On December 19, 1991, I was handed one of life’s most precious and delicate treasures, my newborn baby daughter. We named her Amanda Riley Graham she was perfect.
Amanda was two days old when we brought her home and everybody adjusted to our newly expanded family with no problem. She developed a routine quickly. She nursed well and began growing quickly. Amanda was smiling by four weeks and sleeping through the night by two months. She was hitting all the early milestones well within the normal time frame.
When Amanda was five months old, four weeks after her second DPT, we noticed that her left arm would tense and twitch for about 30 seconds to two minutes and then it would go limp for up to an hour after. These spells lasted off and on for about one week. Since we were very concerned about this, we brought Amanda to see our family doctor. We were told not to worry because the problem was most likely caused by her overusing her arm and that the exciter muscles were twitching as they relaxed.
Amanda was given her third DPT shot four weeks later by the same doctor without any hesitation. Our lives have never been the same since.
The next morning, about 15 hours after her third DPT shot, I woke to a strange sound coming over the baby monitor. I rushed into Amanda’s room and found her laying in a fetal position in a general (Grand Mal) seizure. I quickly picked her up and started to run the two blocks to the hospital as my husband was still not home from his midnight shift at work. Luckily, a friend was driving by, picked us up and drove us to the hospital. The seizure lasted 10 minutes after I found her. We have no idea of how long she was in seizure before I went into her room.
The doctor at emergency did a number of blood tests and a chest X-ray. We were then transferred to the Children’s Hospital where Amanda was observed for a couple of hours and sent home. We were told that she had a febrile seizure and that it was probably a one time occurrence. We thought that this opinion was a little strange, since Amanda did not have a fever at the time of the seizure. But we accepted this opinion since, after all, the doctors should know what they are doing. We also thought it was strange when our family doctor, the one who gave Amanda the DPT shot, told us that she was afraid to give anybody else a DPT shot for a week after Amanda’s seizure.
This was not the only seizure Amanda was going to have. We soon found out that it was only the first of many. Her second seizure occurred a couple of months later while we were visiting family in Ontario. It lasted eight minutes and Amanda spent a night in the hospital. After that, the seizures started occurring more frequently. When Amanda was 10 months old, we started her on Phenobarbital. By the time Amanda was 13 months old, we were told that Phenobarbital was not enough to control the seizures and the medicine trials and errors began. Her seizures were now lasting between 30 and 45 minutes each, with the longest being two hours. Their frequency was now one major seizure a week.
We found that every drug had its own pros and cons. Some would make the seizures shorter, each lasting 3-5 minutes, but they would occur more frequently at every three days. Other drugs were hard to control, once making Amanda toxic to the point that she couldn’t even hold her head up. We have also discovered the dulling effects that the drugs have had on Amanda’s abilities. Within 10 days of taking Amanda off of Phenobarbital, just after her 3rd birthday, she sat down and counted from one to ten perfectly — something I had been trying to teach her with no success for the past year.
About one month before Amanda’s first birthday, her neurologist called to give us his diagnosis. He told us that Amanda had progressive myoclonic epilepsy. When I asked him what that meant, he told us that it was just a form of epilepsy. We later did some research and found out the prognosis for this type of epilepsy. Usually the victim was institutionalized by the age of 10 and dead by the age of 20. We questioned him on the accuracy of his diagnosis when, through our own research, we discovered that the characteristics of Amanda’s seizures did not fit the characteristics of the diagnosis. However, he would not change his opinion. During this time, we also noticed that Amanda was blinking frequently and phasing out, but nothing was ever said about that.
Since that time, Amanda has had EEG’s, MRI’s, a CAT scan, lumbar punctures, a muscle biopsy, a conjunctival biopsy, a skin biopsy, a gall bladder ultrasound, evoked potentials, EMG, ERG and numerous blood tests. The results of these tests, a couple of second opinions, and a change in her neurologist have all disagreed with Amanda’s original diagnosis. We have also been told that Amanda’s periods of blinking and phasing out were actually seizures, and at one point, we estimated that she was experiencing over 100 a day.”
To date, we have tried every anticonvulsant available, even experimental drugs, with no avail. Amanda was on the Ketogenic diet with some success, until she refused to eat the high fat foods anymore. We have started Amanda on a more natural, organic diet, Homeopathic treatments and chiropractic therapy. So far, this avenue seems the most promising. She has actually gone one week without experiencing seizures recently.
Amanda has gone through a number of “healing processes” since September, 1995. At the beginning, they were quite severe, once requiring hospitalization. Lately the seizures have become shorter and her recovery time quicker. After a seizure in early 1995, Amanda would be totally lethargic for 9 to 12 hours. Now, after a short, postictal nap, she is up and playing as soon as a half an hour.
As for the doctor’s opinions, they cannot find any reason for Amanda’s condition. A few have said, off the record, that is more than a coincidence that she had been given a DPT shot just prior to the onset of the seizures. Others have flatly refused to admit that the DPT shot has any connection to her seizures.
Since Amanda’s birth, we have had two more children, Alexander in 1993 and Benjamin in 1995. We have done a considerable amount of reading and research into the potential side effects of vaccines. Alexander has had all his shots for up to 18 months old, except for the pertussis vaccine, and will never have another vaccine. Benjamin will never have a vaccine. Both boys are strong and healthy, but Benjamin is by far the biggest and healthiest of all.