So things have continued to be a whirlwind around here. People ask me how it has been going and honestly I don't know what to say. I don't want their pity or to make them uncomfortable. Sometimes they don't want to know, sometimes they do...but not all of it. I probably just say, "Not great" or "Okay". Translation: Bad. For those of you who wonder just how bad is bad? Here you go.
We had a Christmas Miracle, Part II; but not until we went through our personal version of hell. December proved to be very trying.
The Rocephin shots brought some relief. Cole was still struggling up to the day that we left for our vacation. Then he had 5 glorious days. There was still plenty of myo's and the dreadful nocturnal tonic clonics, but no day time major seizures! Christmas was not marred by the beast, like it usually is. Yes, there was still plenty of stress and waiting for the other shoe to drop and behavioral issues and myoclonics and, and, and....but we recognized that we were witnessing a miracle. A 12 hour journey, including incredible bladder control by Slugger, was completed without incident and there was time with family and loads and loads of presents! The antibiotics did what we thought they might. Gave him a little break in the cycle and at just the right time. We are so grateful.
The daily tonic clonics came back while we were gone. Then right before we left things settled down again, making us happy but confused. Even with picking up a cough from traveling, he had an even longer break, 8 days-which has not happened in over a year. Then things picked up fast and furious.
Re-cap on the last few months:
January to date-18 GTC's
So what exactly do these numbers mean? It really doesn't seem like they are that high...well, except for that 40. That number reflects only major seizures. What is major?
For us, right now, major seizures include most or all of the following:
Loss/altered state of consciousness
Full body convulsions
Drop in oxygen saturation
Need for rescue medications
Lasting over 1 minute
Post Ictal period that includes slowing of speech, sleeping, or Todd's Paralysis
Loss of bowel or bladder function
Post Ictal Blindness
A pretty big list! This means that Cole is still having plenty of seizures that we don't deem "major" right now. We don't even count it unless it meets some of this criteria. So-he is having GTC's (especially at night) that we are not adding to the tally, because they are less than a minute and he doesn't need oxygen or meds. However, we still have to go through the pain of having our little boy scream in terror, clutch his face and shake all over. The thing that sucks (pardon my language) is that we can't do a dang thing about it. All we can do is hold him and let him know that we are there for him; and then not be able to fall asleep for a long time. He usually goes right back to sleep, me not so much. This is happening on average 6 times a night. Saturday, it was off and on all. night. long. He is occasionally having complex partials right now that we are calling "major", but not as often as in the past. They are almost always generalizing, so they are still being classified as GTC's.
Cole is still having plenty of myoclonics and other small seizures, lasting only seconds. Hand tremors, eye flutters, micro muscle spasms, foot drops, little jerking motions. Occasionally I catch absence. If I had to ballpark guess, I would say small seizure average is around 700-1,000 a day. I don't count (or I would be running around all day making tick marks into a notebook). Some days are okay, some days are horrible and it looks like he has been eating Mexican Jumping Bean larva. We also know that he is having a lot of myo's in his sleep, some that are not even noticeable unless he is hooked up to an EEG.
So, what do we do now? We have tried more AEDs (anti-epileptic drugs), less AEDs, dog meds, antibiotics, I guess that it is time for blood pressure meds. For the record Cole has been on: Phenobarbitol, Levetiracetam, the Ketogenic Diet, Clonazepam, Depakote, Topamax, Potassium Bromide, Clobazam and now Verapamil. Plus a bunch of stuff that is considered "alternative" or "adjunct" or "supplemental". That is a lot of meds and treatments for a kid who is not even 5 yet (hooray for a birthday this weekend)! Verapamil is looking like it is going to be added to the list of failed meds.
Basically I guess it all boils down to the fact that our life is an emergency right now. If I seem tired, distant, on edge, depressed, silly, don't make any sense, or act down right crazy...forgive me. I am working on little to no sleep and huge spikes of adrenaline then the crash. Sometimes I can't even recover before it is time again for life and death situations. Oxygen saturation at 14% is a true emergency. Just because we have not been hospitalized during all of this doesn't mean that it isn't serious. Watching your child struggle and suffer is one of the hardest things in the world to witness. Feeling helpless is right up there. We have basically every thing the paramedics have to offer us right here-portable suction, oxygen, rescue meds, pulse oximeter, experience. So in between mourning the Mom I Would Have Been (love this article) and keeping Cole alive I have been finding time for a little bit of yoga (hello, Sadie Nardini on YouTube!), paying bills, having a good/decent attitude, driving to therapy 5 times a week, occasionally making dinner, having spontaneous dance parties, finding time to snuggle with my boy and appreciate every day that he is here. It is pretty rough around here, but he is the reason that I get out of bed every day. He continues to laugh, entertain me, get into trouble and be the cutest little boy on the block. All he cares about is making a gigantic list for his birthday.
Top wishes include:
Building a bowling alley in the basement..."With a sweeper mom, a real bowling alley."
Ping Pong Table
Ride On Excavator
A real pirate sword
Indoor swimming pool
Geezo, Cole! Expensive taste, big dreams. I wish that I could grant them all, except for maybe that real sword. Right now, my biggest dream is for me to actually be able to count the number of seizures every day. Maybe even get to the point where we have a day or two completely, totally seizure free. Hey, if Cole thinks we can build a regulation bowling alley in our house, I can dream about a day when I can see my little boy get to act and feel like a little boy.