Thursday, March 25, 2010

Our Epilepsy Story

This is our little guy, Aaron. He's four years old and is such a sweet little boy. He loves trains, cars, tractors, airplanes, basically anything that moves, has wheels, and makes sounds. Aaron likes to watch TV and movies. He loves people and will give just about anyone a hug. He can only say two words, mama and bus (he actually only says "bu" but we know what he means), but he can sign about 100 words. Aaron has epilepsy. My hope is that by sharing our story more people can learn about epilepsy because there are so many people affected by this disorder in many different ways.

My pregnancy and delivery of Aaron where completely normal. He was a very content little baby with no apparent problems. He developed pretty normally (maybe just slightly behind) until he was about 8 months old. That's when we first noticed that sometimes when he was lying on his stomach, his head would drop down and hit the floor. For a while we thought he was kind of throwing a tantrum or that he was just losing control for a second because he was just a baby
and he needed to learn how to control his muscles. Sometimes when he was lying on his back his arms would come up towards his body, kind of like the startle reflex, and I can't help but wonder if he'd been doing this for a long time but we thought it was just a reflex. He's our fourth child but we still didn't think this behavior was that strange. As he started to scoot around and start to crawl we noticed that it wasn't just his head but his arms were giving way as well and it was happening more frequently. By the time he was 9 or 10 months we thought there was something wrong but when I mentioned it to the pediatrician he said we should watch it. He asked me if he was thrusting his arms, head, and body forward over and over like a jackhammer (infantile seizures)but it wasn't anything like that. Anyway, I thought, this couldn't be seizures because that's when a person falls on the floor and convulses for a few minutes. What Aaron was doing lasted less than a second.

At the same time he was having these strange movements, Aaron was also having recurring ear infections. We kind of figured that there was a connection. He got tubes in his ears when he was 11 months and once asked the nurse if the loss of muscle control and the ear infections had any connection. She talked to the doctor and suggested that maybe he was holding his breath and passing out for a second. By this time, he was having these episodes a couple dozen times a day and I also noticed that he'd stopped progressing in his development. He wasn't babbling at all or making any attempts at sounds and though he was crawling he wasn't moving forward from there. At his one year check-up I convinced the doctor that something should be done but I didn't know what. He got us in for an EEG which measures the electric impulses of the brain. Within a week we had the results--everything looked normal. What! That was good in a way but I was now certain that there was something really wrong. I let it go for a couple of weeks but decided to try to get one of his episodes on tape so we could show the doctor and we also tried to record how many he had and at what times. It wasn't easy because they were completely unpredictable but I was finally able to do it. I got a video of three episodes one night while he was eating dinner. I'm going to show you these so you can get an idea of what they looked like. At this point they were a little worse and lasted longer than they had in the beginning. He was having as many as 50 a day. (When you watch the video please ignore the family dynamics going on in the background.) :)

I'm showing this video because I think it's important for people to recognize that there are so many different types of seizures. If I had known that then maybe it wouldn't have taken so long to get Aaron diagnosed and start his treatment.

Our pediatrician again was able to quickly get us in to see a neurologist as Primary Children's Hospital and as soon as he saw the video he immediately went to look at Aaron's EEG results again. He said that at first glance it did look normal but when looked at carefully he could see those split second seizures. He ordered another EEG to confirm before starting Aaron on medication.

I just have to take a second to talk little about the EEG. It is an experience in and of itself. We needed to have Aaron sleep deprived so they could monitor his brain's electrical impulses as he was going to sleep so he was pretty cranky already. Then they put 24? little nodes all over his head, then wrapped it up with gauze so none of them fall off. Here are a couple of pictures:

He actually was such a trooper and he had to go through this whole process twice, beside the MRI, ct scan, blood draws, and urine tests that he also had to endure. All of these tests came up with no answers to why he was having seizure so they say it's idiopathic which means there's no known cause or in other words, "We're too big of 'idiots' to understand what's going on." :) I'm actually totally kidding because I know they do what they can but it is frustrating to not know why our sweet little baby is suffering this way.

We started on one medication that seemed to reduce the seizures quite a bit for a while but not in the long run. Then it was another medication that didn't work and which we realized, once we got him off of, was keeping Aaron in such a fog and probably making him dizzy that his development was really slow. About a month after getting him completely off that second medication, Aaron started taking his first steps at 21 months old.

Two more medications later, we finally have his seizures under control. When he was two we started him on a medication that he wasn't able to take until that age because of the risk of liver failure (scary, huh!) in children under two years old. It seemed to do the trick in combination with two other medications (#1 and #3). He's now on two medications and we were hoping to get him down to just one but our attempts to wean him off of one have been unsuccessful. He started having a few break through seizures so we'll just stick with the two for now.

Aaron is such a blessing to our family. We have learned so much through him. He goes to special-ed preschool which he loves. He has great teachers and he continues to make progress even though it's very slow. He's developmentally delayed in all areas but his speech is the most delayed. It's so good that he can communicate to some degree with sign language. His fine motor skills aren't really good so his signs are hard to understand but I can usually figure it out.
He loves people and recognizes those he knows and loves best even from a distance. There are many people that when he sees them, he'll squeal loudly and run over (in his funny little way) to hug them. He can be a trouble maker because he has the mentality of an 18 month to two year old but he's the size of a four year old. He gets into EVERYTHING it seems and because he's taller than a two year old he can reach even more stuff. But we still love him.

I know this has been a super long post but on this Purple Day I really wanted to share our story of how epilepsy has affected us. There is so much to learn about this disorder. There are several different kinds of seizures and they look dozens of different ways. Most people have heard of grand mal, or tonic-clonic as they're now called, but there are so many different kinds. Aaron's have been called myoclonic but when I read the description of myoclonic seizures it doesn't seem to describe what he has. Besides the differences in seizures, doctors don't even quite understand why or how the medicines work. There are dozens of medications and they do the best they can to prescribe the one that will work for a certain type of seizure but it seems like sometimes it's a guessing game.

Thanks for reading and be sure to wear purple today in support of the millions who deal with epilepsy.


Tricia said...

Thank you for sharing your story Kim. Your mother love shines through so beautifully. Aaron is a special child and he is blessed each day because of you.

caribookscoops said...

Thanks so much for sharing Aaron's story. What dedication and persistence you had in getting him diagnosed. The sleep deprived EEG was not fun for my 5 year old I can't image doing it with a little one like you did.

A Musing Mother said...

Thanks for the awareness!

Sharon said...

Oh wow! It's so hard when kids are sick. Thanks for the story and pictures. He is adorable.

melissa @ 1lbr said...

Beautiful story, thanks for sharing. Hope you guys can get the right combination to help him!

Stephanie said...

Thanks so much for sharing your story with us. I'm also a book blogger and have an 8 year old daughter with Epilepsy. She doesn't have seizures all that often (she has maybe had seven or eight her entire life) but when she does have them she tends to have really LONG ones. We just met with a new Neurologist and will be getting another video EEG and MRI. It is so hard to watch your child having a seizure, but am so grateful to be living in an area where we can get excellent medical care for her. I hope that your son has more success with his current medication.

Tamara said...

Thanks Kim!!! You really are great and we love Aaron so much!

Shelley said...

What a cutie! Thanks for sharing your story. It seems like there are so many times when doctors don't know what's wrong and it takes dedicated parents to keep trying to figure it out.

Anonymous said...

What a moving story! May God bless you, Aaron, and your family!

Natasha @ Maw Books said...

I had starred this post intending to post a comment when I had more time and now realized that I never did. Thanks so much for sharing your story Kim. I just can't even imagine. I had no idea that this type of condition even existed, so thanks for enlightening me. Hope that all goes well as you move into the future.

Teeny and Friends said...

My brother had seizures when he was little. My Mom did a ton of research trying to figure out exactly what was wrong with him and tried a lot of different natural therapies. Finally, she learned about a chiropractor in Utah named Dr. Stockwell. He has a specialty called NUCCA. She started taking my brother to him when he was about 7. The treatments did so much to help him. By the time he was 11, having a seizure was RARE. He is now 20 years old, and has not had a seizure since he was 11. No medication either. Oh, also, FYI he was also developmentally delayed in all areas, but by the time he was in his mid teens, he had pretty much caught up to his peers in every area. I just felt the need to share, as my brother was so blessed by these treatments. If he had not had them, I have no doubt he would not have been a normal guy with a normal life. Good luck with everything!

Rochelle said...

Hi Kim...I stumbled across your blog from another book blogger--maybe Gerbera Daisy? I can't remember. Anyway, I saw this post and wanted to comment. Hope I won't be too long :)

My now-6-year-old went to bed one night at the age of 3 1/2 and we heard a horrible noise from his bedroom. We went in to find him having a tonic clonic. Things progressed from bad to worse and he started having every kind of seizure under the sun.

His predominant type was myoclonic, which is what I thought of when I saw your description of your son's seizures. I thought that was interesting because you thought they didn't sound like myos. Anyway, my son also had 'drops' or atonic seizures. Have you looked at those as possibly being what Aaron has been experiencing?

Long story (sort of) short, meds never helped him (except Depakote, which sounds like what they refused for Aaron for the liver issues. It semi-controlled my son's tonic clonics). He started on the ketogenic diet and became seizure free after 11 months. We just hit the 1-year mark of seizure freedom for him. It's been a crazy 2 1/2 years with lots of ups and downs.

If you are interested in talking or anything, please email me anytime. I love to share with other moms and hear their experiences with such a scary thing that is so misunderstood.