Q & A

Many people who read my blog have been sending in questions. I figured this was the perfect outlet to begin answering any questions you may have. If you would like a topic covered, you can either message me on the Facebook group, "Epilepsy and Pregnancy" (it's a closed group, so you'll have to join) or by leaving comments on one of my posts. I promise to get to them as they come in.

Disclaimer: I am NOT a doctor and have no medical background. This is just my findings on each subject. Before making any decisions regarding your health or your child's, please consult with your neurologist and physician.

Question: What effect does anti-epileptics have on a baby while breastfeeding?

Answer: This is a great question. I have researched long and hard about this over the years because it's a constant worry of mine. The consensus from doctors seems to be that it depends on the drug, the dosage and the doctor's beliefs. Many of the findings from the studies done by the National Library of Medicine and National Institute of Health were inconclusive because the mothers in their studies stopped breastfeeding early and they couldn't gather enough information.

Information on initiation and duration of breastfeeding while on anti-epileptics can be found here.

The Epilepsy Therapy Project released their findings of children who had been breastfed by women on anti-epileptics and effect on the child's IQ in November 2010. It was believed that the anti-epileptics could decrease the child's IQ if they were exposed to it for an extended period of time. However, they concluded that there was no difference in IQ between children that were exposed to the drugs during breastfeeding.

You can find more information at the Epilepsy Therapy Project website here.

The last link I will post is this one, which says that there are no immediate cognitive effects in children who were breastfed by women taking anti-epileptics, but it does admit, however, that more research needs to be done in regards to women who are on polytherapy for epilepsy.

Many women have been known to just use formula out of fear that breastfeeding will affect their child. I believe it is a personal decision that you have to make with an open discussion of your doctor. While the effects aren't as great of a risk as many have been led to believe, each case is different.

Week 2

Current Dosage:

Lamictal: 175 mgs 2x/daily (fully therapeutic as of last week)
Carbamazepine: 200 mgs XR 2x/daily (400 mgs total per day; 1/2 of my original dosage)

My stomach feels a little topsy-turvy today. Nothing too bad though. That could also be from the amount of acidic things I consumed over the past 3 days. I know better than to do that. My GERD is too sporadic to just jump right into an acidic binge-fest.

Since I'm on such a low dose of Carbamazepine now, I'm keeping an eye out for the rash in which about Nurse Gary told me. So far, so good. That means that my body is accepting the Lamictal and not fighting, which is great news!

I counted out how much longer I have for this process. January 9th will be the official day of beginning no Tegretol and just the Lamictal. I can't believe how close that is! I'll have more to talk about once that comes. I'm going to have a whole boat-load of instructions to follow after the tapering off is over. Hope everyone had a great holiday! We ended up with a white Christmas! It was beautiful!

Happy Holidays

Merry Christmas, Happy Chanukah, Happy Festivus, and etc., everyone!

The holidays snuck up on me this year. It was wonderful to spend it with our families. Dave and I are very lucky to have so many people that care about us.

This morning, Dave and I went to my brother's and watched our two-year old nephew open Christmas gifts from Santa. It was an amazing experience. As he danced in place every time he opened a gift he loved, my heart smiled. To see the world through the eyes of a child is truly amazing. He is fearless and dives into new things without flinching and never looks back. It reminds me that I, too, should be fearless.

With the new year approaching, I am thinking about all the changes in my life. From new family members, new house, and even, new medications, everything has changed so fast. I shouldn't be fearing these things. They are exciting and only make my life more enriched.

I am looking forward to the new year and seeing what changes are coming, so I may face them head on.

Coming Down

Current Dosages:

- Lamictal: 175 mg 2x/daily (full therapeutic dosage, total of 350mg per day)
- Carbamazepine: 300 mg XR 2x/daily (tapering process began, total of 600 mg XR per day, started at 800 mg XL)

I finally started the tapering down of the Carbamazepine today.

For the most part, I feel okay. I feel slightly nauseous and have a headache, but it's nothing out of the ordinary or scary. It also could be due to the fact that instead of Carbamazepine, I'm taking brand Tegretol for the first time in over 3 years. The 100 mg XRs don't come in generic so while I'm tapering off, I'm on the expensive stuff. Nurse Gary told me that while I was tapering off the Carbamazepine I could experience withdrawal symptoms and they may worsen for a week or so once I was completely tapered off and the medication was leaving my body for good.

Many people that read this blog are going to have to go through this process when they are starting thinking about children so while I'm tapering, I'll update once a week (plus my other blog posts) about how I'm feeling and anything I notice. It may give you guys a better understanding of what to expect once you make the change.

We Are...!!!

We are...THERAPEUTIC!!

Just heard from Dr. L.'s nurse about my blood work. He said that my Lamictal blood work looked great and that it was therapeutic in my system. He also said that there was no reason to raise my dosage any higher than the 175 mg 2x/daily. That is FANTASTIC news!

He said that Dr. L. doesn't want me to wait a week (which is what I originally thought) to taper off of the Carbamazepine. She wants me to start tomorrow so that as I'm getting used to my highest dose of Lamictal, my body is also getting used to a lower dose of the Carbamazepine.

I'm so excited! This means that the end of my medication switch is in sight! We are one step closer to being able to safely try for our future children. I truly feel liberated and so, so happy.

Making Changes

Over the past week or so, I've noticed that if I don't eat, like within minutes of the feeling of hunger, I'm getting violently nauseous. I've only gotten actually sick once thus far, but that is still one too many. This is probably due to the fact that my body is on too much medication, but as of Wednesday, I will be on my last week of titrating the Lamictal up and once I hear from Dr. L. and she says that the Lamictal is therapeutic in my body, I can begin weaning off the Carbamazepine. If I don't hear from her by Wednesday, I'm going to give their office a call since I did the blood work on Friday.

On a positive note, Dave and I painted our upstairs bathroom this weekend. We felt utterly motivated since my mom is coming in to town. We have retro green and beige speckled tile all throughout our bathroom, so finding a paint color that wouldn't overwhelm the room and complement the tile really proved to be a challenge. We used Behr "Winter Fresh" as the color. Here's a picture below:



I think it came out pretty well for an impromptu project.

Anyway, I feel like I'm in such a holding pattern until Dr. L. calls. With the holidays coming up in a week, unfortunately, it's all I can focus on. I'm nervous about going to all the holiday parties with little ones there. I'm afraid of all the questions about, "When are you having kids?" are going to be too much for me as we go through this process. I know my family and friends mean well, but right now, at this very moment, I'm feeling overwhelmed.

Fingers Crossed

I got more blood work done today. I feel like I'm constantly getting tests done, lately. This blood work is checking to see if the Lamictal is therapeutic. Once I get it back and they say that the Lamictal is fully therapeutic in my system, I will have the go-ahead to begin weaning off Carbamazepine. I can't believe that this time is already here. This crept up on me. I'm excited!

All I Want for Christmas...is You.

My monthly guest blog on "Third Stop on the Right" is posted. You can check it out here. It talks about how hard the holidays can be for couples that want a baby, but are struggling to have one. I think it's a topic that not many think about, but should be aware of because of the sensitivity of the topic. Thanks for reading!

Music is good for the soul...

Over the past couple of weeks, I've begun to think about the things that give me strength. My answer has always been: family, love, God, and music. Today, I wanted to talk about music, though. When I think about music, I don't just think about the beat behind it (although, that's usually the reason I'm giving a song a listen in the first place), I think about the lyrics and the emotion that the combination of the beat and lyrics evoke.

Some songs can make you feel sad or happy, love or anger, or a series of other reactions. I decided I would like to share the songs that remind me that I am not only a strong person, but a fighter and a blessed person. I hope you find the same solace in these songs that I do:

1) "Fighter" by Gym Class Heroes


2) "Girl on Fire" by Alicia Keys


3) "Give Me Everything" by Pitbull


4) Little Victories" by Matt Nathanson


5) "Let's Go" by Calvin Harris





Many of these songs make me want to get up and go out and make something of myself. Or, they remind me that I'm strong and I'm not limited by epilepsy. I am a fighter and if I set my mind to something, I will accomplish it. It just takes my hard work and faith.

An ER Visit and Solving a Problem

The past week has been a roller coaster. I re-started my birth control a month ago per the instruction of my neurologist. She wanted me to be on it while we were switching my medication over.

Last week, my sugar pills started and obviously, so did my "friend." However, when it started, I got the most intense pain I've had in years in my lower left quad of my abdomen/pelvic area. I thought I was just having really bad cramps, but it seriously was killing me.

The past few days the pain never went away and my "friend" just got worse. I started to feel really lightheaded and dizzy from the amount of iron that my body was losing, even though was taking I was taking iron pills to compensate. I got really upset and nervous about what was happening so my mother-in-law took me to the emergency room.

They did 2 ultrasounds, pumped me full of fluids and let me rest. They told me that my endometriosis was back and that I should follow up with my Ob/gyn to confirm. I ended up seeing my Ob/gyn, Dr. S, today. He did an exam and poked around. He told me never to believe doctors from the ER because they just like to scare people.

He thinks that I had a "massive cyst" burst. He thinks that since I'm on both Lamictal and Carbamazepine, both cause ineffectiveness in birth control, that my "normal hormonal body reaction" peaked through. My birth control is working as a contraceptive but not as hormonal treatment for my ovarian cysts. That is why I feel like I'm dying. This is officially day 8 of painful cramping, my "friend," and feeling completely exhausted.

Dr. S says that if it happens again next month that he's going up my hormone therapy and try to reset my body before the medication switch is over.

Also, I finally heard from my GP about my blood work. The nurse told me that my Carbamazepine level was 10.7. Anything from 4 - 12 is considered a normal level. My levels however are usually in between 7 - 9. I was curious to see if me being on Lamictal affected my results at all and it looks like it does.

Here's to feeling better. I'm just so glad to be out of the ER, to know what's happening and that we have a plan, and that it should be over soon.

Blood Work Results

I told my husband yesterday that I need to call my doctor to get the results of my blood work and he says to me:

"Oh, they called last Thursday. Everything's normal. Whoops."

I'm honestly not mad in the least. I actually laughed when he told me. I may still call to get the definitive results and know the numbers. My Carbamazepine levels have always been normal - but more on the high side. I'd like to know that while we are switching the medication that the levels haven't been affected too much.

Plus, my GP took me off Metformin a few months ago. I was taking it because an endocrinologist that I saw three years ago diagnosed me with PCOS (polycystic ovarian syndrome) and said there was a possibility that I could be insulin-resistant, which in the long-run can lead to diabetes, if one isn't taking care of themselves. When my GP did my initial blood tests (since I was a new patient), my glucose came back normal, so he took me off of it basically just to see what would happen.

My A1C (which measures your glucose over a 3-month period) has been normal over the past 2 blood tests without the Metformin. I would like to hear it again that it's normal. This would mean that my PCOS is starting to get under control and that I am no longer insulin-resistant.

Dave and I have been on a health kick lately and hopefully, that's contributing to the good blood work.

FYI: Today is Day 1 of Week 5 of the medication change and my side effects are finally starting to subside - except for my nightmares. I'll take nightmares over feeling like I'm going to vomit and RLS any day, though.

Spreading the Word

I'm a guest blogger! To spread the news of Epilepsy Awareness, I was asked to create a blog post for my friend, Rachel's blog, "Third Stop on the Right." You can see my post, here.

Learning

"Look not mournfully into the past, it comes not back again. Wisely improve the present, it is thine. Go forth to meet the shadowy future without fear and with a manly heart." - Henry Wadsworth Longfellow




I know I said I was going to post yesterday, but I needed time to decompress.

Dave and I met with Dr. L. yesterday to get a more in-depth understanding of what my condition really looked like.

She explained that there when a baby is in a mother's womb all of the synapses for the brain are located near the brain stem. After the baby is born, the synapses move to their permanent location of the edge of the brain. It is why the outside of our brains are bumpy. There is a small section of my brain where this didn't occur. This is why I have seizures. The true and definite reason why. She said that the is the reason for my slower fine motor skills and bad vision (I could have told her that).

Dr. L. told us that I am lucky that this happened when I was very young. My brain was able to re-route so I was able to learn and be self-sufficient. It is different from being a 70 years old and having a stroke and not being able to re-learn old habits and simplicities.

This opened my eyes to show me that I truly am one of the lucky ones.


There was other news that she told us, but I don't know if I'm ready to share it just yet.

Not-So-Sweet Dreams

Lately, I've been having incredibly vivid and horrible nightmares. The type of dreams that when you wake up in the morning, you have to make sure that the events didn't actually occur. They make you run around the house checking on family members, calling friends and bringing out valuables that you thought were lost forever. These dreams have been terrifying and, truthfully, I haven't slept well in about three consecutive weeks.

After doing some research, I found out that these dreams could be yet another side effect from the Lamictal (see, I told you I'd want to talk about side effects, again). I found numerous blogs that describe the same type of dreams after starting the same drug. Some people say for them, they never went away and others say that once the drug became therapeutic, the nightmares eventually fade. I hope I'm the latter of these two.

Between the RLS and random anxiety attacks, adding this to the list makes me feel like this:

Dave and I are going to visit Dr. L. tomorrow. Hopefully, she can shed some light on what's going on. She wants to go over my MRI results in person. She's going to show us the images of the MRI and explain to us exactly what it says and what the plan is moving forward. Also, she is going to give me the results of my recent blood work and confirm where all of my levels are at.

I'll have more on that tomorrow.

Unusual Side Effects Part 1

This is going to be a quick side note. I titled this "part one" because I'm sure this won't be the only time that I will want to discuss this.

Since starting the Lamictal, I've had a series of side effects that I never got while I was on just Carbamazepine.

Everything from my tongue feeling ticklish to numbness in my hands to cramping to RLS (Restless Leg Syndrome). The RLS seems to be the only one that is sticking though. It's infrequent, but happening about every other day. It makes me feel like my leg is completely asleep and like I will have to drag it to get from point A to get to point B - but then, I can move normally. How strange...

It's actually starting to piss me off today. We are starting the holiday season at work and I just don't have time to feel uncomfortable.

Dr. L. said that once the medication switch is over and that I'm fully off of Carbamazepine that the annoying side effects should subside. Hopefully, that is true.

Blood, Some Sweat, No Tears

8:30 a.m. - I went to Quest Diagnostics in order to get my routine blood work done. They took blood for a CBC, TSH, A1C, Comp Metabolic Panel and a Carbamazepine Level. Getting blood taken never really bothered me like it does for some people. It doesn't really hurt, is over in seconds and gives me a view of my health that otherwise, I wouldn't be able to see. I've seen patients lose their stomach the second the needle touched their skin. I should have the results of all of this in the next few days.

1 p.m. - I had my yearly physical today. I had it with the P.A. in the office rather than my usually GP. She was very nice and made me feel comfortable. I gave them Dr. L's plan to change my medication. She looked at the paper like it was in German, at first, which is the same look I had when I first read the very detailed instructions. I explained that Dr. L was weaning my upward 50mgs at a time, each week for 6 weeks, of the Lamictal first, then after 6 weeks and the medication was therapeutic, weaning me down 200mgs at a time of the Carbamazepine until I was only on the Lamictal. I had to have that explained to me three times before I actually understood.

For the rest of my physical, she asked about my health and eating habits. Since I have symptoms of PCOS, she wants me to get back on a healthy lifestyle track and lose about 15 pounds. She said that by doing that, my symptoms may lessen and so might my acid reflux. In other words, I will just feel better.

Here's to taking another baby step to getting on the right track.

Answers

My husband and I moved back to Pennsylvania two years ago and knew that we were quickly approaching the time when we would begin seriously thinking about children. In order to prepare, I made appointments with a new OB/Gyn and GP (both of whom I now absolutely love). We were living with my in-laws and saving for a house, at the time. Once we purchased our first home together, I began searching for a new neurologist.

I always knew that having children would have a few hurdles for us since I was on anti-epileptic medications. I had scared myself stiff by researching the side effects that Carbamazepine can have on pregnancy. Words like spina bifida, cleft palate, and cerebral palsy swirled in the back of my mind as we thought about our future family. I wanted to do everything I possibly could to make sure that our family would be safe. The Antiepileptic Drug Pregnancy Registry comes out every year with new case studies of the percentage of malformations are made from taking certain drugs. The Spring 2012 list currently looks like this:

I found a great doctor (Dr. L) who is excited for us and decided to be incredibly assertive in her treatments. She ordered an EEG and MRI to get the most updated information on my conditions. She is switching me from 800mgs of Carbamazepine to 350mgs of Lamictal, which she referred to as "the safest drug for women who want to get pregnant." I will also be taking 3mg of folic acid and a calcium supplement. Dr. L. seems extremely positive.

She called me last night to give me the results of the EEG and MRI:

EEG: Normal. She said that she saw no "seizure activity, period." That's never happened before to me. I was ecstatic to hear this information. Dr. L. said that she didn't even see background noise during test.

MRI: Diagnosis: Congenital abnormality. That sounds way worse than it actually is. Basically, it means I was born with this. It's a condition that may or may not cause seizures. In my case, it caused seizures when I was little, but my doctors acted quickly and got me on the correct dosage to keep me safe. It's nobody's fault. For years, I believed that my seizures were caused by a lesion that was formed on my occipital lobe due to a car accident while I was in utero. That isn't the case. In fact, it's quite the opposite. Ten of every 1000 births can result in a congenital abnormality. It isn't genetic and can just happen. This is what caused my seizures. Finally, answers. Dr. L. said as long as I'm on a low-dose of anti-epileptic medication, I should never have a problem, again. Here's to great news!

This makes me feel amazing. It lets me know that these are just the cards that God dealt me and that it was my fate. God never gives a person more than they can handle. This is just the journey that I was meant to take. This was meant to make me stronger.

....And it has.

Starting from the Beginning

My name is Kathleen. I was diagnosed with partial complex seizures when I was only a toddler. My last seizure was in 1992, however, I will always need medication to control them. For the past 20 years, I have been taking Carbamazepine.

I married my best friend in the world, Dave, in 2009.

After three years of married bliss, we are thinking of starting a family. My neurologist is switching me to Lamictal, an antiepileptic drug that is safer for me, especially during pregnancy. This blog will be used to document the ups and downs, discoveries, experiences and changes along our path to parenthood and daily life.