Our Florida Adventures

We had our 6 month visit with Dr Miller scheduled for November.  We decided to move it from the regular clinic day and combine it with our Thanksgiving break.  Two birds with one stone! 

Before we even got to the hospital, we had all sorts of drama.  Cole had been having very frequent tonic clonics at this point and we were nervous (as always) about flying.  Somehow taking care of a seizure at 30,000 feet isn't so easy.  Landing the plane, also not so easy.  We gave him a double dose of Keppra per Dr Miller and sent up a hundred prayers that he could make it on the flight.  God has a sense of humor!  Cole made the flight, but had a severe seizure at baggage claim.  We were quite the sight.  Urine streaming down my legs (Cole's), holding a seizing child, Brian trying to grab our bags off of the carousel, Slugger wondering what the heck was going on.  Hey-he didn't have one ON the plane!  The next day he was so bad that we considered calling 911 and going to the local hospital.  However, we totally knew that if they admitted us, we would not be discharged in time to make our appointment in Miami the next day.  We didn't call, Cole made it through the night.  We got up the next day and headed 3 hours south to Miami Childrens Hospital.

While we were there, Cole had his first sleep study.  Results show there is no major change.  He is still seizing throughout the night.  No sleep apnea though, hooray!  We discussed with Dr Miller the increased frequency in tonic clonics and myoclonics.  Cole had not been sick lately and we felt like we had a baseline established, as fluid as it was.  Bottom line was, we knew that the Onfi wasn’t working. 

Dr Miller, as great as he is, basically tells us during our appointment that we are running out of options.  Which we kind of already knew, but it is hard when one of the best doctors in the country for what your child has, tells you that he can’t help you.  Cole has tried 7 or 8 meds at this point and has failed them all except Keppra-which we really don’t think is working very well anyway.  So we decide to get off of Onfi.  Next stop, Verapamil (a blood pressure med of all things).  You know we are all about Plan A, B, and C…so after that, it is time for Stiripentol or revisiting old meds.  We discuss alternatives such as VNS, medical marijuana (which is illegal where we live), IVIG, steroids such as ACTH or prednisone.  He wants to see us in 3 months.  Okay, now things are really getting real.  On the day we visit Dr Miller, Cole has three tonic clonics.  He also seems really sensitive to light.  Much more than usual and is hiding his head under a blanket.  I will say again, seizures in the car, on the freeway are definitely ranked in the worst top 5 places to have your child seizing.

The next day all hell breaks loose.  Cole has 4 tonic clonics and was basically in NCSE (non convulsive status epilepticus) the entire day…we just didn’t know it.  He is inconsolable and we can tell that he is in terrible pain.  He is actually complaining of eye pain.  For a kid who has run around on a broken foot, twice, this is huge.  The light sensitivity is very intense and he wants his special glasses on even indoors.  We try a double dose of Keppra, Motrin, Tylenol…nothing is working.  We contact Dr Miller and tell him we suspect a migraine.  He tells us to give a combo of Benadryl and Aleeve.  By tonic clonic #3 we are getting anxious.  We give Versed, it doesn’t help.  Cole can’t hold up his head, is drooling profusely and can barely speak.  Yet, he doesn’t want to be left out.  The boy is adamant that he is a part of the holiday party and refuses to sit out in the car with me.  So I take him inside and he sits on our laps, wrapped in a blanket as we eat and looks the definition of disabled, which is rare for him.  But he is there and he breaks out a crooked smile; such the definition of resilience.  At TC #4, it is evening and we call the on-call neuro, who told us she was extremely nervous and wanted us to come in.  It is never reassuring when a neurologist admits to you that they are nervous!  We explained that we were 3 hours away and would have to be Life Flighted, which could take over 5 hours from start to finish since we had to go through the local ambulance, hospital, etc.  She agreed that it could take too long.  Getting through to a new hospital that doesn’t know us and doesn’t know Dravet takes forever.  By the time they believed us enough to call Miami and get the go-ahead, it could be hours.  Remember he isn’t actively seizing at this point so to a regular doc, he would look fine.  She suggested that we actually get in the car and drive down.  At the end of the conversation she gives us instructions to give him Diastat and a double dose of Keppra.  If he has another, we are to call AirMed and get down to Miami.  No matter how inconvenient it is.  The Diastat in combo with the other meds settles Cole’s brain to the point he can sleep, just through the night.  It also tips us (and Dr Miller) off to that his supposed “migraine” was actually bizarre seizure activity.  Since pain relievers did nothing for it and a benzo did, it was probably seizures.  Weirder things have happened with Cole.  Add it to the list of "rare".  Most regular people would sleep for a day or two with all of those medications in their system, not our Mini Hulk!  He only got a 7 hour nap.  We truly experienced a miracle though and made it through the night.  I really didn’t want our first helicopter ride to be in a different state and take a couple of hours.  Thanks divine intervention! J

Those meds carried over and he did not have a major seizure the next day.  However, we got a new surprise at night.  Cole started having major nocturnal seizures.  Tonic clonics that last from 30 seconds to a minute.  He will sit up in the middle of the night, grab his face with his shaking arms and have full body convulsions.  We can only hold him and tell him that we will be there for him.  They are too short to drop his oxygen and don’t need meds.  However, it gets my brain kicked in to overdrive and I just lie there awake, waiting for the next one.  One night he had 9.

The next day, I had my mommy instinct telling me he might have an ear infection.  Mind you, there was no complaints of pain, no major fever, no pulling of the ears, no lethargy, just a hunch.  We took him in and BAM, both ears were infected; they started him on  Amoxicillin.  The rest of our Thanksgiving break was full of nocturnal seizures, but he had a break with daytime ones. 

I was so ready to go home.  I wanted our routine back.  There were rumors flying around that Brian was going to be sent back to New York which stuck fear in my heart but I knew that I had a back up plan for support and we could really use the money.  The hurricane, him being gone, Miami, the holiday and all of these seizures were getting to me.  So, we were grateful for the break from daytime chaos.  Well, at least where seizures were concerned!  We had a great time with our cousins and other family members that we don’t get to see very often.  Plus, it was 80 degrees the day we left!  Is 32 too young to become a snowbird? J