ChristySnyder

Sorry it has taken so long to get back here. Thank you for the suggestions. Josh is taking abx ( DR. T put him on that Wed), pepsid BID (read that here and Dr T said go for it) and motrin BID. I am not sure how long before we see improvement with the ABX. The only thing we have noticed so far is he is able to sleep a bit better. Joshuas blood work also showed he is a non responder for many of his vaccines like diptheria. Is this common in pandas or lyme kids or something else? I was so overwhelmed on the phone with Dr T that I forgot to ask.

Not sure where to start other than the begining. My name is Christy. Joshua is my grandson, he is 6 1/2. My son was in the Marines and Josh and his mom had moved to Texas, we live in Montana. I recieved a call from her asking if I would take him, otherwise she was turning him over to the state. So at 17 months old Josh came to live with us. Josh is deaf and right away the behaviour issues were very bad. Everyone said it was deafness related. We took him to a specialist who diagnosed him with OCD at 2 1/2. He was put on risperdone and prozac. We didn't noticed that it helped much. At 3 1/2 we made the decision to have Josh implanted with cochlear implants. He did good for a few weeks, but then got sick and had multiple infections, including strep. After, he became a mad person. We took him back to the specialist. She couldn't figure the problem other than maybe the trama of surgery made the OCD soemhow worse. But the aggression was terrible. Then came the impulse issues, so bad they also put him on Focalin. He started pre K that fall (4 1/2 then)and it was awful. He was terrified of strangers and would cling to me so bad we called him the octopus. His speech is so far behind the other kids and it is so difficult for him to express himself. We muddled through and he went to kindergarden last year. He had an on and off time all year. Luckily we live across the street from the school because I was there most days. In April, Josh was very ill. The Dr thought he had strep (white crud and bleeding) the rapid strep came back negative but the flu came back positive. They put him on abx and we went home. The next week he returned to school. Monday was good, Tuesday he woke up and all our progress was gone. He screamed, cried, wouldn't go to class without me. He hit kids, threw chairs and the screaming. He kept saying shut up even when he was by himself, did I mention the screaming . Hitting the dogs, spitting on people, making funny sounds in his throat, gagging on foods, gorging himself on others, complaining his leg and hip hurt, jumping on furniture, ripping holes in my rattan rocker, yelling at Papa and I. On Thursday I called his Dr and scheduled an appointment for the next Tuesday. On Monday I picked him up from school and he screamed he had a headache, also his eyes were dialated. We got home and he layed on the couch, then threw up. We figured head injury so rushed him to ER. They found nothing. At our appointment the following day our Peds Dr said it could be a bone infection or something he had heard of called, Pandas. We had blood work done and went home with abx. Blood work showed no infection, but the abx semed to help a bit with his behaviour. When we finished it the behaviour was back. So bad the school said if we didn't do something he probably would have to stay home. I called the Dr who told me it was more than he could do and we needed to take Josh to a Psyc, I was furious. Managed to finish out the school year with me sitting in class with him. Then I found this site. I called Dr. T. and he made us an appointment for a phone consult. He ordered the tests and Tuesday confirmed to us that Josh has Pandas, and also needs to be treated for Lyme? There has never been a case of lyme here in Montana, so I think Josh was bitten in Texas. That would probably explain some of the behaviours we have seen all along. But where do I go from here? How do I learn what these tests really mean? Josh's lyme bands that were positive are 41, 66 and 39. I looked at the CDC info and it says he needs more for a positive but Dr T said in areas where Lyme is common they treat at 2. Where do I find this info? We hae an abx to try for a couple weeks, but what else can I do? Were does Pandas start and Lyme take over or does it really matter?