A Very Special Announcement

It has been some length of time since I last stopped by, I am sure this may lead to some of you wondering why. Well, between being a student and working, I have been blessed once more with a beautiful gift; I am expecting baby number three! As you may know, I have previously blogged about Epilepsy and Pregnancy (click here to take a peek); now I will be able to post my experience as I go along and answer questions in real time. I hope this helps some of you who are thinking about pregnancy, are currently pregnant, or are curious about pregnancy and Epilepsy.

 

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Wait, how long have you known? Why the wait?!

Truthfully, I found out back in November. I had the inkling that I was pregnant due to an increase in nocturnal seizures (which is typical for me and typical for some others to have an increase in seizure activity due to hormones). We were indeed actively trying due to other health circumstances that have been bestowed upon me. These health circumstance will impact my ability to carry children and sadly this will have to be my last pregnancy for the sake of my health. This time around, I was actively seeing an ob/gyn due to the circumstances and began taking folic acid at 4mg and prenatal vitamins before conceiving, as well as continuing with my B6, fish oil, and Keppra. During this time my Keppra dose also seen an increase due to being diagnosed with myoclonic seizures – which did aid in decreasing the frequency of these seizures. In due time, I had one large nocturnal seizure, noticed a huge decline in myoclonic jerks, and soon enough seen a positive pregnancy test. My partner and I could not be any more thrilled as we welcome a new child into our life.

Currently, I am 18 weeks and 1 day and due date is still set for August 1st, 2017. I wish I could say it has been smooth sailing, but we had some bumps early on. While my health issues reproductive wise do pose a threat, I was also diagnosed with a fairly large subchronic hemorrhage (abbreviated as SCH), also known as a subchronic hematoma. A SCH is an accumulation of blood between the fetal membrane, next to the placenta or between the uterus and the placenta itself. It can cause light to heavy spotting, but some women have no bleeding at all.  SCHs typically tend to affect 25% of all women in the first half of pregnancy and will typically resolve on their own. Unfortunately there is no direct cause or way to prevent this from occurring; it is one of those events that “happen” and is due to the egg slightly separating or tearing from the uterus. Sometimes you will also hear it referred to as a threatened miscarriage – as yes, there is a possibility for a miscarriage to occur.

(Photo pulled from Google as an example; for reference my SCH was the size of the gestational sac)

Thankfully enough, when my bleeding start I was at work and the ER was just downstairs. I tried my best to remain positive when I saw the blood, but as it got heavier, thoughts rushed back from my first miscarriage. I could not shake it, I could not bear going through it again. Unfortunately, and realistically, I knew there was nothing I could do but hope. So that is what I did, I kept faith and hoped. Soon enough I had an ultrasound, I was relieved to see the heartbeat. The bleeding had slowed so I assumed everything was going to be okay. Not the case. The doctor came in and explained the fetal heart rate was quite low and to expect a miscarriage within the week. My heart sank. It sank even harder because everything seemed okay. Everyone told me not to worry, everything looked fine. Moments later, here came the doctor to rain on my parade. I broke down immediately. I could not believe what I was hearing. The flicker I just saw would soon be blown out, yet again.

With a heavy heart I went home to await my early meeting with my new found life. I did exactly what I was told: rest, stay on pelvic rest, hydrate, and try to relax. Easier said than done, but I did just that. My ob/gyn did a follow up, that whole week seemed to drag. To my surprise, there was the flicker with a healthy heart beat. S/he proved the ER doctor wrong; they were holding on. Unfortunately the SCH was still there, but all that mattered was that flicker.

Due to this, I chose to delay announcing. I did not feel comfortable explaining to everyone if a negative event occurred. Around this time, I was still having nocturnal seizures (which is atypical for me) and did not feel like I was going to have a positive outcome. But here I am, with my little one snug inside, telling you my story.

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What about your Seizures?

As of lately, I had not experienced any tonic-clonic or myoclonic seizures. Although, I have experienced a couple more nocturnal and this is becoming concerning as usually all forms stop during pregnancy. To be fair, I did work more than my recommended amount due to missing days. Now I am back on my normal schedule and things have been fine.

I will not lie and say I have not had any anxiety building up as I approach the halfway mark. In my other blogs, I talk about some scary episodes where I had seizures and very well could of compromised my children’s life. This is the unfortunate reality of those who wish to parent and live with Epilepsy. Due to this anxiety, I am starting to look into seizure alert watches as well as requirements for a service dog. I do not think I will meet the requirements for a service dog realistically, but hopefully a watch will be reliant enough. My partner will also be moving in, which will be in itself a huge help and makes me feel safer. As he says “we’re in this together.” I also started to do yoga again and music helps as well with unwinding. I will do everything in my power to keep my family safe – even if it is from my own condition.

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               Doing anything different this time around?

Aside from the fact I was more proactive with folic acid and other supplements and intend to invest in a seizure alert system – I am planning on giving breastfeeding a chance. This will be a completely new experience that again, raises some anxiety. Since the birth of my first child and being strongly advised not to breastfeed while on Keppra, I have been following research carefully. With my second child, it was a more “up to you” response when I approached health professionals, so this time I dug as deep as I possibly could. One site stated that during lactation, doses up to 3500 mg daily produce low levels in breast milk and would not be expected to cause any adverse effects in breastfed infants (https://www.drugs.com/breastfeeding/levetiracetam.html). Luckily, I am under that quota at 2000 mg daily so it would be considered relatively safe by those standards. However, the infant will need to be monitored or drowsiness, weight gain, and developmental milestones as a precautionary. Although, in my case, my children were monitored for this regardless due to being on Keppra during pregnancy. If you have not had children yet, doctors may use the wording “sleepy baby” to describe babies born to mothers on Keppra. Babies tend to sleep more, are drowsy, and/or be more calm than those not born to Keppra mothers.

In another study in 2005, results yielded that levetiracetam does transfer into the mother’s milk, but does not pose any risk or harm to the infant due to very low serum levels. These serum levels were actually lower than what was found in the umbilical cord, therefore breast milk contains less than what the infant was originally receiving (https://www.ncbi.nih.gov/pmc/articles/PMC1363376) . A 2013 study that was published in the Italian Journal of Pediatrics also supports this claim if the dose is below 3000mg a day (or 3g a day as the study states; https://ijponline.biomedcentral.com/articles/10.1186/1824-7288-39-50), it will pose no harm to the infant .

You will find sites stating to not take Keppra while breastfeeding and this may become concerning. Unfortunately, the reason for this is due to lack of studies to completely verify Keppra as safe. You can equally find an number of testimonies of women who breastfed on Keppra and their child having no complications. I suggest talking to your ob/gyn/midwife as well as your neurologist. Often, we have to see a maternal-fetal specialist who you may also ask. From my personal experience, they could never give me an actual answer other than it being my choice. Although, after doing research as well as seeing other mothers who have been through it, I have decided in my circumstance that the benefits outweigh the risks.

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Do you have any information you would like to share?

Any questions you may having regarding Epilepsy and Pregnancy?

Leave a comment below!

Pregnancy with Epilepsy

Warning

Before I get into this I will place a warning for anyone who has had miscarriage. I will place a warning for anyone who does not feel comfortable about reading about loss. I will do my best to keep that section short. But there is a positive outcome. I promise.


pregnancy-and-birth-defects

My Experience.

So, if you have read some of my older blogs you will see that my first neurologist advised me to not get pregnant.  At 19 years old, with dreams of being a mother – sorry, you have Epilepsy in the form of generalized tonic-clonic seizures. Of course, some of you may know that I did not listen too well.

I am very keen on researching. I like to know what exactly I am getting myself into before I do it. I decided to look up pregnancy and Epilepsy and saw some sites recommending to take folic acid. There was and still is a lot of research promoting it. Fun fact: Folic acid can reduce the rate of neural tube defects by more than 70% (https://www.health.ny.gov/publications/1335/). These defects can be associated with antiepileptic drugs (AEDs) so many obstetrician/gynecologist  (ob/gyn) and midwives will suggest folic acid when you are trying to conceive.  The trick is to start the folic acid BEFORE getting pregnant because a lot of development happens in a short amount of time before you typically discover that you are pregnant. Some sources suggest starting folic acid a month before you start trying to conceive. I started folic acid when I started Keppra, so it was a few months prior.

But how much do you take? Again, recommended standard according to the Epilepsy Foundation is 400 mcg (0.4mg – http://www.epilepsy.com/information/women/all-women/folic-acid) to start. The dose will vary depending on your dose and type of AED – always good to visit an ob/gyn prior to conceiving, but if not starting on 400mcg (0.4mg) is a good place to start. This is where I started along with taking a prenatal vitamin, but when I finally saw an ob/gyn and had a new neurologist, they placed me on 1,000 mcg (1 mg) of folic acid. That was a big jump that I was not expecting.

It took a few months before I saw a positive test. I was not really sure if this was due to the AED or just coming off birth control. I was honestly fed up and about to stop; maybe my neurologist was right. Then one morning, I saw the strong pink lines, it was positive and I was over the moon. I could not believe this was finally happening. Then slowly fear sunk it – now what? At the time I was living in North Carolina, I quickly set an appointment up for my first visit with the local ob/gyn. After about two weeks I noticed some abnormal bleeding that soon turned bright red. My heart sunk; due to my studious nature, I already had an idea of what was to come.  I tried to ignore it and hoped it would go away. Every day it got heavier and eventually I ended up in the emergency room. I will never forget sitting in the ER with my head low, embarrassed. I sat quietly  for  hours until my eventual miscarriage occurred and the hospital ‘confirmed’ it. My heart broke. I felt like I was not a proper woman, that maybe I was not healthy enough to bare children after all. I tried everything to make sure I had a healthy pregnancy and still failed. I was filled with disappointment, anger, and just sat and thought “this is because of Epilepsy.” I was mad at myself, now wishing I had listened to my neurologist. Wishing that my Epilepsy would go away. Now I had to set up a new type of appointment with the ob/gyn; one I was dreading.

With fluctuating hormones in pregnancy it can produce or reduce seizures. My appointment was only a few days later and in the office it happened. I had a tonic-clonic seizure in front of everyone. Last thing I remember was standing in front of my partner at the time, next thing I knew I woke up in a hospital. If I was not embarrassed and disappointed enough to be there for a miscarriage, this topped the cake. They told me it was due to the ‘dropping’ of my hormones from the miscarriage. Wonderful, two things I did not want to talk about or deal with, but now I had to.

About a month later I was still spotting. I was confused. I thought maybe my body got really messed up from all the stress and went to a walk in; they confirmed I was pregnant but looked baffled when I told them my history. They immediately sent me to the ER. There was no way. I did not engage in any type of activity as everything that happened sent me into a depressive low. The ER ran blood work and the doctor came in and looked at me apologizing “actually, you have been pregnant this whole time. I am not sure who told you that you miscarried, but you did not miscarry completely.” He told me he thought I miscarried a twin. At this point I was over trying to have a child, I had no idea how to react. My partner’s face turned white and I was in utter shock. He went on to tell me my seizure was due to the rise of hormones and immediately checked to make sure everything was okay by ultrasound. Now what? I asked the doctor is the seizure would affect my child. He could not give me an explanation if the seizure would and started to avoid eye contact. He said there was not enough research to guarantee a healthy baby. Now what?

I moved back to my home state and immediately got an ob/gyn. A hospital in another state oversaw my pregnancy as they were preparing for the worst case scenario due to having Epielpsy. I had to go to weekly neonatal stress tests at an earlier rate than a typical pregnancy, had to see a genetic counselor due to my family history and to go over possible birth defects from Keppra, I was told a cesarean section (c-section) would be a better option as there is a risk I could seize during labor, and I had to go to different cities and out of state for more tests to make sure my baby would be okay. There was a plan made if the baby needed a neonatal unit, there was a plan made if I seized during delivery, there was a plan made if I needed a C-section – plenty of plans, but nothing really made me feel safe or consoled my worries for my child.

The day of birth came. It ended up being a scheduled c-section because my little one was breeched – the doctors were relieved almost by that. I was very adamant on wanting a natural birth. I was also adamant on breastfeeding but was told not to as the effects could be harmful with the medication; there was not much research done. Although, at the end of the day, I can happily say I gave birth to healthy baby girl and that is all that mattered. Although, after the c-section my body was trembling and they thought I might have a seizure so I could not hold her right away after the initial meet.

Fast forward two months, guess who had another seizure? Guess what that meant? I was pregnant; already about a month pregnant by that point. Again the same fears flooded back but there was some reassurance since the first time went alright. Doctors were well prepared after having my first child. There was no way out of a c-section this time with how close they were. Now I did not mention this the first time around as I came back halfway through my pregnancy but they increased my Keppra with both pregnancies. It was some time after the first trimester that the dose went up. They checked my Keppra levels more frequently to make sure I did not get to a toxic level as this could harm the baby and myself. I was still on folic acid from before as I requested to be so there was no change there. This pregnancy flowed a lot better because they were well prepared. Again, a second hospital out of state watched over my pregnancy. Again, I had to travel out of state for testing. I was placed into a research study on the effects of Keppra on pregnancy this time around, still no new information could be given. Everything went fine..until birth.

Now I am not sure exactly what happened but I remember being halfway during the c-section and feeling dizzy. I remember my body temperature dropping and I started shivering. My heart rate and blood pressure was doing something they were not supposed to because the nurses had a look of concern across their face and kept asking me “are you okay? keep your eyes open okay” There were student nurses in the room and they whisked them right out immediately. They hurried their way through the c-section and started pushing things through the IV I did not remember from before. They started getting concerned I might seize and did everything to get my temperature back up and body under control. All I could think was “please don’t seize, not now, keep it together.” Luckily nothing came of it. Again, another healthy baby girl. But I guess my first neurologist had a point, it can be risky to give birth with epilepsy.

Again, a month or two after the birth I had another seizure. This one scared me. I did not remember where I had my newborn last. I had no idea if I fell with her. I had no idea if she was in my room or hers. I had no idea where I even was for a few moments. I rushed in and out of rooms and saw both my children asleep peacefully in their separate beds. They were safe. I sat by my door and just cried. I knew it was not going to be easy, but I did not think it was going to be this tough. No, I was not pregnant this time. It was due to the fall of the hormones.


What to remember if you are planning to conceive

  • Seek an ob/gyn prior to becoming pregnant and trying to conceive as well as informing you neurologist. You want to set up a plan and you want to make sure you have enough folic acid to promote healthy growth of the developing fetus and some studies show this can take about a month prior to build up enough in your system. You will also want to take prenatal vitamins to make sure you are getting enough nutrition not only for yourself, but your little one too.
  • Do not stop your medication if you become pregnant. While the possibility that some sort of defect or issue can occur is scary, what can be more worrisome is not knowing how a seizure effects a fetus. You need to be as healthy as you can be and take care of yourself first and try to limit the amount of seizures/seizure activity you have
  • Pregnancy will affect the amount of medication you receive. As the pregnancy goes on, you will more than likely see an increase like I experienced. This is due to multiple factors involving pregnancy – including weight changes, hormones, and the developing fetus.
  • If your seizure have been well controlled – do not be afraid to ask your specialist if you can decrease your dose before trying to conceive. This might ease your mind and limit stress levels but even if that is not an option for you, you can still go on to have a healthy pregnancy.
  • Breastfeeding is possible – but discuss this prior. Some medications advise against it as the effects to a newborn are not well known or are known to have adverse side effects. There are options such as trying a different medication, lowering the dose, temporarily coming off the medication, donor breast milk, or doing formula if none of the option are applicable.
  • Do not be afraid to ask questions. This is new and can be a scary experience. Feel free to ask all the questions you need.

Facts Behind Epilepsy and Pregnancy

  • 15-30% of women will have an increase in seizure activity in the first and third trimester
  • Seizures that occur during your menstrual cycle will no predict if you have an increase in seizure activity during pregnancy
  • Women who have been seizure free for 9 months prior to pregnancy have a high chance of staying seizure free during pregnancy
  • Partial seizures do not carry as much of a risk as generalized seizures. Tonic-clonic generalized seizures carry more of a risk to mother and baby if a seizure was to occur
  • Most specialist feel that AEDs are a safer option than risking a seizure
  • There is a 4-6% chance that a malformation may occur that cannot be predicted
  • Family history of congenital malformation will raise the risk of a malformation occurring
  • Vitamin K may be give to women with enzyme-inducing AEDs in the last month of pregnancy
  • 90% of women with Epilepsy go on to having healthy babies

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What is your experience with pregnancy and Epilepsy? Leave a comment below!