Here is a synopsis of my daughter's condition/symptoms
(03/2003):
* "Viral" infection starting in January 2003
* Sore throat, low grade fever, general weakness, stomach
cramps, joint pain, coughing
* Given three different antibiotics before the Dr. did a
blood test and decided it was viral
* Back to school after missing three weeks, still very weak
(legs especially)
* During this period I noticed that her eyes were dilated
all the time. They would only constrict if I shone light
directly in them.
* Feb. 9th skin began to "sting", weakness in
legs still present, shortness of breath
* Feb 12th we were bumped by another car on the way home,
my daughter began to hyperventilate. We could not get her
to slow her breathing. She became too weak to walk, ambulance
called, admitted to our local hospital. Dr's said it was
a panic attack and began to administer Atavan.
* Feb 13th the Dr began Paxil and her breathing worsened.
* Feb 14th, we were discharged after taking another Paxil
(25mg)
That evening she went into another rapid breathing episode
and began tremoring with her eyes rolling up. I took her
back to the local hospital where they began the Atavan again.
* Feb 15th they gave her both Paxil and Xanax. The "seizures"
became worse and she had tremors all day long. During the
episodes Nat would cry and state that she couldn't see me
and she couldn't get her eyes back down. (Just prior to
the episodes she would say "my eyes feel funny"
and her hands and legs would tingle).
That evening, she had a "seizure" that lasted
over an hour. When she came out of it her weakness was much
more pronounced. Her head lagged when I tried to set her
up, she said her legs wouldn't do what she wanted them to
do, her feet looked as if she had foot drop, and her hands
almost looked as if she had contractures.
* Feb 16th I requested they stop the meds, because they
seemed to be making things worse. She had only one seizure
that evening and none the next day.
* She began to complain that she could not chew her food
and swallowing was difficult. She said her tongue felt "thick"
and her mouth and throat were (and still are) sensitive
to anything with any spice at all. Excessive saliva was
a real problem for her.
* She also began to complain of tingling in her hands and
feet as well as all of her skin still stinging.
* She had difficulty holding her fork to eat, and walking
was slow and painful.
* She was discharged on Feb. 19th and we were sent to an
inpatient Psych. unit with her. They would not admit her
and said she really needed to go home and heal (which I
agreed with completely).
* Since that time, she has begun to get more control of
her hands and arms. Chewing is somewhat easier.
* She still has a lot of pain (skin hurts, tingling). Her
knee joints are very stiff and painful.
* Her lymph nodes behind ears and back of head are still
swollen, as well as having sores on her head.
* We went to a new pediatrician who referred us to a Pediatric
Neurologist. Unfortunately, his specialty is ADD and bedwetting.
He spent about 15 minutes with us (her crying because she
hurt so badly) and decided she was depressed and had no
nerve damage.
* Last night after a long warm bath, her legs tremored severely
for over an hour.
April 2003
Natalie does not have an official diagnosis yet, and may
never have one. I am weary from struggling to get a diagnosis.
At this point, all it would serve is my ego, needing to
be right. She has ridden out the worst of the storm hanging
on to a bottle of Motrin, my arm, and the prayers of many.
It is now April and Nat has begun Physical Therapy. She
just started walking on her own yesterday! Very wobbly…
but on her own.
The pain has decreased to evenings for the most part. She
is able to chew better now and has not had the excessive
saliva in several weeks. Her breathing has returned to normal
and she only has tremors after she has been up and walking
a lot during the day.
Her eyes have returned to normal, but she still says things
look "fuzzy" at times.
Her mood has been very good this last week. She has been
a tough young lady and I am very proud of her!
May 2003
Natalie is progressing slowly. She made a huge jump in strength
and morale when she started her physical therapy, and then
my Dad developed some serious health problems. She has been
very close with my folks since she was little, and she has
taken the prospect of losing Grandpa poorly. She would not
leave the hospital when all of his heart testing was going
on, and I think she just wore herself out.
Her PT went horribly that week, but has gotten better since.
She is able to walk short distances alone, but is very resistant
to do so. I'm not sure how to break through that resistance.
She has always been someone who wants to do things perfectly,
and she does not flow gracefully right now. I keep telling
her she will, but she has to try in order to get there.
Her mood is low some of the time and she has been extremely
irritable as of late. I keep having to tell myself, "this
is a 12 year child who has been through Hell the last four
months... give her a break".
Natalie has been spending the week days with my parents
about 90 miles from us. She has been home every weekend
and actually got to spend some extra time at home this week.
It was so wonderful having her back home. I think a large
part of her sour mood has been the fact that she has been
away from friends, us, and her dog. She was in a much better
mood this week. I will have 6 weeks off this summer, so
she will be able to stay home and hopefully prepare herself
to go back to public school in the Fall. That is her goal,
and ours as well.
Her knees are somewhat swollen and often ache in the evenings.
She tells me when she tries to walk un-aided, her knees
buckle under her. When we are out in public she tries very
hard not to hang on to me as much. She often hangs her jacket
over the hand I am holding.
I am going to try to get her in a pool this Summer. She
has been a wonderful swimmer and says she is willing to
get back in the water.
The emotions of the last four months fall into 3 categories
- fear ("What the hell is going on?"), frustration
("If I could walk for you I would."), and appreciation
("We have so many things to be thankful for.")
Bobbie Pennington
US
