Seizures & Rages Return (continued)
The next year continued to progress with more seizures and increased aggression. Grace required 1:1 supervision at all times to ensure her safety. She became depressed and began to withdraw from life and the family she loved. We were back to a place that was worse than before surgery and felt like Grace’s life and our happiness as a family was once again being stolen by this hypothalamic hamartoma.
The next year was so reminiscent of life before surgery. We were working closely with her neurologist to find a balance of anti-seizure medications to help decrease the frequency and the progression of her seizures as well as trying to find the right anti-depressant to help with her depression. Grace’s quality of life was severely compromised during this time and our entire family was devastated at seeing her pull away from us and life. We were fortunate that her neurologist was willing to work closely with us throughout this time. I approached him regarding my theory as to her heightened level of anxiety and it being the catalyst for the increased seizures and rages, he was very open to looking at other possible solutions. When he initially recommended Prozac as a solution to the anxiety, it was a difficult thing for us to wrap our heads around. Grace was only 6.5yrs old and the thought of such a young child being on this type of medication worried us; however, we also knew that Grace’s brain did not function as that of a healthy 6.5yr old child and knew for Grace’s sake we needed to give it a try. Her happiness depended on us finding something to help her and this was the next step. Grace started Prozac in November 2010, within three days of being on the medication, the Grace that had been taken away from us in the previous year was back. Her overall anxiety level decreased dramatically and the decrease in rage behaviors was unbelievable. She began to engage in life and the things she loved. We had turned a corner and she was once again beating the odds of living with a hypthalamic hamartoma.
Life had been amazing for Grace and our family since November 2010 and 2011 will forever be remembered as the year we had our Grace back with us. She was happy. She was engaging. She was silly. She was loving. She was caring. She was loving school. She was loving playing with her siblings, Sarah and Garrett. She was the Grace that had, for so many years, been taken away from herself, as well as from our family by the devastation caused by the seizures, rages, and aggressive surgery.
In late October 2011, Grace had a routine follow up MRI, which we sent for review to the BNI team and to Dr.Rekate. We weren’t expecting the news we received. They both saw something that hadn’t been seen in the previous post-op MRIs. There was a sliver of the hypothalamic hamartoma remaining. Although unexpected news, it didn’t surprise us. Ever since Grace’s seizures and rages had reoccurred in 2009, we felt that although the doctors believed they had gotten it all, the only explanation could be that there was a small portion of the HH remaining. The doctors provided us with recommendations of treatment, including a future surgery, if that was something we wanted. Both were cautious about proceeding with a surgery as Grace’s hypothalamus had been so compromised during the first surgery and never recovered. We let them know another surgery wasn’t something we’d want to pursue and instead we were planning on heading to the epilepsy center at University of California, San Francisco, on December 14, 2011 for a consult regarding the ketogenic diet. A report earlier in the year by the team at BNI had indicated this diet may have some potential success for those with a hypothalamic hamartoma and we felt it was an opportunity for reducing or eliminating Grace’s seizures without the catastrophic risks of another surgery.