On August 1, 1994, the FDA recommended suspending use of the anti-seizure drug, Febatol (felbamate), since it had been linked to ten cases of aplastic anemia – a rare and often fatal condition. In many ways, Anissa appeared to be better on the drug but her neurologist did not feel it was worth the risk, so it was discontinued. Several new drugs had been released that looked promising for controlling seizures.
Neurontin (gabapentin) was added to Anissa’s medications, but after two weeks of the drug combination, it became evident that Neurontin was certainly not promising for her, so it was deleted. Her severe adverse reaction had created a series of seizures during which bloody saliva drained from her mouth. We thought she bit her tongue only to later discover that two left, lower molars had fractured and crumbled, breaking at the surface gum line.
Because of so many drugs taken to alleviate the seizures, one destructive side effect was the pitting of her teeth, which caused them to be fractured during a hard seizure. Not visible to the naked eye, decay had developed within the teeth. Because of Anissa’s need to be anesthetized, this required another trip to Shands Hospital. Praise God, we were blessed to have the same sweet dental surgeon and team as in 1992, when Anissa’s wisdom teeth were removed.
This time, she had four left molars extracted, along with five restorations. Her EEG showed none of the seizure activity that had previously been seen while she was deeply sedated. Therefore, we concluded that Felbatol must have had a positive effect in helping to control seizures. Anissa’s gums and mouth healed quickly, but evidently the chemical balance of the neurotransmitters in her brain was jolted from the anesthesia, as nothing seemed to work the same thereafter in controlling the seizures.
We have learned that when one door closes, God opens another door. Our hopes were next on a promising new drug, Lamictal (lamotrigine), that Anissa was scheduled to receive through the University Hospital at Gainesville, until we discovered it would require a lot of testing. We knew her frail condition could not tolerate such an ordeal, so we decided to wait until it was readily available.
The following year, in May of 1995, an exam revealed that Anissa had an erosion of the opening into her stomach from the esophagus, causing many digestive upsets. Prilosec (omeprazole), corrected the condition but to our dismay, it caused a sequence of much harder and more dangerous seizures.
The drug, Lamictal, became readily available in October, of which Anissa was able to tolerate small doses without digestive upset. She reacted very similar to that of Felbatol concerning alertness. Her sleep became at least 90% better, as well as less seizure activity. However, when the dosage was increased, Lamictal caused greater tension in her muscles, she was unable to relax and suffered from nausea and reflux. In order to give Anissa the adequate dosage required for better seizure control, her anxiety level increased considerably, thus defeating the purpose. As with Felbatol, the ill side effects reduced the benefits.
During an appointment with the neurologist in Melbourne, Florida, he indicated that Anissa suffers from the “worst-case” type of seizure disorder. My response: “I sure would like to know more about the brain!” His quick reply: “So would I!”
Much of our learning has been by trial and error. Of course, we will not allow any drug with like components contained in Phenergan, such as the phenothiazines, to be used for Anissa. The adverse reaction she suffered from Neurontin and Gabitril (tiagabine), gives us cause to question drugs affecting the GABA receptor in her brain.
“Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.”
Philippians 4:6-7 NKJV
Patients such as Anissa are dependent upon decisions made by others. As legal guardian for the well-being of my daughter, prayer and a healthy diet is a necessity! Searching the Internet for any new therapy can also be helpful. But to persevere, it takes the guidance of the Holy Spirit and His Excellent Grace!
To contact Anissa’s mother email her at firstname.lastname@example.org
To take a tour of the healing center go to http://www.wellspringhealingretreat.org