Well, that was quite a Honeymoon! Unfortunately, since my last update in November about Jenelle's AMAZING seizure control on the new drug Fintepla; seizures started creeping back on a daily basis back to her normal baseline of 3 to 8 a day. But for 14 amazing days, she was seizure free!
We met with Dr. Steenari the week after Christmas and discussed our options. Prior to Fintepla, we were discussing brain surgery (Corpus Callostomy). That is still an option as well as another surgery option - Deep Brain Stimulation (or DBS). Like the Vagus Nerve Stimulator (VNS) which Jenelle already has, DBS is a probe inserted into the brain to discharge an electrical pulse to stop seizures from starting at the deepest part of the brain when they begin. We also discussed the possibility of trying a modified Atkins diet and Dr. Steenari has ordered a metabolic panel to start.
Getting back to the DBS - as mentioned before, Jenelle suffers from 5 or more different "types" of seizures. With her current medication cocktail, and the VNS, we have eliminated all but one type of seizure for Jenelle, which is the drop seizure. Prior to inserting the VNS, Jenelle struggled with 3 types of seizures - absence seizures (staring seizures), complex partial seizures and drop seizures (with the occasional and rare Grand Mal (tonic/clonic) thrown in when she was really sick.) So, getting her VNS drastically improved her seizure and her quality of life in controlling the absence seizures and complex partial. With DBS being very similar to VNS, we are inclined to consider getting the DBS before Corpus Callostomy. Brett and I need to do a lot more researcg about Corpus Callostomy and DBS before making any decision. At the conclusion of our follow up, we decided to "stay the course" for now and now make any changes and consider surger in the Spring/Summer when the Flu and Covid seasons are better. As always I will keep you posted...
We had a wonderful winter break until we all came down with Covid at the beginning of the new year. Well, Brett and Jack had positive tests for Covid, and Jenelle and I were negative but with our family doctor said that with Omicron being so contagious, and all of us in under one roof, just consider us all infected. Brett seemed to have a horrible cough (lingering), and I had the sinus/ear thing while Jenelle had a runny nose and Jack was completely symptom free except for some fatigue (those darn college athletes!) We are all out of isolation/quarantine now and excited to start this New Year again.
That is all for now. Thank you for your thoughts and prayers... our next follow up is in March.
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