Our Journey with Epilepsy

One of Jadyne's 24hr+ EEGs over the years. She's a trooper.

I know when I first heard the doctors tell me my daughter had epilepsy I thought of a child flailing uncontrollably possibly dying from swallowing her tongue. I'm not quite sure where these myths started, but they simply aren't true.

Jadyne's first seizure was at seven months old. There are many types of seizures, and her first one was an absence seizure. During an absence seizure, the child just stares right through you. They are unresponsive to any stimulation. It is quite scary. I rushed her to the ER, but the ER told me she just had a night terror. A night terror? She's seven months old? What has she possibly experienced in her life so frightening it would even manifest itself as a night terror. From having two other children already, I knew night terrors were more of a toddler stage occurrence. Therefore, I followed-up with her pediatrician. He had performed a neurology residency during his education and knew immediately from the symptoms we described this was indeed an absence seizure. No one in my family had seizures. This frightened me. Shouldn't we do some type of work-up? His answer was that everyone is entitled to one seizure in their lifetime, that it was probably just stimulated by lights or some other type of over-stimulation, and if she had another, then we'd do a work-up. This didn't set right with me, considering she was getting ready for bed when the seizure occurred. The lights were dimmed. The house was quiet. Still I was too new into this lifestyle of a parent of a disabled child to realize I could question and even fight the doctors when needed for her care.

What became the focus soon after as Jadyne turned a year old is that she has missed so many milestones. The formal testing began, and all the tests showed "something" was wrong, but nothing showed exactly what. Therefore, therapy began when she was 14 mos old. Jadyne did all kinds of "quirky" things. She would flap her fingers (later to be discovered to be a stereotypical autistic behavior of atypical handflapping), bang her head, pull hear hair, and more (again all stereotypical autistic behaviors). I had noticed she began to flutter her eyes and bob her head a bit once in awhile, but I just thought this was another "quirk" of hers. Luckily, it was one of her therapists, when she was 2 1/2 that said, "You know, I work with another little boy who has seizures and his seizures look very similar to that eye fluttering she's doing."

Soon after we were at Children's Hospital of Pittsburgh; Jadyne was admitted. They kept her for three days and ran every test possible within those three days. The developmental team and neurology team worked together. The conclusion was Jadyne was having so many seizures in a day that it was impossible to count. The possibility lied that her developmental issues were related to the seizures, and the developmental team would continue to rule out possible diagnoses as time went on. The chromosome for autism and epilepsy are closely related, so a single depletion could cause both in theory. As we left, it was confirmed Jadyne had a Generalized Seizure Disorder, also known as Epilepsy. The doctor's put her on Topamax, but she didn't get better, she got worse. For a year the doctor's upped the dosage until finally giving up that this medication, although effective for many and carrying very low side effects, just was not going to be effective for Jadyne.

Currently Jadyne is diagnosed with Generalized Nonconvulsive Epilepsy. We do suspect due to the progression of the manifestation of her seizures and the increase in frequency of her seizures over the years that she will eventually have Generalized Convulsive Epilepsy, as she has already begun to present with some of the criteria for that diagnosis. Fortunately, we were able to find a wonderful pediatric neurologist, Maggi Jaynes, out of WVU Pediatric Neurology. She took Jadyne off the Topamax, knowing immediately that drug would never have proven effective for Jadyne's type of epilepsy and put her on what has proven to be a miracle drug for her, Lamictal. You'll notice if you click that link, the generic form is lamotrogine, which of course, Jadyne was first put on. It worked for about a year. However, she grew a tolerance. The drug must be titrated very slowly due to a very rare side effect. Thus, once the generic form no longer worked, we had to completely retitrate her to the brand necessary form. It takes approximately six months to get to a workable dose. However, Jadyne always showed great results much sooner. She's tolerated the drug very well. Approximately every 6-9 months she'll begin to have seizure breakthroughs, and we'll up the dosage. However, we're still far below the maximum dosage per kilo. I can't say enough about this drug. Thank you, GlaxoSmithKline.

Jadyne still has seizures. She's unaware that she has them. Most are only a few seconds long, just an eye flutter and a head bop. As her tolerance to the medication ensues, she begins to have drop attacks. These have caused injuries to her face and body, and they are what concern us. She will most likely never be seizure free. However, as long as we can keep the seizures to a minimum through miracle medications like Lamictal, she can lead a normal life. Unfortunately not enough of the public is trained in epilepsy that works with children. The term epilepsy is often frightening to many. Jadyne has been needlessly pulled out of class many many times over a few second seizure. There is not a reason a child with epilepsy can't lead a normal life like any other kid.

The term Lennox-Gastaut Syndrome has been thrown around over the years with Jadyne's specialists. However, it can only be diagnosed by a specific spike and wave pattern on an EEG, and it isn't worth taking her off her medication to see if the pattern exists because treatment for that disorder is the same as the treatment regiment she is already using. Regardless of whether she has that disorder or not, her seizures have progressed in manifestation and frequency over the years. This isn't over yet. It isn't unreasonable to believe eventually Jadyne's seizures will manifest into Grand Mal Seizures. In fact there is no difference on an EEG from a Grand Mal Seizure to any other of the Generalized Seizures she has. The only difference is the manifestation in what the body does during the seizure. Our hope is that through the medication and advancement of research and improvement of medications, we can continue to prevent these seizures from occurring for her. So far, we have been very fortunate to find an amazing specialist and a miracle medication, and Jadyne leads a life like any other kid without epilepsy. =)

What Do You Other Parents Do to Prevent the Disasters?

Over the years, there have been disasters after disasters due to Jadyne's autism. Some were near deadly, others very costly, others just plain maddening.

• 2 yrs old: I wake up (thank GOD) in the middle of the night to find her playing in the middle of the kitchen floor with all the cereal off the shelves dumped on the floor, just playing like in a sandbox, like nothing was wrong, although she had turned ALL THE KNOBS ON THE GAS STOVE. We all could have died if I hadn't awoken. No noise awoke me, just a sense something was wrong.
  SOLUTION: Per her Master Level Behavioral Therapist suggestion, I put a lock on her door to make sure at night she stayed where I put her. Not long later, a babysitter called CYS stating I was abusing her for locking her in her room. CYS never even opened a case, but this was only the beginning. CYS has been called probably 20 times in the past 7.5 yrs over similar things. No I'm not abusing her; I'm keeping her from killing herself and the rest of us!
  
• 3 yrs old: I had taken the lock off her door due to that idiot babysitter. I got a call at 2am from my neighbor below me asking me where Jadyne was. I lived on the 3rd floor and her 2nd floor bathroom was "raining". There was Jadyne in the middle of the floor in the hallway once again playing rubbing her hands in the water like nothing was wrong. She had stuffed a shirt in the sink and turned the faucet on. $1800 in damage. Mind you I was a single mother working 80 hr work weeks just to make ends meet.
• 4 yrs old: She got into paper ripping. She'd rip an entire telephone book if she could find one. There would be millions of pieces all over the place.
• 5 yrs old: This was the fridge time. I had to put locks on the fridge. It was a challenge to find a lock she couldn't figure out how to undo. She'd have eggs broken on the floor, milk spilled. She'd get into the pantries, had to lock those too. At one point I literally had to SCRAPE glued flour off my kitchen floor. Again, it was a challenge to find a lock she couldn't undo.
• 6 yrs old: This came the fun time (not so much!) Fecal smearing. She had done it occasionally before, but it was worse than ever. Any chance she got she would spread her feces from her diaper all over her walls, her hair, her floor, her bed. I actually had to burn her mattress, and I scrubbed the walls so much the paint actually began to come off.
• 7 yrs old: Now she's fascinated with writing. She colored all over her bedroom walls before. We can hide the crayons all we want, but it just takes one pen left out, one person forgetting the disaster that can occur, and she's off to the races with that writing tool. She'll cover a wall, her arms, her legs in just minutes.

Just lately, I don't sleep. I sleep 1-3 hrs and only at night. The other night I woke up at 3am, and she was up. She had gotten into the kitchen, found an almost full container of whey protein powder and dumped it all over my carpet. Another morning, I awoke after her. She had gotten into my office and although she didn't rip my papers, completely disorganized all my papers in all my file folders. She also spread toothpaste everywhere. While I was cleaning up a mess she made in the basement, she got into my red nail polish upstairs (while she was SUPPOSED to be watching Dora, her favorite show). She painted my window and desk with red nail polish, also.

It may seem to a NORMAL parent, as I've heard 10k times, you just aren't watching her. Keep a better eye on her. Right. And then when do I do laundry, cook, clean up her messes, clean up normal messes, vacuum, do normal household duties, sleep? Apparently never.

She did GREAT while her brother was at his father's and she had my one-on-one attention. However he was very sick this week. He needed more of my care. So she's decided to lash out. It's so aggravating.

Any other parents that have gone through this that have answers, please I'm all ears. Any parents without a disabled child, please keep your comments to yourself. Don't care if that sounds harsh, but I've heard all your uninformed opinions before, and they simply don't apply to this lifestyle. Thank you.

Short Hair It Is

Don't get me wrong. I absolutely love little girls with long flowing locks of hair. However, Jadyne just will NOT keep her hair out of her mouth, and with her need for tactile stimulation, it's always a guessing game each evening as to what I'm even washing out of her hair. Therefore, I did it. Chopped it off, and ya know, she's still cute! =)

Before

After

All her hair GONE!

Homeschooling???

Education has been a huge issue from the beginning with Jadyne. I've heard so many similar stories. You would think if 1:150 kids have this disorder (and that number is very liberal) than the schools would be equipped for what our kids need. After all the federal government has put protections in place like Free and Appropriate Public Education (FAPE) and Least Restrictive Environment (LRE). Then why is it such a struggle?

The sad truth is most parents aren't aware of their children's rights, and if the parent's aren't aware, who is there to make the schools aware. Then what happens when a parent that does know comes in? That parent becomes the bad guy for requiring the schools to implement programming that should have been put in place 30 years ago.

Because of my career, which I did eventually leave to stay home with Jadyne, I moved a lot and got a lot of exposure to a variety of education systems. Some were great; some were just a nightmare. What I've come to realize, though, is NONE provide the level of care I can for Jadyne, not because of their own inadequacies, some teachers just rocked, but because of Jadyne. She simply doesn't respond the same to outsiders as she does to me at home.

Recently, I began to realize, although it will be more difficult on me (I do kind of relish that time she's in school), I feel like I'm cheating her if I continue to put her through the public school system. However, once I realized this I was bombarded with more and more decisions.

Homeschooling gives you complete control of your child's programming, but you get very little assistance financially or educationally from the school system.

Public school, well is public school. She's gone 8 hrs a day and brings home an IEP progress report every so often saying how thrilled they are she can identify 6 letters at 7 years old.

Then there was a middle option. Cyber public school. Even in that there are two options here in PA. I chose Agora. Jadyne will be starting there soon. They will provide her a computer and all materials. They will adjust her programming to suit her needs. She'll be home with me. I'll be given support through a para-educator along the way. I will be considered a teaching partner, not just a nagging parent. There are multiple homeschooling parent support groups and co-ops around my area. She'll still be able to attend field trips and the like. I'll enter her into Special Olympics for added socialization and physical activity. Instead of an 8 hr day at public school, we'll be done in 3-4 hrs each day. That will leave us plenty of time for other activities such as sensory therapy, speech therapy, and even music classes. We're excited for this change. =)

What is Autism?

Best video I've ever seen describing a life with an autistic child. "Autism Everyday" created by Autism Speaks

http://www.veoh.com/browse/videos/category/educational/watch/e133765ejW4nXnh

The simplest answer is that autism is a neurological condition that affects social, communication, and behavioral areas with stereotypical behaviors presenting. However, no one child with autism is the same as another. Therefore, I can only speak for what autism is like for Jadyne.

For Jadyne, the symptoms were clear early. At 8 weeks old, she still was not tracking objects with her eyes. Worse yet, her pupils were continuously dilated. My first concern was she was blind. Preliminary tests would rule this out but not explain this anomaly in her development. This continued for years, milestone after milestone not being met on time or not at all, test after test proving the milestone had not been met but without explanation as to why.

Probably the most notable and memorable of all this testing was pathology and audiology. Formal testing done at Children's Hospital of Columbus, OH showed Jadyne could indeed hear, but she had no level of receptive or expressive language. I asked both the specialist and her pediatrician how this was possible. How can she hear but not understand nor express, not even repeat, not gesture, nothing? It was clear to me, even then, even in my complete lack of understanding at that time of neurological processes, her brain simply wasn't processing what was entering it through her ears. Still yet, I was faced by impasse after impasse from doctors with the ever wonderful statement "We don't know. Let's just get her into therapy. Don't worry about a diagnosis. Just worry about treatment."

In treatment, the therapists begged for a diagnosis, while the doctors just wanted therapy. I was caught in the middle of a debate, unknown to me, had been ongoing for many many years. I fought to get Jadyne this elusive diagnosis, as the therapists were quite convincing that the earlier Jadyne was diagnosed, the higher her potential would be placed. Finally, after almost five years, Jadyne received her Autism Spectrum Diagnosis (first just PDD-NOS, Pervasive Developmental Disorder Not Otherwise Specified), and that launched us into the ASD community. Just a month later the American Pediatric Association announced screening would be mandatory for all children at the ages of one and two years old for............autism.

For Jadyne, the biggest challenge has been communication. She does present with stereotypical autistic behaviors such as hand-flapping, self-injury (hers manifesting in the form of pulling her hair, biting her hand, or banging her head), and both vocal and tactile "stimming". However, these stereotypical behaviors present most frequently when she is frustrated from her inability to communicate her thoughts, wants, and needs. She has a fully functioning brain for all the thought processes we have, thinks in complete sentences (proven by use of dynamic assistive communication devices such as the Dynavox), and yet somehow the words get stuck between thought and speech.

In essence, Dr. A. Jean Ayres, Ph.D., OTR, may have described it better than any of us ever can: "a traffic jam of the senses in the brain." Just as if you were blind, the rest of your senses would become hypersensitive, in autism, you are not blind, but your brain doesn't know that. The senses become either hyper or hyposensitive, a varying combination of the two. The DSM-IV describes the criteria for an Autism Diagnosis here.

For Jadyne, she can hear and now process what she hears, but she can't speak even on the same level as her three year old brother, and she is 7 1/2, although she is now considered verbal, however once was considered non-verbal. This in and of itself is progress, but as in everything, in Jadyne's time. She craves visual stimulation, such as a disco ball lit up in a dark room. She can't feel touch as much, although much more than before (once upon a time she couldn't even feel pain at all), and so she craves tactile stimulation through means of water play, massage therapy, and joint compression. She has never turned down any food, thus I must assume, without her words, she cannot taste or smell. However, that little girl LOVES to eat.

Communication remains our focus. Jadyne is blasted with a speech therapy technique of "waiting" daily: unless she makes at least an approximation of the word, she cannot have what she wants. This may seem cruel to those that don't live this life, but it has been indeed the only thing that has forced her into progress. She can sign, she can approximate, and for some things she can talk, but an absence of communication has become unacceptable. Everyday she fights to get her words out, and everyday, she gets just a little more accessible.

For more information on the sensory aspect of autism, visit:

http://www.incrediblehorizons.com/sensory-integration.htm

MobiGo Breakthrough

For Christmas, I bought JJ a MobiGo and Jadyne an Ereader, both manufactured by Vtech. Just the other day, Jadyne picked up JJ's MobiGo and sat in front of me. Tears streamed down my face as I realized my child without many words indeed was capable of complex thoughts. She manipulated the touch screen boards with ease, correctly solving multi-step processes, and best of all, she taught herself.

For several months preceding this, I was distraught, basing her progress on reports from the school. I worried she was hitting this "plateau" I've heard so much about from all the specialists over the years. What if this was it? What if after all these years, she doesn't get any better than today? Is it time to accept this is her potential?

Such is the life with an autistic child. It is full of heart-wrenching blows and tear-streaming joys. For every moment I have ever been faced with a perceived disappointment, it has immediately been met by Jadyne breaking down some barrier, showing me "This isn't it.....I'm not done fighting, mom." Wow, just wow, that child is amazing!

To view a video on the MobiGo, visit this link:

http://www.youtube.com/watch?v=mUntpIpBC30