Its been over a year since our diagnosis of HH. I felt like everything happened so quickly and before we knew it Eli was having laser ablation surgery. And soon after he was having it again. And now we wait to see what develops.
After talking with the other HH families who so bravely tried this new surgery to ablate the tumor, we were as confident as we could be with our decision to have the surgery. I feel they expressed such success and happiness and that their children were “cured.” I knew HH was a lifetime challenge for most who came before Eli, but with the new ablation surgery it seemed to have such limited complications and astounding success. And the Texas Children’s doctors also expressed awesome results. So I was optimistic Eli would have a similar outcome. He has not.
We had two months of marked positive improvements and then, out of nowhere, a seizure. Then more. Tonic clonics, myoclonics, partial complex, and absence seizures. For the past six months we are always in a state of trying to find a drug combination that works. We always are weening on/off medications when a new kind seizure appears, then we ween again. We had an increase of keppra which means an increase on the irritability and difficult behaviors. And an increase on the household stress levels, always on edge waiting for something to happen, looking for signs, recording every little thing, paging the doctor. And this time, for me, an increase with depression.
It is becoming clearer that our HH experience is not going to be just an interesting story that Eli can share when he gets older. It will be an on-going experience that will impact most aspects of our life. I never accepted that as a possibility before. We were just going to get through this tough time and move on. I still don’t really accept it. Not sure if that is a good thing, but for now it keeps me trying to be optimistic, even if it is not realistic.