On Wednesday this week, Miri (stepmom) and I, along with Leaf, Izabelle's half-brother, accompanied Izabelle down to Maine Med Neurology to consult with Dr. Morrison about how to proceed with Izabelle's seizure treatment after he had the time to look over the results of her ambulatory EEG from the week prior. We already knew that the EEG didn't look vastly different then EEG's of the past and that Izabelle's epilepsy was of one of the rarest forms encountered by Dr. Morrison. We had so many questions: what was to come?, what was next?, why?, why?, why?... and this is what we found out:
Izabelle had completely titrated off of her medication Treleptal to see if her EEG would look better. We were specifically looking for less abnormal brain activity such as spikes in the background of her EEG, less seizure activity and more localization of seizure activity.
Nothing was any better.
If anything the EEG appeared worse and the brain activity was visibly slower then it was in the past...
therefore, indicating that Izabelle's rare epileptic condition was progressively getting worse....
Between three adults, we decided that the KETOGENIC DIET which we gave a long hard try since May... was clearly NOT making matters better... and the new tonic clonic/generalized seizures that we were seeing as of late were not a fair trade for the five small 30 second complex partials as we were used to seeing before. We are starting the titration off of the Ketogenic Diet as of today.
In three weeks:
NO MORE WEIGHING FOOD!
WE CAN GO OUT TO EAT!
I CAN COOK FOR BOTH OF US AGAIN!
I WON'T BE BOUND TO THE KITCHEN FOR HOURS!
NO MORE STUPID SUPPLEMENTS!
Izabelle has:
- Been failed by eight or nine pharmaceutical drugs and the ketogenic diet.
- Endured brain scans (Countless EEGs, 2 MRI, 2 ICTAL and 1 INTRA-ICTAL spects and 1 PET) and haven't located any abnormality of the brain.
- Gone through a genetic screening which indicated two genetic variants that have no research to back up possible links to a known epilepsy syndrome.
- Experienced a worsening in seizure symptoms instead of an overall improvement.
- Has been failed by the Ketogenic diet.
- Undergone multiple psychological tests that indicate a severely damaged working memory.
Our next options...
Medications:
We discussed other medications... there are five options. We are going to retrieve the names of all of them and look at the common side effects... because... really, at this point, even if we experience less seizures, we expose Izabelle to horrible side effects, and vice versa. The next medication trial will be Banzel which has a primary side effect of drowsiness... We are going to wait for this until later.
Vagus Nerve Stimulator:
We discussed this option but decided against it because the invasive surgical procedure has less proven effectiveness then the Ketogenic Diet.
Medical Cannibus:
We discussed medical Cannibus as therapy, Dr. Morrison recommended jumping straight to it, and gave us a prescription on the spot. This therapy may include Izabelle ingesting a gummy, caregivers adding a syrup to food or administering a tincture. CBD, the non-narcotic part of the cannibus plant has been proven to kill cancer cells, stop seizures, aide in pain management, among others. This was our last therapy on the list to use. We will go back to the others if needed.
It is very possible that Izabelle may never become seizure free. We are praying that the Medical Cannibus has the same effect on Izabelle as it has on other children around the world.
http://www.epilepsy.com/make-difference/advocacy/advocacy-priorities/epilepsy-and-medical-marijuana
We also discussed learning difficulties, attention difficulties and memory issues. At this point, we are going to stop testing, wishing for more, and feeling defeated by Izabelle not picking up on the new knowledge we try to impart. Dr. Morrison said that the only way he could see her progressing academically would be if we could get her seizure free or find a medication with less detrimental side effects. We just want to let her be for now and try the Cannibus. We will reassess the situation later, but it is a possibility that Izabelle may never progress cognitively past the age of five. Our last test will be a Psychiatric eval. The goal being to use information gathered to locate resources to make Izabelle's life more comfortable and assessable. It is very possible that Izabelle has ADHD, OCD and/or Autism. Despite her diagnosis(s), we all concur that adding anymore medication is completely out of the question. We want to honor our spirited child for who she is, exceptionalities and all.
We have started a Go Fund Me page to help with past medical debt.
Please visit the website to make a donation:
Thanks!
