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Rain

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Rain last won the day on May 14 2015

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  1. I have been away from this forum for a long time, but now need some help. My DS14 was diagnosed with PANS nearly 5 years ago. Since then we have had ups and downs. He has had antibiotics, IVIG, steroids etc. He was a patient of Dr. K and now a patient of Dr. T. I feel like Dr. T and Dr. K have saved his life. Sometimes he has no symptoms at all. Usually he is about 85%. We have declared 85% is "good enough" most of the time. Recently he has been depressed. No significant increase in OCD or other classic PANS symptoms. I don't think there was a specific trigger - but he admitted to picking up a knife with the intent of committing suicide. Dr. T recommended some counseling. The first counselor we saw said he needs a psych eval - and the counselor will not work with him unless he is evaluated by a psychiatrist. He has seen three psychiatrist in the last 5 years - and every time they just want to medicate him, and are not supportive of a non-medicated approach to therapy. I don't want to be a bad mom here - I have nothing against meds per se. I just know that most PANS kids do not do well on many of them. My son does not want to go on meds. I think if we forced them, he would be really mad, and probably even more suicidal. (I have tried to tell him we would go low and slow - but he will not be persuaded. Maybe it is an OCD thing.) My questions: Broadly - what do you think I should do? Are there supportive psychiatrist out there? If so, how can I find one? Are some medications tolerated well by PANS kids? Which ones should be avoided? Background - He has gone through puberty. At first I was optimistic that we were seeing the end of PANS - but obviously things are bad now. He is currently on a full dose antibiotic (Suprax) - initially for a sinus infection. He has been on that for about 70 days now. His blood titers for things like strep and mycoplasma have only improved in the last few months. There is no Lyme (tested many many ways and times). His blood indicates chronic sinusitis - but also appears to be improving. We will probably try one more IVIG this summer - but at his age it may not work. About 6 months ago he developed a facial tic - which was a new symptom for him. We saw a neurologist who prescribed Guafacine. My son did not want to take it - so we did not force it. The tic is hardly noticeable - so we just chose not to fight that battle. Thanks - I appreciate any help you can offer!
  2. Update - I did talk with Dr. K. He recommended the "Streptozyme" test. After the negative ASO and AntiDNASE, the streptozyme WAS POSITIVE. I feel like I should know by now that it is always strep, even if we never get a positive test result. Now we will treat for strep (again - we already did one course of treatment) then do a 5-day steroid course (per Dr. K). Dr. K thinks the tics will resolve in 2-3 weeks.
  3. Thanks all. Re Dr. K - I have been trying to contact Dr. K. In response to my email, he said my son's file is closed,and I have to call his office. I have called the office a few times, and keep getting the answering service. I think I will get more aggressive about calling. Re stress from school/allergies - maybe. It started a couple weeks before school started. He was having allergies at that time, but the allergies have subsided, and the tics remain. They may even be getting worse - but it is hard to say because they vary from day to day. Re strep carriers - I don't think so. Everyone in the house gets tested "all the time." No one new has been around, and no new animals. He did start school - but that was after the tics started. He seems so happy and otherwise healthy. I would leave it alone, but I have am terrified of a full scale relapse. Thanks again for your thoughts.
  4. My DS who is almost 14 has suddenly developed a mild facial tic (about a month ago). Tics were never part of his PANS presentation. It is not debilitating, and hardly noticeable. He is currently on prophylactic augmentin, but no other medicines. We increased antibiotics for 10 days with no change. We also got his blood tested, and all levels are normal, and strep titers are at an all-time low. Background: Around October 2010, DS developed sudden OCD. In April of 2011, he had not improved with CBT and EPRT - so medication was recommended. Almost as an afterthought before writing the prescription, his psychiatrist said, "And we've ruled out strep, right?" DS got a rapid swab that day - which was positive - and our lives were suddenly changed forever. We tried antibiotics, saw some improvement, but the improvement did not last. Ultimately we found our way to Dr. K, who recommended IVIG. Our treating pediatrician ordered the IVIG at a local hospital using Dr. K's protocol. It seemed to work for about 8 months. He then relapsed in May 2012 due to a pneumonia infection. He got a second IVIG in Sept 2012 (this time administered by Dr. K). Though the second IVIG took longer to "work," since about March of 2013, DS has been 90% symptom free. He is well into puberty (voice lower, and he is 6 feet tall). Questions: So what do we do about this tic? He does not notice it, and it is most pronounced at night. He has no other PANS symptoms. Is it worth doing anything when it still almost completely OK? Do you think this is an indicator of a different infection? Thank you for any guidance you can offer!
  5. My son needs the lab "circulating immune complexes (c1q, C3d, Raji cell immune complex). Dr. K wants the tests run. I asked my local pediatrician to put in the lab order (for insurance reasons) - and neither the pediatrician nor the lab "know what those test are." The lab suggested that they are genetic tests which would require us to get insurance per-authorization. Is that right? If not, is there a code or another name or something? I googled it, but could not figure it out. Anyone have guidance? Thanks so much. Background (in case you are interested): Long story condensed: DS 12 was dx with "classic" PANDAS (sudden onset ocd and positive strep infection) in late 2010 (age 10). After trying other things with little improvement, we saw Dr. K who recommended IVIg. We convinced our local pediatrician to order the IVIg in August 2011 - and it worked! For about 9 months we saw 95% recovery. Then in summer of 2012 he regressed - to about 50% recovered. Dr. K suggested a second IVIg (Sept 2012) but my DS did not improve, in fact he declined even further. By December 2012, he was the worst we have seen him. We tried different antibiotics with very slight ups and downs, but no significant change. We had his throat swabbed like 5 times - and all the family members swabbed multiple times - no positive cultures. Finally - in February 2013 - we ran blood test -- sure enough - elevated AntiDnase levels (significantly higher than before the second IVIg). So, now we're decreasing antibiotics, and running a full blood work up to try to see what is going on. Hence, the question. Thanks again.
  6. (Sorry for all the typos! On mobile device!)
  7. My DS12 had his second HD IVIG 10 weeks ago. After first IVIG (August 2011) we saw recovery after 12 weeks - which increased gradually to about 90% recovered. He hovered at 90% until he got pneumonia in May 2012 - and slid to say 40%. He bounced back to 75% recovered over the summer so we decided on a second IVIG in September 2012. About a week after his 2nd IVIG - his OCD came back in full force - as bad as I had ever seen it. He was in Augmentin 875 twice a day. I hoped he was just "turning back the pages," but instead of improving, he got worst. We continued the high does Augmentin. On my insistence tried the "Saving Sammy" dose of Augmentin XR. That made him "worse yet" so we switched back to regular Augmentin (and he was maybe slightly better). Finally about two weeks ago we switched to Zith. The Zith seems to be better - but he is still way way worst than he was prior to his second IVIG - maybe up 15% from his worst. Is it OK to panic? We could do a steroid, but the Dr. recommends we hold off so not to undermine the IVIG (I admit - I do not understand how steroids interfere with IViG). Other ideas? What have I done? I feel like I should have left "well enough" alone. Suggestions welcome. Thanks.
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