Encephalitis Cases
Raegan
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Raegan was born a healthy full term twin. She has a twin brother who
was born healthy also and is healthy to this day. At 13mths old she
was fighting a stomach bug (or so I thought) for a few days. On Sunday
night I was holding her and she started having a seizure she was rushed
to the ER and flown to a hospital 2 hrs away.
There she was tested and we were told she had encephalitis (no particular
type). She was in ICU for 4 days then about a week after we brought
her home she was back to her 'normal' self and developing right along
side her brother. We asked the Dr's. what the odds were of her ever
getting encephalitis again were. Their response was, "none." (I will
explain later why we even asked this) Then 2 yrs later we all had
the flu, Raegan was last to get it. She really never had fever or
anything just not feeling well and late that night she walked up to
me wanting me to hold her and her eyes just went blank and not responsive.
We rushed her to ER and on the way Reagan started having seizures.
She spent 4 days in a local hospital sleeping, she would wake just
enough to answer yes and no questions. They didn't have her on any
kind of nutrition and she lost a bunch of weight (2 1/2 yrs and weighed
18 lbs). The local pedi neurologist refused to see or even consult
on her, so she was taken back to the hospital 2 hrs away. There we
were told she had encephalitis (still no particular type). Reagan
spent 5 days in ICU.
On the 3rd day she surprised the nurse when the phone rang, which
was beside her bed, she said "Telephone" and just smiled at her. She
had trouble sitting and walking, she could walk as long as she was
holding your hands. We brought her home and it took her about 3 weeks
and she was running and playing right along side her brother again.
She kept up in growth, development and learning with all kids her
age for the next 5 years.
Then in Feb. 2007. Reagan was again not feeling well, no fever, just
playing as usual. Late on a Tuesday night she started feeling real
bad but went to bed and slept fine. Wednesday morning I woke her up
to see how she felt. She woke up and was talking and saying she was
just really tired. I got her up and she walked to the bathroom and
she wouldn't open her eyes, I kept telling her she need to open her
eyes. She said "Mama, I can't" and she reached up and opened her eyes
with her fingers.
We rushed Raegan to the ER, which
is 35 minutes away. In that time Raegan went from walking and talking
to not talking or walking, she was just barely wiggling her toes
when asked questions. She was sedated and flown again to a hospital
2 hrs away. There she spent the next 3 1/2 months in a coma. Raegan
was diagnosed again with encephalitis, with severe swelling. This
time they said she had Influenza A Encephalitis, or ANE.
From there she went to a rehab hospital, it's there that she actually came out of the coma. Her dad was talking to her asking her questions as he always did and this time she answered by nodding yes and no, and following directions like pulling her knees up and putting them down. What an amazing day that was!! Anyway, she is home now and doing well. She is able to sit on her own and walk with lots of assistance. She has had lots of gains and some setbacks. She still does not talk, she is fed through a tube. But with her being able to answer yes and no's ,some days, we have found she remembers most everything from before she got sick. She remembers all her friends from school, she remembers how to read and write (that one is hard) but she can do it. Its a struggle everyday, but her drive and attitude and her willingness to just try everyday is inspiring and amazing. My little hero. Now, why we asked what the odds were if she would ever get encephalitis again. Raegan's dad's sister had encephalitis at age 2 and was recovering pretty quickly. Then at age 7, she had it again and passed away (30 yrs ago). Plus his grandmother had a sister who had the same symptoms as Raegan and what they described his sister having, however it was in the '20's. Raegan is being included in a research out of Cincinnati, studying if being susceptible to encephalitis is genetic. With Raegan's family history, I believe there might be something to it. Thanks for "listening" to a small part of our story. Lana, aka, Raegan's Mom. :o)Texas, USA  Posted: March 30, 2010 |
