Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 Hi Annie, there are some members here with kids with PANDAS. You can also search back through the archived messages of the group for PANDAS, should turn up a LOT. And there is probably something in the FILES section of our group too. Some people have had a bit of success with ongoing antibiotics for PANDAS but I think most end up on the same medication as non-PANDAS (SSRIs). So far as therapy, it would be the same also, CBT with ERP. Also, sometimes if it's PANDAS the OCD will stop or almost stop after a few weeks. Can return with future strep exposures. All I can think of right now, I'm sure others can tell you a lot more. So he had strep before the OCD? Sorry, hard to remember " what is what " with each person. http://www.tourettesyndrome.net/pandas_overview.htm http://intramural.nimh.nih.gov/pdn/web.htm > > Does anyone have knowledge or experience on treating the PANDAS type of OCD? > We suspect this is what our son has but our pediatrician was clueless about > it and I am not sure what it would mean for his treatment options. > > > > Thanks, > > Annie > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2008 Report Share Posted December 1, 2008 Annie, We suspected PANDAS and were angry that our pediatrician and the neurologist he referred us to both dismissed our concerns. But the school nurse told us several kids in the district had been diagnosed with it. We insisted that the neurologist order a strep titer test. (If yours won't - ask him/her to explain in writing why they feel it's not necessary - I bet they'll end up ordering the test for you). Ours came back negative. But at least now we know and we have a baseline should symptoms come back strong (our son developed a severe tic after his two strep infections and went away after his body fully recovered). A strep titer test will give you data. It may tell you whether you have to live in morbid fear of strep or not. But like others have said, the treatments will be the same as it is for regular OCD (therapy, possibly SSRI medication, lots of patience). We were appalled at the lack of support we recieved from the medical comunity. Our therapist has been our lifesaver. > > There was mention in the Freeing your Child from OCD book about a subject > who had PANDAS OCD and would get blood titres and some type of IV > transfusions. I was wondering if anyone has done that? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2008 Report Share Posted December 1, 2008 > > > > There was mention in the Freeing your Child from OCD book about a > subject > > who had PANDAS OCD and would get blood titres and some type of IV > > transfusions. I was wondering if anyone has done that? > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2008 Report Share Posted December 1, 2008 Okay, I know I have asked this before, but I never got any clear answers. Does anyone know if the titers have to be elevated at all times? Or only during an active strep infection? Hugs judy ________________________________ To: Sent: Monday, December 1, 2008 1:09:04 PM Subject: Re: PANDAS > > > > There was mention in the Freeing your Child from OCD book about a > subject > > who had PANDAS OCD and would get blood titres and some type of IV > > transfusions. I was wondering if anyone has done that? > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2008 Report Share Posted December 1, 2008 I remember you asking this before, Judy, and wondering about the answer too. I wonder if that would be a good question for Dr. Geller, since I don't recall anyone answering. How was your Thanksgiving, Judy? How'd the kids do? Hugs, BJ > > > > > > There was mention in the Freeing your Child from OCD book about a > > subject > > > who had PANDAS OCD and would get blood titres and some type of IV > > > transfusions. I was wondering if anyone has done that? > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2008 Report Share Posted December 1, 2008 From my understanding (my son has PANDAS) it is only durning an active strep infection Re: PANDAS I remember you asking this before, Judy, and wondering about the answer too. I wonder if that would be a good question for Dr. Geller, since I don't recall anyone answering. How was your Thanksgiving, Judy? How'd the kids do? Hugs, BJ > > > > > > There was mention in the Freeing your Child from OCD book about a > > subject > > > who had PANDAS OCD and would get blood titres and some type of IV > > > transfusions. I was wondering if anyone has done that? > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2008 Report Share Posted December 1, 2008 Now I'm the one who's confused. I thought I had read that the titer test needs to be done 3-6 weeks after the infection. That initially your antibodies ramped up to fight the strep but then due to molecular mimicry, they also went after the basal ganglia and didn't come off of high alert/attack mode even tho they had wiped out the strep. Eventually, yes, they go back to normal levels, but only after they've gone to work on the brain. And the next time you get strep, the OCD gets worse, because the antibodies have already trained themselves to go back and attack the basal ganglia again. We had our test done 3 weeks after the rapid strep test, thinking that if it was PANDAS, the titer level would still be high even though the infection was gone. Am I wrong on this? If I am, I might be wrong to assume my son doesn't have PANDAS. Sure would help explain why his severe tic has only happened the two times he's had strep and why, 5 weeks after the strep, it has gone away. BJ's right. Judy, do you have time to post a question to Dr. Geller? I could use some clarification on this too. > > > > > > > > There was mention in the Freeing your Child from OCD book about a > > > subject > > > > who had PANDAS OCD and would get blood titres and some type of IV > > > > transfusions. I was wondering if anyone has done that? > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2008 Report Share Posted December 1, 2008 You've all gotten me confused now!!  My daughter had a really crazy period with intense bizarre OCD thoughts.  We arranged for a consult at a top university Child Study Center.  Right before we went, my daughter got a case of cellulitis and had to take a course of antibiotics.  After that, her off the charts type OCD calmed down.  I mentioned this to the dr. who did the consultation and she asked if my daughter had had strep.  I said that she'd never had it, but my son (her twin) had recently had strep and does get it.  The specialist told me to have my pediatrician do the blood tests to check for the two strep blood titres and sure enough they were quite elevated.  From what I understood this to mean, it showed that my daughter had actually had strep around the time of her sudden intense bizarre episode of OCD fears even though we hadn't known it.  The fact that she had to go on antibiotics to cure the cellulitis coincided with her OCD levels going down seems to indicate that she has strep related OCD.  I am not sure if she actually qualifies for the strict definition of PANDAS.  The strep titres eventually should go down as they are measuring the presence of antibodies to strep that arise when a child has strep.  Once the strep is cured, with time, the titres should go back to normal.  I also know that my daughter gets strep without any physical symptoms because when I asked my pediatrician about the possibility of putting my da ughter on antibiotics prophylactically, she said we should first do a strep test to see if she had it.  Sure enough, it was positive!! From what I understand this all means is that if my daughter shows an exacerbation of OCD symptoms, I should bring her in for a strep test to see if this might be causing it.  Other than that, she still needs CBT and meds like anyone else. Re: PANDAS > > > > There was mention in the Freeing your Child from OCD book about a > subject > > who had PANDAS OCD and would get blood titres and some type of IV > > transfusions. I was wondering if anyone has done that? > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2008 Report Share Posted December 2, 2008 Hello Judy,  My understanding it that the answer can vary with the individual child and the strain of strep. Some PANDAS children don't get high titers (the " normal " response). How fast titers drop after infection is also variable. The absence of specific biological markers for PANDAS complicates diagnosis. Many lay people and even physicians are under the mistaken impression that elevated Anti Streptolysin O or Anti Strep DNAse B titers are markers for PANDAS. All these antibodies indicate however is that a child has had a strep infection and mounted a normal immunological response. (from http://www.scielo.br/pdf/rbp/v26n4/en_a04v26n4.pdf ) So, yes, titers could offer evidence of a strep infection. If your child is one of those that doesn't have high titers, it is my understanding that it is not " proof " that your child doesn't have PANDAS. Also, in some children, once PANDAS is started, ANY infectious agent can bring about the PANDAS symptoms. My daughter had a huge flairs ups with Fifth's Disease, and also a viral throat infection. I hope this helps. Best Regards, Peggy Subject: Re: PANDAS To: Date: Monday, December 1, 2008, 7:18 PM Now I'm the one who's confused. I thought I had read that the titer test needs to be done 3-6 weeks after the infection. That initially your antibodies ramped up to fight the strep but then due to molecular mimicry, they also went after the basal ganglia and didn't come off of high alert/attack mode even tho they had wiped out the strep. Eventually, yes, they go back to normal levels, but only after they've gone to work on the brain. And the next time you get strep, the OCD gets worse, because the antibodies have already trained themselves to go back and attack the basal ganglia again. We had our test done 3 weeks after the rapid strep test, thinking that if it was PANDAS, the titer level would still be high even though the infection was gone. Am I wrong on this? If I am, I might be wrong to assume my son doesn't have PANDAS. Sure would help explain why his severe tic has only happened the two times he's had strep and why, 5 weeks after the strep, it has gone away. BJ's right. Judy, do you have time to post a question to Dr. Geller? I could use some clarification on this too. > > > > > > > > There was mention in the Freeing your Child from OCD book about a > > > subject > > > > who had PANDAS OCD and would get blood titres and some type of IV > > > > transfusions. I was wondering if anyone has done that? > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2008 Report Share Posted December 2, 2008 Peggy, Thank you for all of this information. My son's psychologist asked me a few weeks ago if I ever tested him for PANDAS. I told him that I did and he did not have it. The doctor said he was certain he did. Hugs Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2008 Report Share Posted December 5, 2008 I agree here. Dccument the chlds' reacton to any illness. My son is on daily antibiotics and still gets the PANDAS reacton after lllness or exposure to strep. It is awful during the school year. The PANDAS episode goes on for months after exposure. The moods, anger, tics, obsessions, and ADD all flair up. Even meds for mood disorders don't put a dent in it. It ususally takes about three months to heal the part of the brain that is affected. Then he gets sick again and the process starts again. That is why IVIG may be the only true treatment. We have tried everything else and nothing else helps. I am looking fr a Dr. in Ohio to try a five day steroid burst. Then proceed with the IVIG if the steroid burst works. Otherwise we are looking at at least 12 more years of these nightmare flar ups. PANDAS doesn't seem to resolve until adulthood. Lok up Dr. Kovasavik at web pediatrics. He is one of the only Dr's curing the PANDAS. > > > > > > > > > > There was mention in the Freeing your Child from OCD book > about a > > > > subject > > > > > who had PANDAS OCD and would get blood titres and some type > of IV > > > > > transfusions. I was wondering if anyone has done that? > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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