Jackson

Jack's life changed a week after his 5th birthday when he was rushed to Hershey Medical center after having a seizure on our bedroom floor. Our previously healthy boy went in to “Status” basically one long seizure that medications couldn’t stop or control…He spent 3 months in the PICU at Hershey med (7 weeks in a pentobarbital coma). During that time doctors tried 10 different seizure meds and combinations of them, IVIG, Steroids, the ketogenic diet…yet he continued to have seizure daily. He was eventually diagnosed as having FIRES (a devastating pediatric epilepsy). Jackson is currently on 4 seizure meds (2 of them Benzodiazapines), he has 2 rescue medications, the Ketogenic Diet and has to wear an oxygen saturation monitor overnight to alert us to seizure activity. The seizures damaged Jacks brain so much that he functions at an 18-month age level and is nonverbal. Our neurologist feels that the medications he is taking in such large doses could also be contributing to his cognition difficulty.

We continue to have hope that Jackson will improve and take baby steps forward so he can live the best life he is able. Upon last check, Jack's liver enzymes were raised and his doctor was concerned one of his primary medications is causing problems…when we tried to lower the medication Jack went into a seizure cluster we didn’t know if he would come out of so the medication remains and we are keeping a close eye on his liver. Unfortunately this information is pushing us to look for alternatives and CBD came up. Our neurologist said that if it was legal in PA he would put Jack on it in a heartbeat. This is a conversation we should be having with our doctor…not with lawmakers. Jackson needs this medication so he can live.


Update March, 2014:

Since the committee hearing on SB1182, Jackson has suffered at least 15 tonic clonic seizures. One episode lasted so long (over 15 minutes) that we had to call an ambulance after administering his rescue medication. Jack had extremely labored breathing during this episode and it was terrifying for his twin brother who was home at the time. Jack has missed 9 days of school in the past six weeks due to seizure clusters. He fell in the driveway and hit his head while waiting for the school bus during a drop seizure. During a recent visit with Jack's neurologist we reviewed the results of an ambulatory EEG done earlier this month, it is decidedly the same or worse from the last EEG even after the addition of two new medications (Onfi and Vimpat). We have begun a taper of Dilantin (another one of his 5 medications) as Jack's liver enzymes and continued problems with cognition are concerning our neurologist. The last time we tried to taper this medication was when Jack suffered the seizure that took away his ability to speak. We have also started to look into and try alternative (legal) medications such as Fish oil, vitamin B6 and Frankincense Oil. We are considering starting Jackson on an Alzheimer’s medication, at his neurologist's suggestion, to help with his continued cognition delay. At his next appointment (if the Dilantin taper goes well) we will schedule a VEEG to help us decide if Jackson is now a candidate for brain surgery (he was not a candidate previously due to the erratic nature of his epilepsy.)

-Cara Salemme