After the removal of Anissa’s wisdom teeth, the following year in June of 1993, she was approved for the experimental program to begin Felbatol (felbamate) therapy. She ended up having to go the least desirable way rather than embarking on the “compassionate” program, which we had preferred.
Then began the ordeal of withdrawal from her previous medications of Phenobarbitol, Valium, Tegretol and Tagamet. However, within a short period of time, the mental alertness that Anissa exhibited encouraged us to persevere through the rough times of “addictive” withdrawal symptoms. During a two-week period, she experienced 90 multi-type seizures that could easily have ended her life if left to fend for herself.
For accurate evaluation, the neurologist had also prescribed our purchase of a camcorder to video tape all the types of seizures manifested during a two-month period. Shortly thereafter, the videos were used in helping others to recognize various types of seizures, especially for caregivers who worked with such individuals. This, of course, was before people had access to the Internet — WOW! What a blessing it is!!!
After one month of only Felbatol therapy, Anissa was seizure-free for a consecutive period of 21 days – the first time in seven years to be free for more than one or two days per month. Since Felbatol was experimental, the drug company set regulations that required frequent blood tests and a specific dosage, stronger than was best for Anissa. Her digestive system became very irritated, unable to keep food or medicine down. Seizures returned and on October 4th, the neurologist said to get her immediately to the hospital.
After a five-hour wait in the hospital emergency room, she was given an injection of Reglan (metoclopramide) to counteract her violent upchucking and nausea. A positive side effect of Reglan was that shaking-palsy symptoms of Anissa’s head and upper torso stopped! (Normally, this drug can cause a side effect of tremors and lower the threshold for seizure activity, exactly the opposite of the effect it had on her.) She was then prescribed a very small dose of Reglan which gave her an excellent appetite and due to the cessation of the shaking, Anissa was once again able to feed herself. By the time of her next checkup, she had gained seven pounds within two months. Still, seizures were manifesting daily which required additional therapy.
Shortly after Anissa’s flare-up, Felbatol was approved by the FDA and became available through prescriptions. The neurologist was no longer required to comply with the “experimental drug” restriction and could reduce her dosage. Prior to Thanksgiving, at the onset of a family trip to West Virginia, a new regimen of drug therapy was begun, adding Valium (diazepam) to the Felbatol and Reglan.
“And we know that all things work together for good to them that love God, to them who are the called according to His purpose.”
The medication change caused Anissa to be in a more docile state that enabled some quality time with her grandparents. It had been over two years since we could visit with our family and grandchildren. A rare treat was being able to have Anissa join with us at a restaurant. We enjoyed first hand how things work together for good through the power of His Excellent Grace.
To contact Anissa’s mother email her at email@example.com
To take a virtual tour of the healing center go to http://www.wellspringhealingretreat.org