A belated Merry Christmas and Happy New Year to everyone! We hope and pray that you all had a very blessed season of celebrating the true hope . . . our hope in Jesus Christ. What an amazing Saviour that so humbly came in the form of a baby to provide salvation for all who would put their trust and faith in Him! In the Bible, I read through the book of Matthew during the month of December and Trevor preached a Christmas series from a passage in Matthew. From that time studying the life of Jesus, it never ceases to amaze me the love of our Saviour that came to serve rather than be served! Praise Him for He alone is worthy!
I have been meaning to post an update on Hope's seizures. . .
I can't remember how long it's been since I last updated you on Hope's seizures . . . the seizure saga has been her primary health issue for the last few years. This past year she has had some of the worst seizures and seizure seasons since the very beginning. From March through June, she had a day of seizures every other week. These seizures had morphed into a very scary kind where she often would stop breathing or at the very least find it difficult to breathe during and after the seizures. During the summer, she had a bit of reprieve from seizures, which has always seemed to be the case, and then started with monthly seizures again the first week of return to school.
We made some changes to her seizure medications back in May with the new neurologist that she has now. It seemed to be heading in a good trajectory until mid November . . . she had the worst night of seizures that we've ever seen and necessitated steps we have never taken in all 8 years post brain injury (for her seizures at least) . . . a trip to emergency at the Alberta Children's Hospital.
The day began with her not feeling well and her speech slowly worsening . . . it becomes increasingly difficult for her to speak often when she is going to have seizures . . . her speech will sound slurred and stuttered like someone who has had a stroke. She was also having lots of myoclonic or involuntary jerking activity, especially in her eyes. Her first seizure wasn't too crazy other than it was longer than usual and involved old seizure symptoms that we hadn't seen for a long time . . . years. However, less than 10 minutes later, she had a huge seizure of 6 1/2 minutes where she was unable to breathe, and although we protected her airway the best we could, her lips turned blue. The longest/worst seizure she has had like this in the past was 5 minutes or less. Even more concerning was how she did not recover as usual after the seizure. For at least 30 minutes after the seizure, she was talking gibberish and then would suddenly say a phrase clear as a bell but would simply keep repeating it. She was making movements that were repetitive and didn't make sense, and she seemed to be disconnected from reality/us as she was unable to hear us and was not responding appropriately or per her usual. She also was using a funny voice and tone that we hadn't heard for about 6+ years. To add greatly to the stacking concerns, the right side of her face was not working, again much like a stroke symptom. It was all very bizarre and concerning. I wondered if she had suffered further brain damage or was having mini strokes. We also checked her seizure rescue medication stash and realized that all 3 bottles were expired . . . very expired by 2-3 years as she hadn't needed it for so long, we hadn't bothered to get a new prescription for it. She was convinced that the rescue medication made her sick and had been refusing it, as well as her seizures for the last couple of years did not fit the doctor's parameters required for her to take it. For all these reasons, we decided it best to take her in to the hospital, so at the very least, she could get a proper dose of rescue medication if needed.
We began getting ready to go to the hospital and before we left, Hope had another 2 seizures just minutes apart from each other. Again, they were much more severe in affecting her breathing and she became very nauseous. God was so gracious to keep her from having any seizures on the way to the hospital, although I sat in the back of the van with Hope and was prepared to deal with any if she had one. Trev dropped Hope and I at the front door of emergency to go park the van and while we waited for him inside, I could tell from her strange involuntary movements that she was going to have another seizure imminently. Again, God's grace was so evident to us as Trevor walked through the door, I told him I thought she was going to have another one, and then she immediately went into another seizure. We were in a very long triage line. The sweet young mother of a little boy with a very scraped up face asked if she could get a nurse for us . . . how kind of her! The nurse came and immediately began pushing Hope back into the emergency area as I protected her airway the best I could and dad timed the seizure. Another seizure began within minutes of being transferred onto the emergency table and with all the wires and monitor connected to her so they could see some of what was happening during her seizure . . . what a blessing to finally have this information documented! Her heart rate increases significantly (which Hope has always told me she feels!) and her oxygen saturation levels dropped to the 60's (which we have always believed that she wasn't breathing). It was another long seizure of over 6 minutes, and they were concerned enough that they bagged her (gave her oxygen and breaths with a mask over her face) and used a technique called a sternal rub (rubbing your knuckles firmly on the sternum or front chest bone to try to stimulate breathing again). Hope did not resume breathing until the seizure stopped. Once again after the seizure, Hope did not recover as she usually does and was not responding appropriately. She was talking in a funny voice, repeating the same phrase, and talking gibberish . . . all for around 30 minutes. She didn't even flinch when the nurse told her that she was starting an IV, even though she smiled at the nurse and said, "Okay!" and watched the IV go in . . . which if you know Hope, then you know that needles are one of her biggest fears and usually involve a lot of tears and support!
They had an IV rescue med drawn up and ready to give to Hope as soon as the IV was started, but it was not given. So, more surprising than the terrible seizures out of the blue was the fact that she didn't have any more seizures that night! They just stopped as suddenly as they had come. However, no one expected this and so they wanted to keep her overnight, also so that she could be seen by her neurologist and a plan for her seizure medication could be made before returning home. She continued to have difficult speech, felt extremely unwell and nauseous (throwing up multiple times), and she was very agitated and stressed. She did not fall asleep until around 3 am. Sleep is usually the only thing that stops her seizures. So, the fact that she didn't have any more seizures, with all her worst seizure triggers present, was just as puzzling as the terrible seizures to begin with. She only slept for 1 1/2 hours that night and then continued to feel unwell and have lots of myoclonic or involuntary muscle jerks/movements throughout her body. At least her speech was more normal again. We saw a couple teams of neurologists that night, the next morning, and then her own neurologist came in to see her around noon.
We made a plan to adjust her seizure medications slightly, which included decreasing the Trileptal due to all the involuntary myoclonic activity. Rather, they added back in a very low dose of Keppra to try to give a bit more seizure coverage due to lowering the other. The
nurse called me a week later and lowered her Trileptal a little bit more and increased the Keppra a little bit more, saying it was their last
attempt/adjustment with these medications. If this was unsuccessful, then we would try a
different seizure medication that Hope has never had before. They didn't sound hopeful that this would stop seizures, nor were we hopeful this would be successful, as the dose of Trileptal is lower than what she used to take prior to her back fusion surgery (6 years ago, when she was about 50 lbs lighter). The dose of Keppra is also very low (1/3 of what her dose was back in September). The hope is that the very low doses of two medications could possibly balance less side effects with seizure control (even though both doses are considered below therapeutic level for Hope's size/age). Hope has been on both of these meds at the same time, but at much higher doses, yet still having seizures. The question was whether the side effects resulting from these higher doses could actually be causing seizures, and we were so thankful that they were willing to consider Hope's unique reactions to medications in considering solutions. We also went home with a new prescription for her rescue med with new instructions to repeat doses of it, if needed.
Well, almost 7 weeks have gone by, and Hope is still on the two low doses of Trileptal and Keppra. She has had another day of seizures in December, however, it was only two seizures and they were not nearly as severe as the ones back in November. They did not stop her breathing, just made it a little more difficult to breath during. They were much shorter, all under 2 minutes, and she recovered as per her usual after each one. We are thankful! I will call the neurology nurse again this month and give an update and see if we will just continue as is, or if the move to the new medication is recommended. Time will tell, as Hope's pattern over the past few years has been that her seizures worsen from the early part of the year (Jan-March) until around June or summer when they tend to lessen again.
Thank you for all the prayers that you continue to pray for our sweet girlie and her ongoing saga with seizures! November was super scary for us (even Hope's neurologist told us how surprised he was to see Hope's name on the emerg list for such serious seizures!), but it was also a sweet reminder of the many graces of our good and faithful God! Some I've already mentioned, but another one was that my dad was visiting that night and had arrived just an hour before Hope's seizures started. He was able to hang out with Gabi overnight at home, go grab some supper for them, and keep her company while both Trev and I stayed with Hope at the hospital all night long. Another grace . . . we were scheduled to go on vacation the day after the hospital stay . . . we were delayed by one day with the set back, but otherwise were able to get away as a family and have a much needed time of rest and fun together right after that exhausting ordeal. We were staying at an accessible lodge in Kannanaskis that has hugely discounted prices for families with disabilities, but it is also in the middle of the mountains with no cell service or wifi. We were isolated and far from medical services, and God was so gracious to allow Hope's scary time of seizures to happen before we had left. God is good always, even when our circumstances are scary and uncertain, difficult and painful . . . He is always good and His grace is always evident . . . of that I am certain!!! And in a world of uncertainties, the unchanging character of our God and our hope in Jesus Christ are most precious of all!!!
You are so loved, dear ones!!!
No comments:
Post a Comment