New Drug - Potiga

Kelsey does not have good seizure control right now and at her 6-month visit with the neurologist this past week he decided to try her on Potiga.  She’s taking a relatively low dose to begin with so we have some wiggle room but after a week of it, neither she nor I can tell a huge difference in the seizure activity so far.  He also wants to transition her to an adult neurologist and at nearly 21 – it’s time.  BUT it’s hard to leave a facility and a physician that you’ve been with for so very long and through so much with.  I know that we would have to switch eventually, but actually hearing it was difficult. 

More difficult, though, was having him tell us that after Potiga, there’s really nothing else at this point that we can do for her.  There’s no drug we haven’t tried, no surgery or implant that we don’t already have, and sadly, nothing new on the close horizon.  I know I’ve said this before, but as a mom, those words just sweep my feet out from under me.  My heart hurts for Kelsey and all she endures, but more importantly my soul sings for her because of how well she does handle it all.

I’ll update more after we’re on the full dose of Potiga.

Yearly Update (heh)

I know that I always say I’m going to update more and somehow I never do. So this time? I’m not even going to say it. I’ll update when I update and it’ll be a surprise to everyone. On the seizure front, nothing really has changed. We’ve added drugs, we’ve taken drugs away, we’ve amped up her VNS output and the end result is still the same - no good seizure control. We are hip-deep in the disability approval process right now and hopefully we’ll get an approval soon – we’ve gotten too many denials.


Kels has decided to take a semester break from college. She’s so very discouraged with her progress and how very slow she has to take it because if she carries a full load she tends to stress herself into more seizures. I want her to have a semester of “normal” life and socialization outside of the home, but at this point I don’t know that even getting a part-time job will be feasible since her seizures are so unpredictable and will wreak havoc with a work schedule.

On my own school front, I’m finishing up my certification and will be ready to begin my Demonstration Teaching in August. I am so done with healthcare I can taste it and while I am grateful to have a job, I’m ready to be done with this place and move on to the second half of my work life.

My dad was diagnosed with prostate cancer the Sunday before Christmas, which entailed a week-long hospital stay and lots of hospital time (see?? I just can’t get away from hospitals – work there, hang out there with my kid in my free time, hang out there with my dad in my free time, hang out there for myself in my free time…) His prognosis is okay for a man his age (70) with the only treatment for him being hormone therapy. The big joke in the family right now is that he gets to go through menopause right alongside his two girls.

Driving Ms. Kelsey

Kelsey got so close to being able to drive again, just had another 2 months to go until freedom, but as is her pattern she had a seizure on July 5. That means another six-month countdown. I believe that she is having many more seizures than we are aware of . While we were on vacation I had the opportunity to watch her sleep and again while we were visiting my dad this past weekend. She jerks and twitches and moves constantly in her sleep. I’m not talking a little twitch here and there, but full on rhythmic jerks that last anywhere from 30 to 90 seconds. They aren’t the convulsive, whole body seizures, but might be her arm or leg moving in a rhythmic pattern or her arm and hand “floating” above her body. And after a BRIEF respite (maybe 30 minutes), she does it again. And again and again and again. I am convinced that these are sleep seizures. Every once in a while she will wake up in the morning with sore muscles and a bloody tongue and then we know for sure, but with these more mild events it’s hard to tell.

Her neuro started her on Vimpat a few months ago and it seemed to decrease the frequency of her seizures to a degree. We have at least been able to take her off of the Lyrica and the Zonegran with the addition of the Vimpat. She still takes Keppra and Lamictal, as well, but her response and reaction times have improved to some degree.

I don’t know if this is ever going to be something that she can conquer and like I’ve said before, my heart hurts for her. Between all the surgeries, the VNS, and the meds you would think that SOMETHING would work better. But no. As she moves farther into young adulthood, the possibility of SUDEP crosses my mind more and more often. While it’s not something that we speak about, it is a concern that I’ve shared with my husband on more than one occasion. Sometimes this disease really sucks the life of her and sometimes this disease just really sucks overall.

Weekend From Hell

Here's a day-by-day recap.

Friday: The Dog Tried To Kill Me
I am nearly blind without contacts or glasses and like most middle-aged people who are in this predicament I have learned how to navigate my way to and from the bathroom in the middle of the night with no sight. Most nights, this happens with a minimum of injury. This past Friday night my dog tried to kill me by lying directly in my path. As I was gingerly trying to step over what I knew to be her sleeping blob at the foot of my bed, she nervously tried to move out of my way. Her huge collie-butt collided with my size 8 foot and I catapulted myself over her so that I wouldn’t hurt her when I went down. When it was all over and done with, I sprained my knee and my elbow and have some pretty serious rug burn on my cheek and eye socket. I really think I might have gotten a hairline fracture of the cheekbone, but never did go to the ER to get it checked out. As she is getting on in age herself, I have cut her some slack in her previous murder attempts at night. This time all the animals got a life sentence of no more sleeping in my bedroom at night. Of course, this translated into all of them waiting breathlessly at the door just waiting until someone opened it up enough for them to make a mad dash through the opening and my husband and I opening the door just enough to toss them back out (repeat endlessly throughout the weekend).

Saturday: Shuffled Along Like an Elderly Woman
Due to the injuries from the night before, the pre-existing mid-back arthritis and disc issues, I walked through Saturday like some old, decrepit, foot-in-the-grave woman. I was moaning and groaning my way through the Farmer’s Market, turning heads with my brilliantly colored rug burn that was not very well covered by makeup. Every time I dropped something I had to estimate the value of the item being picked up against the pain I would incur by actually trying to bend over. I left a trail through the market, let me tell you, but I survived the day. I made sure I survived the night by taking some pain-killers and going to bed.

Sunday: Slicing Pineapple With My Thumbnails
On Sunday morning I decided I would like some fresh pineapple purchased at the market the day before. So I got out my handy-dandy, super sharp pineapple peeler/corer and merrily went about my business of slicing pineapple. It might have been the fact I just got out of bed, or the fact that I was hopped up on vicodin from all the injuries, but I totally wasn’t thinking when the base of the pineapple got stuck and I flipped over the corer to push it through. Yeah. A few choice words, tons of blood, and a box of bandaids later I was good to go. At one point, every member of my family had commented on my unusual grace and panache. I made it my goal to make it through the remainder of Sunday and into my bed without further injury.

One Reason I Don’t Update More Often

This is going to sound like an excuse, but to some degree it is the truth. I know that there are a few that routinely check this blog for updates on Kelsey and her condition and current therapies. Not from personally knowing Kelsey or our family or even out of concern, but because they or someone they love is going through similar circumstances. Whenever Kelsey isn’t doing well I tend to batten down the hatches and keep to myself. It’s a personal and family struggle, but not one we talk about often outside of the family. I don’t want to let our issues dash someone else’s hopes.

That being said, it’s been a long time since Kelsey has had control. She has daily seizures and we can count on at least one, if not more, every night. Her neurologist had pretty well said that the best we can do right now is adjust her meds until we see some results. We are waiting for the FDA to give final blessing to a new drug, Potiga, which might be an option for Kelsey and should be available in the next few months. Her current therapies include a multitude of drugs (Keppra, Lyrica, Lamictal, Zonegran, Klonopin, and Zimpat with Diastat as needed), all taken together and in dosages high enough to take down a fully grown adult male. That doesn’t even begin to encompass all the other drugs she’s been on previously. She had a parietal lobe resection in 5/08, and a VNS implant in 8/09. With all of this there is no control. In addition to the horrible seizure disorder, she battles depression and migraine-type headaches that are related to the underlying epilepsy.

There are days where between the fog of seizure activity and the side-effects of medication, it’s a wonder that she remembers who she is and where she is. She is slow, not mentally slow – don’t get me wrong – she’s extremely intelligent. But she is slow in response time, whether speaking or moving because of all the side-effects from drugs and seizures. Socially she has suffered because to some degree right now she is essentially home-bound. She’s in college only two days a week and most weeks she is fortunate if she makes it just one of those days and is able to stay all day. Outside of the immediate family she doesn’t really get a lot of public or social interaction. She’s lonely, and it breaks my heart.

She doesn’t want anyone’s pity, though. Through all of this, my girl has been strong – much stronger than a lot of adults are in her situation. We get comments continuously to the tune of, “how does she deal with it,” or “how does she cope,” or some variation of that. Seriously, though, what’s the alternative? Laying down and surrendering? As a child, we haven’t ever allowed that as an option for her. As a young adult, I hope she never chooses that option for herself.

Our family lives and loves through this horrible, horrible disorder. We are stronger together than a regular family could ever be. My girls look out for each other (don’t get me wrong – they will cut a sister within the house!) but they are tight. Ferney and I parent through this as best we can and we fail. A lot. But we don’t let this disease define us, or Kelsey. We make it part of our story, our history, and our life without making it more of a focus than it has to be.

End of the Potter Era

Like many across the country this past weekend, we took the girls to see the end of the Harry Potter films. Of course, I embarrassed myself by crying like a moron at the end of the movie, but not for the reasons you’d expect. All of their lives I have read the same books and series that the girls have – just one of those “mom” things I guess, to make sure I was aware of what they were doing. I began the Harry Potter books with them when they were just pre-teens. Kels and I would switch off the book, her reading during the day and I would take it at night so that we were both reading at the same time. This happened with each book as it was released. When the movies began to be released, Cam was at the Harry Potter reading age, as well, and so the tradition continued. Reading the books and then watching the movies with all three girls.

At the end of the last film when I began crying, it wasn’t because of any events within the movie. It was because just like in the movie, I had seen one season of my girls pass before me. I started this journey with them and at the end, they had somehow magically turned into beautiful, young women. Oh, how that hits the heart of a mom…

ADVANCING SLOWLY

I have a couple of pieces of good news. First, I took a lateral transfer here at work and will begin my new position in a couple of weeks. While this is just a lateral move, I am hopeful that it will reduce some of the intense stress that I have each and every day. I do not have a “stress” personality, and to be so drained and stressed out each and every day is taking a toll on my health, my family, and my sanity.

The second part is that I just got my official request to apply for the PCE part of my alternative certification. It’s a little known fact to most people that I am working on my second degree and alternative certification to teach here in the great state of Texas. Getting that request in my inbox was proof that what I have been working towards will shortly come to fruition. I am so over working anywhere in the healthcare industry. Even though it’s a HUGE pay cut to go from my position into education, I feel that this is definitely something that I can do and enjoy for the 2nd half of my working life.

Go me!

Epilepsy Update

We had the quarterly visit with the neurologist today. Bottom line is that Kels has once more lost decent control of her seizures. We're at a holding pattern - brain surgery, VNS implant, scores upon scores of drugs (Keppra, Dilantin, Carbotrol, Tegretol, Zonegran, Lamictal, Lyrica, etc.) and nothing has worked for her. This is her life and could very well be her lot for the rest of her life.

At today's visit, she looked at her doc and asked, "Why do I keep losing control?" His answser? Due to the ever changing nature of seizure disorder in some patient, they have no idea. My question was, "Will she ever gain and keep seizure control?" His answer? No idea.

I want so badly for my baby to have a normal life. This is the normal, though. And it sucks.

Blood Pressure and Other Pressing Issues

My employer offers this great, onsite fitness center. It's free, it's open during the work day, and it's convenient. So in my infinite quest for better health (and the quest of being the BEST looking 40 something year old I can be) I went to sign up this morning. I filled out the online questionnaire, scheduled my prerequisite orientation, and then took my handy-dandy health form down to one of the clinics to get a nurse to take my blood pressure and sign my form.

That's when things took a downward spiral. My first pressure reading was 184/117, which nearly caused my friendly nurse to have a stroke of her own. She strongly urged me to go to the ER, however I told her that I didn't want to go to the ER. I have a doctor's appointment scheduled with my own practitioner in a couple weeks. She said that my pressure was stroke level and again strongly urged me to see if I can get in a little sooner. I told her that I had to plan my days off and that I had one scheduled and would be fine until then. So she made me promise to come back in a couple of hours and let her take the reading again.

Fast forward to lunch time. Second reading was 164/107 -- hey, moving in the right direction, right??? But no wash, she insisted on my seeing the doc sooner and to top it off? She didn't sign my form.

What better way to prove I'm unhealthy enough to want to get healthy, right? Yeah, didn't fly. So instead I came home and popped a Lisinopril and will call my doc in the morning. All this for a little exercise.

Tired and Venting

Just to clarify – I have a blessed life. I have overall great kids, a wonderful husband who loves me, a nice house, a good job, etc. I am fortunate that God takes care of all my needs and the needs of my family, most of our wants, and we still have plenty. But…

People who know me in real-life know that I usually am NOT a complainer, whiner, or habitual griper - it’s not normally my nature. That being said, this past year I’ve become extremely unhappy at work, generally disillusioned with the workplace as a whole and with my immediate area in particular. While my home life is great – marriage and hubby are wonderful, as always, my kiddos are sorely testing my patience and fortitude lately – the older two mostly. My father has stressed me out with the whole remarriage thing. The hubby’s family is stressing me out with financial matters that are out of my control but affecting my family. I find myself short on tolerance, short on understanding, and just generally unhappy. I am physically feeling the effects of constant stress – the headaches, the aches and pains, the nausea, etc.

After spewing all that I have to say that I am wondering HOW to get past this point. I’m wondering WHY I’m just now feeling all of that when life has been much more difficult and overall horrible in the past than it is now. Is it hormonal in nature? Am I at that magic age where the mood swings, hot flashes (oh, geez – the hot flashes!!), and the crankiness rule for a while? Am I at a point in my health where things are starting to break down and the aches and pains aren’t just stress – heart problems, WLS related difficulties, etc? WHAT is going on with me physically and mentally?

I would NEVER, EVER trade my family in – I love my husband and my girls. But... But there are days where I longingly think about taking my hubby (who tolerates me right now like a champ) and just running away. Finding a new job (hey – I can be a Wally-world greeter anywhere!), finding a new place to live, a new environment and just being me. Not the mom, not the good employee, not the whole, total, functional mess that I seem to be right now and cannot seem to grow past. I think that Montana might be a cool (literally!) place to live. I’d love to live again in New Orleans (uh, but I have family there – see above stress factors). California is appealing (but those unpredictable earthquakes make me shake). Anywhere but here sounds tempting some days.

So, all two of my faithful readers – do you ever go through this? Thoughts? Suggestions? Reprimands?