seven year old boy with gbs

hello everyone. My son Ty was diagnosed with GBS in March of this year. It all started in Feb. He got the flu and didn’t get better for a few weeks. I took him to his dr. (who he’s had since birth) who diagnosed him with depression and told us to see a counselor. I didn’t because I knew the problem was deeper than that. Long story short- He was getting horrible headaches, leg cramps, etc. I took him to the University of Michigan 6 times before they would admit him. (In total he was misdiagnosed 9 times) Once admitted i was told he had Spinal menangitis, ADEM (MS) and a list of other things. Finally he was diagnosed with GBS and we immediatley were sent home. I, like many of you, have never heard of this syndrome. I researched as much as i could find and at this point feel like i know more than most of his dr.’s.
Ty is doing much better now. He never had IVIG treatments or Plasmapheresis (?), but recovered well on his own. He actually played baseball and didn’t miss a game. He is now into flag football and doing O.K. His motor skills are great at times and other times he looks like a toddler fumbling around. His doctors just recently put him on Neurontin, because of the nerve damage in his feet. It seems to be helping. If there is anyone out there that has had a similar time with this disease and there is any info on the recovery process that you could share with me, please do. I feel like i’m not able to help him. Some dr’s tell me to let him do what he wants, where others tell me to restrict his activity. I’m having a very hard time latlely because I’m not sure what to expect. As a mother, watching your active 7 year old struggle to walk is a hard thing to go through. I’m glad to know that you all are out here.