[Amazing Dr's appt at Shands clinic]

Dedee!!

 

I just came to this website looking for help. We have been sent to every type of doctor and no one has been able to give us answers. I would love to hear what issues your child was struggling with and more on how you have been treating them. We are so confused on what is best for our 6 year old who has PANDAS. Luckly his tics went away the second round of antibiotics, but the OCD/behavior issues still come and go. Thank you for posting your information. You really have given us some hope that we can talk with someone(doctor) that knows what to do!

[PANDAS]

I just foud this website and I would not wish this on anyone, but I am so happy to find others that can understand! My 6 year old son was diagnosed with PANDAS and I can not find anyone(doctors) who can tell me what to do. They have put him on a penicillian injections every three weeks for five years, have us seeing a neurologist/psychologist./ENT/ID, and basically said give him Paxil or Clonidine. His tics went away after a second round of amoxicillan, but the OCD/behavior issues still are coming and going. I am at that beginning stage of not knowing where to go and who can help us. His behavior/OCD issues go away about two days after his injection and then start coming back about a week before the next one is due. The doctor's say the penicillian isn't playing a part, but how could this happen the same way three months in a row? Should I have more blood work done to see if there is strep still growing? Maybe a blood culture? Will this go on for the rest of his life or is there something I can do now to help stop it? I look forward to any help you can give! I feel as if we are at a stand still. No one knows how to help us. I don't know how to help him..