FrogPrince

oivay...can you be more specific? kimballot...PM returned. Thank you

My 7 year old was diagnosed with PANDAS when he was 3. He had all symptoms except the tics. We had never heard of PANDAS and nobody around here did either and even just 4 years ago there wasn't much info to be found. Everyone that we took him to would say that they heard of it but thats it. It seems that they listen but then treat him for what they know about...which would be the symptoms such as anxiety and mood disorder. He is currently being treated for anxiety and bipolar and he is up and down with all the medication changes while they try to figure out what will work for him. His current pyschiatrist told us taht he isn't stable and suggested long term hospitalization after the medication that he put him on made him extremely manic and aggressive. He saw him when he was sick and his medications do not work when the PANDAS takes over. Is there anyone in the area that someone could direct us to? I'm willing to start anywhere...a doctor, a pychiatrist, a counselor, anyone who is willing to at least listen and point us to someone. Thank you

Our son's personality seemed to change over night and he was having PANDAS symptoms for about a week or so. We were trying to figure out what the heck was going on and a light bulb went off when he showed us his loose tooth. It's happened with almost every one! With our son it seems to be any time his system is stressed his PANDAS acts up and it doesn't have to be strep anymore. Sick (even just a cold), loose tooth, etc. seems to trigger him.

Yikes! Stay away from the Univ. of Rochester, that's for sure! The Rochester area is PANDAS-naysayer Central! Funny you say that... It's been brushed off every time we have brought it up for 3 years. We have spent too much time and money on 'professionals' that try to figure him out by throwing new medications at him every couple of months. This is stealing his childhood and I need to get it back for him.

Momcap...sounds very similar. My son doesn't have tics but he does do things like clapping, yelling, shrieking, etc. All when he sick and isn't regulated. He was taken out of his class a couple months ago and put in an 8-1-1 class. He was doing well before this episode. Now they are talking about a special school for children with emotional/mental health difficulties as you mentioned. Thanks for sharing!

Rochester, NY

Thanks for the quick replies! I feel like we have to keep peeling the onion back to get to the center here. He was originally misdiagnosed with ADHD because of the manic state he gets at times. After two years of the wrong meds and multiple doctors we found a couple that thought the ADHD systems were stemming from his extreme anxiety and that he also had a mood disorder. Made sence. He was put on clonidine to help with anxiety and risperdall to help with moods. Benedryl as a PRN. Everything was good for awhile (sleeping for the first time in years, calm state, doing better in school, etc) and then BAM!!! PANDAS. Overnight he became a differnt child again. As he gets older it seems to be getting worse and he gets in a very manic state with lots of aggression. We submitted him into a pediatric phyc unit becuase he was becoming a danger to himself and his mother. The doctors at the hospital didn't buy into the PANDAS and kept going back to the anxiety and bipolar. Then they ran a bunch of tests and he had an ear infection. Bingo! There is the trigger for PANDAS. So peeling it back, yes, the ADHD symptoms are from the anxiety and mood disorder but those are biproducts of the PANDAS...which nobody around here wants to touch.

It was suggested by a doctor about 3 years ago that my then 4 year old son my may have PANDAS. It seemed that he either had strep or was getting over strep. When he had it, he would be a completely different person. After doing research, it seemed that he had every single symptom except tics. His behaviors completely change and he goes from this sweet little person to an extremely aggitated, angry guy and experiences every single symptom on the PANDAS checklist. This is were it gets a little complicated. He is currently diagnosed with anxiety and bipolar. It is manageable until he gets sick, whether it's a cold, ear infection, losing a tooth, etc. he becomes a completely different child. Basically any time his system is effected the PANDAS symptoms kick in. Does this still sound like PANDAS? Can someone weigh in on this? It seems as though there used to be more focus on the behavioral side of it a few years ago but now the focus seems to be on the tics. THANKS!