West Syndrome

My virtual friend, Bianca recently wrote a post about the experience her son Skylar had with West Syndrome. Skylar has a rare developmental birth defect called Schizencephaly. Bianca posted her seizure notebook and she spoke of the constant monitoring, the worry, the fear and many other emotions that comes along with having a child experience this rare form of epilepsy. It was only by chance we found each other in the Tumblr blogging world and I think I can speak for both of us and say it is so nice to have someone that understands the scary world of West Syndrome. I had a draft in my blog cue that was eerily similar.

These are the logs Rob and I kept when Lola was first put on Prednisone. We were to document the number of seizures in a cluster, the date, the time and if there were any notes of significance. My heart sinks just looking at these. I can honestly say it was one of the scariest times in my life. For almost four months we had a healthy baby girl. Sure there were oddities like her lack of visual contact, her low weight gain and her inability to breastfeed properly, but being new parents you just kind of think this is simply how my kid is. We didn’t start actually worrying about Lola until we noticed that she did not flinch when you suddenly put your hand in front of her. I kept saying it was as if she was blind, but our then pediatrician assured me her vision would come around in time. She responded to light so it was impossible for her to be blind. Then the strange ticks began. These tiny little movements that would always happen when Lola was falling asleep, when she was asleep or just waking up. Her arms would push out, sometimes her legs too, sometimes she would grunt and she would just appear blank. Like there was a Lola but no Lola. It’s hard to put into words. For about 10 days we watched Lola become more and more distant. Gone were the beautiful smiles that could light up a room, gone were the little giggles, gone were the attempts at new milestones. We were losing the conscious Lola. We were confused, scared, bewildered. We knew something was wrong and we vouched to figure out what it was. I will never forget the panic I felt when I found the YouTube video of a baby boy exhibiting the same “ticks” as Lola. I knew right then and there Lola had West Syndrome.

Lola's second EEG.

Of course we would go through all of the testing to get a proper diagnosis, but when everyone kept saying “I’m sure it’s not it”, I knew in my heart it was. Sure I didn’t want to believe it, but accepting the reality would get Lola help that much sooner. Thankfully the doctors listened to us. Lola was put on a one month supply of Prednisone to try and stop the seizures. I don’t think I slept at all as the anxiety, grief and worry for my child was almost too much to bear. Along with the emotional aspect, I would constantly be on the lookout for seizures. So much that I would videotape Lola as she slept to make sure I didn’t miss any.

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Then as you can see from the seizure log, one day they just started to dissipate. It was what we were anxiously waiting for, it was what we were praying for. In that month of the steroids, we witnessed a miracle…Lola began to wake up from the seizure slumber. She was conscious again, she was alive again. The smile returned, the giggles became full blown laughs and finally we knew we were getting our little girl back. We knew she had a long road ahead of her, but thank God the seizures could no longer hold her back.

Our moon face on steroids.

That was almost six months ago. She had one little hiccup with a seizure cluster last month, but we have yet to see any more. She has worked so hard to get where she is today. I have some before and afters of Lola and it is quite remarkable to see the difference. A difference that wouldn’t be possible if it wasn’t for Dr. Luna, Dra. Castro, Dr. Nisman, Moisés and Melissa. We were lucky to be in Costa Rica when all of this happened. If there is ever any doubt in my mind as to why we were here, I know in my heart it was so that Lola could get the best treatment possible.

Tummy time was impossible because she was severely hypotonic.

Now she is stronger than ever.

She rarely made eye contact.

And now we get tiny glimpses into those precious eyes.

Looking at toys was rare.

Now she can't get enough.

So while many would say Lola would have naturally progressed into these things, I would say that is simply not true. Sure some milestones may have been hit eventually, but leaving her brain the way it was without the medication and the therapy. . .well it’s scary to think of the condition she would be in had we not intervened. Lola was not the same little girl when she had seizures. She was still our daughter, but the Lola who occupied that body was somewhere off in the distance. As Bianca said about her own son, our children were like shells. Now that Lola is living a seizure free life we have watched her blossom into this strong, determined, hard working, loving, beautiful and smart little girl. We are so blessed.

I can’t stress how catastrophic West Syndrome really is. I read horror stories about parents being told “it is nothing” and it makes me cringe. All I can say is if you suspect your child has West Syndrome than fight. If you are turned away, go to another doctor or hospital. Do not leave until you have answers. We as parents know when something is wrong with our child so please make sure to follow that instinct. I am so glad that Rob and I did. Our little girl is who she is today because of our “gut feeling” that something was wrong. And thanks to a wonderful team of doctors, therapists and a lot of hard work, Lola is making great strides to pick up the scattered pieces that West Syndrome left behind. I share all of this in hopes that Lola’s story will help to inspire others. In honor of the millions of people that have some form of epilepsy, I will continue to share Lola’s story. I will continue to educate, to inform and to inspire on behalf of my daughter. She is one of the millions who suffers from epilepsy and we have to start raising awareness about this condition.

**Bianca is raising money with her awesome artistic ability to help with the Skylar’s therapy, medications, equipment and medical bills.

Check out her Storenvy site:

http://lovewhatsmissing.storenvy.com/