SearchingMom

Hello, My ds11 had bloodwork done for titers, and I'm hoping someone might be willing to take a look at these results I just got? I'm new, but these numbers seem (to me) like they might be on the lower end of normal. I found a thread re: Dr. Swedo saying that some PANDAS kids can have low titers, but how low is too low? Or are these numbers considered normal? DNASE-B Antibody result is <60 (Flag reference ranges: Preschool <=60 Titer; School <=170 titer; Adult <=85 titer) ASO result is 6 (Flag reference range: <150) Sed Rate by Modified Westergren result is 4 (Flag reference range: < or = 15) C-Reactive Protein is <0.10 (Flag reference range: <0.80) My thanks in advance to anyone who might be able to help!!! SearchingMom

Hello all, While we're still waiting to get a diagnosis (or not) for PANDAS, I've been researching natural antibiotics. We've been taking probiotics for about 6 weeks now, and I was hoping to learn more before considering the large-dose antibiotic route. But if that's what we have to do to see results, of course we'll take that route! In the meantime, can anyone tell me if you've ever tried grapefruit seed extract, oregano oil, olive leaf extract, or caprylic acid? I read on Wikipedia (may or may not be true) that caprylic acid is effective against some strains of Strep and Staph, although there have been steady reports of mild to severe gastrointestinal side effects. I can't find any reported side effects with grapefruit seed extract, and it is supposed to be a natural broad-spectrum antibiotic effective against yeast, bacteria, viruses, and parasites. Both seem almost too good to be true! I don't know much yet about the other two. Any thoughts, advice, and experience are welcome. Also, here is an update on our progress. Today I took my ds11 to a pediatric neurologist who diagnosed OCD and referred us to a child psychiatrist. (Shocker.) In advance I tried to determine if/how they treat and diagnose PANDAS, but they never responded to my repeated visits and e-mails. Basically, we were dismissed with: "I'm not goint to argue with you about PANDAS" even though the dr was doing all of the talking - mostly explaining why it *wasn't* PANDAS. But for whatever reason, he did agree to run bloodwork for ASO and AntiDNaseB titers and a 3-day strep culture. We also have an appointment in two weeks with a dr who is supposed to know about PANDAS, so that's reason to hope, although I try not to get too excited about a good outcome. Just trying to be ready if more obstacles appear along the way.... Thanks, SearchingMom

Dear Jen, I e-mailed ILADS just yesterday to find out about drs in TX area. They referred me to another e-mail address to request a list of doctors. I've gotten no response yet, but I would be glad to send you a personal message with any info I get if you'd like. If you want the e-mail address I was referred to, I can send that along, too, in the meantime. Angela

Dear Amy, Thanks for the reply! I just spoke with the dr directly this afternoon and he confirmed I should be able to get the bloodwork done with my PCP. I got the names of the tests (AntiASO and AntiDNaseB) to be done prior to the appt, plus I will be getting my ds11 tested for lyme (long history of embedded ticks over last seven years). Dr said he could test for co-infections after this initial bloodwork if needed. And the dr was willing to move the appt up a week sooner, too. Angela

Hello, Thanks to all who reached out to me after my first post about my ds11! Since then I've made contact with a PANDAS immunologist and have an appt in about a month (3-hr drive from our home). I still have the appt with a ped neurologist (30 mins from home) who may or may not do PANDAS (still working on determining that before our appt next week). Here's what I need help with if anyone can chime in: 1) Since the immunologist is 3 hrs away, should I try to get bloodwork done before the appt with immunologist? Do you know if I should work with PCP to get the bloodwork done? If so, what tests should I ask for? Or will it be better to let the immunologist order tests after we meet with him? 2) I know there is a new lyme disease forum starting soon, but until then, can someone point me in the right direction to find an LLMD/ILADS dr? I just e-mailed the ILADS web site for the same info - don't know if they will respond with a list of drs near me or not. 3) I've been reading around the forum, and it sounds like I should have tests for both PANDAS and lyme done before any abx are given to ds11 (if that's the ultimate outcome, of course). If this PANDAS immunologist will test for PANDAS, but won't do the lyme testing, how should I proceed? 4) I just read a post about mycoplasma and a possible correlation with rages/angry outbursts. What is mycoplasma? (spelling could be wrong) My ds11 is having frequent rages and I would like to know more about this so I don't miss something that might help. My thanks in advance, SearchingMom

Hello, I've been reading this forum for about two weeks now. My 11-year-old son has been having strange symptoms (nothing easy to pinpoint) for about a year now, but his angry outbursts have become more frequent and frightening. I've related so much to the devastating emotional toll people have reported experiencing with these behaviors in others. First we tried the therapy route which was frought with much abuse and trauma, and I've been investigating physical causes now, like P.A.N.D.A.S., post-concussion syndrome, lyme disease, and very possibly celiac disease and/or gluten/wheat sensitivity/intolerance. My reason for posting now is to try to find doctors in my area (Houston and beyond) that deal with such auto-immune disorders. We have an appointment referral from my PCP with a pediatric neurologist in about 2 weeks, but I have little hope that he will know (or believe in) how auto-immune disorders can cause this range of physical and neurological symptoms. We also have an appointment with a naturopathic doctor next week so he might have something to offer. In any case, I've reached a point where I know I won't last with this much longer if we don't get help soon from someone who knows what's going on. I realize this will very likely take a lot more time to resolve than I would wish, and even typing those words, I can't even fathom how I'm going to make it through. If anyone knows of any LLMD or P.A.N.D.A.S. or other sympathetic doctors in my area or even in a nearby state, would you send me a personal message? It's my first time posting, so I don't know if you can already see my e-mail or not, or if I need to do something on my end in order to get personal messages. Many thanks for any help you can offer, SearchingMom