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This is my 34-year-old husband, Todd's story. Todd first became ill with flu like symptoms in September of 1999. He had been under a tremendous amount of stress and contributed the flu like symptoms to that. He did spend a week in the hospital in October of 1999 because he was retaining fluid and was not urinating; it was thought at the time that his problems were due to his Crohns Disease. As a side bar, my husband has had Crohns Disease for 11 years. Todd was put on large doses of steroids and seemed to get better, was weaned off the steroids in November of 1999. He was out of work about 5 weeks. Looking back now, we believe that was the beginning of our nightmare.
In December of 1999, Todd started slurring his words. I thought I was losing my hearing, but now we know he was slurring his words when speaking. On January 13, 2000, Todd awoke to get ready for work and was unable to get out of bed due to extreme dizziness. Todd did not go to work that day, he is a letter carrier, and later in the day fell down the steps. Our PCP put him on Antivert and told him it was Vertigo. Things seemed to worsen. He was home for two weeks, in that time we saw our first of many neurologists. Todd had a MRI, EEG, & Brain Stem test, all of which supposedly came back normal.
Todd returned to work on February 1. We saw another Neurologist in February at Johns Hopkins. This neurologist told us it was anxiety & depression and prescribed Paxil. Being the lay people that we are, we got the prescription filled and hoped for the best. The Paxil made things worse. Todd would fall asleep at the drop of a hat and had no interest in anything, including our two-year-old daughter Annalise, who is the apple of his eye.
Things went down hill fast. Todd was having numerous symptoms. Here is a list of some
of his symptoms: problems walking (shuffled his feet); had trouble walking down stairs;
tremors in limbs; a constant headache to where it hurt to move his head; his memory was
fading, the simplest tasks were hard to accomplish, such as using the phone, punching in
& out at work, and using the ATM machine; extreme fatigue; vomiting; paranoia; agitation;
aggression; & a 20lb weight loss. Todd also had problems concentrating, he could not read
or write very well.
On March 21, Todd had what we now know was his first seizure. I called 911 when he was
lying on the bathroom floor and did not know where he was and shaking uncontrollably. I
was absolutely terrified. Off to the ER we went. Todd was admitted and spent 4 days in
the hospital. The neurology group on call was assigned to his case. They did MRI, CT Scan,
Spinal Tap, EEG and massive blood work. They told us everything was normal and did not
know what was wrong. They did tell us that they were checking for CJD & Huntington Disease,
both of which are degenerative brain diseases that the eventual outcome is death. They
also tested for Lyme Disease, Aids, Syphilis, among other things.
While in the hospital, Todd lost a whole day in time. He does not remember anything of
Monday. Todd was very agitated and aggressive, which is not like him at all. He was trying
to take apart his IV Pole and did manage to take his IV out and cut himself. The doctors
discharged Todd the day after his 34th birthday. At this point my father in law came to
live with us, so someone would always be home with Todd and I could concentrate on working
and taking care of our daughter. This had to be the darkest time in our lives. This man
was not the person I knew and loved and I was truly terrified that he would never be the
same. We went through many more months of doctors and tests, with still no results. At this point
his leave had run out, and disability was not available. Fortunately Todd's co-workers were
kind enough to donate a total of 8 weeks of leave to him.
In May, Todd woke up one day and realized his headache had gotten better. He started having
good days, but the bad days were still around. Todd had a seizure on May 12th when no one
was home. I found him wandering the neighborhood and he did not know where he was or who
he was. Back to the ER we went. The neurologist (the same one from March) had an EEG done
on him in the ER and said that it showed generalized slowing. She indicated that he had
developed a seizure disorder. He was admitted for observation and was put on 800MG of
Carbatrol . Todd came home on May 13th, our daughters 2nd birthday. He was pretty much
out of it. We now know that the Carbatrol was intoxicating him. On Monday they did a
blood level test and realized that the dose of Carbatrol was entirely too high. The dosage
was bumped down to 600MG, but Todd was still having problems on that dosage. It was decided
at the end of May that he should be weaned off the Carbatrol until they figured out why
the seizures were happening.
I had a very hard time believing that my husband just developed a seizure disorder all of
the sudden and I kept pushing forward trying to find a doctor who could help. Meanwhile,
Todd continued to improve, without any medication.
Molly is our neighbor in the new neighborhood where we had moved to in September of 1999. At a community picnic I was speaking with Molly about what had
been going on, she said that she worked for a neurologist who was very good and would we mind if she talked to him about our case. We jumped at the
chance. The new neurologist was not taking new patients, but agreed to see us. Our first visit was July 14th. The new neurologist came up with a game
plan. He admitted Todd into the hospital on 7/27. Todd had been hooked up to a mobile EEG monitor on 7/26, this monitor was left on until the morning
of 7/28. A spinal tap was then done on 7/28. What we found out was that Todd's white cell count in March was borderline abnormal at a level 8, the
previous doctor had told us that was fine, but in July his white cell count had gone down to a level 3.
The neurologist felt, based on the comparing the current test results to what was going
on in March, that Todd at this point was beginning to recover from Viral Encephalitis
and he anticipated a full recovery. This was the most wonderful news we had received in
months.
The EEG was still somewhat abnormal showing some seizure activity. Todd was put on 300MG
of Dilantin as a precaution. He will need to be on this medication for 3 to 6 months. The
neurologist would not release Todd to go back to work until he had neuro cognitive testing
done and the EEG repeated. The neurologist said he hoped Todd would be able to go back to
work in a month or two. Todd had the cognitive testing done in August and passed with flying
colors. The EEG was repeated the beginning of September, and had come down to within normal
ranges. Todd went back to work on September 11, 2000. Todd was out of work for a total of 6
months.
Todd seems to be doing very well, although he does not remember much of the first part
of this year. He notices that if he is tired after a long day at work or nervous, that
he may have some twitching in his arms and legs. We have accepted that this may be
something he has to live with for the rest of his life, but considering where he was
back in the beginning of the year, we are very lucky.
You will notice that through out this story, I use "we" and "us" quite frequently,
because this did not just effect Todd, it effected our whole family. We are very
thankful for all of the support we had from friends and especially our families.
For people that are still suffering from the effects of Encephalitis, please do not
give up. We never stopped hoping. We were very disappointed in the medical community,
but believed that at some point we would find a doctor who was knowledgeable and cared
enough to help us, and we thank God that we did find that person.
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Diane
Maryland, U.S.A.
Posted: October 4, 2000 |
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