hi Randi, I've been meaning to call you every weekend and then the days get away from me! Our pediatrician ran the blood work and (no surprise to me!) DS's titers are elevated: ASO 1200
Reference range: 0 to 640
DNase B Ab 590
Reference range: 0 to 375
Now my question is: how long to treat with azithromycin, and at what dosage? Wanted to see if you have ...
Thanks to all for the replies...our pediatrician ran the blood work and (no surprise to me!) DS's titers are elevated: ASO 1200 Reference range: 0 to 640 Unit: IU/mL DNase B Ab 590 Reference range: 0 to 375 Now my question is: how long to treat with azithromycin, and at what dosage? he's 70 lbs. I'm sure the pediatrician will recommend a course but I wanted your input as well. Thank you all!
Hi VA MOM, I would love to talk and help you get oriented to all this - it sounds like you know a lot already but it always helps to talk with other parents who have been through the PANDAS history, had most of the treatments and success. Please let me know if you would like to talk/meet. I live right in C'ville, near town. My kids are at WAHS. Email me or call me 434=249=7396. Randi
Thanks very much for all the replies. We are in Charlottesville, and with UVA Medical Center here, there must be someone who knows something about PANDAS--I just don't know of them. But I'm going to start my research and am emailing my pediatrician now. I'll also get on Dr. Latimer's list, just in case. Thanks again for the encouragement I needed.
Hi, I’m new to the forums, writing because my son DS (6) was recently diagnosed with OCD and I'm wondering if we should be pressing for the doctors to explore the possibility that it's PANDAS. He has always been a quirky toddler and young child, with numerous phasic anxieties that have come and gone. When he was about 11 months old he started cleaning things--never to the point that I thought he was sick, but he was definitely a quirky baby/toddler who loved to help clean the house! When he was about two years old he went to a phase of hoarding small trinkets, toys and other objects from around the house and putting them into receptacles like a bucket , truck, or a bag. He wouldn’t let anybody touch them and would become very upset if we tried to return the items to their proper places. That phase lasted about five months. Later when he was three he went through a phase of being terrified of the wind and refusing to go onto the playground at school because of it. Also that year he went through a phase of being terrified at the beach that the waves would carry all of our things away and so he would spend all of his time at the beach carrying sand toys, coolers, blankets, chairs etc. as far away from the waters he could get them. (Reasoning/explaining didn’t help.) When he was 4 ½ he got Strep throat, swabbed positive. Amoxicillin for ten days. Four weeks later, overnight, he woke up with serious separation anxiety, and was running to the bathroom 5 to 15 times an hour saying that he needed to pee but nothing was coming out. He also was talking about being afraid of dying. I took him to the pediatrician, he didn’t have a UTI (which was my first thought), and the doctor thought it could be constipation, so we tried Miralax, which didn’t help the urinary frequency issues. The pediatrician knew of the existence of PANDAS but did not think that we needed to do more amoxicillin than he’d already had. I think they might have swabbed him again at my request but it was negative if they did. (Now I know I should have asked for blood tests…) It took about six weeks for DS’s symptoms to recede. He has continued to be an anxious kid and some phases are worse than others. He has always refused to try new things, new places, new experiences. He's smart and is a "numbers and details guy." Last fall he started kindergarten and within a month was terrified of missing the bus. Every morning his anxiety would go through the roof in the 10 minutes before bus stop time, to the point of tears and running out of the house. We tried to rationalize with him and tell him that nothing bad would happen, if you missed the bus we would drive him to school, nobody would be angry or upset, but none of this helps as you well know. At Christmas time we traveled by airplane and he exhibited the same anxiety for an hour before getting on the plane, worried that we would miss the plane. Because of these compulsions (and a lot of re-checking behaviors with me and my husband—Mom, when are we leaving for X? Are we on time? Is (younger sister) strapped into her car seat? Will you ask my teacher X? What are we doing tomorrow? Asked ad-infinitum) we took him to a child psychiatrist in March who diagnosed him with OCD and recommended Prozac and cognitive behavioral therapy. Despite being very conservative about medications in general, we agreed to the Prozac because of the concept that kids with (non-PANDAS) OCD have very good outcomes if put on SSRIs in combination with CBT…that the SSRI (correct me if I'm wrong here!) can actually change the way his brain develops as he gets older, hopefully preventing him from developing the compulsions that he doesn’t yet (to my knowledge) seem to have. And I was also swayed by the psychiatrist who said that for OCD kids, so much mental energy is taken up by the obsessional thoughts that they can fall behind in their social/academic development. As of now I’d say he’s doing fine on both fronts, but I can see how distracted he is by his worries, and so can accept the argument for the Prozac. We started him on1.25 ML of Prozac daily (20MG/5 ML suspension) and within three weeks we saw some reduction in the amount of anxiety that DS had in the mornings about the bus. Two weeks later his psychiatrist suggested that we double the dose--we met him halfway, agreeing to give 1.9 ML/day. Within one week of increasing the dosage, DS was exhibiting serious behavioral activation , hyperactivity, and a complete lack of impulse control. He was hitting his older brother, bumping into people, not listening, running into the street without looking (he’d always been quite compulsive about checking for cars previously!). We reduced the dose back to 1.25 mL and within three days he was himself again. I started doing Google searches on SSRI and behavioral activation and saw this article about SSRI-Induced Behavioral Activation in the PANDAS Subtype http://www.primarypsychiatry.com/aspx/articledetail.aspx?articleid=561 It got me thinking about PANDAS and whether we should be exploring that as opposed to just accepting the diagnosis of OCD. So my question is this…DS had an acute PANDAS flare two years ago. Could he still have PANDAS/gain some relief from his anxiety if he was treated for PANDAS, even if he’s not currently exhibiting the acute symptoms he had then? i.e., he’s being OCD/quirky enough to be diagnosed with OCD, but I’m pretty sure he wouldn’t be diagnosed with PANDAS right now…but is it possible that he still has PANDAS and that is what’s causing his anxiety/OCD symptoms? I’m going to talk to my pediatrician, who is the one who brought up PANDAS two years ago and who I think would be open to running whatever blood tests I want, but I wanted to hear from some people more knowledgeable about this before I talk to her. Thanks so much for reading the long post.