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Thank you for your quick replies. Yes, its been two years since bloodwork (other than thyroid levels). I know there are other things to test for but I am unsure as to how to get a doctor to order these tests or what battery to ask for? You both mention things for which he has NOT been tested. At age 5 he had only basic allergy testing that showed all negative but I have always thought he was an allergy child despite his results. I have him on lactose free milk as we had issues with bloating and such when he was younger et cetera... Would you suggest I call Dr. T again (we've not talked to him since 2011) to arrange for a proper and thorough work up? I am not sure where to turn for help in my area. Of the Dr.s listed on this site, they are either not practicing any loner or have waiting lists a mile long.

Hi All, Quick background: ds dx'd PANDAS (in retrospect PANS) by Dr. T several years ago. No identifiable triggers noted at the time. Strep, mycoplama despite checking at various times always negative. Lyme negative by CDC, but id have one postitive band IgM 23 and one Ig G 41 during one flare via western blot. Always responded to Motrin and/or Azith. Was on Azith for about a 9 months and weaned successfully. Treated intermittent blips with anti-inflammation measures successfully and had usually 1-2 major flares a year. We were okay. Now age 12.5 and for the last 3 months like clockwork he has had a viral illness and subsequent one week long terrible OCD, moodiness, through the roof insomnia... It eases after about 7 days each time. The flare is so great that he was rx'd Klonopin out of desperation but we think that made him more moody, aggressive, forgetful, drugged. Melatonin seems to help some. He even took Ambien during the worst, worst times. Most drugs in general seem to hype him up and make him worse... In his life, Zoloft, Benadryl, Gabapentin... have all made him hype and moody or more anxious. Magnesium and motrin seem to always help some though the degree is questionable lately. Azith did always in the past - but last month it did not help at all - so we switched to Augmentin which is what he has been on since mid October. The last two flares October and November, we have noted additional physical symptoms: fiery red cheeks and ears. They bother him so much. He also has heat flashes all day long, knee pain and leg pain, problems looking at bright light (computer or tv screen). His eyes hurt and are tearing and he says his skin doesnt feel right. We don't note anything different in the sense of potential allergies. I am currently STILL trying to get in with an LLMD to investigate lyme but i am having a hard time STILL finding anyone who will help us. The closest LLMD is three hours away with months long waiting list. We do have an understanding psych but she is fairly baffled. We have appt. to see endo in a few weeks (he is hypothyroid but stable supposedly on minimal synthroid). Do I seek neuro? immunologist? first to make sure we are not missing something? We are near Duke and UNC if that helps though I've been told both are non PANS/PANDAS believers. We've been living on the edge since September, bracing month to month, and I just am not sure which direction to turn. My husband now wants to turn full tilt toward more psych meds but my experience tells me that he won't respond well. At least we haven't had a positive response yet... Advice?

I should add that the pupils dilate in the evening several hours before Melatonin. And the headache and vision problem is all day.

Many thanks for the replies. This forum is such a valuable community! Now that he is off Valerian, Ambien and Klonopin he is somewhat more manageable during the day. The rage is gone and he is able to put on a brave face in front of others. He does still obsess over tiny hairs everywhere and dust being stuck to his skin. In addition he is generally still in over drive. He is able to sleep with Melatonin and me in the room. Though it is not without struggle. He begs to be knocked out. His pupils dilate every evening as he anticipates the dread of night. Honestly the only thing that helps him is Motrin. We have switched him from Azith to Augmentin to see if that helps. We are considering a steroid burst if the rage returns or if he becomes dysfunctional again. I agree that we need to look into alternative treatments and I do think we need to search for more underlying infections as well. Rowing Mom, Dr. T said "no lyme" as DS had only one band present on both IgG P41 and IgM P23 ??? I admit that I am NOT lyme literate. ??? I also grow increasingly concerned that his thryoid is a bigger player than I thought. He is still on synthroid and although his latest labs are WNL, I just can't help but wonder if there is more to it. Of course that thyroid issue is still my best card when talking to doctors who do not believe in the autoimmune nature of PANS. Lastly, he is complaining that "screens" cause headaches and vision problems (when in the past it was hard to tear him away from a screen). And both is legs are sore all the time limiting his ability to do much of anything physical. Any thoughts? Thank you to everyone!

Yes back on Azith. I have always thought Azith response was primarily helpful purely for its anti-inflammatory properties. But yes perhaps I need to try a different agent. He does still have the tail end of a major cold - now a cough in his chest. Though he has a long history with strep infections, we've never been able to document high titers. And his testing for most other culprits via Dr. T have been negative. He does have the fairly common G subclass 2 immune deficiency so he has frequent infections. His nasal turbinates always seems swollen but no doctor ever seems to want to do anything other than prescribe nasal inhalers for him. We are in NC-- if anyone knows a PANS MD. As said, our new psych is a believer but doesnt know much what to do about it. And because we had been sailing - relatively - managing episodes we have not pushed any further. This time just feels different though. All his other flares have been compulsion based with just right OCD, hyperactivity and anxiety. This just seems different in the way it presented and the way he is acting. He has no compulsions but does feel as if his hair is falling out and dust is stuck to his body. The separation anxiety is full tilt. The brain fog (which I have seen often before) is not lifting. The sleep issue is huge. He is coming unglued by the second.

Have been dealing with this in retrospect since age 5. Diagnosed by Dr. T at age 10. My son is now 12 1/2. We never identified a trigger but he had clear episodes of compulsions, OCD and anxiety about twice a year-- the worst being in the spring. Azith helped (as did motrin).. During one flare his ferritin plummeted and his TSH was 7. With synthroid those values stabilized. We had been doing very well - knew the animal-- knew what to do. We had been symptom free for 8 months. Five weeks ago, my son had a hard time falling asleep. It freaked him out and he stayed up until 3-- not wanting to leave my side. Anxiety through the roof but it was not the PANDAS stare that I had been familiar with-- despite occurring a few days after a cold. He was just very concerned about upcoming tests et cetera. The episode spiraled though, and he ended up with short term Klonopin and Melatonin as Rx'd by pediatrician. This helped the sleep but made him wired and weird during the day. He missed several days of school and then lucky for us -- 2 week vacation. It was good timing. He got better after weaning from the benzo and within 2 weeks he was fine (and of course I had also started him on antibiotics this time). Went back to school without issue for 10 days. Went to a very stimulating party and he had trouble sleeping again afterward. This triggered the entire scenario again. He also developed bronchitis one day following the first insomnia night. Klonopin made things worse. Rage, pupils dilated. We tried valerian and melatonin. We resorted to a tiny dose of ambien. I had thought "...if I could get get him thru the week... we'll be fine.." He's not fine. Severe separation anxiety. Severe moodiness and brain fog and now wetting himself. Now it's looking like the PANS I remember. But the nights are the worst. He won't sleep but he desperately wants too. I don't know if the melatonin and valerian are making him worse? I don't what is up or down anymore. I don't know right from left. I myself haven't slept in a week. I may have to take him to the hospital, because I don't know what to do. But I know they will diagnose him with something like bipolar and pump him full of drugs. I will lose my son. We have a new psychiatrist that is a PANS believer but she is out of town on vacation. I have him on antibiotics and motrin. I don't know what else to do. I am so very scared.