Life has been a whirlwind of ups, downs, changes for the better, personal growth and precious new beginnings.
Blended family update:
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| This is a picture from our most recent blended family portrait session. I am all the way on the left, Izabelle, Miri (Izabelle's awesome Step Mom), Leaf (Izabelle's half brother) and Dale (Izabelle's dad). |
Tapering medications:
About six weeks ago, Izabelle's seizures worsened in severity. The seizures began to last longer and become very intense with new symptoms such as loud guttural screaming, eyes rolling back in the head, becoming unconscious for extended periods of time and long postdictal periods. Not to mention, Izabelle's cognitive ability was drastically changing for the worse. On September 29th, 2014 Miri, Izabelle, Leaf and I headed to Boston Children's hospital to have a Ketogenic follow up appointment. It was there that my voice as a mother was heard. We decided to up Izabelle on the diet from 3.25-1 up to 3.5-1 to help lessen seizures and start tapering off of Treleptal. I was worried that they weren't going to let us do the both at the same time… but they did!
Both Dr. Bergin of Boston Children's Hospital and Dr. Morrison of Maine Medical Center concurred that the irregularity and new severity of Izabelle's seizures were due to harmful side effects from the medication Treleptal. Treleptal was the first seizure med that actually seemed to work for Izabelle when she was first diagnosed at age four. The doctors feel that Treleptal has also made Izabelle's EEG's harder to read by creating fragments/irregular electronic discharges that resemble mini-seizures in the background. Basically, Izabelle's little brain has been having irregular activity, 24 hours a day, even when she isn't having a full blown seizure. It is our hope that once off of treleptal, that not only will the ketogenic diet work better, but seizures will become more centralized to one location in Izabelle's brain. Therefore, possibly allowing us the chance to revisit the idea of surgery. The EEG will look more clear and the techs will be able to determine more easily what type(s) of seizures Izabelle is having. The horrible side effects will go away, hopefully allowing Izabelle to develop at a more developmentally appropriate rate.
We have made it halfway through the titration schedule. Izabelle has been on the 3.5-1 ketogenic ratio for about two weeks. Seizures continue to decrease in not only frequency but also in duration and severity. Izabelle is beginning to use more vivid language to convey her ideas and is sounding out words while reading again!
It is our hope that once we wean off of Treleptal and get Izabelle more stable, we will also begin to taper off her second seizure medication - Zonisamide…
All of our supports are in place. The new school Izabelle attends is fully equipped to handle her seizure activity and the diet. They have orchestrated a beautiful seizure action plan. The Epilepsy Foundation of New England came to do a presentation on October 10th during a teacher workshop day. I love the school nurse who just happened to be by my bedside during my labor for Izabelle. We have also secured a Behavioral Health Professional, Miss B, to aide with childcare/behavioral support in my home before and after school 3-4 days a week. We will have respite care this Friday night so the adults can celebrate Halloween. Life is manageable.
Finally.
