1993 –
When Jess was 18 months, I saw her first seizure. It lasted for 5-10 seconds, her body stiffened. When I asked our neurologist if this were a seizure, she dismissed me and said I didn’t know enough to diagnose. Much later, I learned that these were tonic seizures. When Jess was in her late twos, everyone thought she was falling down because of her ataxic gait, but what we were seeing were atonic seizures. We were also daily witnessing absance seizures.
I did express my concerns with our neurologist about what I was seeing, however, at this time, with this doctor, it isn’t a seizure until the doctor sees the event or records it on on EEG.
One afternoon when Jess was 6, she was watching TV. She stood up out of her chair, then slowly turned in a circle. Her eyes were jammed to the far right. She was starting to turn pale. I called 911. The ambulance arrived in less than 8 minutes just as Jess was coming out of the complex partial seizure. Now the neurologist listened. If I remember correctly, we had a 20-minute EEG done in the office. Jess was then prescribed Phenobarbital. Within days, a major side effect, Jess was losing her ability to walk.
The neurologist changed Jessie’s meds, but did so abruptly. I didn’t know that this was a big no-no.. Jess spent an afternoon sitting in her cozy coupe because it was the only place I could keep her safe while she was having so many seizures, so many that I lost count. These atonic seizures lasted throughout the day. Even when I told the Neuro about all these events, she said just keep Jess from hurting herself and that this was to be expected.
The next drug that was prescribed was Depakote. This made her dull, increased drooling and I read that it could interfere with speech. When I mentioned these concerns to the doctor, she again dismissed me.
Blood levels for valporic acid need to monitored when on this drug. My daughter was still not doing well. While at another doctor appointment, I happened upon a magazine article about the symptoms when valporic acid levels were too high. Jess had exhibited some of these symptoms. When I asked the doctor, again I was dismissed and was told to stop reading things that I did not understand. We had one Christmas where Jess had no interest in opening any presents. She was so heavily medicated, nothing was fun.
Even though our school ended up not having the ability to meet my daughters educational and AAC needs, their psychologist suggested another neurologist (we had already seen two other neurologists that just passed Jess off as a little behind). She had another family that was helped by this doctor.
To make a long story short, after our first appointment, this new neurologist (he was the 4th) admitted Jess to the hospital for a three day EEG. The first thing that was discovered was Jess’s valporic acid levels were through the roof by a factor of eight, (we were having blood work done every three months, so don’t know how this was missed) and then it came to light that the dosage of Depakote was too high. This confirmed my suspicions the past December, when Jess had no interest in Christmas.
After the EEG, the doctor was then able to define what meds would work best based on what part of the brain the seizures were originating from. The worst of the seizures were in the part of the brain where language is processed. The only type of seizures that we saw now were absence seizures. No drug will eliminate seizures completely.
on the third day “free at last”
Over time, the anti-convulsive meds proved not to work well. Their side effects were just as bad as the seizures themselves. During these years, it is amazing that Jess was able to learn anything. Our only hope now was to try a Vagus Nerve Stimulator (VNS). The first generation of the VNS, were visible in the chest looking like a hockey puck. Now the implant is placed differently and is more discreet. The neurologist said that for one third of patients, there is no reduction of seizures, one third have a moderate effect and a third very successful. Jess fell in the most successful group. Because of the VNS, she eventually was weaned off of all medication. She blossomed. Jess started to talk!
Jess had this implant for a year and a half when I felt that the implant had shifted, It appeared to be floating inside her chest. She had another surgery and the VNS was replaced.
As wonderful as it was to have success with the implant, it required maintenance. We had to have an EEG every six months. I wondered how this would effect Jess’s life. How would she manage this? I began to obsess over this dilemma. Within six weeks, I noticed changes where the implant was. There was bruising. Our neurologist’s office suggested we see their surgeon for an appointment. The surgeon wasn’t alarmed and was convinced that she probably had fallen. He said to advise him if there are any more changes. Within a week, it was oozing. a clear liquid. It was then decided that surgery would be necessary and we made an appointment for the following Monday. The surgeon then gave me his private cell phone # (who does that?) telling us to call if there were any more changes. By Saturday, I had to call. Jess was now bleeding. The Dr. said to go to the ER asap and he would meet us there.
When the VNS was removed, there was no infection, but this time it couldn’t be replaced. The surgeon said that this has never happened before. He was puzzled and we were dumbfounded. What are we going to do now? If that weren’t bad enough, Jess developed a staph infection. Ignorance is bliss because we had no idea how serious that was, however, that’s another story.
Without the VNS, Jess ended up going back on a low dose of seizure med for a short while.
After another 18 months, the EEG’s were not showing any change of seizure activity, I decided to stop the testing. Apparently, some children with Angelman’s Syndrome may find their seizures reduce as they get older and this was the case for Jess.
The hard lessons learned:
Just because a doctor acts like they know all the answers, doesn’t mean they do. When I ask a doctor a question, sometimes it is refreshing when they say they don’t know.
Shop for your doctor. It took us four attempts before we found a good neurologist.
No one knows your child better than you do. If your gut tells you something different than what a doctor, teacher or therapist tells you, then follow your instincts. I may be just a mom, but somehow I was able to diagnose a hernia, seizures, toxicity to medicine and figured out my daughter’s true diagnosis, Angelman Syndrome. I’m mystified that I was able to figure these things out when I didn’t even have the vaguest idea as to what I was witnessing.
Finally, the professionals are not always right. If you want an answer you have to find it yourself. Just because “they” tell you something emphatically and with authority, doesn’t mean they are correct. Someone has to be at the bottom of their class…