To start off our new blog, here’s a post from 12/7/15, a week before Aria started Haleigh’s Hope. There were a lot of tough decisions to make, and I don’t regret a single one.
*Keep in mind this post was written in 2015, seizure statistics don’t match current progress
December 7, 2013
I remember the day it happened all too well, and it breaks my heart every time (read my short article here).
In the year 2015, Aria has had at least 668 seizures to date, and that’s not including seizures captured during hospital visits, which would very likely push that number closer to 800.
In the year 2014 and December 2013, Aria had more than three times the seizures as this year, coming in at nearly 2,675 seizures; again this number does not include seizures captured during hospital stays, and is a rough estimate of activity during December ’13 and February ’14, as I only started using the seizure tracker mid Feb ’14. That number is probably closer to 3,000 seizures.
She’s come a long way in treatment, to say the least. We’ve been able todecrease her seizure activity by roughly 73% over the past year.
The photo on the right is what I would have to give her twice a day.
Aria has been on five different medications, Phenobarbital in December 2013, and Keppra in February 2014, were the first two she was put on, and her seizures still continued to escalate in numbers. Then Topamax was added in March 2014, and her seizures continued to escalate, until she reached about60-80 seizures a day. Onfi was added in April 2014, and was the first to bring her seizure relief, and for six months we thought we had it figured out, and we were able to get her off of the Phenobarbital.
January 2015 she broke through, quickly escalating to 20 seizures a day. After increasing her current meds, Trileptal was then added in February 2015. Her seizures decreased to 1-3 seizures a day, and at that point we had scheduled her surgery for July, because it was clear these seizures were not going to stop with just medication.
Two resection surgeries later, missing her right temporal lobe, partial resections of the right occipital and parietal lobes, and the hippocampus in the right hemisphere, Aria went 42 days seizure free, and it was amazing to see what she could do!
That honey moon quickly ended, and she began having seizures every week, every three days, every other day; it was very sporadic. Then they started picking up to 1-2 every night and/or during her naps.
This brings us up to present day (December 2015). Ian and I decided that pharmaceuticals were no longer the way to go. Though she was still having seizures, they had become less tolling on her development, and now the side effects of the medications were more prevalent and disrupting to her quality of life.
This poor little girl hasn’t known life to be anything but filled with seizures, medicines, and long term hospital stays.
We want to give her a chance at living a life free of seizures, or much less of them, and with out all the horrible side effects of pharmaceuticals – which she hates taking.
After speaking with her neurologists, consulting with another neurologist, and many families who also chose a different route, we came to the conclusion that it was time to take a leap and try Haleigh’s Hope hemp oil.
We’re currently in the process of weaning (Nov/Dec 15′) Aria (under doctors’ care) off of the pharmaceuticals, in preparation to begin medicating with hemp oil this upcoming weekend (hopefully our stay doesn’t get extended again). Aria began weaning from Trileptal at home, prior to being admitted to the hospital (per doctor’s instructions), and we surprisingly saw a reduction in seizure activity immediately. Once admitted to the hospital, Aria began weaning off of Keppra, and there still continued to be a reduction in seizure activity, and intensity. The only events I’ve noticed were a few Simple Motor Seizures that didn’t show up on the EEG, so the doctors on the floor aren’t convinced they were seizures.
Last night (12/6/15), she began to wean off of Onfi. The original plan was just to wean Trileptal and Keppra, capture five seizures, and be on our way to start Haleigh’s Hope, but because no seizure activity has occurred (besides a few simple motor seizures that don’t show up on the EEG), the doctors have decided to wean the Onfi now, to get a better idea of where her baseline is for three months post-op from brain surgery.
Last night we cut her dose in half, from 10mg down to 5mg. I haven’t noticed any events over night, so her morning dose was cut in half from 7.5mg to 3.75mg. There’s a different neurologist on the floor today, one we had when Aria was in for surgery. She’s very happy with how well Aria is doing off of a majority of her medications, so she wants to keep her on the decreased dose of Onfi, and have us out of here by Wednesday afternoon!
I continue to see a positive cognitive response as she comes off the medications, and I can’t wait to see how she progresses once she starts Haleigh’s Hope!
If you asked me a couple weeks ago, I would have said I thought surgery was kind of a bust. Yeah, her seizures were significantly reduced, but it looked like they were just going to continue to increase (which is sometimes the case with intractable epilepsy, it’s just resistant to treatment). Ask me today? I say it was definitely successful, and that I think that after surgery her brain didn’t need all those medications, and that’s why she was having seizures because it couldn’t function properly. It’s quite possible that maybe she just needs the Onfi until she’s been on Haleigh’s Hope for a significant amount of time, and then we wean it later on down the road. It could be we continue to not see seizure activity as we wean her, and then all she takes is Haleigh’s Hope as preventative treatment. Time will only tell, but we are certainly on the right track and battling our way towards seizure freedom.
Is it possible she’ll never achieve seizure freedom? Yes, it is very possible, but we can only hope we can gain better control over them. Unfortunately that’s the case with epilepsy, there is no cure, no guaranteed treatment that will work. The closest we can get to a “guarantee,” is trying Haleigh’s Hope, and hoping for the best.
Stay tuned for an update on Aria’s 7/8 month progress on Haleigh’s Hope!
Teaser: Aria is now pharmaceutical free, and making amazing progress developmentally!