An Epileptic Adventure

In March, we learned that Rae was epileptic (read about it: Act I, Act II, and Act III) and it really shook me up (no pun intended) because she had been having seizures since she was less than five months old. I just thought she was being startled.

Since then, we have changed medications once (from Keppra to Trileptal) and steadily increased her dosage. Unfortunately, back in June, we maxed out the amount of Trileptal that Rae is allowed. We were given a prescription for a medication called Zonegran, which would work in conjunction with the Trileptal in hopes of preventing any additional seizures (not a guarantee, this process is all trial and error). We had reservations about adding the Zonegran and I consulted doctors, nurses, other parents, and my sister-in-law. Our biggest concern centered around the potential for Rae to develop kidney stones. One component that creates kidney stones is lack of adequate fluid intake. Great!

Rae with Auntie Nona.

Rae, on a good day, will take two 8oz bottles. On a great day, she'll take three. On a bad day, well...I resort to Pedialyte and Pediasure and hope I can get her to take at least one full bottle. Of course, on those bad days, I supplement with watery foods like applesauce or purees. I'll give her pure juice if I think she'll drink it. When I'm really desperate, I cave and hold her (and her bottle) while she drinks just to make sure she is swallowing and not playing. Some days, coaxing Rae to drink is about all I manage to accomplish (thank God my husband understands).

When we took this into consideration, we decided to not add the Zonegran, not yet at least. We felt the very small, seemingly infrequent seizures she was having weren't severe enough to risk the side effects. A second MRI was completed in May and it showed no changes in her brain. That told us that the seizures she was having weren't causing any damage (at least at this point...knock on wood). It looked like the seizures plateaued. Of course, that didn't last long.

In the last month or so, we have witnessed an increase in the intensity of Rae's seizures. It isn't completely impossible for her to have one that is stronger than another; so, I observed her when she was sleeping (she only has them she she is asleep) and I started thinking maybe it was time to consider adding the Zonegran, but I was still on the fence. Then I spoke with my cousin (who is also epileptic) and she told me about a seizure she recently had that left her body sore for days afterward. This got me thinking about how Rae's body felt after a seizure. It's not like she can tell me how she feels (she's non-verbal). I started leaning over towards adding the Zonegran even more. Next, I read a post from another mother in my Hypotonia support group whose daughter also has seizures and she noted that after having a small one her daughter would regress developmentally. Then a bigger seizure seemed to "reset" her daughter's brain and she was able to do things like pulling up to stand. I don't think if Rae has a big seizure she'll start crawling, but they are probably impacting her development (something else to consider...I leaned even more). Lastly, for two nights in a row, Rae has fallen asleep in the living room only to suddenly wake with considerably stronger, more intense seizures that are lasting at best for 30 seconds. This is two to three times longer than the seizures she exhibited over the summer. At this point, I officially jumped the fence.

After discussing a change in course with my husband, we have made the decision to add Zonegran. This was not a decision that was made lightly and it hurts my heart. Tonight we start the 4 week process of adding Zonegran to Rae's daily medicine regiment. Say some prayers for us because we don't really know how this new course of action will effect her.

Sun Beams: Walk the Talk

It's been over two weeks since the RAEdiant Striders braved the inevitable downpour and walked for the Epilepsy Foundation on March 31st. A lot has happened in those two and a half weeks which is why this post is late in coming.

The RAEdiant Striders!

First, I'd like to say a big THANK YOU to those that came out to support us. It meant the world to me that you came even though we all knew a torrential rain was heading directly for us. I even cried a little because even though I know we're not alone there are times when I feel like we are and seeing you all gathered there in spite of the weather overwhelmed me with feelings of the support and care you have for us.

Rae was fascinated with the purple balloon.

Secondly, a big THANK YOU to everyone that donated to our walkers. By the end of the weekend we raised $355 for the Florida Epilepsy Foundation. Their grand total for Walk the Talk was $44,986 and we couldn't have done it with out your contributions.

Our little RAEdiant Strollers ready to ride!

Thirdly, a big THANK YOU to those that wanted to be there, but were not able to due to prior commitments or illness. I appreciate that your hearts were with us.

Tuckered out after an exciting long day.

RAEdiant Striders

After learning about Rae's epilepsy, I decided to dive right in and create a team for Walk the Talk for Epilepsy. The walk is on March 31st and we are the...

If you'd like more information about how you can become involved with the Epilepsy Foundation or to find a local chapter click here.

To support the RAEdiant Striders please see our team page.

A big thank you to Rachael Sinclair, a graphic artist, of Louisville, KY for creating a beautiful, bright, logo for our group...

For more information about Rachael and her work please see:

Rachael Sinclair at Behance

or you read her design blog at:

The Jellybean Tree

Once again thank you all for your support and I hope we have beautiful weather on March 31st...

Let's all Walk the Talk for Epilepsy!

The Results...Final Act

Now that we've gone to the doctor, made it out of the parking garage, past reception, and completed the EEG...it's time to hear the results (...and there was much rejoicing. Yay!).

Of course, I was a little less than enthusiastic and more apprehensive since my gut was twisted up in knots and would not shut up. It just kept telling myself that I already knew the answer so why don't I just admit it to myself and move forward. But I didn't listen. I wanted to cling to the last shred of hope that I may have left. Sure the evidence was stacked against us, but maybe it's all just a misunderstanding (cue nervous laughter). Rae's fine. We're fine. Everything is fine. (borderline crazy at this point)

I hardly slept...

Our appointment was for 10:45am. Okay. I can handle that. That gives me plenty of time to get Rae dressed, fed, and ready for another long day. Heck, there was even enough time for me to have my 3 cups of coffee and make myself somewhat presentable. I nervously fluttered around the house packing snacks, bottles, lunch, and toys to keep Rae content and occupied. I turned the key to my KIA at 10:15. That gave me 30 minutes to drive 7 miles to Nemours. More than enough time to secure a decent parking space (close to the elevators), glide through check-in (charge please), ride an elevator to the Neurology department, and sit in the lobby until a medical assistant call's our name. At least that is what I thought...

The appointment was at 10:35! Ten minutes sooner than I meticulously planned for...CRAP!! 

Cue emotional over-reaction...(right on schedule) My mind raced through all the possible scenarios (mainly every possible variation of the same one)...what if I'm late enough that they make us reschedule and then I have to wait all weekend for the results?!?! I make frantic phone calls to Nemours, my husband, and my mother. I also yell at some heifer in a Mercedes (aren't we important) too busy applying make-up to notice the light has been green for a minute now and she just sits there...OBLIVIOUS! I beeped my horn casually...not too long to be obnoxious, but long enough to garner some attention. Well Miss. Benz sat through the entire green light and managed to sit through half of the second one (I believe it was intentional since I dared to beep my KIA horn at her). I was losing it BIG time! Time was just ticking away and the reality of our most recent situation was no longer at bay. I was in full blown meltdown. Yes, my husband heard most of this meltdown via phone and I'm not great at apologizing for these moment...I'm flawed that way...but I try to make it up in other ways. (honestly I buy/make him treats, a pattern I learned from my Dad...I know I'm a P.I.T.A. that's how I apologize for it)

After a very stressful trip to Nemours, I managed to secure parking, speed through check-in, ride the elevator, and have our named called with little fanfare. (thank you Lord) Now we wait in our tiny exam room for Nurse P. to come in and tell us what we already know (thanks again stupid gut).

Rae has epilepsy...

The seizures are starting in one part of the brain so it is considered a partial seizure. Since she's non-responsive this makes them complex seizures and it looks like (referencing the test) the seizure is moving (secondary generalization) to include both parts of her brain. We want to start her on Keppra (warning child may become irritable...whee!) and the dosage will more than likely have to be adjusted. Monitor her for the next couple of weeks to see how she is responding to the medication. She hands me a thick book about epilepsy, informs me Dr. H wants to have another MRI completed, some additional blood work and a follow-up with a colleague Dr. B after the MRI.

The rest is a giant blur... My mind went numb with information...

We went to the lab for a very uneventful blood draw, wove our way out of the clinic, packed everything back into our KIA, and drove to see Mimi. God only knows what I would do without Rae's Mimi... Then, after all the excitement, I drove to Toy R Us to buy a new toy only to discover that Rae had eaten her band-aid (I swear she eats everything she can get into her mouth). Fortunately, it didn't make it past the roof of her mouth (thank you again Lord). A little therapeutic shopping and it was time to go home with a sneezing Ernie clasped in her tiny, bruised hand.

Do any of you over react to something completely unrelated to what you're actually upset over? I hope I'm not the only one...

Still Shakin'...Act 2

If you haven't already read Whole Lotta Shakin', you may want to take a moment to catch up...

After winding our way through the parking garage and corridors of the hospital, we finally reach our destination...the children's hospital entry way, complete with giant crayons standing guard. We are thirty minutes early. I didn't want to risk some sort of administrative mix-up and be turned away. The lobby is almost everything you'd expect to see in a children's hospital with colorful play areas, reflective surfaces,  a stage (for those children with dramatic flair), a library (sssshhhh!), a play truck, and of course exhausted looking parents waiting to hear their name called by anyone wearing scrubs or a hospital badge. I approach the counter and wait... Finally, someone inquires why I am here.

Admin: "May I help you?"

Me: "We have a 2 o'clock appointment for a sleep deprived EEG. It was scheduled by Dr. H at Nemours this morning. It was kind of an emergency."

Admin: "Name?"

Me: "Rae Doe"

Then I wait some more while she makes phone calls and tries to verify that we're supposed to be here. <sigh> I hate this part. I would have been drumming my fingers on their countertop if I wasn't holding Rae.

Admin (on phone): "Do you have an appointment scheduled for Rae Doe? I don't see it listed. Uh-huh Rae Doe. Dr. H at Nemours. An add-on? Oh. Ok." Looking back up at me, "Could you please have a seat? We'll call you back in a moment."

<sigh> I really wish they would define "moment" better because what she meant was 27 minutes.

Now we wait again. Don't they know I have a sleep deprived, slightly cranky, baby on my hands? Come on people...just tell me you have the information and I'll stop worrying that you're going to tell me that you can't see her today. I'm a little frazzled here since her check-up with Dr. A turned into a medical emergency and she's probably having seizures. Oh well...I guess there's nothing I can do other than just wait... Argh! Well at least we are thirty minutes early.

Tick-tock, tick-tock...It's 1:57!!!

Admin: "Doe."

Me: (Finally!) "Yes, that's me."

Admin: "I need you to sign here releasing blah, blah, blah (so wasn't paying attention). It's a $300 dollar co-pay today."

Me: "Can you bill me?" (forced smile, come on give me a break we weren't expecting this)

Admin: "No." (complete with deadpan look on her face)

Me: (since you put it so nicely...whipping out my charge card) "Oh...okay." (at least I get reward points)

That's a lot of wires!

Now that all the pleasantry is over...time for the EEG. Up the elevator we go...Ding! I check in once again and wait...the waiting never ends. If you find yourself just starting your life in Amsterdam get used to waiting...you do ALOT of it. Finally, a nurse comes to get us (just me and Rae...sorry Mimi) and we wind our way through the hospital corridors. We're led into a small room with a hospital bed, reclining chair (for parents), counter area & these (see pic) lying on one side of the bed.

Now I don't do well with the unknown...who does? More than anything though I hate it when someone has a chance to describe what I'm walking into and doesn't. Since this was an emergency and I didn't really have time to research when we were home (I had to keep Rae awake...that was a full time job by itself) I had no idea what to expect. That being said, the EEG process includes wires, glue, gauze, and tape. I laid on the bed with her while the nurse placed glue and receptors all over her head, my only job was keeping her hands out of the wires and her hair...epic fail...Rae's quick! In the end this is what my baby looked like.

It's a Baby Borg with the mumps.

She looked so uncomfortable.

Towards the end of attaching all the receptors Rae started crying. I laid in the bed with her patting her tummy and softly saying, "Sssshhhh, sssshhhh, sssshhhh." (she has always found that comforting) After a few minutes the forbidden sleep was no longer denied and she drifted into her dreamworld. Sometimes I wonder if she can walk in her dreams...I know she does in mine. Does it make me a bad Mom to hope that Rae has a seizure during the test so we don't have to do this again?"

Tick, tock. Tick, tock...

The nurse came in to check on us (which woke me up...oops!) She told me that if I noticed her having a seizure that I could press a button to mark it on the film and make it easier to located when its reviewed by the doctors. Okay, so now I have a job...which means no more napping for me. Unfortunately, we didn't have to wait much longer...Rae's eyes popped open with that glazed over look and her arms, legs, and head were all shaking... Damn! I pushed the button. It's what we needed to happen, but it hurts to watch her convulse like that and feel helpless the entire time.

Just after having a seizure and waking up.

I waited to see if she would fall back asleep, but she didn't so I stepped outside our little room to get the nurse. It was over. Now it was time for the clean-up. This is gonna get messy (it didn't).

Removing the receptors.

The dots are small circles of cloth and glue.
This is gonna be fun to get out!

I was informed that we had an appointment with Nurse P at Nemours the following morning to go over the results of the EEG. To clean the glue from Rae's hair we only needed to use warm water (and maybe some shampoo). We joined Mimi in the lobby, gave Rae a bottle and stated getting everything together so we could go home. This is going to be a long night for me and my gut was already telling me what it believed to be true. Sometimes I wish it would just shut-up! This day didn't feel like it was ever going to end.

Major BAD hair day!

After the days exciting events, we were finally home. On the bright side, the glue actually lathers up like shampoo and was very easy to wash out...much to my relief. The day did end. The results would be reviewed tomorrow, I would have something else to research and another symptom to add to the puzzle. One more step closer towards a diagnosis (hopefully).

*Part 3 coming soon....

Whole Lotta Shakin'...Act One

Might as well rip the band-aid off...

Oww, oww, owwwwww!

Rae is epileptic. I'd like to say that I'm in some state of shock or in denial about her most recent diagnosis, but I'm not. Instead, I have jumped off the high dive, in full on free fall, holding my nose closed with my fingers, waiting to be smacked by the hard, cold water and hoping for the best.

Here's the backstory:

Rae had tremors when she was only a few months old. I mentioned it to our PCP and he felt it was normal given the situation in which they occurred (usually right when she woke up). We were all fairly confident that she was having some kind of startle reaction to whatever environment she found herself when upon opening her eyes. Oops!

I later mentioned this again to our Neurologist (at six months), but once again he felt that was perfectly normal give her age and it was not anything to be too concerned about at this time. Double Oops!!

Months pass....

My husband was still concerned about the tremors and I was in some sort of denial and still believed that maybe (knock on wood) they weren't anything serious and still just some kind of startle response. Now I'm mentally flogging myself because I was wrong. My gut was right, but my actions were totally wrong.

It wasn't until I started talking to an employee of our local Babies R Us, whose daughter is epileptic, that I began to seriously doubt what we were actually dealing with and began believing she was having (gulp!)...SEIZURES! After I described what Rae was doing, the woman advised me to record the tremors and take them to the doctor. It would be easier to show them what was happening because unless she had a seizure while in their office or during testing they wouldn't know what was actually going on. That's when I started climbing the ladder of the high dive.

I went home, charged my video camera, dumped all previously recorded videos into my computer, made an appointment with Dr. A for the following week and waited. In order to ensure that I captured the tremors on video, I made Rae nap in our living room. During that time, I discovered that she was having these episodes way more often than I believed. Almost EVERY nap time she would awaken suddenly, get a vacant look in her eyes, and shake...all over. I wept.

After a few more videos, some minor editing, and uploading the compilation to my Nook I was ready for our appointment with Dr. A...or at least I thought I was. When he viewed my video he was instantly concerned, stepped outside to place a call to our neuro, Dr. H, and wanted to have an EEG done asap...(big gulp!)...my mind was screaming, "That can't be good!" In a matter of minutes, we were scheduled for a sleep deprived EEG at 2 that afternoon. Now I just had to keep her awake till then, which is usually not a problem since she hasn't been napping till 3 or 4, but of course today had to be the day that she wanted a nap.

The video is a tad long and the final clip is to show that it wasn't noise or touch waking her.

I make arrangements for Mimi, my Mom, to ride to the children's hospital with me so she could keep Rae awake. That worked perfectly until we reached the parking garage. We waited for like five minutes for a woman to evacuate her space. I swear she was twiddling her thumbs. That's when Rae chose to nod off...she was out in an instant (crap, crap, crap). I threw my truck into park, hopped out of the drivers seat, flung the back door open, desperately unlocked her 5-point harness (while Mimi was rubbing her face with a cold wet towel), lifted her out of the car and started swinging her in the air. I'm sure the three car caravan behind me thought I had lost my mind. Once I passed Rae off to Mimi, I took my place back behind the wheel and proceeded to beep my horn at the oblivious women in the SUV. I was never happier to see reverse light trigger. FINALLY!!

Well, much to Rae's displeasure. we made it to the hospital and she was still awake. Now we had to get past registration and through the EEG... All I can think while walking the plank is, "I sure hope I don't belly flop."

*Shakin' Part 2 coming soon...