Changing Seasons

I just realized that it's been 3 months since our last update. It's been a busy summer, and I've taken approximately 1,000 pictures. I'll spare you, and only hit the highlights.

First, Rachel got a tattoo. It means a lot to her, and she's so happy with it. She sees this as the foundation for a life story, all in little pieces. For someone with memory deficits, Rachel sees her tattoo(s) as a way to commemorate special times, and act as a reminder later on.

Puzzle piece tattoo

A week or so after Rachel got her tattoo, Stewie got his first hot spot. We got him treated, and the vet gave us a cone to use. Sadly, Stewie could not tolerate the cone, so we bought a blow-up Kong collar. The World's Most Flexible Dog (TM) was able to reach the spot anyway. When the second hot spot showed up just a couple of inches from the first one, we decided it was time to buy a puppy onesie. Stewie looks a lot thinner with all the fur bound up. The hot spots both healed, and the hair is growing back.

Stewie's puppy onesie

Since we've been working on letting Rachel do more of her own self-care, we bought a new med tray system, which she loves, and is easier for her to manage. She can fill as many as 31 days worth of meds, or just a few, at a time. Next we'll work on ordering refills and managing that part of the process.

New med tray system

The Oregon Zoo was getting ready to bid farewell to their polar bear cub, Nora, so we decided we'd better get up there and visit. Turns out that Nora loves dogs, or maybe it's just Stewie. She followed our progress throughout her entire enclosure and put her nose right up to Stewie's through the glass. Nora is being moved to a zoo in Utah, where she'll have a companion, and as much as we're sorry to see her go, it will be in her best interest. Nora is bored and lonely. Her new friend is named Hope, and is about the same age.

Nora the polar bear.

Now it's September, and we took a short trip to the coast for my husband's birthday. He went fishing, and I took Rachel and Stewart out to play. The weather was gorgeous, and we played all day. There was a lot going on, the days were long, and we didn't sleep well, but Rachel was a champ, and didn't have any problems the whole trip. It was wonderful.

View from the Umpqua Lighthouse

Summer is almost over, and Rachel has decided she'd like to return to school, so she signed up for an art class at the community college, with plans to return to her degree program winter term. It took some effort, but Rachel was able to get registered for class, and order the text book. She ordered and paid for the book online, and opted to pick it up at the school book store a few days later. It so happens that those few days encompassed our coast trip, so today was the day to go get the book. I drove Rachel to school, but she took Stewie in and I waited in the car. She came back with the book, and we drove back home.

Once we were home, I realized that she had actually purchased the book she had in her hand instead up just picking up the one she'd pre-ordered. So, she had paid twice, and had one book. Oops. So, we loaded up again, and headed back out to the school. Rachel was very upset with herself, and I could see that she was very anxious. We were almost to the school when Rachel indicated that she wasn't feeling well, so I pulled into a parking lot, and she tried very hard not to have a panic attack, but she ended up having a short meltdown. 

We're getting better at recognizing the difference between her panics and the seizures. We now have what we call the "go bag." It contains the magnet for her VNS, a vape pen, and rescue cannabis oil. We're also getting better at remembering to take it in the car. I was able to grab the bag, swipe the VNS in case it was a seizure, and put some oil in her mouth. A few minutes later she was able to focus and we continued on to the school. This time I went in with Rachel, and we got the book situation taken care of.

The "Go Bag."

School starts on the 25th, and I'm feeling more confident in Rachel's ability to cope with the stress. She's interested in taking on more responsibility for herself, and is looking forward to getting out more, engaging people, and spreading her wings more. She knows there will be difficult days, and probably more panic attacks, but she is feeling more positive about her life, and that is the biggest thing.

Change Is In The Air

If there's one thing we can count on when it comes to Rachel's seizures, it's their changeability. Just when we think we've got a handle on what to expect, something new takes place. The last couple of days have highlighted that for us, but it's not all bad.

Yesterday evening, Rachel took Stewie, and went to use the restroom. She closed the door, which isn't abnormal, but since we got the new carpet, the door makes a much tighter seal, and it's harder to hear if she calls out. Also, we had the air conditioner running, and the TV on. We didn't hear anything unusual, and after a few minutes Rachel opened the door, and sort of stumbled out. She was slurry, and indicated she'd had a seizure, so we took her to her room to lie down. Fortunately, the seizure was a partial, she didn't fall, and wasn't injured in any way.

When she got up, we asked Rachel what had happened, and if she'd alerted Stewie to the seizure. She said she didn't say "help," but when the seizure started he became agitated, and went to the door, but it was shut all the way, so he couldn't open it. She didn't see if he tried to pull the alarm. We didn't hear anything at all. Usually we would hear his claws on the floor or door, or his efforts to pull the alarm on the tub. We discovered later that the alarm has become very hard to pull, so may be rusted inside, and needs to be replaced. So, no closing the door all the way until we are assured Stewie can either pull the alarm, or open the door. All in all, she was unharmed, and didn't experience any panic, or we would have heard her screaming and crying.

This evening we were sitting in the living room, and Rachel indicated that she wasn't feeling well, and then said, "Yup, I'm going down." That was an unusual presence of mind for Rachel, and the first time she's ever said anything like that. The seizure progressed as they usually do, we swiped the VNS, and comforted her until it ended, and once again there was no panic at all, and her recovery was swift. We have often said that the worst part of Rachel's condition is the anxiety that goes along with it. These last two seizures have given us a lot of hope that she may be overcoming that debilitating reaction to seizures.

We made the increase in her cannabis dosage a couple of weeks ago, and since then Rachel has been sleeping less, able to stay up most days without a nap, and generally more willing to be up and about. While all of this is wonderful, and we certainly hope that it will continue, we always remember that it could all change with the very next seizure. We are always in a state of wary readiness, and each seizure is a unique experience. 

In the meantime, we'll be doing a round-up of all the alarms, checking each one for ease of use, and continuing to work on training, and ramping up the seizure response training that Rachel has slacked off on. I've been making sure she takes her oils each day, and now I have to make sure she's doing response training at least a few times a week, no matter how much she complains. Rachel says she feels too conspicuous doing seizure simulations in public, but I remind her that's the point...that people will notice if something happens. 

We have a neuro visit next month, and we'll decide then whether to attempt a minor reduction of the benzo she's been on for about 8 years. Now that the anxiety is better controlled, we might be able to make that reduction without a major relapse. As usual, any change that's made will be low and slow. We still have a long way to go with her oils, so we'll make another small increase before any other changes, and monitor the situation.

Here's hoping that future changes are in the positive column, and not the negative. We've lived this life for 14 years, and still feel like we're learning on the job. We still make mistakes, and don't always anticipate what problems might occur. What we have going for us is a great kid who wants a better life. 

High Doesn't Have To Be Toxic

My intention is to use this forum to share our family's personal experience with epilepsy, including treatment options, tests, evaluations, reactions, and outcomes. Our choices and options may not be right for anybody else, and every person must make the best decisions they can for themselves and their kids.

All of that to lead up to this: We have a morbid sense of humor. We're irreverent, snarky, probably swear too much, and unless things are very serious, we try to make something light out of things that might be considered heavy by some.

Lately, we have been considering what we can do to improve seizure control for Rachel, and reduce her chronic anxiety. We have been dosing her cannabis oils in very small amounts, and I knew that it would be more helpful to increase those doses, so we consulted with our oil maker, who confirmed that Rachel's dose is incredibly low, and that we should probably work on titrating up. Rachel uses fully activated forms of THC and CBD oils, which means that if she hasn't acclimated to a particular dose, she can experience a "high."  We have been so conservative with her treatment that it had never happened, and I admit to being concerned about how she would handle it, in the event of an "overdose."

Well, we increased the dose marginally yesterday, with no trouble at all. This morning Rachel dosed herself, and the syringe slipped a little bit, so she got another 1/10th ml more than usual...effectively doubling the dose she was at two days ago. She had her morning nap as usual, and when she got up still looked really tired to me, with slightly puffy eyelids. She said she felt heavy and slow, but was SO relaxed, and her anxiety level (on a good day it's 4-5) was practically non-existent. She was calm, happy, and relaxed, but was having some difficulty compiling her thoughts, so she went to lay back down for a bit.

So, that's it. Rachel was "high" on cannabis for the first time. She has been stoned on prescribed sedatives to the point that she couldn't think or speak straight, walk in a straight line, or stay awake at all. She's been toxic on epilepsy medications, which made her joints ache, gave her double vision, and caused nausea to the point of vomiting. I will take this over any of that, any day of the week. This will only last a few hours, and we can easily adjust her dosage from here, and know that she is tolerating her treatment well.

Cannabis treatment is not for everyone, but unlike the majority of her other medications, an overdose is not fatal, and rather than being worried, we were giggling about how she was feeling, and how content Rachel was to just sit with the dog in her lap, and play on her phone. We are so grateful that we have had the opportunity to give cannabis a chance, and we are nowhere near ready to give up on it. I'm only sorry that we waited as long as we did before getting started.

A syringe of one of Rachel's cannabis oils. A single dose is 3/10 of ml.

***I'm going to just assume that I don't need to tell you that we really don't intend for Rachel to be high every day, or that she doesn't drive, and if she did we would be very, very careful about her cannabis use.

E-day Preppers

In the wake of seizure #somethinginthethousands, my mind trips over all the weird times, places and situations in which we've dealt with seizures, and all of the random stuff that happens at the same time.

We've had seizures in the car, of course, and those times have been in the drive-thru of the pharmacy, a fast food restaurant, countless parking lots, while driving 70+ mph in the ultra-fast lane, and many other times.

There have been seizures, and debilitating panic attacks, in grocery stores, schools, motorcycle shops, malls, a body piercing parlor, while on hikes, and the dentist's office. Surprisingly, we haven't had one at a doctor's office yet. 

In the beginning of our seizure journey, when Rachel was still having a lot of tonic/clonics, she would wet herself. That doesn't happen anymore, but now whenever she has a seizure, particularly if it's a big one I experience a sudden, and difficult to control, urge to use the restroom. I have IBS-D, and on any given day can be found bee-lining to the bathroom. There is a definite connection between my anxiety level, and my touchy gut. It's a pretty lousy feeling to know that when my daughter needs me most, my gut is insisting on bugging out. 

These are things that I think a lot of caregivers don't really talk about, but which are very real. We are just humans. We're not supernatural heroes. We do the best we can for those who depend on us, but we're fallible, and sometimes feeble, ourselves. It can be a juggling act, meeting the needs of our loved ones, and taking care of ourselves at the same time.

I also have rheumatoid autoimmune disease. My condition is good for someone diagnosed over 20 years ago. However, I do have damage, and limitations on what I can physically manage. Rachel is an adult, and about the same size I am. If she collapses, I can manage to help her get to the floor without injury. I can usually get her rolled onto her side during a seizure, but sometimes she fights me, and then she'll begin to choke on saliva, so I struggle to turn her and keep her there. If she's sitting upright in a chair, we sometimes have to restrain her, in order to keep Rachel from getting up and walking off. She's strong, and during a seizure doesn't have the brakes she does while lucid. Rachel has scratched my cornea, my arms, and legs during seizures, and will sometimes get a grip on my wrist which hurts. Trying to restrain her, and keep her from getting a grip on me can be a challenge. We've had to peel her fingers off of Stewie's paw, because she was gripping him so hard.

Rachel will sometimes drool heavily during seizures and panic attacks. It seems like gallons sometimes. I keep a small towel in the car, and the first thing we do when she indicates a seizure is grab a towel. There was a time I considered keeping a spare shirt in the car, but never got around to it. She has soaked herself many times. She's always dismayed by it when she's herself again, and we've had to leave someplace sooner than intended, or turn around the car, and go back home for clean clothes, before carrying on with our errands for the day.

We've cancelled plans so many times I can't count them all. We've arrived late, or left early, for many events. Rachel didn't get to walk at her high school graduation because the day got too long, and she was totally overwhelmed by the time they were finally lining up the graduates. That was heartbreaking for all of us, but asking her to push herself would have likely just resulted in a massive panic attack and/or seizure. 

Friends and family are always understanding and kind, but we always feel bad when we have to cancel at the last minute, and with epilepsy it's always the last minute. There's very rarely any sort of build-up that warns us of an impending problem. It's not like coming down with a cold. You're dressed, have keys in hand, or actually already in the car, and the seizure hits. If it's a small one, we can usually carry on. If it's a big one, and especially if we have to use a rescue med, she'll be too tired, and knocked out, to go anywhere. There have been times that we've had to let her sleep off part of it in the car, before she would be alert and physically stable enough to walk into the house.

This is definitely a very short list of the reality of our epilepsy experience. I think it is the very random nature of the condition that really makes it difficult. There are no two seizures or situations that are the same. At any given time, there can be a new symptom, a new trigger, or a new manifestation. We never know what will happen next. We are not the type of people who flourish under stress. We all prefer a routine, and epilepsy is anything but. We have been forced to adapt to a very random, and sometimes intensely scary, life. 

The best thing we can do is just always be sure that we have on hand all of the items we might need for the next seizure. I always have a magnet for the VNS, a vape pen, a towel, and a dose of cannabis oil. We now keep a screw driver next to the door of Rachel's room. There is a level of vigilance that never goes away. It can be exhausting, and yet the anxiety can keep us awake, when what we need most is sleep. I have learned to sleep with the static of the video monitor next to my head.

I sometimes wonder if I'll ever fully adapt to being the caregiver of someone with epilepsy, but I also never want to accept that it won't get better. I fight the reality that this is how it will always be for us.

Purple Day Reflections

 

  

March 26th is International Purple Day for Epilepsy. To show support and solidarity for Rachel and all those affected by epilepsy worldwide, we wear purple, and share first aid and other information about seizures. As a family that lives with epilepsy and its effects on a daily basis, Purple Day is every day, and we are always taking every opportunity to advocate.

Purple Day was yesterday. The above photo is of Rachel, wearing her purple, and Stewie, wearing his nap. It's one of his best skills. Next month, on April 25th, to be exact, we will mark 14 years of seizure experience and epilepsy education, both for ourselves, and for everyone around us. 

I don't mind telling you that I hate this "anniversary." I really do. Rachel's first seizure marked the beginning of a long and painful road for all of us. We have met some amazing people, and experienced things we never would have otherwise, both positive and negative, but I have to be honest here...I would give all of that up if it meant Rachel never had to experience another seizure in her lifetime. I have every belief that each of the amazing women I've met through epilepsy support groups, who have been there for me in the worst times, would say the same thing. "I love you, girlfriend, but if it means my kid would be cured, I'd cut you out of my life." Cold? Maybe. But I'm not gonna lie.

I use these anniversaries to reflect on each year's progress, and consider what, if anything, we could be doing better. Where might we be able to reduce a medication dosage? Do we feel the doctor is being aggressive enough in his treatment? Or, too aggressive about pushing to try yet another medication or implant? 

The photo below shows Rachel's current medication regimen. On the left are her cannabis oils.L to R: High CBD, 1:1 THC to CBD, and High THC rescue oil. The pill boxes contain her morning and evening handfuls of pills, and this is after two medication reductions this year. 

 

When we see the neuro again in a few months, we're going to consult about making another small reduction in her Keppra, which is known to contribute to emotional issues. Since the last reduction, Rachel's mood has improved, she's not having as many panic attacks, and finds it easier to cope when she's feeling overwhelmed. 

So, another Purple Day has come and gone, but our Purple Life goes on.

December, 2016

Snow!

Hard to believe that an entire month has passed since my last blog post. I suppose that's a sign that things have been going well; there's not much to complain about at the moment.

The increase in dosage of Rachel's oils, and the decrease in her Keppra dosage, has been good for her. She's working on her bedtime PTSD, which is still a struggle of varying degree every night. Her psych says to practice talking to her brain as if it were her friend, and not her enemy. She says that maybe they can be frenemies, but she's not quite ready to make nice. I get it.

We had a little bit of snow a couple of weeks ago, which Rachel and Stewie both enjoyed immensely. Stewie acts like he doesn't even feel the cold. He'd play outside for hours if we let him. 

Rachel made it through the excitement and busy-ness of Christmas without any problems, and until yesterday had experienced only two seizures in the whole month, both partials.

Yesterday was her second visit with her new neuro. We had to drive to Portland, which is always a stressful proposition, but this appointment happened to be at 3:30 in the afternoon, placing us in a terrible position, traffic-wise. It's never good up there, but this was BAD. We did manage to get to the appointment on time, but Rachel had a seizure on the way, while I was driving 70 mph, in the fast lane of 5 traffic lanes. Fortunately, there was a wide emergency lane I could pull into. The seizure was short, and we were on our way again in about 5 minutes.

I like the neuro. He listens to my opinion, and even though he's pushing for Rachel to try the Neuro Pace implant, he understands our reluctance to put her through more testing, surgeries, etc. Rachel says she'd like to do it, but it will all depend on insurance, co-pays, and out-of-pocket expenses. Sadly, the ability to afford a treatment that may change her life for the better is dependent on our ability to pay for it. The clock is ticking. Rachel is almost 22, so if the new president is successful in repealing Obamacare, Rachel will have to be on Medicaid, and I doubt they'd pay for this surgery and all the testing that goes with it. We left the office with an armload of brochures, booklets and info sheets. We also left with Rach's medical cannabis card renewed. The doctor believes it's helping her.

On the way home, we stopped at a yummy burger joint, both because we were hungry, and to get us out of the Hellish traffic for a little bit. Rach and I enjoyed our dinner, and Stewie crashed out on the floor while we ate. The traffic was still bad when we got going again, but the break was nice. We ended up getting home at about 6:15, whereupon we flopped into our respective chairs, and hardly moved until bedtime.

Today is very quiet. Rachel and Stewart are currently napping, and even though I should be doing something productive, I am here, spewing my guts to a screen. 

Thanksgiving

Good boy, Stewie

The photo above was taken after Rachel's second tonic-clonic seizure in a 1 1/2 hour period. She was wiped out, and so was Stewart. He worries about Rachel when she's having a seizure, and sticks close to her when she's recovering. The bed is a mess of random blankets because her usual set was in the wash, after having been vomited upon repeatedly.

This post is about Thanksgiving; both the holiday and the emotion. We are very thankful that Rachel is ours, and that her situation isn't worse. We are thankful that cannabis is helping us manage her seizures and her anxiety. We are thankful for the wonderful people that grow and produce the oils we use. They are working very hard to get it right, and they really care about Rachel and our family.

We are thankful. We are also wary. We know about the risk of SUDEP, and that the risk is higher in a person with poorly controlled seizures. We do what we can to mitigate the risks, and give thanks for every good day.

Anticipation

We are incredibly close to being able to begin cannabis therapy for Rachel.

We have an MRI and AEEG scheduled for next week, and then Rachel can get her eyebrow pierced, which was supposed to be a birthday present, and we can visit the dispensary, and pick up our first dose of her meds.

Conflicted, nervous, anxious, excited, and so many more feelings flailing around in my head like a ping pong ball in a box.