For over two weeks we've enjoyed little to no seizure activity; just as we were getting comfortable and finally letting our guard down a bit, the darn DS monster had to sneak back into our lives.
About a week ago Drake started experiencing an increase in sleep disturbances. Started out with him waking super early (between 3:30 and 4:30am). He'd play in his room a bit and finally settle down and fall back asleep an hour or two later. Then he started waking more and more during the night; sometimes only for a few seconds, other times getting up and wandering his room for several minutes. Then he started screaming out in his sleep; a horrible, blood-curdling, "i'm in pain/distress" cry; it would only last a few seconds and he never seemed to actually wake.
Then we noticed the eye blinking begin. We've seen this randomly in the past; but on Saturday it literally went on all day long with only a few brief 10-20 minute breaks. It wasn't affected by activity or rest; he continued on with his normal activities but was very slow to respond, seemed exceptionally defiant and sometimes during periods of more rapid blinking he'd stand motionless for a second or two. I was pretty sure we were seeing some sort of seizure activity but thought maybe it was a tic or an eye problem of some sort instead; but after consulting with our "Dravet family" online, I was 99% sure it was seizures.
The blinking continued on Sunday. I called the neurologists office this morning to find out how I could get video clips to him for review; I was told his nurse is out all week but she would call me Monday with her e-mail address. Tonight however, the blinking progressed into a definite seizure - though quite different from seizures we've seen in the past. The seizure lasted just under 4 minutes and then he slept for an hour, woke long enough to take his meds and call grandma and grandpa to say hello and then went back down for the night.
Guess I'll be back on the phone with the neurologist's office in the morning to tell them Monday isn't good enough - we need his input NOW!
That's the lesson with Dravet - don't ever get comfortable, because just when you do, another curve ball will be thrown your way.
I should be studying right now; I have a Pharmacology exam at 8am and I don't feel very prepared for it. But I had to take a moment to write here before life runs away from me again and I never get a chance to post this. I'll come back to the most recent happening of the day and why I'm saying thank you shortly, first an update on Drake's neurology appointment and other happenings of the day.
We met with the neurologist at noon today. Well, I should say, we were there in time for our 12:00 appointment, but true to form, we were kept waiting over an hour. Ever tried entertaining an energetic, sleep deprived, special needs two year old in a boring waiting room with no children's activities for over an hour? Not an easy task! But we kept our smiles on, sure that we'd get the results from his EEG and have a new-found direction that would garner some new hope in light of the recent increase in seizure activity. Instead, we were greeted with a perplexed neurologist saying he didn't see anything on the EEG. Really? He had three tonic-clonic seizures one of the days we were there! We were told that he'd have to go back and review the files again; he must have missed a file or two when doing his review. Regardless, we know we've been seeing an increase in seizures, so we discussed our options at this point. We asked about Stiripentol and Clobazam, two drugs not currently FDA approved but that are proving to be very useful in Dravet cases. Because it can be such a fight to get the meds however, he suggested we wait until we've tried some other options first. So, we're adjusting the Depakote dosage - we'll now have to remember to give it to him on-time three times a day. However, Drake's liver enzyme levels were getting near the top of the "safe zone" (liver toxicity and high amonia are common effects of this drug), so we'll need to go for repeat blood work in two weeks, two weeks after that and then once a month to keep a close eye on this. He recommended Vimpat as our next drug option - I don't know much about this one, so time to start doing a bit more research again. We talked again about the ketogenic diet or modified atkins diet and decided that Drake may not be a good candidate for these right now because of the trouble we already have with getting him to eat well; we'll revisit these options again in a few months or so. We also spoke briefly about a surgical implant called a Vagus Nerve Stimulator (VNS), but agreed that this would probably be our "last hope" after several other drug and diet failures. Such is the life of Dravet. We will be searching for the perfect combination most likely for years to come. If we're lucky, eventually Drake will have only a couple seizures a year; if we're like many others, we'll exhaust all of these options and still have poor seizure control. It's a fight worth fighting.
After the appointment, we had to finally suck it up and call one of the HVAC guys that we got quotes from a few weeks ago (our furnace is dying) and agree to have them do the job. This was a very painful decision. We can't live without a properly operating furnace and A/C - it's not just about comfort either. For Drake, any drastic changes in temperature can set off a chain reaction of terrible seizure events. Our furnace is over 20 years old, no longer serviceable and not working properly. There have been mornings that we wake to a 50 degree house. Somehow DC has managed to keep it running for several months - but we have to reset it dozens of times a day or it just stops coming on. The A/C is equally as old, and while it was operating fine last year, we feared that this year it could go bad - and high heat affects Drake way more than the cold. We would not be able to remain in our home without a properly working A/C. The quotes we received also included an air purification system that will even remove virus particles from the home. And since the slightest of illnesses can also set off seizures, we decided this was an important feature to add in. All totalled, we're looking at $10,000. We don't have that kind of money. We can't even make our full house payments right now (SO thankful that my parents are our mortgager and have agreed to accept lower payments until we can get back on our feet - whenever that may be). With great reluctance, we had to again go to my parents and ask for help with this hefty bill. If it weren't for them, I don't know what we would do. Thanks mom & dad...we love you! It's so difficult to ask for help like this though...it seems like we just keep digging ourselves deeper and deeper into a whole. No matter how hard we try, no matter how much we try to cut our expenses...we just never seem to have enough.
This evening, after struggling to get Drake to sleep, I was finally sitting at the kitchen table trying to study when there was a knock on the door. I figured it was the neighbor who often stops by to talk with my husband. Instead, I found a young girl that I didn't recognize (she may have been one of the neighborhood girls, but I wasn't sure). She handed me an envelope and told me it was a blessing for my family. A bit confused, I smiled and said thank you and she was gone. I shut the door and opened the envelope. Inside I found a note:
Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort...2 Corinthians 1:3
We were created to need community, to love, serve, and help one another.
Jesus loves you all...
There was also a bank envelope - inside, $200. I sat down and cried. I don't know who this gift is from. I don't know how they knew of our needs. But I hope they will read this and know how very very greatful we are; it couldn't have come at a better time.