lynn

We are trying psych drugs to see if we can get a little traction this school year (sophomore year for DS 15.) After Intuniv flopped spectacularly (had the evil combination of both rage and inattention) Dr decided to try a straight stimulant under the heading of some people have tics get worse, some better and some stay the same on them. So we tried the lowest possible dose of concerta,which is the longer lasting form of Ritalin. Miraculously, his HW is getting done and with that, huge amounts of anxiety are getting relieved. DS just came up to me and hugged me to thank me because he could pay attention in class (this was the first day he had class since be started concerta. ). However there is a major downside. His tics have gone up quite a bit. DS is willing to put up with this, but I'm a little concerned that the tics will continue to worsen. Also, he says he feels a bit edgy. So there may be a bit more trial and error, but for this week anyhow we are happy, dreaming of having our child be functioning and self sufficient. Interesting that itvis adhd drugs that seem helpful

I know this sounds like black magic, but the thing that worked the best for us was putting duct tape over the wart and leaving it there (replacing as esthetically necessary.) The warts were gone in about a week. BTW, on one occasion, warts appeared as a result of gradually increasing olive leaf extract and vitamin C to get at viruses. As we increased the dose, the warts appeared, then left a few days later. Didn't use the duct tape on those.

Right now it looks like Clarithromycin is bringing him back to about 50%. IVIG, no lasting help. CBT, a bit of help and we are restarting it now. We decided to trial Tenex, but due to the incredible incompetence of our new (soon to be ex) pediatrician, we can't get clearance for it.

FWIW--DS had pandas symptoms on and off since age 6 and he is 15 now. We tried a steroid burst two years ago. Bad news is that he didn't get any relief, possibly because he hadn't been on antibiotics first and lab tests indicated later that he had had an active infection at the time when he was prescibed the steroids. However, the good news is that he has always been an active ticcer and there was absolutely no increase in tic activity. I know this is anecdotal and you would rather have real scientific info, but at least here is one case of ticcing not increasing from steroids.

http://www.ncbi.nlm.nih.gov/pubmed/21868033?dopt=Abstract

That is such great news! Sad that as parents we have to learn to save up these few moments when things are right for our children. On the other hand, the joy of getting to know your "real" son is more than parents of unafflicted kid will ever know.

DH was totally in denial about DS for many years. We went all the way through two IVIGs with (I think) DH thinking that it was a load of hooey. What changed for us was when he became science tutor for DS and saw first hand what was going on. At first he thought it was bad behavior but I showed him some research on CBT (which he did understand) and since then he has been clearer on getting treatment. However, this sent him into a deep depression that is still a problem. I counter that by always working on a plan for the path forward. He is and always will be deeply cynical and skeptical of all treatments until they are shown to work (and even then is likely to attribute them to coincidence.) Although it is lonely being the one advocating for treatments that are outside of the physician mainstream, on the other hand I have decided that he is my BS detector and that is something that I treasure! The main toll that I am worried about is on our health. We have both gained about 20 poinds over this, and neither of us was underweight to start with. After reading LLM's excellent post on how to deal with behavior, we have both resolved to start exercising and stop some of the destructive habits we have fallen into (sadly goodbye to the glass or two of wine everyday to "smooth things out" oh well)

Oivay, I hope you don't mind a whole series of questions! Who did you see at CHOP? Did the first treatment not work, and if so, how did you decide to do a second treatment instead of deciding the whole thing didn't work? Did your insurance pay? Is your DD on antibiotics now? Sorry for the barage! We are looking into this as well! Lynn

Thank you for all the suggestions, my dear friends! I will update with results. DH doesn't believe that I can ask for referrals and get such good info back so fast

I know this has been asked before, but I can't find it. Has anyone found a psychiatrist in the North East who understands PANDAS enough to try a really low dose of meds with me for DS15? He has improved some on clarithromycin, but he's still nowhere near 100% (maybe 50%.) If you know anyone, could you PM me? Thanks, Lynn

I know this has been asked before, but I can't find it. Has anyone found a psychiatrist in the North East who understands PANDAS enough to try a really low dose of meds with me for DS15? He has improved some on clarithromycin, but he's still nowhere near 100% (maybe 50%.) If you know anyone, could you PM me? Thanks, Lynn

You know that certainly sheds some light on a few arguments that DH and DS have had. DH would try to make DS go through problems and explain why each step was done, and DS never could, so DH would become angry and accuse DS of guessing. Even without this byplay, DS' ability to explain math has certainly gone way down since the big exascerbation last year. He is fluent in Lithuanian because that is all my MIL speaks to him, but his Spanish was really bad last year--short term memory problems plus too anxious to study.

This came up on my PubMed alert (that also sends me info about Panda habitat.) Don't have the full article, but it does seem significant -- spinal tap shows bands that appear to relate to immune system. Mov Disord. 2011 Feb 1;26(2):343-6. doi: 10.1002/mds.23403. Epub 2010 Oct 19. Oligoclonal bands in cerebrospinal fluid in patients with Tourette's syndrome. Wenzel C, Wurster U, Müller-Vahl KR. SourceClinic of Psychiatry, Socialpsychiatry and Psychotherapy, Hannover Medical School, Hannover, Germany. Wenzel.Claudia@MH-Hannover.de Abstract Since a postinfectious or autoimmune etiology is suggested to be involved in the pathogenesis of Tourette's syndrome (TS), we investigated oligoclonal bands (OB) of immunoglobulin G (IgG) in cerebrospinal fluid (CSF), indicating a humoral immune response in the central nervous system. CSF examinations including isoelectric focusing to analyze the presence of OB were performed in 21 TS patients [17 men/4 women, mean age = 29 ± 12 (SD) years]. Isoelectric focusing showed the presence of positive OB in 6, borderline bands in 2, and serum and CSF bands ("mirrored pattern") in another 2 patients. Clinical data did not correlate with CSF findings. Thus, 38% (8 of 21) of our patients exhibited pathological CSF bands. Since none of them suffered from another disease known to be associated with OB, our results suggest an association with the pathogenesis of TS itself and point to an involvement of immunological mechanisms in TS pathology. Copyright © 2010 Movement Disorder Society. PMID: 20960488 [PubMed - indexed for MEDLINE] http://www.ncbi.nlm.nih.gov/pubmed/20960488?dopt=Abstract

I was not advocating for histamine increase by posting this--it was just interesting to me! However, DS's histamine is low and I had tried antihistamines on him several times with no effect at all, so this at least explains that little piece of information. Once again, as other posters noted, each of our children is different.

http://www.scientificamerican.com/article.cfm?id=treating-tourettes Treating Tourette's: Histamine Gene May Be Behind Some Tic Disorders A genetic mutation causes low histamine levels to be produced By Sonya Collins | June 2, 2011 | 2 Share Email Print Image: Illustration by Thomas Fuchs Tourette’s syndrome is most pronounced in children. The physical and vocal tics, which can alienate kids from peers, are difficult to treat. First-line drugs are limited in their efficacy, whereas more effective antipsychotics have many potential long-term side effects, including weight gain and movement disorders. Investigators may be moving closer to a new treatment option involving drugs that already exist. Last year researchers identified a new gene mutation associated with the disorder. Known mutations have only explained a small number of Tourette’s cases, so the investigators, led by Matthew State, co-director of the Yale Neurogenetics Program, studied a rare family in which the father and his eight children all had Tourette’s. In these family members, the gene involved in the production of histamine in the brain was shorter than normal, generating lower levels of the compound, which is involved in inflammatory response. State believes these lower levels can cause tics, and he is looking for this and further histamine-related mutations in other people with Tourette’s. Now scientists have found parallels between this family and histamine-deficient mice, which furthers the connection to Tourette’s. Most individuals with Tour­ette’s have low prepulse inhibition, meaning that they are more easily startled or distracted than the average person, says Christopher Pittenger, director of the Yale OCD Research Clinic. In May he was to pre­sent new data to the Society of Biological Psychiatry that both this family and mice missing the histamine gene had low prepulse inhibition and tics. Other experiments have shown that histamine-boosting drugs decrease ticlike behaviors in mice. Histamine is known for contributing to allergic reactions and keeping us awake at night, which is why antihistamines are available over the counter. But it is also a neurotransmitter found throughout the brain, including in a region associated with Tourette’s. The findings suggest an alternative to antipsychotics, which reduce tics by blocking dopamine. As dopamine levels drop, histamine levels rise. Increasing histamine directly, without blocking dopamine, may work as well and avoid many of the side effects of antipsychotics. “Other people with Tourette’s may have other changes in their histamine system, so it’s quite possible that a histamine-boosting drug may have benefits, but it’s still very early,” says Kevin McNaught, vice president for medical and scientific programs at the New York–based Tourette Syndrome Association. Drugs that increase histamine are already being tested to treat other neurological conditions, as well as attention-deficit hyperactivity disorder, which is often found in people with Tourette’s.

I think my doctor just charged it as counselling visits

We tried this several years ago, so they may have made some treatment advances. First we went to a university that was running a clinical trial on it. Our main concerns were tics and ADHD. After several weeks of treatment, the ADHD was quite a bit worse. Then we went to a quite sophisticated neurologist and had several weeks of treatment that made tics worse, then several weeks of different treatment that brought them back to baseline. Bottom line for us at that time was that Neurofeedback may be quite good for a relatively simple case of ADHD. It certainly seemed to have an effect, however at that time it appeared that no one understood what the effect of any electrode location/intensity would be. The result was sort of like watching the Sorcerer's Apprentice because you could never tell what was going to happen. After a while we got tired of being guinea pigs and moved on. Might be different now, but I would ask for credentials and case histories before plunking down any money or letting them glue any electrodes to anyone's head.

Thanks for the good wishes! Hope it sticks for a while! DS is 6'1" and 195 pounds so he gets the adult dose, 500mg twice a day.

DS15 is one of the unlucky ones that has not had any real help from anything--no major help from Augmentin, azithromycin, omnicef, steroids. Did 2 HDIVIGs, got a couple of good weeks. Bloodwork still indicates something going on with immune system and the Cunningham test put us squarely in PANDAS territory. Eventually, we stopped antibiotics because they didn't seem to be helping the slow downward spiral that DS had entered. As we went into finals and NYS regents exams we were at a just terrible point, with DS unable to study at all, constant rage and depression, and all of our lives deeply horribly affected. We went to guidance counselor and started crying in her office and begged her to fix it so DS wouldn't have all 50s on his freshman year finals. She (bless her sweet heart) went to all the teachers and asked them to skip some exams and give extra study time for others and we limped into regents review time with not too bad a hit, but nowhere near what DS can do when we have our real child present. Meanwhile, we went to visit Dr. T and he gave us some blood work to get tested and suggested that we might want to try biaxin since both DH and I had had pneumonia when DS was younger. We started the biaxin and within a week DS had a 103 degree fever and intense joint pain. I was terrified that he was allergic to it, but after a day or so the fever cleared and the joint pain stopped. And, here is the kicker, two days later DS went into his room and started doing review problems. He is still doing them. Regents are Wednesday and Thursday for Chemistry and Geometry and he is looking like at least high 80's, maybe better, on both. We had been planning the summer with the assumption that both regents would have to be retaken in the fall and that considerable remedial work would have to take place and now (please no jinx) it looks like we may be able to have a real summer. I realize that most abx lose their effectiveness with time and that the puzzle isn't solved, but this interval is such a gift from God. DH and I were holding everything together, but you could see the fray marks and note that we had both gained at least ten pounds and likely were working on liver issues. I am full of hope again.

I think Mayo was one of the participants in the 5 day intensive clinical trial that DS participated in this Spring. If that is the case, we didn't have any problem with PANDAS or non pandas because we didn't discuss it--our aim was OCD coping skills and we got a lot of them. No one mentioned drugs. Problem was that the considerable gains we made didn't last. The research was set up that no additional counseling from Fordham (where we took the intensive) was allowed for 3 months and during that 3 months we had a bad exacerbation. Don't know if having follow-up would have helped or whether the exacerbation would have blown through the CBT tools anyway, but we did feel a bit at sea. Now that the exacerbation is lifting, we see signs that the CBT stuff is still there.

I'm so glad that things are looking up! I just wanted to add that whole process of trying to glue normal school life onto a child with PANDAS in exacerbation is just appallingly hard. However, with my son what we have seen is that if he was at school, even if he was in that state where anything a teacher or parent said about, say, geometry, appeared to mean nothing but "blah blah blah" to him, he is still actually learning. When things are a little better, the information reappears, apparently having been neatly filed under "other". For my son, the problem with bad grades is that the OCD/anxiety/ADHD fuzz makes it too hard to read and understand the questions, not that he doesn't know the answers. If your DS is like mine, you may find that he can actually sit for some of the exams when things are better, especially if your guidance counsellor is willing to do it on a provisional basis.

Thanks Wendy and Justine. I was able to get through to Dr and he said the same thing--this could be a herx, if he has no rash it is likely not Stevens Johnson, give him some motrin and let him sleep a little. Very relieving, and sorry to be such a ball of nerves. It has just been so long since he had a fever that I don't know what to do anymore! I will keep track of sores and stuff for the next few weeks anyway--it will make me feel better.

DS15 started biaxin a week ago at treatment dose. On Saturday he started complaining about joint pain. Today he has a fever of 101-102, headache, slight cough, slight scratchy throat. I took a look at biaxin (clarithromycin) side effects, and saw the Stevens Johnson reaction is a possibility. does anyone know how long after starting biaxin this could occur? Or how long until the rash might start? Or what else this might be? He has no rash now, eyes were red yesterday, but this happens often for him. I am really worried. What would you do?

Thanks for posting this--so it looks more and more like glutamate plays a key role in at least some forms of PANS--but how does the immunological part play in? I hope that they straighten this out soon, and not only for my family's sake. Still, I'd hate to have DS be one of the last victims of the epidemic--I'd rather have him be one of the first cured!

GNC only had it in 50's so I took that.