Saturday, December 17, 2016

A contrary case...

So I figured I'd give a little update as far as the Toodle Bug, her seizures, and the cannabis trial is going.

It's not.

There! All caught up!

Okay, okay, there may be a little more to the story than that.

Back near the end of September, you may recall we started a trial of cannabis to help get control of Tess's seizures. We started her out on a teeny tiny dose three times per day plus a rescue med to use immediately when a seizure hit (she was still on all of her regular daily seizure meds and rescue meds as well).

At the beginning we thought maybe it was working. Huzzah! Tess's seizures weren't lasting as long and it seemed like there was a longer period of time between the big ones. Instead of every four to seven days, it was every eight to ten and once, almost two weeks.

Needless to say, we were cautiously optimistic.

Then she started to go backwards and the seizures were lasting for a longer time and the rescue med seemed to not help at all.  After discussing with the doc in charge of the cannabis treatment, we were told to increase the dose of the daily cannabis by 100% every two weeks until we saw a change. By 50% every two weeks if we saw some change but not a lot.

Welp, we saw a change; just not the one we were hoping for.

For those who aren't super familiar with Tess, she is a constant study in contraries. For example, Tess used to be treated with Ativan as a rescue med for her seizures but her reaction was the opposite of what most people's are when they take ativan. Instead of calming her down, it would jack her up. Another example would be that most people who have a seizure disorder have a spike in seizure activity when they are sick. Not Miss Contrary. Her seizures disappear when she is sick (something we are super thankful for since she struggles so much when she is ill without throwing seizures into the mix).  Another contrary Tessie trait is that she isn't bothered by her enteral (gtube) feeding when she is sick or even has the flu. You know, like most people would be. I can't even use it as a guide to how crappy she is feeling because she just does fine with it when most of us can barely stomach a popsicle.

See what I mean? A case of contraries.

But I digress. Back to the cannabis trial.

We had been warned by her Epileptologist in Boston (who is not in charge of the cannabis but of everything else seizure related) that some kids react badly to cannabis. It can actually increase their seizures and she was adamant that we needed to be on the lookout for that because it could cause Tess to go into Status Epilepticus , which is very dangerous.

Guess what Miss Contrary did once we started to increase the dosage? Yup, you guessed it. Her seizures got WORSE. They were more frequent, lasting longer, and were more violent. Plus, I had started feeling bad about giving her the cannabis about a month prior but was determined to keep trying so I just pushed that feeling aside. I can't really explain why except to say that desperation is a tricky master. But I know that whenever I get that feeling, I need to trust it. My instinct with Tess is pretty finely tuned in at this point and I just knew I was giving her something that not only wasn't helping, it was actually hurting her. A bad combination. The doc in charge of the cannabis trial wanted me to try going up again on the dose but I finally outright refused and said I was pulling her off until we could get to the mainland to buy a different strain to try. They agreed since I was so adamant about it (plus her Boston doc had been supportive of this trial on one condition; that we would be honest with ourselves if we saw signs that Tess wasn't reacting well to it and pull her off of it). We made a plan with the cannabis doc to try a different strain of cannabis as well as the rescue one, but for now she's not on any since we haven't had the time to go to the place on the mainland to buy it.

So that's where we are still at and, interestingly enough, she hasn't had a bad seizure since we pulled her off of it.  Of course, she also has been fighting a respiratory illness for a couple of weeks so that could explain the lack of seizure activity but still...too much of a coincidence for us to ignore. Plus she just seems more "with it" since we've taken her off the cannabis (even though the strain she was on wasn't supposed to have any mind altering affects, it would seem that it did).

Miss Contrary.

As her pediatrician likes to say, "My girlfriend plays by her own rules and makes them up as she goes along and just when you think you've figured them out, she changes them and you're back to trying to figure them all out again."

Preach, Doc S. Preach.

2 comments:

  1. Joanna, thank you for sharing this. Tess has got more courage and strength in her little finger than most of us have in all our muscles combined. And you are inspirational! I am thinking about you all and sending love and prayers for Tess and all the rest of your beautiful family. Anita (Ann's cousin)

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  2. Thanks for the update. Hope you all have a good holiday.💕

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