save the brains

I’m sure all of my readers know that November is Epilepsy Awareness Month. (I do have readers… don’t I?)

I have written about our journey with epilepsy through this blog, as well as Caringbrigde (those entries can be found in the “about us” section). We’ve fought this demon for over 8 years now.

Becca has faced delays in development since she was an infant. At two months old she wasn’t turning her head and tracking like she should have been doing. Head control was lacking.

So many of my friends story of their child’s journey with Infantile Spasms or Lennox Gastaut detail how their child was developing normally until the seizures hit. Perhaps the child was even ahead.
Becca has never been developmentally normal much less ahead. However I have never given much thought to her regressing.

That is until today. I spent a little time looking through some old emails. The good thing about using MS Outlook to read my emails is I am able to save emails, even when our internet provider has changed over the years. I have emails dating back to January 2006.

I could see where I would talk with other families on this journey about my concerns and my joys. I could see where I would rejoice in new skills Becca had gained. I realized many of them were seen only briefly, sometimes to never be seen again. Sometimes the skills would just stay stagnate for years. Sure she was doing some cruising of furniture at 18 months. Little did I know at the time it would be years before she would actually walk on her own. That she would effectively stop crawling. So much so that if it were not for old emails or other journals I would think she never crawled.
I am shocked to see proof that she once babbled – A LOT. Now, she is quiet most of the day, making very few noises.

Rarely do I think in terms of what this horrible seizure disorder stole from her. Rather I think of what she never had. It is very sad to look back and see there have been times when she has a lot, and then it slipped away. Over and over again.
Lennox Gastaut is a horrible monster.
As she gets older I am seeing that more and more. I see what her having TWO episodes of Non-Convulsive Status Epilepticus this year have done to her.
So knowing the damage that the multiple seizures a day, every day has done to her brain I know that this November the idea of “Save the Brains” resonates even deeper with our family.


Friday, July 16, 2010 1:15 PM, EDT


I can’t believe my baby girl starts Kindergarten on Monday! I am so excited for her.

Yesterday we had her open house at school. Now granted I’ve already met her teacher during Rebecca’s IEP meeting, but yesterday was the first time Rebecca and her teacher got to meet. Rebecca loved the classroom. She instantly started exploring the classroom – no fear. Not that I expected any. Rebecca is the type of kid if there is someone there willing to pick her up and hug her she is a-okay. Instant love between Rebecca and her teacher. This class is going to be great for Rebecca. She is in a class made up of Kindergarten through 5th graders – all with severe and profound special needs. Including Rebecca

there will be 8 kids in the class, a teacher and two assistants (this doesn’t include therapists who will be there to work with kids). As far as her seizures go we are holding steady. We had a little bump in

the road when we tried to wean her off of clonazepam. That turned out to be a mistake. Her seizures got worse. She started having bad atonic (drop) attacks. She was having more seizures each day as well. I spoke with her Neurologist and we went back onto her previous dose and things have slowly but surely returned to normal. We are still dealing with a strong gag reflex with seizures that is part of her new normal for seizures.

Sad to think that it has been nearly 5 years since we started seeing seizures. It was at her 2 month well baby visit that I convinced her pediatrician at the time that her repeated eyelid twitching episodes were

not normal. Yet in these 5 years, she has never stopped amazing me. She has an amazing wonderful determination. She has the most beautiful inner spirit. I love to snuggle with her, and just sit there, the two of us gazing into each others eyes – the same way most parents do with their newborn. Its a joy many nights going in at night to give her the late night dose of meds. I only barely have to wake her up to get her to take those pills. Then she snuggles back down to sleep. Although some nights she is

awake and playing when I go in. but I enjoy the nights when she is asleep. Then I get to watch her sleep.

My friends, you should all go in each night – at least for a week, and watch your children while they sleep. Give them a kiss. Tell them how much you love them, how beautiful they are, how much God loves them. I love to whisper these sweet notions into her ear while she dreams. Life is going to come at her hard and fast one day. I want her to to have absolutely no doubt by then that she is loved, she is beautiful and God loves her.


Friday, July 23, 2010 12:50 PM, EDT


I am so happy with how Rebecca’s first week has gone!

Monday was great. She instantly adapted to her new teachers and her new schedule. I got the cutest set of pictures, one of her in the car seat right before we got to school, one when I put in in the car seat at the end of the day, and one as we just pulled into the driveway at home. The first pic she has this “why are you taking another picture of me” expression.

Getting into the car at the end of the day, you can see her exhaustion, but she is all smiles. When we get home – she is zonked out. She was asleep, until she heard the camera.

The picture included for the journal is probably one of my favorites from that day. Its the encounter

of Rebecca and her teacher. So incredibly sweet. The first week, and few days back after an intercession back are always the hardest on her (she is in year round school, and was also for Pre-K). It just wears her out. I know she will be in bed super early tonight, and sleep in late tomorrow.

So happy news – part of the routine in her classroom is setting the kids on the potty at diaper change

times (most of the kids are not fully potty trained). The first 3 days, Rebecca of course hated sitting

on the potty (same reaction we’ve gotten at home). Well yesterday they finally had a special needs

potty chair. In the afternoon they set her there, she didn’t scream and fuss and just sat there like a

big girl and then……she peed in the potty!!!!!!

Thursdays have been one of our Therapy days for a long time. She is getting PT and OT on Thursday

afternoons. You may recall several months ago we decided to switch from PT twice a week to once a


Well things continue to go so well that we are going to every other week. This is great! Another huge


Seizures are doing a little better now that we are back on Clonazepam.

We’ll go back to Dr. Mikati in September. Around November is when we will have her annual MRI (our

first on our new Annual schedule – hard to believe it will have been that long between MRI scans)

We are working on self feeding – using a spoon, these days. She is doing better with this. The process

is still me holding her hand and guiding her through the motions, however she is getting the concept.

She loves to crawl up on the couch to snuggle or get attention. Its cute – except when she does it when

I am trying to eat something or use the laptop. Yesterday she crawled onto the couch and then tried to

climb into my lap (while the laptop was there). Okay, you say put the laptop down and snuggle your

child. But as soon as I do, she is ready to get back down on the floor and play again. Becca plays this

game of “up, down, spin around, elbow you in the ribs”

but all in all she is on a hot streak – the good kind!


Monday, August 9, 2010 12:05 PM, EDT


I don’t remember the exact dates – and those are rather irrelevant since it took me a while to get the doctors attention. The fact remains, we are now at 5 years of Rebecca having some type of seizures. It all started out with these strange little eyelid

twitches. At the time she was a colicky little almost 2 month old. I was still breastfeeding her. When these events would occur she would stop nursing. I knew in my heart, something was wrong. I tried to explain it to the Dr. who was our pediatrician at the time. He brushed me off. “Oh everyone’s eyelids do that now and then, its no big deal.” At our next visit a few weeks later I brought it up again. This time I was adamant. “NO! She stops nursing when it happens.”

I watched all the color drain from the man’s face. It was then I knew, in my heart that my fears were confirmed. This is serious. He suspected seizures. David and I had already talked, we were smart people. We had looked online. We suspected as much. We went to see the Neurologist at UNC. Appointment was horrible. By the time of our Appointment Rebecca’s seizures had changed. No

longer innocent looking eyelid twitches, she was having what is referred to as jack-knife seizures. Her arms flung out and her knees and legs pulled up – or something like that. We have old video. It looks like someone walks up to her and says “BOO!” but the scary part is it happens over and

over and over again in a period of 3 or 4 minutes. Occurring every few seconds. All in all, in that time she might have 50 to 100 seizures. We never really counted the number of individual seizures, not for years later. We were to focused on helping our baby through these horrid things. But at this first Neurology visit – the man they call a Doctor, did not care about our video. He didn’t spend much time with our child. He told us that she was having “simple partial seizures” and that surgery was likely

her best option. He sent us home with a prescription for Tegretol sprinkle capsules. Keep in mind – this was for a 2 month old breastfed infant! David and I were appalled. The MRI had not been done yet, simply ordered. No EEG had been done yet, a “routine” EEG was being ordered. We would learn soo much more about EEGs in years to come. I think we saw him on one follow up visit, him still insisting the same thing – despite the obvious pattern of her seizure.

All of that – 5 years ago.

We’ve come so far. Learned so much more about Epilepsy, Seizures, EEGs and everything else in this world. Rebecca has gone from that first diagnosis of “Simple Partial seizures” to Infantile Spasms, which has now progressed to Lennox-Gastaut. She will likely carry LGS for the rest of her life.

We will continue to hope and pray for a cure for Epilepsy.

I am so blessed that Rebecca is a fighter.

So no, we don’t have seizure control after these 5 years.

But we have a beautiful little girl who loves life. She loves people, giving hugs and kisses (big wet slobbery kisses!)

She is learning so much. Yes, she learns slower than everyone else, she learns at Becca speed.

Back when I was pregnant I never dreamed I’d spend my days searching though websites with adaptive equipment.

I dreamed of spending days at the park, pushing my little girl on the swings, chasing after her as she climbed up the slide.

It doesn’t matter that my days are not what I envisioned. I learned a long time ago to make peace with those dreams. I’ve been able to embrace a new future with Rebecca. One that involves getting snuggles on the couch for years to come.

You see, there are blessings to having a child with major special needs. The extra hugs. The reason to go into her room each night and watch her sleep (I have to give her medication each night).

5 years of epilepsy. Not what I dreamed about when I was pregnant, no. Nothing I’d wish on anyone. And I pray every day God will heal her. However in the meantime I’ll have to look into her sweet face when she climbs into my lap for a hug and a kiss and think, “I love you just the way you are!”

A new diagnosis

Wednesday, October 31, 2007 7:50 PM


Wow – today’s appointment with Dr. Leigh took a long time. Not only did we not get back to see her until an hour and a half after our appointment time, but it took a long time once we got there.

Basically Dr. Leigh is concerned that Rebecca is now having what are known as Drop Seizures (Atonic Seizures for those who know the technical term). This means she is now having 2 seizure types. What this also means is instead of having Infantile Spasms, she is progressing into having Lennox-Gastaut Syndrome. This is more or less a progression of Infantile Spasms, marked by having multiple seizure types. We are going to wean her off of the Phenobarbital (at Mom’s insistence), and she will be started on a medication called Lamictal. Something we will need to do more research on, to consider after she is finished with her chemotherapy is called a VNS, or Vagal Nerve Stimulator.

This of course is something David and I need to do a lot more research on, but I know it is something that has helped a lot of people with drug resistant epilepsy, which is what Rebecca has. Infantile Spasms, and Lennox-Gastaut Syndrome (LGS) are both Drug Resistant Epilepsies. We took her to a few houses for trick or treating, but after such a long day she was really just ready to get in the bed. It doesn’t matter too much, we had so few kids come to our house that we have ample candy left over. Plus she got a few treats at the Children’s Health Center. There was even one nice Mother, Grandmother and cute little girl that had brought bags of goodies and let Rebecca pick out something. We got some Play-dough! That should be some fun sensory and Tactile stuff to play with – but we have to learn not to eat it. Rebecca also ate her very first lollypop! hopefully I will post the pictures tomorrow! At least She wore her costume to the clinic today!


Sunday, November 25, 2007 12:26 PM


Thanksgiving was good. Rebecca ate sooo much food. Thursday we went to Raleigh and spent the day with Grandma and PopPop and she ate some Turkey and all the trimmings, including a Becca sized slice of Pumpkin Pie. I can’t believe she ate so much. Everyone loved seeing her. Then Friday it was off to Thomasville and Kernersville to see Granny for Lunch, and then Grandpa and Kathy for dessert later. Again, for the 2nd day in a row Rebecca ate a lot of food. Friday she had some more Turkey, and fixings. For her deserts, she ate some Banana pudding. YUMMY. The Grandparents couldn’t get enough of her. Although everyone certainly got a taste of daily life with her. The little girl who doesn’t walk – but never sits still! All Daddy and Mommy kept hearing was “Wow, she sure is an active little girl”. Haha! Please pray that she can put all that energy to good use and start walking

on her own. On a good note – we should be getting her the helmet soon. We are expecting it to get ordered on Monday. I am very Thankful that this has finally come through for her.

One year ago we started the Chemo. Thank you everyone for all your prayers for the past year (and before, for the epilepsy). Your prayer has meant so much to me.


Monday, December 10, 2007 4:11 PM



We have our first helmet for Rebecca! today is day one with the helmet. so far so good. She even just took a little tumble backwards. Not a seizure, but just an uncoordinated fall backwards. But she conked her head hard – except for the fact she had her helmet on. So it didn’t even phase her. How wonderful. This past weekend poor baby was battling a touch of the stomach bug. Early Thursday am, I was awakened to her crying. I went in to see what was wrong, and discovered she had vomited. YUCK. Not the kind of surprise you want to find at 4am. I woke David up and we cleaned her up, and changed the sheets. She was fine all day, we went slow on the food and drinks. then again Saturday morning, she got sick. Several times Saturday. So we tried Saturday to get something into her, to keep her hydrated. Sunday we just spent the day giving her an ounce or two every half hour. Poor baby.

Tomorrow is another Chemo.

Wednesday we have a Speech Evaluation with the folks from Early Intervention. This will qualify her for Speech Therapy services.


Wednesday, December 12, 2007 10:10 AM


I added a picture of Becca in her helmet.

Basically we needed the helmet to protect her as she is playing and moving around in case she has one of her seizures. Even though the seizures she has are not what most people think of when they hear the word seizure, she still hits her head pretty hard as she falls. The helmet is a little big, which gives us room to grow into it, but we also still need to tweak it a bit so it fits her properly for the here and now.



Friday, December 28, 2007 1:47 PM


Rebecca had a very Merry Christmas.

It was the first holiday she has had that she was not overly sleepy or did not have so many seizures that cast a shadow on the day. She had so much fun exploring all of her toys as she opened them. Of course the wrapping paper is still as much of a toy as the item inside the box. It has not been until today that we are seeing the After Christmas crash, where she is more tired and having a few more seizures. But both David and I knew it was coming. We just feel blessed she could enjoy Christmas eve and Christmas day. After the first of the year Rebecca has another MRI, just a routine MRI, but it is something to pray we get good results for. We also have several clinic appointments in January. The Eye Dr, the neurologist, and of course her regular Chemotherapy appointments. Please pray these all go well.