Hello dear ones! I'd love to share a quick update on Hope's seizures as well as a prayer request for an appointment tomorrow to meet Hope's new neurologist . . .
Hope is still having seizures. As usual, her patterns continue to change and keep us on our toes. I will start with an overview or sum up of her seizure pattern for the last 2+ years since her seizures have resurfaced in October 2015.
Jan to June -- Seizures start to pick up and worsen in both frequency and severity. By last June 2017, Hope was having seizure days every other Saturday . . . yes, our girlie is a strange one! She would typically have 3 seizures a day, and rather than starting in the evening as usual, they could start as early as 7:30 am, with less warning or pre-symptoms. We usually give a rescue dose of Ativan after 3 seizures, as her seizures tend to worsen each time. However, the Ativan has started to make Hope quite sick. She will become very nauseous and vomit. And even after she falls asleep and the seizures stop, she was having the nausea and unwell feeling continue for about 2 days following. Three to four sick days every two weeks was definitely impacting her school attendance and church attendance because it was always on a weekend. The other concern was that Hope's abilities and progress also seem to go backwards during these months of increased seizures, which always scares us that more brain damage could potentially occur.
July and August -- Seizures start to settle and she would start feeling better. Usually just 1-2 seizures on one day of the month. Easier to work around them with no school and a lighter ministry/family schedule and more flexibility during the summer.
Sept to Dec -- Routine would start back up (school, ministry, family life) and Hope's seizures would just hold at the typical 1-3 seizures on 1 day each month. Interestingly, just as I shared in the previous post about her walking, it is during these months that we would see great progress and steps forward in Hope's brain injury recovery and even her academic performance and growth.
Jan -- Hit repeat and start at the top again!
After 2+ years of following this trend, we are definitely intrigued by what is going on with our girlie and her seizures. Also changing are the seizures themselves! Hope's typical seizure 3 years ago (which she would maybe have one day of 1-3 seizures per year!), was a myoclonic seizure that would be a day of involuntary myoclonic "jerks" of her right arm increasing in frequency and intensity until she would have 1-3 seizures. When Hope's seizures started to resurface in Oct 2015, Hope started having a number of very different types of seizures, and seizures that looked very different and had a variety of symptoms both before, during, and after her seizures.
Hope started seeing a new neurologist who was a specialist in pediatric epilepsy and the hope was that he would start from the beginning in thorough assessment and testing to attempt to capture and diagnose her seizures so they could more effectively treat them. We saw him for a little over 1 year (Mar 2016 to June 2017) during which time Hope had a week long hospital stay in May 2016 under constant EEG monitoring, trying to capture seizures on both EEG monitoring and video. This was unsuccessful for the most part . . . even with drastically lowered seizure medication doses for that whole time and sleep deprivation, Hope only had one seizure in the hospital that was captured on EEG, but was not captured on video. Sadly, our poor girlie was in the bathroom at the time of the seizure and was brushing her teeth when it started, which also interfered with the quality of the EEG being able to diagnose if it was a focal seizure, originating from one place in her brain or involving the whole brain. (Her seizures symptoms would speak to focal seizures, but without EEG back up, they have yet to be officially diagnosed or understood.) During that week, the EEG did capture one 8 min sub-clinical seizure (meaning one that showed on EEG, but Hope herself did not have any notable symptoms visible to us). This was concerning to us, not knowing how often this might be happening. One thing that came out of this hospital stay was that the neurologist that was covering Hope (another new one we had not met before) agreed that it did not make sense to send Hope back home on such high doses of the seizure medication she was on, so she significantly lowered her seizure med dose. As usual, Hope seemed unaffected by the change in medication and continued in the pattern I shared above.
In June of 2016, the pediatric epilepsy neurologist decided to stop Hope's old seizure medication (she'd been on that one since Dec 2012), and instead start a new seizure medication . . . well, a new one since her initial hospital stay where she had tried it early on and done very poorly with it, so they moved on to other medication options. Hope seemed to tolerate the new seizure medication okay after about a month of rocking the boat, but the seizures did not stop. She continued following the pattern I shared above. If anything, her seizures actually became worse in our minds, although the frequency did not increase, the severity and duration of the seizures changed significantly. Hope began having seizures that severely impair her ability to breathe . . . some actually stop her ability to breathe. They were lasting 3-5 mins, instead of about 1 1/2 mins. And they left her breathing/coughing muscles very weakened after a seizure so the affected breathing lasted much longer than just the duration of the seizure! They were very scary for us, and especially for Hope, who by this time now had an amazing memory and was usually completely aware during the seizure, although unable to speak and even sometimes hear during and often after the seizure as well. I already shared that the Ativan rescue med stopped working as well, or had very unpleasant side effects that lasted a long time. It all felt worse even though the yearly pattern itself and the number of seizures didn't change.
In June of 2017, the pediatric epilepsy neurologist let us know that he was leaving and they would call with a new neurologist to see and start following Hope. At this last appointment, the neurologist gave us permission to increase her seizure med to the max dose, and we did that slowly last fall. Nothing changed with the seizures. Hope had her last severe "breathing affected/stopped" seizures in December. Jan 2018 she had her first seizure free month in a very long time, which we were so excited about and wondered if the pattern would finally be broken. Then she returned to the pattern with increasing seizures in Feb and from then on. We are very thankful that over the last 3 months, Hope has not had any seizures where her breathing was completely stopped! She has had more days where she has not felt well and felt like she was going to have a seizure, but the seizures she has had, have been less in severity and duration. However, she is having way less pre-symptoms. . . sometimes even none at all . . . which makes it a bit more scary if she has another breathing-affected one out of the blue. Also, she has started having them in public places or around people, which in the past, this was also rare. So some good changes and some bad, but in general, she tends to continue to follow her yearly pattern overall.
And now . . . that appointment with the new neurologist is finally happening tomorrow, April 18, 2018! To be honest, we are unsure of what to expect or even hope for. So I was burdened to get a post up today and seek your prayer on Hope's behalf! Of course, we continue to ask that Hope's seizures would just go away and she would be healed of them. We would be thankful for them to decrease or go back to the simple myoclonic "jerk" ones that don't affect her breathing! We would even be thankful if she just had way less of the breathing affect seizures. Ultimately, we entrust our beautiful girlie into God's hands. He knows it all, every detail of her brain and what is happening. He also knows what the best treatment is, and He knows His future plans for her seizures and health. We're thankful that regardless of how our experience with the new neurologist goes tomorrow, our God is over not just Hope and her body, but He is also over this doctor and we want to pray for him as well . . . for wisdom in diagnosing and treating our puzzle girl, but also for another soul that will cross paths with Hope's story! May God do a work both in and through this new neurologist, as well as continue His work in each of us!
We cannot put into words adequately how much your continued prayers and notes of encouragement mean to our family! We love each one of you, some that we have never even met, so very much! And we praise and thank the Lord for the blessing that each one of you has been to our family, from near and far! Thank you for continuing to pray for our Hopey girl!!!
You are loved!!!