Joel, 3 years old, first 72 hours…
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March 31, 2015 at 1:25 pm
Joel went to bed Friday night crying because he wanted to keep playing. It was late so we didn’t let him. Saturday morning he woke up without being able to walk. He is three years old, and play a lot with us, it wouldn’t be the first time he tried to trick us into one of his games. He was smiling and playing with his younger brother, crawling all over his room. Once we noticed he wasn’t playing we went to the closest urgent care provider the same morning, which without even doing any test sent us to the Phoenix children hospital. A MRI and lumbar puncture later he was diagnosed with GBS. He has been treated with ivig the last two days. I’ve been reading and it gets worse. At this poing he only lost his strenght from his knees down. He is able to barely move his feet and toes, doctors say that is good. Still don’t know what to expect. I’ve been reading a lot from everywhere about all this, but it still brakes my soul everytime I see him. We are waiting for an evaluation from PT team here at the hospital. We are still trying to process all these.
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March 31, 2015 at 6:15 pm
You must try to remain optimistic while doing everything that can be done to treat his condition. While GBS is a serious disorder, many people make a full recovery. I acquired it or CIDP, which is similar) as an adult, not as a young child. I was completely paralied below the neck for a few weeks, but today I walk without any assistive devices and am nearly 100% functional. There is a good chance he will get through this without serious impairment.
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April 12, 2017 at 11:21 pm
Hello. My son is six and was diagnosed with GBS March 20th and so this is all new to us also. He was released from the hospital April 7th. His had affected his upper and lower extremities and for a few days he experienced bowel and bladder incontinence and some difficulties swallowing. He had started with steroid treatment at first because they did not diagnose him with GBS initially. After no improvement with steroid therapy we had requested a neurologist and were blessed to be paired up with a different one that agreed with us that there was something else going on. He did three days IVIG therapy and Wow! What a turnaround he has made. There is hope and my biggest advice is to go with that parent “gut feeling”…we know when there’s something not quite right with our kiddos. We are currently doing outpatient PT/OT three times a week and will be traveling to Iowa City Children’s hospital to see a Neuromuscular specialist and Nephrologist due to his blood pressures being elevated. I will pray for your son and family.
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