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Encephalitis - Finding a doctor to treat
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Encephalitis - Finding a doctor to treat

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My daughter, Brooke, just turned 20 years old on June 23, 2009. She was in college (straight A student) with a goal of being a dentist and was on summer break when symptoms started arising.

From the 23rd-30th, she started with word finding issues, decreased cognitive abilities, and excessive worry. She mentioned having headaches during this times. She felt she was “getting stupid…going crazy…retarded”.

She “passed out” twice on June 30th. She looked as if she wasn’t feeling well, stood up, talked to someone, then she became woozy, held onto a table, went down to a seated position, her eye lids began fluttering, then she fell backwards and hit her head on the floor.

On July 2nd, she was unable to process verbally any longer and we took her to the ER at our local hospital. She kept saying “Stop. Quit.” when anyone was talking. She was admitted for 2 ½ days with what they called “expressive aphasia”. They ran blood work, did MRI's, CT scans, and EEGs. They took her off her birth control (Ocella) and discharged her on July 4th. The neurologist prescribed Trileptal for “possible” seizures in the left temporal lobe. She was unable to verbalize the name of certain objects, but could point out an object when asked. The neurologist suggested a psychiatrist. During the visit to the psychiatrist, she repeated his actions, but did not speak much. The psychiatrist said that her symptoms were not psychiatric and referred us back to the neurologist.

The 4th-9th, we attempted to piece the past month or so together to find out what may have happened. Early in June, we travelled to the Outer Banks of North Carolina for a week-long vacation. The 2nd day there she had a high grade fever which made her “feel fat”, so she took Tylenol Cold, went to sleep, and felt slightly better the next day. My son was ill with a high fever as well at home and recovered quickly. Also, she had symptoms of swimmers ear, cut her foot in the ocean on a shell or something, and was bitten multiple times by sand flies at Ocracoke. During the following weeks, she had been fishing and had ticks on her (no longer than a few minutes and none buried). On the 23rd, she went to an amusement park and that’s when the noticeable symptoms began (verbal problems and frustration). At one point, she said she felt like she took on too much and “tried to grow up too fast”.

By July 9th, she was acting very strange that we took her to the ER again. We realized later that she was severely sleep deprived. The neurological exam was deemed normal and the psychiatric exam was horrendous. The resident that saw her had a foreign accent and was hurling questions from a close distance.  She was admitted to a psychiatric ward.  Thankfully, the psychiatrist was dual trained in Neuro and Psych and after medicating her to sleep for 2 days, he evaluated her with our presence. 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 organic in nature and sent her back to neurology for further evaluation.  She was placed on 1000-1500 mg of Depakote.

They performed MRIs, CT scans, EEGs, blood work, lumbar punctures, CSF analysis… the only thing that showed any real abnormality was a slightly elevated white blood cell count in her CSF (16). The EEG showed generalized slowing. She was only on acyclovir for 5 days (she had 4 very coherent moments during this treatment). After the herpes test was negative, they discontinued the antiviral treatment and she has not been completely lucid since.

They then administered high dose steroids for 5 days (possible autoimmune encephalitis). She was completely irritable and in pain/feverish with increased seizure activity. Her right arm began to spasm and stiffen frequently,  sometimes the muscles would extend completely backwards at her elbow or her fingers, the right side of her face would twitch, and her mouth would open to the extreme, her right leg would stiffen and toes would curl under very tightly. The spasms seemed to be rhythmic.

She got worse while in the hospital. She was not sleeping well (hypersensitive), was sleepwalking, could no longer speak, couldn’t care for herself at all. It was like her brain could not control her muscles. She was also experiencing major seizure activity ranging from focal seizures to tonic-clonic. These seizures would sometimes last hours on end. She was either in a dream-like sleepwalking state, staring, or actually seizing about 90 % of the day.

The doctors were so hell-bent that they believed my daughter to be bipolar that they just kept her on anti-psychotics and anti-anxiety meds. They tried using Ativan and Klonopin to help her sleep, but she still couldn’t sleep through the night. They refused to treat seizures (they did not see them on the more recent EEG’s) or the muscle spasms (which they called a movement disorder). 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.

They discharged her on Aug 2nd with a written diagnosis of viral encephalitis (unknown virus) and (strangely enough) seizures. They wanted to send her to a rehab facility, but instead we brought her home (familiar settings to help the recovery process). I began treating her with the Trileptal (anticonvulsant) and weaned her off the anti-anxiety med's (now Ativan given PRN).

She is progressing. She is speaking more, can walk (although sometimes shaky), can feed herself, brush her own teeth…but nothing consistently. She is also still very confused at times and has amnesia throughout the day. Some days she doesn’t eat or drink much and she is now sleeping long periods of time and more frequently. Sometimes she wakes and is coherent and sometimes she has amnesia and cannot talk or eat. I don't know whether she is having seizures any longer, but she is not having the intense muscle spasms any longer. She does still experience poor muscle control and messes with her nose alot (has throughout the illness).

We currently have home health nurses and physical and occupational therapy come into the house 2-3 times a week. She is still very inconsistent in her symptoms.

Should we seek more evaluation, treatment, or testing? The neurologists and the family physician are now passing her off to psychiatry only. Is there a physician out there that would look further at where the damage occurred, why, and what can be done to help her recover? Thanks for your answers in advance.
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