Lately a lot of people have been asking me about Larkin’s progress and more specifically her seizures. So today, since it’s Sunday, she is kickin it in her crib and has zero desire to hang out with me yet – I’ll write.
At about 4 months of age, I noticed that Larkin had become quiet. She quit playing with her toys. She wouldn’t look at us. She chewed on her hands the majority of the time. She smiled MAYBE once or twice but now that I look back – might have been a grimace. Grimace…isn’t he the purple guy from McDonald’s? Ok sorry back on topic. I thought maybe she was bored with her toys. I thought she didn’t like us. It was hard to pin point anything. Prior to this time frame, Larkin was rockin. She was happy, thriving and doing really well physically and developmentally. And then we lost her. There is no other way to put it. Lost. Like she was in a coma and we couldn’t reach her. I knew my child was in there. That was the frustrating part. I SAW HER AND I KNEW SHE WAS IN THERE.
I’ll stop here to explain what “seizures” look like. It’s not the drop, flop, frothing at the mouth. All Larkin was doing, when we first noticed it, was a startle reflex. Like a baby does when they are first born and you move them too quickly. Startle – hands out and sometimes the eyes rolling. That’s it folks. BUT babies lose the startle reflex after 3 months. I noticed it – noted nothing had startled her – I have one typical kid and I know when somethin aint right. It quickly turned into a type of cramping look when she woke up. I thought maybe her tummy hurt but I learned that it is called Jack-knifing. The body pulling in as if she was doing a crunch. Jack-knifing. Such a simple term but I have come to HATE it. We watched her “jack-knife” for a long time so I am allowed.
Infantile Spasms or West Syndrome was her diagnosis from an EEG. I am linking here so I don’t have to make this a marathon post.
We fought the good fight. We got control with ACTH which is a steroid that was used primarly in race horses and dogs. It is expensive – currently around $23,000 a vial – and Larkin went through about 10. So when someone tells me “yeah I have taken steroids” – you have no idea what steroids are until I shoot you up with this toxic substance that actually helped my childs brain. Here is my chunky monkey steroid baby –
Larkin was off and doing great again. She began to smile, look at us and bear weight. She looked like a sumo wrestler. But we got our girl back from the land of the lost. Remember that cartoon? Sleestak’s scared the crap out of me.
Notice my pause for humor? Notice how every single link I give you says “rarely” or “fewer then 5% of the population” It’s how I get through it. I have to segway into jokes here and there or it will all overwhelm me. It’s prayers, God, faith, love and hope but humor and wine also play a part. 😉
Wednesday, November 21st 2007. The head drops came back. That is all it looks like. A drop of her little head. A millisecond of time. Drop – up – dazed – back with us. Repeat this about 10 times and that is a seizure. I lost it. I hyperventilated. I exploded. Grief. That metallic taste in my mouth of fear. They were back. My peace of mind and ease of loving my child was gone. They stole it from me. I HATE THEM STILL FOR IT. They meaning the seizures. The “s’s” as I like to call them. Don’t conjure the demons up by speaking their hateful name out loud.
We started the Ketogenic Diet. It works. It’s not hard. It is the best thing we have done for her.
August 19th 2008 – Larkin was diagnoised with Lennox-Gastaut . This arrived with the words “Catastrophic diagnosis” which when written next to your child’s name, in her file that is thicker than any Stephen King novel, changes your life, DNA, thought process and health management forever. We began Felbamate which is the 2nd best thing we have done for her. She smiled 6 hours after her first dose. And 12 hours later we heard a giggle.
August 19th 2009 – Larkin is smiling, hugging us, trying to walk and beautiful.
I have reduced this journey because right now I am helping quite a few families that are writing their own story. They are in the first paragraph. I am towards the end. Larkin has few options from here and I don’t look at them because I can’t. I can’t go there yet. I won’t. Stubborn? Irish? Bitchy? maybe. I like to think I am a mother who wants to enjoy the time I have RIGHT now. That bridge might be built but I aint gonna be a part of it until I am forced to cross it. And I will cross it if I must.
I am getting ready to go into Unit 4 and write an IEP for Larkin. My plate is full again and every sentence I begin will go like this “In Larkin’s best interest” – because I know that Down syndrome is the least of it. The brain damage caused by these seizures is much worse. Damage that hopefully we can undo with therapy, medications and her growth. The brain is a mysterious thing and Neurology is 90% art.
I am asked a lot if I have a medical background. Yes I do. I am a Momologist. I have earned my PHD in Momology. I know these two souls that are the very best parts of me. One of whom is now singing from her crib and needs breakfast. Enjoy your day and know that even if it’s not OK – it’s ok.