Living with Guillain-Barre Syndrome

The only thing I had ever heard about Guillain-Barre Syndrome was in the drug commercials that warn against having certain vaccines if you have had GBS. That changed on April 10, 2009 at 3am. That is the day my 3 year old was diagnosed with GBS

Our story actually begins on March 30. He moaned throughout the night and woke up a few times saying he was itchy. The next night he cried that his toes hurt. I attributed his itching to a bug bite he had on the back of his leg. We put lotion on it, and gave him benadryl. Then, when he cried all night April 2 complaining of leg pain, I initially thought he was having growing pains. The next day he refused to walk or sit, wouldn’t even sit on the potty.

We saw his pediatrician on that Friday, April 3. He seemed to fail the reflex test, but she got him to take a few steps, sent us to the hosptial for x-rays and told us to go to the ER on Saturday if any issues. We went to our local ER, and they didn’t do ANYTHING! The doctor there didn’t even touch him and sent us home with a Motrin prescription.

Needless to say, the following day, he was in severe pain and was could not even try to sit. We took him to one of the bigger hospitals downtown, and received a misdiagnosis of Toxic Synovitis. No testing other than an x-ray. We were admitted, but sent home two days later, while he was getting remarkably worse! He was losing strength in his hands.

Then, we finally went to a local children’s hospital downtown. The doctors immediately suspected GBS, but did a bunch of other tests to rule out tumors, and other disorders. The final test, a spinal tap, gave us our diagnosis. His protein levels in his spinal fluid were at 388. I believe the normal high was supposed to be 45.

This is bad enough for an adult, but a 3 year old? It’s like hell on earth! He was admitted to ICU for 3 days, then a step down unit (PCU) for 4 days, and finally the neurology department for one day. We were discharged after 8 days at the children’s hospital. The first day home, he still could not sit up, but he was happier.

He has slowly started to regain his strength, and is now walking, very slowly. He looks like a tiny old man when he walks. He is going to Physical Therapy 3 days a week and Occupational Therapy 2 days a week. I’m so grateful for the progress he’s made, but I really wish we would have had the diagnosis much earlier. He’s not complaining of itching or pain, and that makes a mama VERY happy! His meds have been greatly reduced from what they were in the hospital. He is now only on Neurontin, Diazepam, and Propranolol (he’s had high blood pressure as a result of GBS!) Anyway, that’s our story - long, I know, but that’s it!