Story #4/ First Drug Down:
Rose’s first seizure medication was a chewable tablet we will call 1T. Now we knew that the cause of the seizures was always in her brain, not just showing up with fevers. The enemy was a resident, not a visitor. Our family was in a constant state of vigilance. I do not say this lightly. Our vigilance continued for decades. We were emergency-ready twenty-four/seven. Rose nicknamed herself 24/7 because of this. We all tried to play this down, but it was what it was. Epilepsy was the new center of our universe, but we tried to carry on as before.
With the drug 1T, Rose became more active and hungry. She seemed hyper-emotional compared to her prior happy-go-lucky self. Was this change due to the new drug or an after-effect of the big seizure? Her carefree childhood was transformed into a series of tests and medications and worried faces.
Our family planned a camping trip for mid-June. We hauled the boat and tent to a state park for a week of fun. Our campsite was along the shore of a crystal-clear lake. Some friends with a daughter Rose’s age came to visit and spend a day with us out on the water. Rose had a lot of fun on this trip. She made her own little playhouse inside a folded lawn chair. What an adventure.
Her dad and I had discussed what we would do if a seizure occurred during our stay here. We knew where the hospital was. We located the park office. There were officials around who could help if needed. We made our plans in case of emergency. We had the bag phone. We were cautious, but brave.
During the night on Wednesday, I was awakened by unusual noises and motion beside me in the dark tent. I quickly switched on my flashlight. Rose was seizing in her sleep. Her face and neck were covered in drool. Her skin looked splotchy. The seizure was short.
I laid back down on my sleeping bag, keeping a hand on Rose. I lay there thinking about what a crazy stupid mother I must be to have my baby here in the middle of nowhere, in a locked campground, in a tent, in the dark. This event was the beginning my paranoid hopes of buying a house across the street from a hospital. That way we would always have medical help close-by.
When Rose awoke the next morning, she was scratching her neck. I pulled up her pajama top. A prickly red rash covered her torso and upper arms. Her lips were swollen. The bag phone was used to call her pediatrician. His diagnosis was that Rose had experienced an allergic reaction to the new drug, 1T.
Camp was broken. The tent was bagged up. Supplies were tossed haphazardly into the pontoon boat and the back of the truck. We headed back to civilization and safety.
We stopped by the doctor’s office and pharmacy on the way home. Drug 1T was not the right drug. There were more to choose from. Lots more. Surely the next one would do the trick and stop the seizures without side effects. Seizures had been around for centuries. Surely there was an effective drug to fix this.
Seizure Mama speaks to parents:
A drug is a drug. It is a chemical compound, not a magic wand. It does what it does with the other chemicals in the body. Drugs are not dynamic substances. They work or they don’t. If a drug is not working, move on.
After trying several different drugs, we began to feel obligated to give each new drug more time, and sometimes more chances than it probably deserved. We were afraid to damn each one for fear there was not a new drug waiting in the wings. Learn their names. Know their half-lives. Keep records of their effects and side-effects. When the evidence shows the drug is ineffective, move to another or a new combination. Do not linger with a drug failure.
My charts of drugs and dosages, seizures, and side effects gave us confidence to move forward in terms of medications and treatments. It also eliminated “re-inventing the wheel” when we had to change doctors or go to a new clinic for tests.
Note: I will not be sharing drug names in the book or blog.