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tired and confused- need some guidance


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I have been a constant reader and researcher on this wonderful forum, but this is my first post. I will give a quick,(I'll try)abreviated history. DS8 was a happy healthy baby, with an easy, sweet disposition. At around 18 months he started to get repetetive strep infections. I also about this time rehen he was about 2 and 1/2, I got call from his daycare, he was stubling and couldnt walk straight. Immed took him to ped, who had him walk up and down hall looking like a drunken sailor. Sure enough,had strep. We were leaving for family visit to SF on plane, and voiced my concern about never eradicating strep andasked for antibiotic shot, which was given. We got on plane,and from that point for two days straight, he was "out of his head" yelling and irritable. I thought it was plane, strep and travel. I was just about to take him to Standford ER, but finally fell asleep. He seemed to be a bit better thenext day, but I realize now and kick myself- that he probably had encepholitis or meningitis. And it was from that point forward that things changed and continued to. When we tried to sched tonsilectomy asap, we couldn't get go-ahead b/c his pts and ptts and some other numbers were off- they sent us to specialist, tested for leukemia, lymphoma, von wilds, etc. Finally gave us the go ahead, said that repeat infe tions can cause autonomic system changes. Had tonsilectomy, actually seemed back to normal, and speech started to finally take off a bit. But then started to backslide. Seemed to always catch things, pre-school teacher said he wojkd sometimes just fall out of chair, had moments of spaciness, and would know things one day but not next. Took to neurologist who tested for fragile x, and some other rare syndromes with no results. Other things started to happen,but in vague or inconsistent way. He would complain his legs and arms hurt,he was exhausted, falling alseep mid day and always having accidents, started walking on toes. Age 5- he started his eyes started to not track together, personality changes. Age 6, major disposition changes, new adhd,super super sensitive to light and sounds,can't stand smells of food he used to love eating, falling apart and easily agitated.Also notice a gasping/croupish cough at night, sweating out. He is slowly falling off cliff and I can't stop it. I always thought evthing had something to do w/that repetetive strep, stumbling,and pt and autonomic dysfunction. Come across pandas. Nexttime he is really off I watch...emotional wreck, obsessive, wets bed,throat hurts. Strep positive! Thinking pandas- see dr.b, agrees

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Did anyone check for HHV-6? Besides strep, we found that virus was causing a lot of the sensitivities to light and smell. I also found that to be true when my Father-in-law got a wobbly gait and memory issues. We are on valcyclovir 3x a day along with abx.

 

Diet is important too. Look at what he craves for clues to inflammatory foods. The inflammation causes a "morphine like" effect so they self medicate with the foods that actually cause harm. Dairy was huge for us. Major temper tantrum when you try to take it away but huge improvement when you succeed.

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