January 17, 2016 -- Hope's Seizure History and Update

I had hoped to get some other updates out, but this past week has been a rough one for Hope with seizures.  I would like to first share this request for prayer as we seek the Lord for His protection over her, as well as wisdom for how best to help her.

Here is a quick seizure history of the last 4 years so you can better understand what is going on with her now. . .

Hope has had various types of seizures since just a few days right after her brain injury.  We were told once by her neurologist, after a couple unsuccessful attempts to catch a seizure on EEG readings, that her seizures were likely very deep in the brain and coming from multiple sites due to the severity of her brain injury.  This results in the varying seizure symptoms or kinds of seizures that we see.  It also makes it more difficult to treat her seizures.  They tried so many different seizure medications to keep her free of seizures.  After a lot of medications that came and went (most had pretty awful side effects for Hope that were actually worse than the seizures themselves), Hope came home from the hospital on Clonazepam.  However, this drug had significant side effects as well, drowsiness and living in a fog were probably the most impacting ones, although back then it was hard to know "what was what" with Hope's muddy clinical picture.  We decided to wean Hope off of the Clonazepam in July of 2012 and began a VERY slow wean plan that lasted until November of 2012.  We were thrilled with how Hope's alertness and responsiveness seemed to improve.  However, two weeks after coming completely off the Clonazepam, Hope had a really bad seizure that affected her breathing quality. . . it was pretty scary and lasted for around 5 minutes!  As a result, the neurologist wisely put her on a new seizure medication that had yet to be tried called, Tripleptal (Oxycarbazepine).  Hope had a couple more seizures (including one that stopped her breathing again) as we slowly increased her dose to one that was therapeutic for her weight.  However, once she was on the therapeutic dosage (slightly above the average dosing of Trileptal, but with room to go higher if needed), Hope's seizures remained pretty well managed.  She would have seizures occasionally, and they were always upsetting, but they never affected her breathing quality again, and we always saw them coming and could hold them off to some degree with giving Hope rest and less stimulation.

So let me quickly sum up the seizures that Hope typically had over the past 3 years . . .

Jerk seizures -- involve only one side of the body, usually the upper body only but can be the lower body as well. . . most often affects the right side. . . always has warning of it coming up, with myoclonic jerks before the seizure . . . Hope is alert and cries out during these seizures and says they are painful. . . usually about 1-2 mins long. . . afterwards she is exhausted and the affected side will be limp and weak for at least 15 mins.  Rest and limiting stimulation will often hold these off.

Stroke-like seizures -- these affect Hope's speech . . . usually we notice her speech become slurred, stuttering, and sometimes garbled minutes or hours before the seizure happens . . . the seizure is typically twitching in Hope's face . . . usually on one side but can be both . . . can also display facial droop on one side during the seizure . . . she is aware during them, although she is usually completely unable to speak until it's over . . . usually last for about 30-90 secs.  Her speech usually returns to normal after if the seizures are done, if it doesn't, more are usually coming.  Rest and limiting stimulation are comforting but do not usually prevent a seizure from coming.

Blank seizures -- these were more common in the first year after Hope's brain injury and were very short (about 20 seconds) . . . she would just freeze and stare blankly . . . unresponsive during the seizure, but recovers immediately after the seizure . . . no warning ahead of these, but no after side effects either.

Vertigo seizures -- these were first seen in May 2014 when Hope was admitted for an acute septic infection of her Baclofen pump removal site, and have continued to occur since . . . she will often complain of dizziness, light-headedness, and sometimes nausea prior to these . . . during the seizure (although we're not entirely sure these are seizures vs simply a vertigo episode, but Hope tells us that she feels like they are a seizure, and I go with her assessment as she's the one feeling them . . . and not all vertigo episodes does she call seizures) she will feel like the room is spinning and be extremely dizzy and upset, often crying . . . can be short or several mins, but always precede further seizures to come.

Right Corner of Eye "Stuck" seizures -- I know weird names, but it helps us distinguish the seizures and know a bit more of what to expect . . . these can vary greatly in length from a few seconds to a couple minutes long . . . most often Hope is alert and communicating during these seizures and frustrated because she can feel her eyes "not working" . . . occasionally she will be unresponsive, and if so, they typically last longer . . . we can usually know these are coming because she won't feel well prior and will feel her eyes "sticking" and is sensitive to light and noise . . . her eyes will literally stick in the top right corner of her eye socket most often, but sometimes will just stick looking straight ahead too (although she often will still feel like her eyes are stuck in the right corner) . . . sometimes she will also have jerking or twitching of her face, head, or body accompany.

Typewriter seizure -- okay, so this is a first time type of seizure that Hope had this past week and I think it was the most bizarre of them all, so far! . . . this one lasted for almost 5 mins and had three "parts" to it . . . it came out of the blue, with no warning at all . . . Hope tried to tell us that it was coming but her words were garbled and didn't make sense, which alerted us that something was wrong . . . the first 90 sec part involved both Hope's head and eyes moving to the left as she complained that her eyes were trying to stick to the right, but then very strangely so, her head and eyes slowly jerked back and forth as her head gradually moved to the right and then her eyes would stick in the top right corner of her eye socket for a few seconds before her head would move back all the way to the left, along with her eyes, and then they would slowly jerk back to the right again, and just kept repeating (now you understand why I called it the typewriter!) . . . she was trying to speak and upset during this time, but very garbled and hard to understand but for a word here and there . . . after 90 seconds of this, Hope had 90 seconds of her head stuck to the far right and her eyes stuck in the far right upper corner of her eye socket . . . she could not speak at all during this middle part . . . and then Hope had the third part which was another 90 seconds of the first "typewriter like" seizure again with her trying to speak but hard to understand.  See what I mean by weird!

Finally, the "breathing compromised" seizures . . . obviously the most scary of them all! . . . Hope first had one in December 2012 as I shared earlier . . . this seizure lasts the longest, about 5 minutes (although it feels like a lot longer!) . . . she goes blank and unresponsive during these seizures and her body is limp and motionless . . . in Dec 2012, her eyes stuck in the top right corner of her eye socket, which was the only clue then that something wasn't right . . . we think that her muscle control is affected to the degree that she is unable to breath properly or swallow . . . as a result she chokes or gurgles on her oral secretions (saliva), which is a lot over a 5 min period, and she slowly stops breathing (her breaths become more and more shallow until you don't see her breathing at all) and her lips turn blue . . . she feels nauseous and exhausted afterwards.  Hope also had another kind of this seizure in early January 2013 before the new seizure med kicked in.  This one by far was the worst where again her breathing was compromised but she seemed aware during it, although unable to speak (she wasn't speaking much back at this time though) . . . it also lasted about 5 minutes and but for the grace of God, we would have lost her . . . we were visiting her grandparents farm, and she was in her wheelchair at the door as we were saying goodbye and getting ready to leave . . . suddenly her eyes got huge with terror, her lips turned blue quickly and her face slowly turned dark purple with every vein sticking out . . . it was truly horrible and terrifying, especially as I looked into her eyes and saw the terror in them . . . we knew she wasn't breathing, and I just kept telling her to try and take a breath . . . after about 5 mins, she finally made a huge gasp and sucked in air . . . her neurologist later said that it sounded more likely that she got stuck on expiration and her breathing muscles kept expiring and pushing air out of the lungs but would not let her take a breath in (which is why she turned purple with all her veins sticking out).  After these two scary compromised breathing seizures, we were given a prescription for a large Ativan dose to give in case of any further seizures that affected her breathing or lasted over 3-5 mins.  We had never used this though, and it has since expired because Hope never had another compromised breathing kind of seizure in the last 3 years.  I kept the bottle of expired Ativan though as the pharmacist said that it could still be used in the case of an emergency, it just would lose more potency and effectiveness the longer it was expired.

Okay, so that all turned into more than a quick history, but I hope it will help you better understand the journey we have been on with Hope over the last 4 years with seizures, where our fears and concerns come from, and why we seek the Lord for both comfort and wisdom in something that is not hugely understood.  We do know however that when Hope is unwell, tired, or under stress or pain, that she is more prone to have seizures.  We also know, as I shared before, that rest and limited stimulation helps, if not to hold off a seizure, to at least help Hope cope with the ugliness of symptoms building up to a seizure.  We have felt at times that seizures can be like a "reset" button for Hope, where she will feel really unwell, and it will eventually build to a seizure and then she'll feel better after.  However, that has become less and less the case as of the last few months, and so our concern is growing, along with the frequency and severity of her seizures increasing.

By the way, I just have to add that Gabi is a ROCK STAR when it comes to Hope's seizures!  Hope's little sister has witnessed enough seizures to know sometimes before we or other adults around Hope know that her big sister is having a seizure, and not only that, she knows exactly how to respond and help.  She stays calm and runs for needed items.  She has even held Hope's hand and talked her through seizures until Trev and I could get there, all while calmly calling us to come!  What a blessing that little girlie is . . . old beyond her years!!!  

So I mentioned that Hope has had a rough past week . . . she has had 5+ seizures this week (over three days) . . . the most she has had in that amount of time since the first few days after her brain injury.  The first seizure was on Wednesday night, and was the "typewriter" seizure I described earlier.  Then Friday night she had the most seizures she's ever had in a row.  Over about a 4 hour period, Hope had a vertigo seizure, then a severe stroke-like seizure affecting both side of her face in different ways, then a series of really short (about 10-20 second) eye sticking seizures for a couple mins total, and then finally a compromised breathing seizure like the one in Dec 2012 for about 3 1/2 minutes.  Hope has never had more than 3 seizures in a 24 hour period, and so it was very concerning that she had so many seizures as well as having a seizure that compromised her breathing again.

Trevor and I were supposed to be away Friday night at a church event and had a sweet friend of our family coming to stay with the girls.  However, an hour before I was supposed to leave and meet Trevor, Hope had the vertigo seizure and started feeling unwell.  Trevor decided it was best for me to stay home (SO thankful for how God leads and cares for our family through my wise husband!).  Our friend, sweet Isylla, still came to read to Hope as she rested in her dark room.  I am so thankful that both Isylla and Gabi were there to help me through all the seizures that ensued. . . God's grace indeed!  I had just got Hope up to the bathroom after the third seizure (the series of short eye sticking seizures) seemed to pass.  I was concerned about getting her up, but she had been holding off the bathroom for a while due to all the seizure activity and feeling unwell, so I knew she really needed to go!  While she was in the washroom, I noticed that she just wasn't quite right, and so although I don't carry her anymore (our growing girlie has become too big for me!), I decided to just carry her back to the bed.  By the time I got her there, I knew she had already started another seizure, and I quickly recognized it as a seizure causing compromised breathing when I heard the gurgling in her throat.  I put her head of the bed up at first to help with managing her oral secretions, but then decided to put her into a recovery position on her side, so the saliva could drain out of her mouth.  I don't want to be dramatic, but I'd be honest to say that my head is still playing that moment over and over . . . holding her limp body as saliva poured out the corner of her blue lips took me right back to December 14, 2011 . . . when I first found Hope unresponsive and barely breathing, foam emerging from the corner of her blue lips.  I share this so you know how to pray for this mama's head and heart.  I praise God for the Registered Nurse training I have that keeps me calm, assessing and responding methodically in those moments, even though I still feel terror in my heart.  My struggle is usually later, especially when I'm alone. . . I think I went and checked on her to make sure she was still breathing throughout that night at least 3 times, even though she has never had a seizure at night while sleeping . . . praising God for that!

I asked Isylla to grab the expired Ativan we keep in Hope's school backpack once her lips turned blue and we passed the 3 minute mark of the seizure . . . she was amazing at figuring out where to find it with limited information (another praise!) . . . I was holding the Ativan against the inside of her cheek to dissolve when Hope's tongue suddenly swept over, grabbed what was left of the pill and dissolved it on her tongue while she said, "I'm just turning it into chalk."  Isylla, Gabs and I all breathed a huge sigh of relief as we chuckled at her funny and unexpected comment . . . what a kid!  Trev left the church event early as soon as I was able to text him after the compromised breathing seizure, but thankfully she didn't have any more seizures after he made it home.  Once he was home and our family had some "debrief" time together, Hope crashed hard . . . she was asleep in seconds of us leaving the room . . . whether that was exhaustion from the many seizures she endured, or the effects of the Ativan . . . maybe both, eh!

So . . . I will be calling Hope's neurologist's office tomorrow and letting the nurse know Hope's seizure history for the last few months since we last saw her in August 2015, and significantly increased her current seizure medication.  I think she already has a bit of a heads up . . . when we saw another one of Hope's doctors in December, we shared the new history of seizures Hope had been having and she had already said that she would share this with Hope's neurologist.  Since Hope actually had an upsetting bout of vertigo while at that doctor's appointment, this doctor also said that she would be referring Hope to be seen by the vertigo clinic as well as a gynecologist.  We have not received any follow up appointment dates with these new clinics yet.  I'm thinking when I call the neurologist tomorrow, that may get hurried along . . . we'll see.

You might be wondering about why a gynecologist referral . . . I have hesitated to share this out of respect for Hope's privacy, but she gave me permission to share this, especially since it is a huge prayer request . . . we have noticed one very important thing regarding all of Hope's increased seizure activity since October 2015 . . . these monthly bouts of seizures are happening during her menstrual cycle.  This is not uncommon at all, even somewhat expected, for someone with a seizure condition to have the seizures worsen during adolescence.  Thus, the referral to the gynecologist was made, based on the rationale that simply increasing or even adding/changing seizure medication will likely not be helpful.  We need to look to the root cause which may be hormonal, and thus alternative treatments may be much more effective.  After hearing from a couple friends about some natural ways to treat hormonal imbalance, we are also going to start giving Hope primrose oil, in hopes that this may help vs other more invasive or chemical options . . . would really like to avoid those options for many reasons!  Update from Monday afternoon:  I ran the option of trying primrose oil by Hope's neuro nurse today to make sure there was no interaction with her seizure medication, and she recommended from her research that we do not give it to her at this time. . . she said it has been linked to causing seizures, including night seizures.  So we will table this option for now.  I am going to start taking it and see if it makes a difference for me and then we'll pray about whether to try it with Hope in the future.  Bummed about this, as I was hoping this would be a good option for a natural treatment vs a chemical one, and am still not convinced that it isn't the best option to try with Hope.  But for now we will hold off, and respect her medical caregiver's wishes.  How I cherish the wisdom that the Lord provides in each of these decisions, one step at a time!

Well, that turned out much longer than I intended . . . but you know me well by now, and that being concise is a gift I don't have!  This helps me to document and think things through, so thanks for being my "journal!"  And most of all, thank you so much for your continued prayers for our sweet Hope and her journey!  Trevor preached this weekend on God's sovereignty and such a timely reminder for us to trust Him in ALL of the circumstances in life . . . not just the easy ones, but in the unknowns and the unwanted ones too!  He is always faithful!  He is always good!  And we are always humbled by the care and provision of God through His people . . . from those far away who do not forget and remain faithful prayer warriors . . . to those close who are loving on us in tangible ways as well as praying . . . we are blessed by each and every one of you, dear ones!  May you know how truly loved you are!!!