Sweet 16

Have you ever really wondered why the momentous occasion of turning 16 is called “Sweet 16”?  I mean most 16 year olds are eye rolling, whatever Mother, hormonal crazed animals, right?  Like 1 in 10,000 might be sweet, this should be in the books as a rare disease!  This is particularly true in Jack’s case & of course everything he has is a  rare phenomenon, just wait & read.

February 2017 (Jack age 15), we began talks with Jack’s neurologist at UNC to become involved in a drug study for CBD oil.  CBD oil is a medication that will be available in prescription form at some point for Dravet Syndrome patients, the name of the medication is Epidiolex.  Epidiolex has shown promising results in individuals with Dravet Syndrome.  For years, I have read about the wonderful results many parents shared of their kids on CBD oil, so this was definitely on my radar of things to try for Jack when we were able.  The first part of the trial was no medication, only daily phone calls to the company to report whether or not Jack had seizures.  This was a 6 week process, Jack had to have 4 grand mal seizures during this timeframe to qualify-which he did not the first go round but did the second go round, easily.  The first stage ended up being a 12 week process just to get to medication due to him not qualifying the first 6 weeks.  The drug study that Jack was involved in meant countless trips to UNC for lab work, urinalysis, EKG’s, & mountains of paperwork for me.  The second part of the study was getting the medication, this was in May.  The medication was given in oil form (stated for those that thought maybe Jack was sitting around smoking a dobbie)!  It was not known nor will it ever be known whether Jack received the placebo or the actual medication, I think it was the actual drug because that is when things started a downward spiral.

As I have expressed before, Jack has had & has violent tendencies.  We did not have to deal with any rages from Jack for almost two years.  We thought okay, he has gone through puberty & we are not going to have to deal with that any more.  Also, we changed we way we parented Jack.  We learned we couldn’t holler at him like a good ol’ southerner does her child.  I couldn’t say, “turn that music down before I knock your teeth out!”  Instead, it was “Jack, how can I help you?  Do you need anything?  Do you mind turning down that music?”  All parenting methods were changed when it came to parenting him.  Gentleness was bestowed & practiced often which should be always but that is not reality.  The first rage in two years came back in May of 2017, during the time he started the CBD oil.  Jack did not want to go with me to pick Ava up from school.  After trying to reason with him, he hauled off & attacked me.  Thankfully, Mama & Coleman were home with me.  Coleman had a dentist appointment that day & was home from school.  How very thankful I am that he was home.  Having good dental hygiene paid off in more ways than just a pearly white smile, Coleman helped save his Mama.  That day, Jack’s strength was different.  He was much bigger than he had been when he last attacked me & stronger.  Mama was busying calling Lee & 911 for help to try to subdue Jack.  Trying to hold him down is one of the most trying things I have ever experienced.  He is like a wild, rabid animal.  The police had to handcuff him.  After Jack was calm enough, he went back to his room & slept much of the evening.  As adjustments were made with the study drug, behavior started to slowly get worse, OCD increased, & lack of appetite was in full force.  Jack used to live to swim in the summer in our pool.  He started refusing to go out for swims.  As Jack edged closed to the age of 16, he started refusing to go anywhere at all.  Doing three months of either the placebo or actual medication was required before you made it to the final stage which was getting the real medication.  When Jack turned 16 on August 2, we had a small celebration at Chucke Cheese, then people dropped in during stages to bring gifts.  Remember, excitement causes him to have seizures, the point was low key.  He had seizures at everyone’s birthday celebration that year.  The third week of August, Jack had yet another violent attack on me at 11:30 at night.  This particular night, it was Ava that heard my screams & woke Lee & Coleman. Can you imagine being an 11 year old hearing the screams of your Mother? This thought breaks my heart continuously. All we can do is move forward & try to push it to the back of our minds. Police was dispatched, this was the worst one yet.  I was ready to commit Jack at that point, but his team at UNC begged me to wait & try the actual drug before making that decision.  August 28, 2017, Jack started open label Epidiolex (100% real stuff, no more possible placebo).  Increases were made though we never saw any changes in Jack.  He was losing more weight, not drinking, seizures were still the same, behavior still at the forefront.  Jack was on this medication for nearly 3 months before we decided that the medication was not helping his situation at all & we withdrew him from the study & the CBD oil.

I can’t help but think the Epidiolex started this downward spiral in motion or was it turning 16 that caused it?  I will never know for sure, maybe a combo of both.  Jack is definitely teetering on the edge of wanting to be a normal teenage boy by getting involved in chat rooms or looking at inappropriate images on the computer, which has been one of the hardest pills to swallow.  The latter isn’t so much of an issue as it was while on Epidiolex.  One of the side effects of the medication was better cognition, which I think sparked that interest.  He is still on chat rooms, we don’t like it but we do what we have to in order to keep the peace in our home.  There are nights that he becomes so heavily engrossed in chatting with strangers that he doesn’t go to sleep until 3:30am, which means I don’t go to sleep until then.  He mainly sings on these sites to other people.  People may look down on us for all the time Jack spends on electronic devices, but he can’t do anything else.  Activities cause seizures, excitement causes seizures, then there’s the behavior part to worry about, he truly has nothing else to do.  16 has been the hardest age thus far for us as a family, dealing with violence, hospital stays, endless trips to UNC, Jack drifting far away from us, the every minute stress from worry.  Good times are hard to come by, worry is always on the cusp of the mind.  So, “Sweet 16” hasn’t been that “sweet”, more like a big ol’ fat, bitter 16.  Do I regret getting Jack involved in the Epidiolex study, yes I do!  That is the one huge mistake I made in all of his treatments.  I know I was doing what I thought was best, but this one decision of saying yes during into a multitude of disasters.

Author: dravetsyndromeblog

42 year old Mama of three kids, wife of a farmer, & business owner.

4 thoughts on “Sweet 16”

  1. Amy words escape me. Your’s and your family’s struggles come through in your writing and also the deep abiding love that is also present in your home. I wish that I could take away the stress for a little while or wave a magic wane, but I don’t know how and I can’t. All I can do is let you know that I care and I’m asking that the God I serve continue to give you strength and wisdom.

    Liked by 1 person

  2. I don’t really know what to say either except I love ya and I’m praying so hard for you. You are one strong woman! Look at how Coleman and Ava are turning out! They are terrific kids. I think this has made them stronger and more sensitive to others. Ava really helped me in the classroom the year we had that “unruly” child. Ugh. I never would have made it without her. I didn’t think about it until later that the experiences she had with you and Jack made her so aware of when I needed her help with this “unruly” child in the classroom. Love you folks! You are such a special family!

    Liked by 1 person

  3. Amy, I feel your frustration in this post… but I want you to know as a professional nurse…. I would have tried the study also and I am surprised it didn’t help!!! Always remember you can count on ME and I WILL be there if you need ME ♡ Vikki.

    Liked by 1 person

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