I blog our story continuously because it's cathartic for me, as well as informational for others. But, I realized that Renn's circumstances are NOT the only ones that can be labeled as Epilepsy. There are so many out there battling this condition, and I since I am in the business of spreading awareness, why not feature others and their journeys? Last year, I shared Kate's story. Michelle, Kate's mom, gave us all great insight as to what to expect for Renn's surgery.
So, I got an idea...
I am part of a group called "Moms of Epilepsy", on Facebook. We are a support group of endless love and information, as we deal with the ins and outs of our daily lives caring for someone who has (and in some circumstances having) Epilepsy. We are from all over the USA, and even Canada. I'd seriously hopeless without these ladies. I am sharing their lives. Their battles, struggles, triumphs, and joys. Now you can understand that NO TWO PEOPLE have the same Epilepsy. NO TWO PEOPLE face Epilepsy the same way.
This is Kelly Irvin... mother of three, wife, and one tough cookie. Here is her daughter, Kayla, and their story:
I remember it like it was yesterday, the doctor said it was Epilepsy.
My heart was shattered but for her I remained strong.
How do you tell her she isn't like the other kids, what can you say when she asks why me.
How do you explain what happens to her when she has no memory.
Why scare her when she doesn't know it is happening.
Do I let her go or do I make her stay
How do I know she will be o.k.
I put my trust in others to know what to do even though it is killing me inside
I want her to be her own person, I just wish there was a known guarantee.
I want to protect her forever but I know it just isn't fair
She has been through so much in four years, much more than most kids her age
We live our lives from day to day because tomorrow is no guarantee
Do I let her go or do I make her stay
How do I know that she will be o.k.
I put my trust in others to know what to do even though it is killing me inside
On the outside I am strong for her but inside my heart is shattered
The only thing that keeps me going is seeing her beautiful smile
For now they are controlled, almost one year now but I know
Tomorrow is no guarantee.
April 19, 2010
It started off like any other normal day for our family. Eric was working and I was at home with Kayla our nine year old, Alexa our five year old, and Chandler our seven month old. We were getting ready to meet my sister-in-law and our nieces to get all the grandkids' picture take for a present for Eric’s parents. We were almost ready to go and I told Kayla and Alexa to go get their shoes on so we could get going.
This is the point in our journey where our lives were forever changed.
It was still chilly out so I expected the girls to come downstairs with their tennis shoes on which Alexa did but Kayla came down with Flip Flops on. I proceeded to say, “Kayla, don’t you think it would be better to have tennis shoes on?” Kayla’s response was, “Mom these ARE my tennis shoes!” So I say, “Kayla don’t act crazy, go get your tennis shoes on. We have to go or we are going to be late.”
By this time Kayla was crying and just kept saying mommy these are my tennis shoes. At first I thought Kayla was just trying to be defiant until I remembered this is not Kayla and how she acts ever. So I started asking simple questions like what day it was and where we were going, and to my surprise she couldn't answer any of the questions and just kept crying and crying by this time I knew something was wrong but had no idea what so I called her pediatrician and explained what happened and how she was acting. Her pediatrician said, “How soon can you get her here?” Totally alarmed by this, I said we can be there in ten to fifteen minutes. By the time we got there Kayla was acting normal again and was acting like it never happened and couldn't explain it and acted like she didn't even remember it. We went through the process of what happened and what Kayla was doing and what the pediatrician said next made my world completely stop. She said she thought Kayla had a seizure and the confusion afterwards is what I was seeing. The last half hour of that appointment was a total blur I couldn’t tell you what she told me or explained to me I just know we left there with an appointment scheduled at Children’s Hospital with a Neurologist named Dr. Slaughter the following day.
Over the next couple of days my life was a blur and Kayla had no idea what was going on or why she was having all these tests done. She had an EEG and MRI and by the end of that week it was official my daughter who until four days prior had nothing wrong with her now has a diagnosis of Generalized Non-Convulsive Epilepsy. To this day I still remember how I felt at that specific moment that the Dr. told me and my husband what Kayla had. My heart sank and I started crying not knowing if I was crying for my daughter or crying for myself. I knew at that moment our lives were going to be different. Dr. Slaughter classified her as having Absence seizures (starting spells) and put her immediately on Lamictal. Over the course of a year we got Kayla on the baseline of Lamictal and she did not show any more signs of seizures. We fell into the routine of taking medicine twice a day, making sure Kayla had enough sleep every night 9-10 hours, keeping her away from known triggers and back and forth to Children’s Hospital for checkups every couple of months. At this point I thought o.k. this isn’t so bad we have a handle on it and she can have a normal life. Then in the summer of 2011 things changed again. Kayla started having what they call breakthrough seizures, but these were different not the normal staring spells like before there was more movement involved with them. After increasing the Lamictal many times and only to see an increase in these seizures the Dr. told us that she was having Myoclonic seizures and that the Lamictal was just aggravating them and we needed to changes medicine. I had never heard of a Myoclonic seizure and it was nothing like I expected (stigma of what I knew about seizures prior to this journey) Myoclonic seizures at least for Kayla included Eye Fluttering, Arm Jerks, head bobbling and she would completely stop what she was going at the time. They lasted 10-30 seconds and then she would start up right where she left off at. So we started to reduce her Lamictal and put her on Keppra, when she was completely off the Lamictal and only on the Keppra she was still having seizures almost daily. At this point she said she wanted to add another medicine to see if the combination would help calm her seizures. We started her on Zonegran with high hopes that it would work with the Keppra. We kept working with the doses of both meds through 2012 with no success always still having seizures although not has many as just with Keppra but she was still having them daily up to 12 or more a day.
By this point I was getting impatient and I wanted what was best for Kayla, I had met Dr. Patel at the Epilepsy Symposium that our local Epilepsy Foundation put on in November 2012 and I liked him from the start, he just happened to be an Epileptologist at Children’s Hospital where Kayla was already going so at our next appointment with Dr. Slaughter I asked about Dr. Patel and what the chances where of us being able to see him as a second opinion on what to do with Kayla. Dr. Slaughter got us a referral and an appointment for December 27, 2012. At this appointment Dr. Slaughter said to us that Kayla is showing symptoms of Juvenile Myoclonic Epilepsy and that Dr. Patel would be able to help her. Little did I know that my world would again be turned upside down just days before this appointment.
December 23rd, just two days before Christmas, Kayla had her first Grand Mal Seizure! Kayla and her sister were out feeding our dog like they do every day and I just happened to be standing at the door watching them, there was snow on the ground and they tend to mess around so I was watching them. Next thing I know Kayla drops to the ground. An alarm sounded in my head and said get to her now this is it. I took off running outside in my pajama pants and t-shirt when I got to her my worst fears were realized. She was convulsing and she was turning blue! Instead of my motherly instincts kicking in and me doing what I knew I had to do I froze and started freaking out. I shouted at Alexa to go get my husband, her step-dad. I was totally worthless at this point. My husband get there and immediately turns Kayla on her side and her color immediately returns. By this time the convulsions had stopped and Eric had scooped her up and was walking back into the house. And there I sat crying hysterically being no help what-so-ever. It took me a good five minutes to get myself together enough to call the Neurologist on call at Children’s. Kayla was Oblivious to anything going on around her she was laying on the couch with this blank stare on her face, she was so tired. When she finally did come around she asked me why her pants were wet, she didn't remember going out to feed the dog she had no recollection of the seizure or what happened after until at least fifteen minutes after she was back inside. I told the Neurologist on call exactly what happened and he said as long as she is responding to us now she would be o.k. and that it was up to us if we wanted to take her to the hospital for observation. Between the Neurologist and my husband we decided not to take her. The Dr. increased the Zonegran that day with the hopes that it would curb any more seizures at least until our appointment on the 27th. Christmas 2012 was an absolute cluster blur. I remember not letting myself enjoy it because I was so worried about Kayla and what would happen if she had another one, would I be able to handle it or would I be a blubbering mess again. I felt like I had let her down, I knew exactly what I needed to do but I couldn't get my body and mind to work together. Waiting until the 27th seemed like an eternity.
Finally December 27th was here and I don’t think I had ever wanted to go to an appointment so much ever. Dr. Patel was so nice both to me and my husband but especially to Kayla. He explained everything to us including things Dr. Slaughter had never explained to us. He told us that yes she has Juvenile Myoclonic Epilepsy and that it was genetic she had been having seizures since she was born most likely we just didn't know what they were. Dr. Patel talked to us for three hours that day and we left with a game plan something we had never had before. By the time we left there that day we knew we were taking her off the Keppra and Zonegran because they were obviously not working and we were putting her on Depakote. As of the first week of January a mere four days after starting Depakote we saw Kayla Seizure free for the first time in three years. It was a great feeling finally we found a medicine that would work! Great thing right? Not so fast. Then we started to see major changes with Kayla, her cognitive skills were slow to begin with but were even slower now, her speech was slowed, she didn't want to eat and she was acting and looking like a zombie. Was this our trade off surely they wouldn't want to keep her on something that would not give her the quality of life that she deserves right? This is where our journey continues the Dr. doesn't want to take her off it because it is working so we continue to take her off the Zonegran which as of 6/20/13 she is completely off the Zonegran and solely on the Depakote. We have to give her body time to make sure all the Zonegran is out of her system and see what her body does only on the Depakote. As of now she still doesn't want to eat; now when I say this I mean she is eating the same portion size as my three year old son and she will be 13 this year. She is still slow both in speech and cognitive skills the only good thing so far is she is not walking around like a zombie anymore. A couple more weeks and if we don’t see any changes then the Dr. wants to reduce the Depakote by one pill to see if it helps, if it doesn't then the only other option is to change meds again and we only have one med option left at this point and it is Onfi a newer medicine in the U.S. market but it is supposed to be good like Depakote. So as of basically the end of June our Journey continues.
Today, July 29, 2014 Kayla is still on the Depakote, we have gone down to 1250mgs and most of the side effects are gone now. We are still not completely back to where she was yet, slowness is still there just not as bad. She has been seizure free now for 19 months! She is now in puberty and has started her cycle which has caused many other problems. She currently is on Lexapro for her Anxiety and Depression and we are waiting to see the Adolescent department at Children's Hospital to start her on the Depo Shot to hopefully curb some if the issue her period is causing her. Last appointment her doctor mentioned that we are fast approaching her 2 year seizure free mark and in December he wants to do another EEG if it comes back Abnormal we do nothing and everything stays as is. If it comes back Normal then we need to further discuss weaning her off her meds.