Many long years ago when Rosalie started going to the neurologist, she was diagnosed with “Partial Complex Seizure Disorder”. Upon researching, I came to find out that this was just another term for Epilepsy. Apparently, that particular doctor found that telling a parent that her child (or in this case, children) had Epilepsy caused that parent to panic in fear. My experience is that any time you are telling a parent to start giving their child mind altering chemicals due to an electrical malfunction in their brain – you are going to instill a bit of panic and fear. Sugar coating the term Epilepsy doesn’t make it much easier to swallow!
The last 6 years of brain altering chemical anti-epileptic medications, research, and a whole heap of prayers have quelled my fears and panic. But that doesn’t make Epilepsy any easier to swallow!
Rosalie went to the neurologist last week and I explained that although we hadn’t seen any ‘drop’ seizures in just about a month, we are still seeing break-through partial complex seizures (staring off into the distance, altered state of consciousness, partially able to respond but not fully ‘with it’ – sometimes smacking/picking at lips or doing repetitive hand movements). Her medications were increased to combat those break-through seizures.
Mental note: thinking back, there have rarely been times when her partial complex seizures have completely been under control for more than a week or two. I count it a fabulous month when I’m only seeing one or two seizures a week. The last time I remember having a full month of seizure free days was immediately after hyperbaric oxygen treatment. But I digress…
Saturday morning, Rosalie was having breakfast at her cousin’s house when she got a strange look on her face and started stumbling towards the living room. She was laid on the couch and recuperated from this seizure fairly quickly (all traces seemed to be gone within a few hours).
Sunday was Rosalie’s birthday and after the party she was watching TV and something was just not right – I can’t quite put my finger on what it was that alerted me to this seizure. Was it the jittery hand movements that I had never seen before, or the unusually rigid posture, or the look on her face? Whatever it was I was positive she was having another seizure. She didn’t return to full coherent thought for a few minutes – as if she was confused or disoriented.
Monday there were a few times when I caught sight of a few extremely brief staring spells, but blink and you’d miss them.
Today I got a call from school at 12:34 pm. Rosalie had been playing, “then all of a sudden she just got incredibly weak”. The principal told me that she assumed this was a seizure since Rosalie just sat down and couldn’t get up to walk. She said “I remember you said that her seizures weren’t very dramatic when they happen, so I figured this was a seizure”. She gave Rosalie a big soft pillow and let her sleep it off. She was completely fine by 2:30 when I went to pick her up from school.
I called the neurologist to describe the seizure activity over the last week. He has ordered another 24 hour ambulatory EEG to figure out what is going on with my sweet daughter. The last one was in July – and she did not have any seizures during the entire 24 hours. No drop seizures, not even a hint of a partial complex seizure!
Rosalie does not like seizures. I know it sounds stupid for me to be saying that – of course, you say, she doesn’t like them. But you have to understand that the drop seizures are the only ones she really knows are seizures. After partial complex seizure activity, if you ask “Did you just have a seizure?” she says “No”. It doesn’t register that those are anything unusual to her. But after a drop seizure, if you ask if she just had a seizure, she will say “Yes”.
If you are a praying person, would you please offer up a prayer for Rosalie? First and foremost, that these drop attacks will not cause her lasting harm. Secondly, that DURING the EEG (next week sometime) she will have a drop seizure so they can figure out exactly what is happening in her brain. I feel like this is the only way we will get to the bottom of this puzzling change in her Epilepsy in the last year. Of course, it would be fantastic if the seizures went away completely!
Some days I give myself pep talks: “Great! It’s been a month since her last drop seizure, this is cool – maybe they’re going away!” This new seizure activity is calling like a beacon: “Reality to Cathleen: come back, come back!”
Dear Lord, you know my deepest desires. You know how much Rosalie doesn’t like these seizures yet you allow them to happen. I do not understand your ways, but I know you are a kind, loving God. You love Rosalie as your child and have a plan and purpose for her life. Please protect her from long term damage from these seizures. Please help her through her Epilepsy and Autism, and help her be a blessing to all she comes in contact with. Please, if it is in your will – please let one of her drop seizures be recorded on the EEG to help the doc’s figure out how to treat her. Give me wisdom and courage as I talk to the reporter tomorrow and help me portray my family’s needs accurately. Thank you for giving me this awesome opportunity to make our needs known. Let my words portray the North Star Foundation and their dogs accurately. Thanks for caring about all of this! In Jesus’ name, Amen!
Check back soon – I’ll be writing about the interview with the reporter from the Florida Today newspaper!