Seizures, Epilepsy, and Medication! Oh My!

I have to admit that I didn't know that much about epilepsy until after my daughter Rach was diagnosed. My only previous experiences had been that I heard that one of my older brothers had febrile seizures before I was born, and then I had a friend whose grandfather had seizures but I was only around him once. 

When I heard the word “seizure” I always thought of a tonic-clonic because that was really the only one I had ever heard about. I wish I would have known more about epilepsy because maybe I would have realized a little sooner that Rach was having seizures, but since the seizures she had didn't fit into what I knew, I missed it. 

But today I’d like to share a few important things that happened leading up to her diagnosis, and then how we figured out she had Epilepsy.

Her Birth 

Everything was going great with my pregnancy with Rach until delivery. I was all set up to deliver her just like I had delivered her older sister, but when the doc came in to check on me he brought the ultrasound machine and told me that he thought she was breech. 

She was and not only that but she was trying to turn herself and the umbilical cord was wrapped around her neck. He rushed me in for a C-Section and I heard him say “This is the shortest cord I've seen.”

When she came out, I didn't hear her cry and I was starting to panic. Nobody was telling me anything and I kept asking why I didn't hear her. Finally I heard a faint little cry and they showed her to me around the curtain but still wouldn't let me hold her. They assured me she was okay and when I was finally able to hold her it seemed to be so.

Her Allergy Diagnosis 

Rach had a bad allergic reaction when she was about 2 years old to some peanut butter, and so I had her allergy tested. It turned out that she was severely allergic to peanuts, tree nuts and shellfish so we had to start carrying EpiPen's around with us all the time. And she is still severely allergic to these things today. 

At the time I thought that her allergies were the hardest thing I had ever had to deal with, but then in 2010 when she was 3 years old we were told she had epilepsy…

Her Epilepsy Diagnosis 

Around March 2010, Rach and her older sister came down with strep throat and were both running high temps. Rach started having seizures, and at first they were very quick and small, but then she started falling or her head would drop. 

I called her pediatrician and they fit us in to see the nurse practitioner and when I told her what was happening that's when I was told it was a seizure. She sent us to our Children's Hospital and when we were there in the waiting room Rach started having different seizures while I was holding her. These were like little rapid jerks. 

Remember at this point I didn't know anything about seizures, but the medical staff and the hospital we were at are supposed to know these things and yet they refused to do anything even while watching her have them in my arms! 

Needless to say I was very upset, and they finally took her back to do an EEG at midnight but they said it was probably just the fever because the EEG didn't show anything. They sent us home and told us to call back for an appointment to see a neurologist. 

So I called that morning and they told me they were booked for over 3 months and wouldn't even set up an appointment at that time. Then I called the pediatrician back to see if she could refer us to another neurologist but she said we had to wait and go back to the hospital because that's who she was affiliated with. 

After that, I called my childhood pediatrician whose office was 2 hours away from us and they said to bring her in and we would figure something out. 

By this time I had already started searching for a pediatric neurologist, and even though he was almost 4 hours away from us, I felt like he was what we needed. Thankfully he said he would see us in just a couple of weeks. I finally had some hope that we were going to get some answers.

Rach and her sister had recovered from strep throat and Rach's seizures had slowed way down so she was feeling more like her old self. During the two weeks waiting to go see the doctor I started researching seizures, and as I learned more about them I started to realize that Rach had maybe been having some of those very small ones even before the strep infection. 

We had to do a 24 hour sleep deprived EEG the morning of the appointment and that was rough with a toddler, and of course it increased her seizures. Keeping her awake on that long drive wasn't easy to do but with my husband driving somehow I managed. 

The EEG tech was so great, way better than the one at the hospital, and Rach did great. The doctor and his whole staff were just wonderful and it made getting the diagnosis a little easier. 

Rach was diagnosed with Benign Myoclonic Epilepsy with Atonic/Drop Seizures, and was put on Depakote sprinkles. The neurologist gave me print outs of everything that was discussed and told me to do my homework and learn all I could about not just her diagnosis, but epilepsy in general. I can not tell you how wonderful this doctor was but I am so thankful he was there.

Her Reaction To The Meds Was Good For The Most Part

Rach handled the meds pretty well but she did have some side effects, mostly just being really tired. After a month on Depakote she was seizure-free! And she remained that way until the doctor said we could wean her off.

I was terrified to take her off the meds but thankfully she remained seizure free. The doctor told us that hopefully the seizures wouldn't return but there was a chance especially around puberty.

Now you know how our epilepsy journey started and I hope you will stick around to get to know us more. I would love to hear from you so please leave a comment below.