Guillain-Barre Syndrome

I wanted to make sure I got a written record of Kalyca's experience with Guillain-Barre Syndrome, but I also wanted to take the time to answer all of the questions everyone has been asking about her condition. This post is my attempt to do that.

What happened?
We had started to notice that Kalyca wasn't walking as well as she once did.  First she started falling down more, then as time went on she would walk only a few steps without holding on to something, and would choose to crawl if she had to travel longer distances.  We took her to her doctor in Orange City expecting a strained muscle, or maybe an inner ear infection.  After watching her walk, her doctor immediately sent us to Sanford Children's Hospital in Sioux Falls. She was expecting that they would do some testing, maybe continuing into the night if she needed to be put under for any of them. We grabbed a few things from home just in case, but were generally unprepared for the reality of what happened when we arrived at the hospital. They checked us into a room and we talked with a resident who did a basic exam, asked a bunch of questions, and watched Kalyca walk a little.  Kaly was generally uncooperative and not happy to be there, but we got through all of the check ups in spite of her screaming. After that nothing happened for a long time. We finally talked to the doctor and the specialist in the early evening.  They scheduled an MRI and a lumbar puncture for the next morning, and started Kalyca fasting at bedtime so that she could be put to sleep for those tests.  The next morning we found out that they couldn't get the anesthesia scheduled, and suggested rescheduling the MRI for the next day.  After we made it pretty clear that we weren't happy with that idea, they finally got her in for the afternoon.  The MRI lasted 2 hours and they put her to sleep for it.  The doctor came in right away and explained that she had Guillain-Barre syndrome and would need an IV-immuno-globulan treatment.  We did the treatment over night, and she slept through the whole thing. In the morning she was not feeling well because the treatment put her immune system into over drive, but in the afternoon we were able to take her to the play room and she played there for almost 2 hours. After this we were able to take her home.

What is Guillain-Barre Syndrome?
The way her doctor explained it, when Kalyca got sick earlier this month, her immune system went into overdrive, as it should, but once she was well again her immune system didn't slow down and instead started attacking her nervous system.  This condition works it's way from the feet up, and often isn't detected until it affects the lungs (it didn't get anywhere close to Kalyca's lungs or any vital organs, praise the Lord!). It is causing weakness and numbness in Kalyca's lower body.

What is the treatment?
Kalyca's treatment started with an IV treatment that flooded her body with antibodies. This re-directed her immune system away from attacking her nerves and spinal cord and reminded it what it was supposed to be doing. This treatment should stop all progression of the disease. She will also go to physical therapy to re-build the muscle development in her lower body.

What is her prognosis?
Kalyca is expected to make a full recovery. To fully regain what she lost to the disease could take weeks to months, however, once she has her movement back, she should not have any continuing issues.

How is Kalyca now?
She is generally back to her old, happy self.  She gets frustrated by not being able to walk well when she is used to running and climbing.  She is learning how to ask for help when she needs a hand to hold to walk across the room, and we are doing our best to be responsive to her needs.  She is not experiencing much pain, but we are giving her Motrin regularly to make sure the pain stays away.  Right now she is VERY happy to be at home with her brothers.

What can we pray for?
Our number one prayer is that Kalyca does in fact have a fast, complete recovery.  We also would like prayers for her patience as she is having more regular doctor visits (which she hates) and is re-learning how to walk.