Seansmom

My son was diagnosed at age 5 and is now 7. I can still see signs of PANDAS before he shows signs of being sick, but the worst PANDAS symptoms seem to be shortlived because I immediately treat. My son still has the ADHD and OCD, but it is slowly improving.

It's been a long time since I've posted. Sean was diagnosed with PANDAS in November 2008 at the age of 5. We were lucky to find a psychologist who was able to immediately identify the PANDAS and refer us to a local doctor willing and able to treat it. Sean will soon turn 7, and is almost a happy little boy. His medicine regimen consists of minimal antibiotics, omegas, vitamins, probiotics, and corticosteroid inhaler. It was a year before we were able to get thru a day without fits. Most days his symptoms are mild and manageable, to the point that we can predict when he is coming down with something 24 to 48 hours before other signs of illness show. We continue to see gradual improvement, but we remain guarded and protective against any illnesses. Like most PANDAS children, our journey has had it's share of cocommitant issues. Less than a month after being diagnosed with PANDAS, he was diagnosed with asthma (prior to this I hadn't seen signs of it since he was 2). After a long and difficult fall and winter in regular school (due to the continuous behavior issues and missed school due to illness), we decided to homeschool. While it ensured he was learning, it was tedious because of his daily fits. We've only recently been able to make some headway on this. In January Sean got Lyme disease. I was able to identify it within 48 hours of when the tic bit him, and we treated it with cephalosporin. On days 4 and 5 after the tic bite, we saw an exacerbation of PANDAS symptoms, but these quickly disappeared. Our biggest challenges have been the homeschooling, living out of our camper (waiting for the grandparents to get well so we can travel), and getting medical care for Sean as we move from place to place. I have been fortunate to find doctors that are willing to support the course of treatment even though they may not be intimately familiar with PANDAS. Just this past month we have really and truly hit the road! Hopefully our year will be full of adventure and travel! My best wishes go out to all the other PANDAS children and their families, that they be able to find the solutions to be able to cope with PANDAS on a daily basis as we have and that this year will be better than the last as it has been for us.

Michele, I had asthma as a child and was treated by one of the head allergy & immunology doctor's at a hospital in Michigan. I have written to him regarding PANDAS but have not yet received a response. If he does respond with anything helpful I'll let you know.

Sean doesn't like meat very well either. He prefers processed meats like hot dogs and bologna, so much so that I won't buy them because he eats them up all at once. Fortunately, he does like vegetables, with broccoli, green beans, and carrots. I'm trying to push high protein foods because he is hungry all the time. Sean resists trying anything new or doesn't remember but usually likes it and eats most of it if you can get him to try it.

We got the psychologist report yesterday. Her diagnosis is PANDAS but to ensure we get assistance through the schools she also diagnosed ADHD, Asperger's, and generalized anxiety. After school we went to the ID. While we were in the doc's office, the ADHD went crazy and he started tantruming. He was acting about as bad as he gets. This ID has treated 3 or 4 PANDAS cases. He does not see signs of Asperger's. He ordered blood work which we will be getting done today. I had to call him back though and ask why he hadn't checked off DNaseB antibodies. It was apparently an oversight. THANK YOU ALL FOR WRITING ABOUT THIS. If it hadn't been for you I might not have caught it. I would hate to have to go through the ordeal of bloodwork twice due to an oversight. He is also checking thyroid, metabolics, lupus, and lyme. If the titers are high the ID will prescribe amoxicillen. He also said to start fish oil. He also suggested a psychiatric evaluation and suggested medication to control the hyperactivity. We made it clear that we are not willing to consider more aggressive medications until we see what happens with antibiotics. When I asked about plasma exchange and IVIG he said he didn't know about them and we would have to seek out someone else - maybe Dr. Murphy could help. Overall, he didn't evoke a whole lot of confidence from me. I decided I want to move forward with occupational, speech, cognitive behavior, and maybe physical therapies. I had to make a bunch of phone calls to find a place that offers pediatric services. We'll be getting the evals next week. A note about school - I think the classroom teacher has pretty much given up on him. I think the Vice Principal was viewing it strictly as a disciplinary issue - but seems to have changed gears now that I've explained to her what PANDAS is and how it affects him. Now we're waiting for the district to approve the Psychologist's diagnosis and schedule placement meetings. I wish a good day for everyone!

My son had strep (and mono) on and off for six months. We saw a lot of hyperactiveness and sensory issues then. He had a tonsillectomy in February. Immediately after the tonsillectomy he had severe headaches for almost 4 weeks. The ENT and pediatrician blew it off as something that was going around, but we could do a spinal tap for encephalitis which would then be treated with the same antibiotics he was already on. (We didn't do it.) I had to keep him medicated with Tylenol and Ibuprofen around the clock. The headaches spontaneously resolved. It was after this that we noticed the PANDAS behaviors. Has anyone else's children had headaches in association with PANDAS?

I've seen many posts indicating their PANDAS children have a worsening of symptoms after exposure to strep. How soon after an exposure to strep have you seen the behavior worsen? How long did the worsened behavior last? I'm still trying to work out the intricacies of my son's behavior. ***NEVER MIND*** I see this topic has already been addressed further down.

Just a couple of comments on strep cultures based on experiences. Several members of my family and my son have had negative in-office strep cultures, but...when those same cultures were sent out and allowed to grow at the lab they were positive!!! I always insist the strep culture always be sent for lab analysis - and I don't wait for the doctor's office to call me with the results! I call them. On at least one occasion they did not call me with the results until three days after they had them back!!! I've also had the experience where the culture was negative and a repeat culture a few days later was positive!!! My son will actually exhibit classic strep symptoms - in his case, fever, malaise, loss of appetite, sometimes runny nose - 24 to 48 hours before he will test positive for strep. If you ever doubt the accuracy of a strep test - retest!!!

My son has thrown tantrums about McDonald's too!!!! LOL. Those golden arches stand out way too much!!!!

Hi all, The first time I heard the term PANDAS was one week ago. My son Sean is 5. Last year he had chronic strep from October to February. Mono was confirmed in January, and I saw scarlet fever rash at least once too. He had a tonsillectomy in February. Two days after the tonsillectomy he blew an artery in the nose. I've been through some scary stuff with him, but that really took the cake. Just prior to the tonsillectomy, I expressed concern about his behavior to his preschool teacher - hyperactive and always touching everything! My son was in a special needs classroom as a typical peer. You would think they would have noticed the behavior changes but they didn't until I pointed them out. His pediatrician and ENT both referred to sudies that have shown that some kids get ADD/ADHD with strep but the behaviors resolve once the strep is resolved. But noone made any references to PANDAS. Sean's behavior issues didn't resolve. It has only gotten worse. And after reading about PANDAS I realized that there were even more behaviors that we were overlooking that are either tic or OCD manifestations. We met with a psychologist yesterday who has dealt with other PANDAS cases and she has referred us to a local pediatrician who has dealt with other PANDAS cases. I'm thinking he may have ties to Dr. Murphy since he did at least part of his education at UF. I'm not surprised at the PANDAS diagnosis though. It's not the first time I've dealt with unusual medical conditions. We're temporarily living in Florida (not close enough to Gainesville where Dr. Murphy is). I actually told our new doctors that they should be paying us because we specialize in the rare and unusual and they might have a chance at making medical history with us or at least getting published. LOL!!! Boy, wouldn't that be a wonderful solution to the rising cost of healthcare - have the patients charge the doctors!!! I believe Sean was predisposed to PANDAS. My entire family has asthma and allegies and just lately immune issues, and my husband's family has had neurological disorders associated with medical ailments. What a combo! My childhood asthma doctor was one of the key doctors at University of Michigan's Mott's Children's Hospital Department of Allergy and Immunology. I may contact him for an opinion at some point too. Sean's OCD manifestations center around Ben 10 (a child superhero), insisting on buying him toys, and death. We've had some deaths in the family and his grandfather is in end stage Alzheimer's which only exacerbates it. Yesterday he actually told the psychologist that he thought she was going to die. The tantruming and defiance at school is so bad that they referred us for psychiatric services. I requested psychological testing through the school, but they are insistent that they must go through this 8-week observation and intervention program first. I'm hoping that now that we have had private testing done and a recommendation for placement in a special needs classroom that they will be able to act on it. On difficult days, Sean manages to exhaust both my husband and me. But despite his awful behavior I always try to find some element of amusement or content because it makes us all feel better. It might be a quiet moment after a tantrum, or some odd joke that doesn't seem that funny to me but it makes him laugh to his heart's content. It might be him saying "This was the best day of my life!" when I thought the day was actually kind of difficult. I think it's easier to look for these things because last year he was in a bicycle accident that almost killed him. We were in Hershey, Pennsylvania, and their children's hospital has a nationally recognized trauma unit. I actually commented on this as we drove by it the first day. I didn't know we would get a VIP tour! Sean rode his bike 100 yards down a steep hill and fell off onto a stump. You could clearly see the outline of the stump on his back. He broke two ribs and punctured and collapsed his lung. The surgeon said he had to have hit with the force of an auto accident and that she had never seen a child his age with those injuries where the spleen didn't rupture. And if he hadn't been wearing his helmet it would have been a different story too. The hospital team was great, and incredibly Sean was out in two days. I appreciate all the factual information that has been incorporated into these forums. It really helped me sort out the interpretations of the various studies on treatments and their relative effectiveness. It also gave me a lot of insight into the symptoms of PANDAS. I think we will be able to work with our doctors much more effectively because of it and hopefully keep trial and error tactics to a minimum. As a last thought, does anyone know if there are any national organizations related to PANDAS, i.e. support groups, associations. (It seems like there is for everything else!) I couldn't even find a web site with comprehensive centralized information. I had to get really creative with my web searches. I kept stumbling across Panda BEAR immune disorders!!!! I also sense that finding doctors that are experienced with PANDAS is an issue, too. I'll keep you all up to date and of course add anything new that I think might be helpful to the forum. Sean's Mom