I wanted to share my story and ask for some advise because I'm not sure if I'm treating my son with a wrong diagnosis. My son was diagnosised with ADHD & OCD. He is currently taken 5mg Adderall XR & 12mg Zolof for his ADHD & axiety/OCD behaviors. He is six years old and just started these medications three months ago. I have seen a difference in his behaviors but not a huge one and I'm not sure if it's more ADHD or OCD/Tics/Tourettes but after going through all symtoms with the doctor this is what he came up with. We have been struggling with wierd behavior for about two years and new something was just not right but waited because maybe these behaviors were age appropiate. Once he started in school, the teachers even noticed the same behaviors we were experiencing at home. These behaviors include: very fidgety, unable to make eye contact, anxiety over a pencil falling on the floor and not being able to move forward without dwelling on that all day, shakes his head, talks excessively and this just names a few. The behaviors are worse on some days than others and we can't see to figure out why. We ran blood work last year and noticed that his ASO titers were high (478) and the neurologist told me to see the pediatrican to see if he has strep throat. Well for about seven months, every time I went to the pediatrian, I had them check for strep and most of the time it was positive but no signs of a sore throat. So the conclusion was that he was a carrier for strep throat. I had done some research at that point, and found something on the internet about PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep) My son fits all of the characteristics and I was so happy to finally figure out what was going on with him. Well, when I mentioned this to the doctors, they thought I was nuts. He didn't have this. So I continued struggling with him until we started the meds about three months ago. Well, the past two months, he started having bad headaches and frequent urination. I had to count and it was 15 times that he went in 4 hours. Even my family couldn't believe that he had to keep going so much. Again, I went to the doctor to make sure he didn't have an infection and I also mentioned the headaches. The pediatrician said everything looked fine and that I should mention to the neurologist when I see him next. So that is what I did and more blood work was done to see his levels. Well, his RBC & WBC were just below normal & his ASO titer wase now at 1178. I don't know what to do next. I truly believe my son fits the diagnois for PANDAS and I want to make sure the meds that he is taking are OK for that diagnois. I go to bed at night wondering if I'm doing the right thing with the medicines. I'm hoping that someone has experienced anything like this and has some advise for me. I don't want the doctors to think I'm looking for this to be PANDAS but that is how they make me feel. Need your advise. If you have any input please advise.
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