Epilepsy Blog Relay: Life with Epilepsy

This post is part of the Epilepsy Blog Relay™ which will run from June 1 to June 30, 2018. Follow along!

The beginning

They were scary words that I didn’t quite fully understand the impact of immediately. After Colleen’s birth and being transferred to a nearby hospital’s NICU, we got the phone call that she had had two very big seizures and would need a blood transfusion. Colleen spend several days on a cooling mat, keeping her body temperature low as her body tried to recover. We couldn’t even rub her skin in comfort as the nurses said that it might trigger a seizure. I was afraid to touch my baby in fear I might set something off. (For a little explanation, Colleen had a blood infection and a subdural hematoma. Her body was going through so much when she was first born.)

Thankfully, she was released about 20 days later, and we went home with phenobarbital and keppra to keep her seizures under control. And the meds did! At follow-up neurologist appointments, we were told that she would likely grow out of them. Her EEG’s (an electroencephalogram, a test that detects electrical activity in your brain) always showed significant activity, and even silent seizures. This meant that while she was technically having a seizure, physically, we could tell. At one point when it was caught, she only stopped playing with a toy for a short second, and then went back to playing. I held out so much hope that at each EEG, we would see an improvement and that maybe, one day, we wouldn’t see any more seizures.

A big change

After work one day when she as 2, I went to pick up Colleen from her sitters and knew she wasn’t acting right. She felt very heavy to pick up, in a way that her whole body felt limp. I drove home, watching in the rear-view as she just stared upwards. When I got some, I noticed she would continue these staring spells and her eyes would very rapidly blink. I called the neurologist. Up until that point, I had no idea what a seizure would look like, and it was surprising to learn that there were many different kinds.

Over the years, we’ve had a few different doctors (her 1stthat we loved moved to Texas) and a number of different medications. Currently, she’s on just Depakote sprinkles, but I fear with a lot of meds, it’s a fine balance between Colleen being able to function normally and controlling the seizures. It a very fine and frustrating line to walk. I remember at one point, after coming off of one medication, her teachers remarked at just how much more energy she had. It was a sad moment as a mother to know just how much she was being held back by medication but knowing it’s something she absolutely needs.

She’s had a few seizures over the past few years, at one point, they were occurring about once a week. These were the ones that we couldsee. And they were scary. I kept thinking to myself, “What happened? She was doing so well!” And still, quite frankly, the changes she’s had over the years is not something I understand completely.

Figuring out the future

Colleen is currently 6.5, and her biggest concern with seizures is her daily myoclonic jerks. She’s had a few which have led to injury. We had to take a trip to the ER recently to see if she would need stiches under her eye (thankfully, not!). No one wants to see their child struggle, and as a mother, I am committed to helping her as much as I can. We’ve looked into the possibility of a seizure-response dog and even the use of CBD oil.

In July, Colleen is having a second stem cell therapy treatment. While this treatment is for her cerebral palsy, I’ve read a few things in which it can help seizures. Colleen has made significant improvements in mobility after her first treatment, and we have so many videos from her teachers at school of Colleen walking without use of her walker. Just her AFO’s. While she had a neurologist appointment about a week after her first treatment, we weren’t told there was any improvement in the number of spikes on her EEG. After her second treatment, I will be excited to take her to her next appointment and know whether or not they have decreased.

There’s no doubt that there have been many challenges over the last few years, and it is something I wish I could take on instead of Colleen. But there’s no doubt that she’s a fighter and has been so strong over the years. With medical advances and new studies, I can only hope that as the years go by, her quality of life in dealing with epilepsy will only improve!

Ups and Downs

So, it’s been a while and there’s been lots of changes here!

You know that bed? The elusive bed? We finally have it! We received a letter that it had been approved, and about a week later it showed up on our doorstep.

Of course I started putting it together as soon as I got off from work. It’s fairy easy, but my biggest challenge came when trying to get the mattress inside. It’s far easier said than done when there’s only one person and a small bedroom. But I did it, and Colleen loves it. 

After seeing the neurologist in Boston and in resin her keppra to the highest dose she could go, Colleen continued to have seizure episodes and small movements that I’m pretty sure are seizure activity. We are on week 3 of now decreasing her keppra dose and adding depakote sprinkles back in. She hasn’t had a seizure in over 3 weeks, but there have been a number of those little movements. She will get her levels drawn this week and see how she’s doing on it overall. 

Colleen started kindergarten this week and I’m a mix of being incredibly proud of her and a nervous, anxious mess. There was a small mishap in that am the wrong bus was initially sent. They sent one without a wheelchair lift. Slight miscommunication somewhere! But she’s doing well overwise. I was mostly nervous about how long of a day it was, but she’s eating well and we have the nap time figured out. I definitely think we’ll get the routine down. It was the cutest thing to see how excited she was when the bus came.

We’be been working on her walker more recently when we go to the store but Colleen made it very clear she wants to be independent. Well, just hold my hand instead of using her walked. It’s been a challenge to pick her up for the cart. She’s not heavy, but I have short arms. I’be been putting her in the cart sideways to help this. So, instead I tried her in the Caroline’s Cart. Both Target and Wegmans have them, so it’s very convenient to have adaptive equipment. Colleen, of course, love it. 

One thing I noticed was that now, a lot of people are curious when I walk by, cranking their head to get a look at who’s inside. Not completely sure how I feel about this yet. 

I’ll give a personal update next post. There’s been some changes that have been creating some anxiety, but hoping will be mostly resolved and I’ll have more answers.

Til next time!