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On April 1, 1991, my daughter Carly was stricken with what was most likely chicken pox encephalitis --
though her official diagnosis was simply "post varicella encephalopathy."
Carly was recovering from what seemed to be a very mild case of chicken pox. She did not appear ill in
any way...but one day, approximately a week after she came down with chicken pox, when her pox were all
scabbed over and healing, she became unusually placid and lethargic and displayed poor muscle tone.
She was unusually cooperative for a toddler. She seemed reluctant and fearful at the playground (which
was very unusual) and her muscle tone seemed poor, and she did not want to eat anything, not even her
favorite foods. That evening, while being read to by her grandfather, she suddenly went limp and
unconscious and had a "generalized tonic seizure." This seizure lasted about 15-20 minutes, and did not
resolve until several minutes after the paramedics arrived. Her extremities were cyanotic. Her
grandparents, not knowing what else to do, performed rescue breathing and made sure she had a
heart beat while they waited for help to arrive.
When Carly arrived at the hospital, she appeared fine. The post-seizure state she had been in on the ride
to the hospital was mostly over, though it was noted her eyes still did not focus. She had no fever and no
other signs of illness (no enlarged lymph nodes, no signs of infection, etc.) The emergency room
performed a CT scan which was negative, so there didn't appear to be an anatomic cause for the seizure.
The doctors planned to run some tests to rule out possible metabolic causes for the seizure, and planned
to do an EEG in the morning. Carly was awake and alert, and she slept through the night at the hospital.
The next morning at 6:20 a.m., Carly was on my lap and we were watching TV. I was thinking the night
before had been just a nightmare when she suddenly Carly began to have a bilateral, tonic-clonic "grand
mal" seizure with mild cyanosis. This seizure lasted 15 minutes and had to be stopped with first one, and
then another dose of valium. The second dose made her breathing shallow and her oxygen levels plumet.
The doctors prepared to intubate her, but her oxygen levels came back to normal within seconds.
Carly remained unconscious following the seizure for somewhere between 16-24 hours. While in this
sleeping state, she had an EEG, which was normal. She also had a spinal tap, to rule of varicella
encephalitis. Her spinal tap produced clear fluid and showed elevated protein but nothing else (no virus).
Carly's tongue was protruding from her mouth at this point, a sign the doctor told me was due to brain
swelling. The doctors said there was nothing they could do for her but wait and see.
Miraculously, by 9:00 AM the following morning, Carly was wide awake, smiling, talking, and raring to go!!!
As if to make up for the lost day, she ate four small bowls of cereal and raced merrily about the
pediatrics ward. I was SO happy to have my child back, seemingly completely recovered. The last notes in
her chart read "no deficits, walks & runs well, no evidence of ....." (I can't read the last few words).
In the evening, a pediatric neurologist examined Carly and approved her release. (It is interesting to read
in her charts and be reminded that at 21 months, Carly was "talking in sentences, using pronouns!" The
exclamation point was the doctor's).
Carly was put on a one-month, cautionary dose of Dilantin to ward off any possible future seizures, and
sent home with basically a clean bill of health and instructions to get a waking EEG from a local neurology
center sometime during the month.
We never got the waking EEG -- when we went to the neurology center, Carly was too uncooperative to
have the EEG done. Carly was given a liquid sedative, and instead of becoming sedated, she became
very agitated and violent. The doctor wanted to give her another sedative, but since she had not tolerated
the first well (and I was afraid of any dangerous effects, especially when we were not in a hospital setting)
and since the purpose of this visit was to get a waking EEG in the first place, I took Carly and left the
office without having the EEG done. When Carly's Dilantin prescription ran out after a month, we basically
resumed life as it was -- normal.
I was not told that Carly's illness, though she appeared recovered, might have in fact damaged her brain in
some yet unforseen way. Indeed, we didn't really notice that anything was amiss until she reached grade
school.
Carly loved preschool. She learned her letters and numbers. She could draw and write letters and her
name. She was an eager learner and never a moments trouble in the classroom.
The only thing I ever noticed being different about Carly in these early years was that she absolutely,
positively could not tolerate being tired. If she stayed up after bed time for even a few moments, it was as
if her brain had simply gone to sleep and she could not function. She couldn't think. She was incredibly
grouchy. We could never go anywhere with her in the evening. She just had zero coping mechanisms for
this extreme tiredness she felt each night. I remember going to the beach with her when she was almost
three, and she stayed up too late and just began crying and crying like a colicky baby that couldn't be
consoled. The only way I eventually got her to stop crying and calm down and go to sleep was by taking
her outside to the beach in the dark to listen to the sound of the ocean. Despite being tired, Carly typically
took around an hour to fall asleep each night. She typically slept 12 hours a night.
That was about all that seemed unusual.
Then, starting in kindergarten, when the pace of learning stepped up and Carly began to apply some of
this preliminary knowledge (letters and numbers), everything began to go wrong. Though she seemed
bright, and was certainly eager to learn, Carly just really began to fall behind.
As an early elementary student, Carly struggled to learn to read. She occassionally made mistakes with
letter reversals. Sometimes she started reading from right to left or in the middle of a sentence. I noticed
that if given a bunch of mirror image letters side-by-side (such as b and d), she could only guess which
was which, though if she saw these letters as part of a word, she was usually pretty good. Carly seemed
to have significant visual tracking problems. She couldn't copy from one page to another or from the chalk
board to the paper on her desk. Any near work (reading, math, typing on the computer) caused her to
rub her eyes and squint and blink. She seemed truly uncomfortable. She once told us that the reason she
mixed up letters and words and sentences when reading was that her "eyes got all jiggly." Carly had
trouble with math too. Learning to tell time and count change were very hard. She could count by 5's for
example, but if you told her to count by 5's to 45, she would continue counting beyong 45 -- she had great
difficulty doing two things at once, and this continued over the years. She couldn't remember to chew a
piece of chocolate she had in her mouth if she was also bouncing a basketball at the same time. The
chocolate would just sit in there! She couldn't (and still can't) write AND spell AND punctuate at the same
time. She can do each of these -- but no two together with much success.
During this time (first and second grade), my sweet, easy-going Carly became moody and easily frustrated.
She was usually anxious, irritated, and/or depressed.
When she was in third grade, Carly's teacher suggested that we have her tested for a learning disability.
We had a full neuropsychological profile done. When it was finished, we were told that she had a verbal IQ
of 121 but a performance IQ of 106. "Her cognitive tempo, work pace, and packaging skills during critical
thinking were sluggish." She also had a "rather quick onset of mental fatigue." The neuropsychologis'ts
final diagnosis? "Carly is a third grader of superior cognitive potential who is struggling with a moderate
attention disorder that is characterized by predominately inattentive features." Though we mentioned
Carly's medical history and seizures to the doctor who did her testing, he did not make a link between that
and her troubles in school. He told us Carly needed a stimulant medication (such as Ritalin).
Following the neuropsychologist's instructions, we met with Carly's pediatrician and had her started on 5
mg Ritalin (morning and noon). This medication made her extremely angry and depressed. She really
acted out! This medication was discontinued after a few days.
Shortly thereafter, making note of Carly's negative mood, anxiety, and grouchiness, and thinking she might
actually be depressed, we consulted with Carly's pediatrician, who started her on 10mg Prozac. This
medication did wonders for her mood and attitude and overall ability to cope! This medication also nearly
eliminated the severe headaches Carly had been having since first grade.
A little more than a year later, when she was in fifth grade, Carly's pediatrician added a small dose of the
stimulant medication Adderall to Carly's regular daily dose of Prozac. We noticed a subtle difference over
time in her attention, organization, etc. Everything was just a notch better, and she did not seem to have
any negative side effects from this combination. The pediatrician wanted to move her dose up, but at a
higher dose, Carly got sleepy. At the end of a year, not really seeing much change in school performance
from the previous year, the Adderall was discontinued.
At the beginning of sixth grade, the new medication Concerta became available, and her pediatrician
started her on this (in combination with the Prozac). This made a significant improvement in Carly's
concentration and organization, but it also turned her into a "zombie." She was very quiet and withdrawn
and focused very narrowly on things. She didn't smile, lacked personality, and basically withdrew from
everything social (which was completely unlike her).
Most recently, we have consulted with a child psychiatrist who has put Carly on Wellbutrin (in combination
with the Prozac and Concerta -- though she is anticipating phasing out the Concerta). This doctor thinks
Carly has a classic case of inattentive type ADHD, and thinks Wellbutrin might help her.
These are the things we see with Carly:
- She has difficulty doing more than one thing at a time (ie. writing AND spelling, eating a piece of chocolate AND bouncing a basketball, etc.)
- She is very disorganized, loses things, forgets things, everything is messy, and she has no strategies for finding anything (including things that really matter to HER)
- She forgets to turn in assignments, forgets to bring home what she needs (even if directly asked if she has something).
- She is very slow with school work (3 hours for something that should take 45 minutes according to her teachers)
- She is quick to fatigue ("meltdown" with a lot of sit down, written work). This is one of the two major problems.
- She has "brain on" and "brain off" days. Sometimes Carly is alert, inquisitive, appearing obviously intelligent and capable --- and sometimes she has a terrible time doing her school work, she can't remember things she already knows, and she seems incapable of learning knew things. Her knowledge seems to appear and disappear. Concepts she knows one day can be gone the next - and back again later with no re-teaching or intervention. Likewise, it can appear during a teaching session that she is "brain off" and not processing anything, and she will be frustrated and lack understanding…and the next day, she will mysteriously remember and understand what was taught. with constant support and monitoring (checking her assignments and book bag before she leaves school.
- This is the other major problem. Carly has problems with word retrieval (always searching for the word she wants to use)
- Carly is a slow reader, which really impacts school work a lot (at the end of 5th grade, she tested at a 4.8 grade level, and while she can read, she is painfully slow and halting, skips lines and words, etc.)
- In sports, Carly is very talented, but performs miserably -- she has the coordination and ability, but can't think as fast as the game. She shoots baskets for the wrong team and has trouble keeping pace with the action mentally - ie. switching from offense to defense, she gets confused.
- Carly is intelligent and capable of high academic achievement - but only, reading to her and studying with her, etc.). Without support, her grades are below failing. With support, her grades can be A's.
- Despite nagging, reminding, and threats, Carly absolutely cannot keep her room or book bag in a sanitary condition -- never mind being organized!
- Things like check lists don't help. She checks things off she hasn't done and she does not do things completely or properly when she does do them. Managing her is very frustrating.
I worry about:
- all the drugs my daughter is on (do they even help?)
- the fact that she goes to school day after day without success (I can't imagine anything more harmful).
- the fact that she is now at an age where she is very self aware -- and she is starting to hate herself and call herself stupid.
- the fact that I love this kid to death - she is a great person -- but the closeness and fun we once had is overshadowed now because I must constantly be her personal manager (at a time when she should be more and more independent, she is actually becomming more and more dependent simply because the demands and expecations of home and school have increased as she has aged).
I have always questioned whether my daughter has ADHD -- or something else. The more I have learned about inattentive ADHD, the more I can see that that fits Carly's description. But the main things she has a real problem with -- having severe mental fatigue and slow processing -- just don't fit, so far as I know.
I was astounded when I came across the Encephalitis Survivors Support Group and began reading about encephalitis survivors and reading people's personal stories. From what I have read THIS IS CARLY!!!
Carly has an 08 (health impaired) Special Education Code from our local public school system on account of her history of having had two long seizures as a toddler. But reading about encephalitis, I think her ARD/IEP team may have in fact got it wrong! Carly may be ADHD (either before or because of her "encephalopathy") but more importantly, I think Carly may in fact be brain damaged -- but not from the seizures -- from what was probably a viral encephalitis.
Reading about Encephalitis Survivors and the kind of damage to the brain this can do has made me very grateful that my daughter survived, mostly intact. I am so much more grateful for the abilities she does have, than worried over the ones she doesn't. Thanks to this group, I am much more accepting and understanding of Carly's abilities, and disabilities.
I can't wait to talk to her teachers and begin working out a new approach to help Carly find success in school -- and in life.
Libby
Maryland, U.S.A.
Posted: February 21, 2001
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