article – i love offbeat mama. Im getting married now and having this conversation with my fiance was terrifying. He was unflappable …as usual- but Im still worried. Mainly because my gyno is constantly reminding me not to get pregnant and my neuro is worried I will. I finally stopped my meds because they kept telling me that it would hurt a baby and had no answers when I asked how? I only have petit-mal, I’ve never had a grand mal so the risk, for me, was less to have a few small seizures than to risk damaging my future children. Obviously, I’m fortunate enough that my current medical condition isn’t as complex as yours but I really appreciate your words of comfort…Doctors can be scary.

  9. Thanks for starting this discussion! I was diagnosed with epilepsy at age 13. My grand mal seizures are well controlled with medication, so life with epilepsy was pretty normal for me until I decided to get pregnant. My EEG results indicated that I should stay on my meds, and I was kept on Tegretol, which indeed can cause neural tube (cleft palate, spina bifida) birth defects. I tried to stay positive, but knowing I was taking scary meds made each test and prenatal appointment a bit worrisome. Luckily all tests came back great and my daughter was born very healthy. I still worry about her having epilepsy herself, but I will deal with that as it comes, I guess.

    From reading the responses, it seems like some people may have not been so supported by their MDs regarding getting pregnant. Obviously each medical situation is different, but finding the right doctor is key. There are meds that you can try that are safer in pregnancy. And taking high doses folic acid in early pregnancy (prescribed by doc) can really prevent some of the neural tube defects. If you have epilepsy and may become pregnant, you should be on that–just in case. All of my many neuros have said that.

    Also, there is a great study being conducted right now for women with epilepsy who are pregnant and on meds. I participated and it was easy. There is very little comprehensive tracking of the effects of meds on a pregnancy and baby, so this study is really important. I think you can participate even if you aren’t pregnant any more. You just do 2 phone interviews and release your medical records. http://www.epilepsyfoundation.org/research/aedpregreg.cfm

  10. I M glad you shared your story. I have suffered with complex partial epilepsy all my life. I’m now 51. I had two full term pregnancies. with my first one I went through the full term. But it was definitely difficult. I had close to 300 grand mals / not called tonic clonics. ( which makes me think of an alcoholic drinks. so friggin dumb) I was thankful I always landed on the butt first. so my baby was not injured. But my medications could have her major problems that could never have been corrected. They said she could have she could have been born in a vegetative condition, or mentally impaired, or with some disability.They took her by c-section. They told me the natural birth would have killed me and put her in serious danger. As it was my original doctor wasn’t there and his partner came in. I went in planning to have the c-section he induced my labor instead. then put me on pitocin which epileptics can;t have. But he left me on it for 14 and a half hours. The whole thing was stupid. They DIDN’T have on my chart that I’m an epileptic. They didn’t check in on me. It was an anesthesiologist that went into the room and stopped the drip after finding out my situation. I had gone through 3 extreme grand mals before that time. My mom and Gramma were in the room and with gramma was a nurse but no one came in to help. They just didn’t believe them it was dumb all the way around. I should have gotten up and rescheduled before I ever saw the idiot dr. Then I wouldn’t have gone through all of it. The dr finally came in and had to do the c-section . He seemed panicked and rushed . He nearly cut my daughter;s finger off.
    Then I had three miscarriages between my two live births. During the my second full term pregnancies I saw a different dr. My first visit with him he said that I couldn’t have another pregnancy. So he kept a close watch on me. and did periodic stress tests. I hd 190+ grand mals , again landing on my butt first. I had him through c-section as well. My daughter was 4 years old at that time and was quite helpful for me. By then she knew what to do for me when I went through an episode. so except for lifting him in and out of the highchairs and cribs she’d do everything else if needed.
    My husband was always helpful and understanding of my situation. He could be helpful to me in various ways but he wouldn’t change dirty diapers if andrea or myself could do them.

    My triggers were , high stress levels. Hormone swings, fake sweeteners. extreme temperatures whether it was heat or cold. There were other things as well.
    But God watched over me and kept my babies safe and healthy. With no permanent problems. and were in honor classes in school.
    My biggest problems still to this day, is people letting me work for them. Now that I had controlled health issues.

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