After a release from the Neurologist, William experienced a relapse 2 weeks ago. I noticed a significant weakening and his slapping step returned. It was a Friday and I feared not reporting it before the weekend, so I called the pediatrician, who spoke with the neurologist. Our pediatrician saw us that afternoon and could not find reflexes in his knees. She and the neurologist decided to send us to the ER for another spinal tap. They were very busy and it took hours before they performed the procedure, but we finally had it done. He really fought this time because he knew what was coming, so it was a lot rougher than last time. When the results came back, the protein levels that indicated GBS were higher than they were the first time he was admitted. Around 3am, William was given a room upstairs with a plan to administer a half dose of IVIG over a 2 day period.
The treatments went well this time around and the neurologist could not pinpoint the down turn. It is very rare to get worse, but his only explanation was that we interrupted William's immune system early enough last time that as it started to take control again, it continued to destroy.
William is home again, recovering well. We finally got an evaluation and plan for physical therapy. He goes 2 times per week to practice his balance and strength exercises. He is quite weak so we are hoping for great progress as he continues in the therapy.
The neurologist suggested some exercises on a Wii, so we debated buying one and finally found and purchased one a little more than a week ago. We have the Wii Fit program and William enjoys doing it, but clearly needs focus on balance and strength (just like the PT assessed). I love the Wii for myself. It is fun and I'm actually enjoying the Yoga exercises in the privacy of my own living room.
We have been so, so busy these last couple of months. I don't see our load lightening any in the next 5 or 6 months either. All the subject of another post.
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3 comments:
Thank you for the update. How is his appetite?
I am so sorry her relapsed, hopefully it doesn't happen again. I am glad he is doing better and I pray that he continues to do well!
His appetite is his usual. If I don't stop him from eating, he will eat the refrigerator itself. Despite that, he has lost mass...presumably muscle mass. I'm working on "bulking" him up. I don't know quite how to do that as I already struggle to maintain a proper kid diet balance while Doug and I maintain the proper adult diet balance. Kids can process and need more fat than we can, so my lean choices for us affect him too. He eats 4-5 times per day. It's all wholesome food, but I wonder how he's going to regain the lost 2 pounds with wholesome. It goes against my grain to serve him Little Debbies just to add some meat on his bones when I know that proper nutrition will build him up to be stronger. The bottom line is, I don't know what I'm doing anymore when it comes to kid nutrition.
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