All about Guillain-Barré syndrome: A 12-year old with suspected Miller-Fisher syndrome

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