If you haven't already guessed from the title of this post, the Toodle Bug's seizures are back with a vengeance.
Or at least, that is what it feels like.
Not that they ever were gone mind you. Oh no. THAT would be just to easy. No, she has had them all along but they have been semi-controlled through her Ketogenic diet and anti-convulsion meds. By "semi-controlled" I mean that she had a seizure at least once a day on average but I didn't really count it unless I needed to intervene with emergency meds which meant the seizure needed to last at least five minutes. The ones I don't count, in fact I will actually call them "fake seizures" even though they are very, very real, last probably a minute and a half to three minutes at most. Her "bad ones" were happening about once every two and a half to three weeks. Now to some people this may seem like not a long period of time but trust me, this was considered "controlled" in Tessie's world.
Those ones always last a minimum of eleven minutes with about a minute break, then she will seize again for about a minute and a half then have a break of a minute or two, then seize again for a minute or so before finally stopping because the meds have kicked in which means, added all together, she will have seized for around 15 minutes. And no, I don't wait for eleven minutes to administer rescue meds. At five minutes Tessie get 7.5 mg of Diastat (valium) and at ten minutes she gets a 1 mg does of clonazepam. Trust me when I tell you, this is enough medicine to put you and I under the table for about a week but right now, it barely is controlling her seizures when she is having them. I also give her oxygen as soon as she starts having a seizure to keep her O2 stats up. There have been a few times when she has stopped breathing during a seizure, but luckily, this is not the norm for Tessie.
I take my silver linings where I can find them.
The Toodle Bug takes 22 pills a day to help control her seizures. You did not read that wrong. TWENTY TWO per day. And that is NOT counting when she needs the rescue meds. Sigh.
Anyway, as I was saying, she was doing quite well for a while, but the last couple of months things have started to change. I don't know why, which is extremely frustrating.
And then, about a week ago, she had a seizure where I swear to God, I though she was dying in front of my eyes. This is not an exaggeration. I had never seen her do some of the things she was doing during that seizure. It scared about 10 years off of my life and poor Ellie Belle was right there trying to help me which meant I had to at least pretend not to think she was dying.
I am not that good of an actress. I did tell Ellie that Tess was scaring me and then basically lost my composure completely.
I freaked out to the point where I called her pediatrician, in the middle of the seizure, got his receptionist on the phone and pretty much screeched at her to get Dr. Stephenson on the phone NOW because I was so scared.
He promptly picked up and in an extra calm voice, in what I am pretty sure now was an attempt to try to calm me down, got me to tell him what I was seeing. Thankfully he did not join me in my own little hysteria party and asked some basic questions starting with, "Is she blue anywhere? Is she breathing?",
at which point it donned on me that, why yes, yes she was. Okay then. Deep (and very shaky) breath for me.
Dr. Stephenson stayed on the phone with me for the remainder of the seizure to make sure she came out of it all the while going over plan B to me should she not.
She seized non-stop for eighteen minutes.
Ellie sat with Tess the whole time and when Tess finally stopped, Ellie stayed right there with her until Tess wore out and fell asleep from all the meds and the toll the seizure had taken on her poor little body.
That was not a good day.
Nor were the next couple of days after that, at least for Tess, because the seizures and meds are so hard on her that it takes days to recover and right now at least, she no more than gets a day or two of feeling good again when she gets hit by another one. It is awful to watch my giggly, happy girl want to sleep all the time and when she actually is awake, is so spaced out that she could care less what is going on around her. We all will practically dance on our heads just to get a smile out of her.
And the reality is, I am scared. Scared of what this change could mean for her. Without a diagnosis we have nothing to hold on to, nowhere to look for guidance or to help us predict what comes next. We are flying blind and making up the rules as we go along and as her pediatrician likes to say, "Tessie does not like to play by the rules."
Ain't it the truth?
We are taking her to Boston Children's Hospital next week for some appointments, one of which is with her epilepsy doctor. Charlie and I have decided it is time to stop the Ketogenic diet (which is overseen by this doctor) because it is just not working anymore and we are tired of never being able to give Tessie tastes of anything like ice cream, or popsicles or lollipops, etc not to mention having to be careful about what lotions we use on her, what wet wipes, even the sunblock and toothpaste have to be approved for the diet and when she needs antibiotics, which is frequently, they also had to be approved before she could get them. This diet requires CONSTANT VIGILANCE (as Mad Eye Moody would say...Harry Potter fans will totally get this reference). She will always need her feeding tube to provide her nutrition but will go back to regular formula instead of this specialized one we mix for her every day in the desperate attempt to help with her seizures.
As far as the seizures go, I am hoping that they can increase a med here or there to help get them back under some semblance of control.
In the meantime, life goes on and we are in Rangeley on vacation.
Of course no day goes by without at least one viewing of Toy Story 2 which, if I am being honest, can induce a seizure because she gets so excited. But just look at how happy it makes her. At some point, quality of life has to take priority. Plus, who could resist this face?
Tess had a small seizure this morning but stopped after three minutes. She slept the rest of the morning but had a pretty good afternoon and even dipped her feet into the lake and, yesterday, we took her bowling with all of us plus The Bean (natch), Jeff, Kris, Drey and Becca and my dad and Ann. She had fun and even managed to beat one of her big sisters.
Of course, what with being an Olympic Champion at bowling, are you surprised?