Encephalitis Cases
Brooke
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My daughter, Brooke, just turned 20 years old on June 23, 2009. Around
this time, she started with word finding issues and decreased cognitive
abilities. She was in college (straight A student) with a goal of
being a dentist. She started excessively worrying about unusual things
like how she was going to be able to pay for her dental equipment
in 6-8 years, shredding her credit cards so no one would steal her
money, guarded with strangers, worried about being in an accident
just riding in the car for a short distance… I remember her saying
at the beginning of all this that she felt she was “getting stupid…crazy…retarded”.
On July 2nd I took her to our local hospital because she was not able to process
verbally any longer. She was admitted for 2 ½ days with what they
called “expressive aphasia”. They ran blood work, did MRI's, CT scans,
and EEGs. The neurologist prescribed Trileptal because he saw what
might be seizures on the 24-hour EEG (not videotaped) and suggested
we talk to a psychiatrist. The psychiatrist said that her symptoms
were not psychiatric and referred us back to the neurologist.
By July 9 her behavior was strange enough (rubbing her hands together, spinning
in circles, pacing, pounding on windows…) that I took her directly
to Pittsburgh (AGH) emergency room (even though I did not want to
put her through the stress of yet another ER visit). She lost control
of her bodily functions (urinating herself, weak legs…) while waiting
to be placed in an ER room. (We realized later that she was severely
sleep deprived.) The neurological exam (consisted of someone having
her squeeze their hands and touching her legs and feet) was deemed
normal. At one point my daughter swung her hand at the resident (as
if to tell her to move back) and spoke in gibberish to her. She also
told the resident that she was spitting on her. We were concerned
at this point (based solely on the symptoms) that she was experiencing
“Brief Psychotic Disorder” and the psychiatrist admitted her to the
psych ward in Sewickley.
Thankfully, the psychiatrist there was dual trained in Neuro and Psych and after
medicating her to sleep for 2 days, he evaluated her with our presence.
He asked us to communicate with her. She would only answer short phrased
questions with one-word answers and she could not complete the word
correctly. The psychiatrist determined that this was definitely organic
in nature and sent her back to AGH for evaluation. They placed her
on 1000-1500 mg of Depakote (seizure/anti-psychotic drug).
They did MRIs, CT scans, EEGs, blood work, lumbar punctures, CSF analysis… the
only thing that showed any real abnormality at this point was a slightly
elevated white blood cell count in her CSF (16). At this point they
were only seeing generalized slowing of the brain. She had 4 very
coherent moments at the beginning of her stay when they were treating
her with the anti-viral (acyclovir by IV for 5 days), but this never
happened again. They put her on high dose steroids incase it was an
autoimmune reaction. This was the hardest 5 days of her stay. She
was completely irritable and in pain/feverish with increased seizure
activity during this time. She had major problems with her right arm
and right side of her face. They would spasm often, including her
mouth opening to the extreme. She was having seizures most of the
day (she was having tonic-clonic and focal seizures) and sleepwalking
in her “non-seizure” moments. The doctors would not put her on another
anticonvulsant when I started refusing the Depakote (which was making
her pull her IV’s out…). I learned that the doctors had misunderstood
her history that she “watched” a friend die just before her symptoms
arose (which was not the case at all) and this was why they were so
stuck on a bipolar/psychiatric disorder. I was so disgusted by this
point.
I asked that they transfer her to John’s Hopkins for further evaluation, but was
blind sided because the only discussion were doctor to doctor and I found
out later that they were only talking to a psychiatrist at JH which never
accepted her as a patient.
They discharged her on Aug 2 with a written diagnosis of viral encephalitis (unknown virus) and strangely enough seizures. I would not let them put her in a rehab facility, but instead brought her home. I began treating her with the Trileptal (anticonvulsant) and weaned her off the anti-anxiety med's (which were seemingly causing her to be more anxious).
We are still attempting to get her further evaluated by either Cleveland Clinic
or John’s Hopkins. I am at a loss right now. I am discouraged and
losing faith that my daughter will ever recover from this. I’m scared.
The hardest part is the inconsistency and uncertainty. Plus I hate
not knowing what she is going through. She must be scared to death.
Today she woke up and wobbled her way to me and just fell into my
arms, hugged me, and whimpered. I just want my baby to get better
whatever it takes.
Any advice or ideas from survivors and family are welcome. I greatly appreciate the insight and support offered by this site and the other encephalitis support sites.
My advice to anyone reading: Stay strong, keep pushing, take it day by day, roll with the punches, keep a positive attitude, find a doctor that is willing to take an interest in what you say, and most of all do not hesitate to ask for help when you need it.
UPDATE: August 1, 2010 After bringing Brooke home, our family physician (upon my suggestion) placed her on a 10-day regiment of anti-viral medication. Even though there were no signs of a virus in her blood work, it had seemed to help her in the beginning at the hospital. When she started them, it was like a complete turnaround for her. She started knowing what her laptop and cell phone were, she could begin using the mouse again, she would talk, eat, dress herself. I also started seeing more emotions (sometimes anger). After finishing the 10-day regiment, she started to fall back into a “flat” emotional state. We decided to continue the anti-viral for another 20 days. Because of the quick recovery on the anti-viral, she was able to go through therapy services (physical, occupational, and speech). She steadily recovered and is back in college and working now. Although a cause for Brooke’s encephalitis was never diagnosed, I believe from extensive research that it was autoimmune in nature (Anti-NMDA). Her MRIs were clean. The white blood count in her CSF was low. No signs of virus or other autoimmune anti-bodies were found. The neuro-oncologist at AGH called two months after her hospital release to run blood work for the Anti-NMDA antibodies, but Brooke was still not thinking clearly and refused. I asked our family physician if he believed the anti-viral could have really helped her if the encephalitis was autoimmune in nature (Anti-NMDA). There is no way to know for sure. Maybe the anti-viral changed the biology of the anti-bodies or just convinced the body that there was nothing to fight causing the autoimmune response (and anti-body production) to slow/stop. Her recovery was like “growing up” again. It seemed she went from being a newborn (not able to feed or dress herself or talk…) to a toddler (throwing fits, bouncing when she danced with me…) to a young child (beginning to read, comprehend, and write again…) to a young teenager (looking for herself, her independence, finding out who she is, what she likes, hating her parents, untrusting, confused…) to an older teenager (still immature and uncertain internally, but outwardly showing strong rebellion and pulling away from family …) to now (a normal 21-year old). I remember being excited as well as hesitant when Brooke wanted to go back to college (3 ½ hours away) in January 2010. She wanted her independence. But I was fearful that she would be easily manipulated and get hurt. I was afraid that she didn’t really trust her own thoughts and feelings, let alone those of responsible adults. I believe that her determination to “move on” has helped her recovery. She has recovered better than I could have ever imagined. She is back to college full-time. She works as a Resident Assistant, coordinates her own financial aid, argues with vendors that have poor customer service… She is a normal 21 year old experiencing and learning about life independently with the comprehension that there is a support system backup when needed. My daughter survived this invisible attacker: Encephalitis. It is so wonderful to have her back. I am truly blessed and more thankful than words can express. My thoughts are with those that are fighting the battle. My advice to anyone reading: Stay strong, keep pushing, take it day by day, roll with the punches, keep a positive attitude, find a doctor that is willing to take an interest in what you say, and most of all do not hesitate to ask for help when you need it. Janet Ohio, U.S.A.  Posted: August 18, 2009 |
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