Epilepsy Foundation

I wrote this post about Madilyn's journey thus far with her new condition--writing it to share w/ family and friends but I figured I'd share it here as well. I know I gave a pretty in depth summary when I first joined last week but I figured I'd post this as well.

I am thinking of all of you and your children and hope 2012 is a great year for everyone despite the challenges we face:

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I will never forget that Saturday in early December of 2011 when I realized our lives had just been turned upside down; the moment all the pieces of the puzzle fell into place and I came to the realization that our babygirl Madilyn (5 1/2 years old at the time) was no longer a "normal healthy" child. I remember my stomach dropping, my trembling hand coming to my mouth in shock and tears filling my eyes as I whispered to an empty room, "My God....she is having seizures".

 

The self diagnosis came quickly--after searching some symptoms online--and was verified by a pediatrician a couple days later and more firmly a week later at the neurologists office. It was almost, quite literally, a case of one day Madilyn being ok and the next she just wasn't. One day she was jumping on the school bus for another exciting adventure at Kindergarten and the next she was hooked up to an EEG machine and carrying a diagnosis note in her little orange folder from the neurologist.

 

How did this become our lives?

 

To bring us to present day, I have no choice but to return to the beginning--to the days prior to diagnosis. It was around mid November of 2011 when I can first recall Madilyn having an "episode". I told her to clean up her room and she simply stared off into space with a blank expression on her face. I did as many parents would do, I believe, and I clapped and gave a little "Yoohoo! Earth to Madilyn!". She blinked, looked at me and said "What?". I didn't think anything of it at the time. Who would? She was just daydreaming a bit, right? She had a little moment of zoning out, that's all.  Hell, I have those about 30 times on any given day. I couldn't begrudge her that.

 

I know that Madilyn had a few more of those episodes but I can't tell you the date nor time of day as I can now with every episode she has. I only know that she had them and I dismissed them. She never fell to the floor convulsing, she never did anything out of the ordinary. Quite the contrary, she appeared to be extraordinary normal. Just a little kid zoning out a bit, daydreaming, working through her thoughts. Nothing more. Simple.

 

It was around this time Madilyn also came down with a horrendous cold. You know the kind. God awful post nasal drips, such intense congestion that you literally feel it in your ears, a cough that made it sound like she partook in no less than a pack of cigarettes a day. One of those colds. And it lead, of course, to a secondary ear infection that left her feeling as if she was under water when we spoke to her and gave her some pretty great discomfort. She was placed on antibiotics and I was told she should be better soon. I thought how horrible it was that my little girl had to endure such an uncomfortable cold. Now I look back and realize it was a blessing in disguise; that cold and the medication were most likely the reasons these easy-to-miss seizures presented themselves in such an overt way.

 

There were several other episodes that occurred during the days to follow that we blamed on her illness or plain and simple five year old defiance. She was helping family friends, for example, decorate their Christmas tree and simply walked away, not responding to their calls. She walked away from her gymnastics coach and did a circuit around that area of the gym before returning to finish her routine. She got up from her chair while at the dr's and walked away from her father despite his telling her to return to him. But what else would we blame? Certainly not a neurological disorder. We have no family history of that; we had never even encountered a child with such a thing before. It was all due to her inability to hear well and her lack of sleep and that blasted cold or her just being five. Right? Of course.  I continued to think very little of it. She just didn't appear to be anything but a normal healthy child who was going through a nasty cold virus.

 

It wouldn't be until a bit later that I learned those above mentioned episodes had actually been going on since Halloween and had been dismissed by others as either rudeness, five year old defiance or daydreaming.

 

It was the morning of December 1st when one of those final pieces presented itself and I could no longer ignore that it belonged to a much greater and far more complicated puzzle than I could have ever imagined. Madilyn came into my room, early in the morning hours, to have her hair done before accompanying her sister to the bus stop. I was in the bathroom fixing her older sister's hair when Madilyn appeared in the doorway and simply stopped. She just stopped walking. She stopped almost all motion really. She froze, staring blankly infront of her like she was concentrating on something rather fascinating just past me. I bent down to her level and gently called her name to no avail. She simply stood there making a subtle chewing motion almost as if she was mulling over something not entirely pleasant nor distasteful. I called her name again, a bit louder this time. Nothing. I touched the side of her face and received no response. Madilyn was simply not there with us. She was somewhere else.The incident only lasted about ten seconds and then she blinked, focused on my face, flashed her famous ear to ear Madi grin and asked, "What, Mommy?"  I could only kneel there and study her. Something wasn't right. In my gut, I now knew...something wasn't right.

 

Previous events that I had dismissed suddenly took on new meanings, made more sense, and were forced into a new light.

 

Between the time of self diagnosis and our multitude of dr's appts that were to follow, we became experts at detecting when an episode was upon us. The sudden serious face, the lids that would go half mast, the blank eyes, the lip smacking or chewing, perhaps a fumbling of the hands, or even an absent minded scratch of her face, and-a few times- even a half-heartedly returned hug were all signs (that could so easily be overlooked) that we now knew were actually symptoms of small seizures. Her recovery from the episodes was instantaneous; the light would suddenly return to her eyes without a hint of confusion nor drowsiness and she usually had no irritability. But she also had absolutely no recollection of the incident. It was as if those ten seconds just simply didn't happen in Madilyn's world.

 

I began a journal the morning of December 3rd and vowed to record every episode I--or anyone else--witnessed no matter how big or small. I would record every aspect of the episode from environmental conditions such as lightning to what she was doing directly prior to, duration of, symptoms during...all of it. My list began on a piece of scrap paper and only took up a small fraction of its entirety. Today that paper is completely filled, recorded in almost microscopic handwriting. It frightens me to know how quickly that was accomplished.

 

Our first appointment with the pediatric neurologist was not exactly informative. Sure, they induced a seizure simply by having her blow repeatedly on a pinwheel and thus, they were able to easily diagnosis her, but I left feeling like I should have atleast had a packet of information in hand or a few links to reputable resources. Afterall, go in for a simple well baby visit at your child's pediatrician's office and you leave with a pile of propaganda on vaccinations and yet here I was facing a neurological disorder with my child and I couldn't even receive the token tri-folded reassurance that one in every 500 children have this condition or that odds were in her favor that she would, one day, outgrow this? Nothing? I left feeling a bit defeated.  Hell, the only explanation I was given was the fail safe broad damning of bad genetics.

 

They tell you not to look online. Don't research. Simply listen to your doctor. But when left to your own devices, what choice do you have really? And so the obsessive research began. Wedmd, Mayo clinic, the Epilepsy Foundation, medical journal articles that read like a foreign language. I tried to stick to the reputable websites but I quickly began to pour over any literature of any kind that might, in any way, relate to Madilyn. Matt took over household chores and child duty while I spent hours online researching conditions, omega-3 and GABA supplements, KETO diet opinions and just about anything else that could possibly shed some light on this--to me--mysterious condition that just suddenly decided to appear in my child one day.

 

On December 29th, Madilyn experienced her first EEG. The room was a welcome change from the all too familiar institutionalized Naval Hospital feel. Oh my, they even had a red painted wall. Awesomeness. Sketchings of hot air balloons and other child friendly images were carved into the ceiling tilings and a stained glassesque covering adorned the florescent light above. Neato.  I had wondered how they expected a five year old to sit still for upwards of an hour. Ahh a flat screen TV with cartoons. Got it. Madilyn settled in easily enough on the bed--fascinated by the wires and the cool hat she got to put on as the tech began to mark the placement of the electrodes and swab some jelly like substance onto Madilyn's scalp and forehead. Madilyn examined herself in my compact mirror and giggled at her rather odd appearance. She insisted she had seen this on Zoey 101 one time before. The fact she even saw an episode of that show is, admittedly, not one of my prouder moments in parenting but I digress...she was doing well. 

 

The tech dimmed the lights and turned on the monitor. Madilyn's brain wave pattern would report on a computer screen but her every move would also be recorded via video. I snuggled up next to her while Matt stood beside her and we waited. It was almost immediate that she had a mini seizure but quickly came to. From there, the tech flashed lights (to which she didn't immediately respond) and then had her blow again on a pinwheel. Madilyn began to have a multitude of seizures during which she might scratch at the electrodes on her cheeks or ears, wipe an escaping tear, try to sit up--all the while her eyes would gently shift left to right. Most of them were only 5 to 10 seconds long but with each one, she came to a bit more upset and irritable. It was obviously difficult to watch and when I heard the tech say she wanted to page the neurologist, I admit I was a bit concerned. The best I could have hoped for that day was the appearance of a typical generalized 3-Hz seizure pattern; anything else could be indicative of another abnormality and possibly indicate that Madilyn would be more susceptible to grand-mal seizures and not be handed such a positive prognosis.  However, the dr arrived, spent some time studying and did declare that Madilyn was "only" experiencing very typical absence seizures and had a good chance of outgrowing them. They should not disrupt her sleep, should not not lead to grand-mal episodes and simple things like flashing lights should not trigger a response.

 

Funny that I could now find that news reassuring.

 

Medication was something I was desperate to avoid. Who wants to give their child a medication on a daily basis that carries risks such as mood changes, suicidal tendencies, unusual hair growth, life threatening rashes, aseptic meningitis and the like? These types of seizures don't carry a risk of brain damage. They just simply carry a risk of secondary injury that could occur during bathing or swimming or biking, etc. Ok. So I will just homeschool her, never let her leave the house unless literally tied to my leg and for good measure, I'll put her in a bubble. That's not unreasonable. She won't resent me later in life for that, right?

 

As I sit here and type this, I am realizing this is probably the eve before medication will begin and if it isn't, that eve will come soon. Although I would much rather avoid medication, keeping an active, precocious, outgoing five-year-old glued to your side just isn't feasible and although diet and things like a consistent sleep schedule can help reduce the number of seizures, it appears only medication, at this point, offers any hope of eradicating them--or atleast bringing them to the point of near eradication--and allowing Madilyn to return to her normal childhood; a childhood full of sleepovers, swimming in friends' pools, uninterrupted academic lessons, peer acceptance, and days of never again worrying about riding her bike into a parked car or walking into a wall at school or, God forbid, having a wetting accident infront of friends. Children can be so unintentionally cruel. We just want Madilyn's life to return to the way it was back in October 2011 before this condition decided to make itself known in our little girl. We just couldn't accept that medication might be part of the solution until we had fully done our research and taken the time to be ok with that decision.

 

For over a month now our lives have been ruled by this. Our every move has been dictated by this condition. Would Madilyn be rested enough to go to the upcoming birthday party? Are we ok to leave her at friend's house for a bit? Madilyn has to bathe, who is going to be the one to sit with her this time? She wants to go ride her bike outside, who is willing to stop what they are doing to watch her like a hawk? Just as we were embarking upon a time of allowing Madilyn to have a little more freedom--a little more independence--we felt like we were taking a step backwards. It was frustrating to us but moreover, it was frustrating to Madilyn. She was tired of being watched every second, of us constantly asking her "Madilyn, are you ok?". She was tired of us being across the room one second and then right in her face the next because she missed out on the 10 second transition in which our movement took place. And I can assure you that she was most certainly tired of missing out on the pleasure of enjoying a piece of candy because, gosh darn it, she didn't recall ever eating the darn thing!

 

I suppose I can't conclude this journey of how we came to realize not all was well in Madilyn's world without atleast mentioning the emotions we have experienced throughout the process although I am sure most of you can imagine. Frustration, anger, resentment, sadness, despair, depression, hopelessness, anxiety, apprehension--all of it has come in waves. I have cried and demanded to know why--why my sweet little girl? The girl who wants to make friends with everyone she meets. Who gives the most enveloping hugs one can imagine to anyone willing to receive them. Who sees others for the friend they can be and not by any disability or other characteristic that might make other children hesitant. Who is clever, perceptive, empathic, loving, caring, hilarious and so full of life? But I suppose every parent goes through that pondering--don't they?--when they learn of their child's illness or condition.  Why any of our children? They certainly don't deserve it. But why should any of us be immune to life's uncertainty and sometimes seemingly cruel ways?  It is what it is in the end and we can only do our best to help Madilyn through this time in her life and hope like hell she is one of the 70% that eventually outgrows this. And if she isn't? Well then, we'll help her through that as well. 

 

My main hope for Madilyn now is that everyone will see her for who she truly is and not just see her condition.  I don't ever want the "one-in-a-million Madi" to cease existing simply to become "that poor girl with the seizures" in other people's eyes.

 

My goal in writing all of this--besides the desire to do a little self therapy--is to make others aware of this condition and how easily it can be missed. I have read and have been told that many times this condition can go years without being diagnosed, or is misdiagnosed as another condition such as ADD, or is missed all together. I can only imagine the agony children who have this condition and who are left undiagnosed endure: the social and academic ramifications; the cruelty of peers; the stigma of being labeled spacey or unintelligent or flighty; the anguish of being yelled at to "get with it!" or to "snap out of it!" when they have no recollection of ever losing focus to begin with; the disorienting experience of having their environment change without ever seeing the transition; and the horrible experience of simply being pushed aside when people in their lives think them rude or defiant. It pains me to think how easily this could have happened to Madilyn and bothers me greatly to know it's happening to others out there.

 

For anyone wanting to learn about absence seizures, visit: http://www.mayoclinic.com/health/petit-mal-seizure/DS00216

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Yes, exactly...I never want people thinking ill of madilyn. they were--they were thinking her rude or defiant and didn't mention a thing to us. it actually turned out she wasn't hearing them when they spoke to her because she was having a seizure. Breaks my heart. Madi has become more clingy to me, too, which she never did before but the timing was confusing to know if it was the seizures or because my husband was just home. he's military and has been gone far more than he has been here--and he had just been gone for a deployment. Actually the morning of her 5th birthday they deployed for 7 months so she awoke to daddy just being gone and not returning. So when he first got back, she was clingy to him, to me. I never noticed it as a side effect of possible seizures (not having realized what was up with her yet). Now I over analyze everything...constantly questioning if it's normal exhaustion or the meds. normal just wanting to be with me or the seizures affected her mood. her being challenging because she's five or because she can't control herself due to the seizures. One day a time, right? Blessings to you as well!

thanks! she has a HUGE personality :)

"I will never forget ...when I realized our lives had just been turned upside down"

 

Big hugs to you.  I had that moment in September. 

I had also been struggling for months with the notion that something was just not quite right with my toddler.  That "notion" concluded with 2 grand mal seizures, and that same awful feeling in my stomach that my baby was no longer "healthy."  I also can relate to the struggle re: whether or not to medicate.  I hope the meds work for you, and that you find a lot of support!

I was diagnosed with epilepsy at 29 with absolutely no family history either... But with a lot of history of concussions from 
Soccer. Please know that Maddie is completely normal and the light is not 
Gone from her. The tough part may be finding the right meds and dealing with side
Effects... But as long as you walk with her side by side... And not behind her or in front... It will help. She hasn't changed... I promise!  Love her, hug her
 And understand that it may be a tough road ahead. We are here for you and Maddie too of course!!
Sara

excellent post. Thank you!

Very well written!  It's like you were telling my own daughter's story, only a lot more articulated.

 

How is she now? Did you try any of the diets yet? We are new to this whole thing (our OMG-it's-seizures moment was 1/27/12).

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