Hello,
We are now on zith and Minocycline in an attempt to stop one long low grade fever flare. Reacting to so many meds now with odd side effects so we must be very careful. His feet burned with Valtrex and his feet went numb on ramifican. FEET?? Diagnosed with Bart/PANS and treated for 5 months. We stopped bc med reactions. Within a week, attempted to regroup and it all returned. (lymes/PANS symptoms)
Tell me something, are we alone? I mean does anybody else see this? I read that so many kids go to school. NO way here. How do ypu get your children up and out the door to school each day???? DS can up and get dressed but it's very slow and fragile. Our DS rarely wants to leave the house. If he does, it's for a short time and then he refuses for the next few days following bc he feels overwhelmed with his outing. Also.....please tell me what do these children do all day??? Mine can't go out or read or play much.... so he only watches TV and waits for video time to kick in. NO friends bc rarely goes out. He was only aloud on Vgames during weekends pre PANS , but it seems to be the only thing to calm him down and he is now up to 5 hours a day. It's become an addiction. It's all he thinks about!!!! What do we do to passs the time with him??
Love to hear if I am alone or others see similar pattern as well?
Thank you all for your kindness and knowledge.