lynn

I just spoke to him on the phone and he told me to come down for the 3 weeks. Funny, at the time i wasn't sure it helped, but just recently DS said that the 3 weeks had been the hardest of his life and he learned that quitting and lying down in bed (which is essentially what he had been doing) would never be an option again.

The one thing that works for these is Listerene mouthwash, full strength on the sore for at least 30 seconds. Stings a bit, but starts the healing right away. Keep up twice a day until gone. Must be some topical antiviral. It does hurt at first but even at 8, DS preferred that to keeping the canker sore.

Don't have Duane's Retraction Syndrome, however I wanted to report that I found an optometrist that takes Blue Cross here in Queens. Took DS there last Saturday and unsurprisingly he had both the wandering eye and the focussing problems. He doesn't recommend the glasses for DS, just VT. We will give it a try-it was eerie to watch the dr cover one eye, tell him to look to the side, and have the doctor lift the cover and see the other eye looking somewhere else. DS is pretty jazzed to try it. He told the doctor that he often sees double and that he really enjoys reading but avoids it because it is so hard (never told me this). I really hope that this works, because there is a reading problem clearly, and because DS wants it to so much. However, things typically don't work for us. It will be a clever little balancing trick to keep him committed enough to do the work and yet not totally convinced that it will absolutely fix everything.

Very interesting. I've been thinking for a while that DS's inability to concentrate on reading is something like that, but none of our docs have really focussed on it. Is there a special doctor type I should look for?

Sorry, double post

Oh Peg that is entertaining! I don't think so though. He is actually quite picky about what he puts into his body and is quite wary of drugs, both legal and not.

Yeah, the puberty ship sailed a while ago-he has been 6'2" for a few years. There may be something in the "greater maturity" angle, too. He also has gotten into the Weill-Cornell clinic where they get therapy from residents under supervision from the 350 an hour folks but actually take insurance. His current therapist seems quite good, although totally doesn't get PANS. And the camp was one of the academically gifted ones but it was quite small and somehow for the last 2 years they construed themselves as a bunch of bright misfits. This worked well for my extremely quirky son. But still, he has had good therapy, supportive people before, but has been too in the grip of the ocd bullies to do anything with them. Like in the Narnia books, first there had to be a thawing. That's what I want to know about, because when it all goes to ###### in a handbasket again, I want to do this again, whatever it was... Just to answer the other question, the two ivigs were about 2 years ago, 6 months apart.

DS is 16 now and has had PANS like symptoms since he was 6. We have tried all of the treatments, including antibiotics (helped a bit), steroids (not helpful), 2 rounds of IVIG (made things worse), and many many supplements and OTC stuff. Things got much worse last year, with aggression and rage and total inability to deal with school. We tried going to USF for the CBT intensive, but things were just too out of control to get anywhere. Then last summer, several things happened. 1. We tried a trial of minocycline for a month. 2. He went to camp and had an extremely positive experience with very supportive friends. 3. We tried high doses of olive leaf extract as an antiviral and digestive enzymes to help his gut. I don't mean to say he is 100 percent now, but maybe 60, and we haven't seen that in a long time. He still gets angry, but you can actually see him (mostly) control it. So what happened? He had a pretty tough patch when he got home from camp, so we thought the mini wasn't helpful, but now I wonder.

We got an accomodation for extra time for DS when he was going into 8th grade so he could take the SAT to qualify for the Johns Hopkins camps. We didn't involve the school and it was a major pain in the um neck. They denied us twice because all of the data was just not sufficient. Ultimately we asked them what test it was that they were looking for. They told us what test it was(name and edition.) The test was not relevant to DS's problem and we couldn't find anyone to administer it (they all wanted to use a different test and had never heard of the SAT test). Finally, we went to Rutgers, where there was a young woman who needed to have a subject to complete her internship and would administer and interpret the test for $150. Then we had to go through the bureaucratic nightmare of them losing our application no less than 3 times and having to have it Fed Xd again. We got it though, and the good thing is that it is good forever as long as the school stands behind it, through PSAT and for-real SAT. Lesson learned: be really persistent and patient.

Could you tell me about how long it took to get results (whether good or bad) from NAC?

Yes, DH and I both managed to get time off and the school sent homework, which was part of DS' therapy. We all camped out at Ronald McD House. It had a very "moment out of time" feel to it, particularly since there was always food available in the kitchen and dinner was served every night so that we had no responsibilities other than, of course, confronting our various demons. We each got some takeaways--mine was not to be negotiated out of positions I took, DH's was to praise what he wanted to keep and ignore what he wanted to extinguish (basically we both needed to come into the center instead of one being too easy, the other too harsh--really the nation could benefit from this sort of therapy as well..never mind) DS began to learn that he could control his response to OCD thoughts and impulses. We all endured some intense meltdowns in a controlled setting. It was helpful but we still had quite a way to go afterwards. For Zoloft we started at 25 mg and are now at 100 mg--but I'm thinking the higher dose is becoming unhelpful. Dr. appt today so we'll check. Risperdal we started at .25 mg and are now at .5.

I tried a high dose vitamin C regime (2000 mg/day). DS got warts and then they went away. It did improve things and I kept it up for a while (theory was that it was fighting viruses.) It didn't do anything when the big exacerbation hit though. Looking back, the exacerbation was likely some different bug (he eventually tested positive for myco p.), but at the time I just thought the C didn't work.

Hi Iowa DS has had whatever he has since a sudden onset at 6 (with waxing andc waning). Always diagnosed as Tourettes. Now he is 16. He is now trying Risperdal(good results but I am looking for side effects) and Zoloft (no joy yet) and is also taking magnesium and zinc to slow down ticcing, and grapefruit seed extract, Candida Clear and probiotics (not simultaneously)to combat gut problems from taking antibiotics for a long time. The antibiotics stopped working and the IVIG was not successful. But the ERP therapy can make a dent at times. PS Sorry for the Lynn2 post. My telephone thinks it has a separate account but I told it to share with my computer

For those with big kids who rage, (like DS 16 at 6'), I usually go in my bedroom and lock the door. If I can't get there, I curl up in a ball and refuse to respond. It's not that I am afraid he will seriously injure me, however wrestling or trying to push him out of the way is reinforcement for him. A non responsive person is actually much less reinforcing. Makes him unhappy though.

I don't know if I like CANS any better than PANDAS, although the explanation of the acronym (Childhood Acute Neuropsychiatric Syndrome)seems easier. Here's the abstract--I don't know if anyone can get the complete article. The Journal of Pediatrics .Article in Press Moving from PANDAS to CANS Harvey S. Singer, MD AffiliationsJohns Hopkins University School of Medicine, Baltimore, MDReprint requests: Harvey S. Singer, MD, Rubenstein Child Health Bldg, 200 N Wolfe St, Suite 2158, Baltimore, MD 21287., Donald L. Gilbert, MD AffiliationsCincinnati Children’s Hospital Medical Center, Cincinnati, OH David S. Wolf, MD, PhD AffiliationsJohns Hopkins University School of Medicine, Baltimore, MD Jonathan W. Mink, MD, PhD AffiliationsUniversity of Rochester School of Medicine, Rochester, NY Roger Kurlan, MD AffiliationsAtlantic Neuroscience Institute, Summit, NJ Received 29 August 2011; received in revised form 21 October 2011; accepted 14 November 2011. published online 26 December 2011. Corrected Proof Abstract Encountering a previously healthy child with the acute, sudden onset of obsessive-compulsive behaviors, tics, abnormal movements, or other neuropsychiatric symptoms poses a dilemma for most physicians. The differential diagnosis is broad (infectious, post-infectious, drug-induced, autoimmune, metabolic, traumatic, psychogenic, etc), and the selection of rational therapeutic agents is dependent on the identification of a specific etiology or symptom complex. One entity in particular, pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections (PANDAS) is frequently considered because of its apparent association with a highly prevalent bacterial infection. This report reviews each of the required clinical criteria for PANDAS. On the basis of inconclusive and conflicting scientific support for this diagnosis, a broader concept of childhood acute neuropsychiatric symptoms (CANS) is proposed. Although inclusion in CANS requires only the acute dramatic onset of symptoms, we mandate a comprehensive history and examination, consideration of a differential diagnosis, an active search for a specific etiology through appropriate laboratory testing, and treatment with the most appropriate therapy.

One thing about therapists is that you can't be afraid to fire them if they turn out to be bad. Our most recent venture into therapy, a psychiatrist, decided that DS's OCD was a bad relationship with his father combined with odd tics and wanted to give him Concerta (which made him tic) plus Abilify (which theoretically would have stopped them). Why is it clear to me, without the fancy degree and price tag that this is stupid and addresses nothing? Granted, I guess me and DH and DS in full disaster mode are a pretty potent mix and we rolled into his office like a tidal wave. But for that much money, to go under without a trace? Should have fired him sooner.

I'm so happy for you Nancy!

Thanks to all of you for your replies and support! Peg, he does respond to virus/bacteria, but doesn't seem to have anything right now, and he "usually" shows physical symptoms. Can't rule it out though, sigh. It is discussions like that which make DH run screaming into the night yelling, "stop drawing conclusions, it's all random!" As you might guess, I am the one that always tries to connect the dots in my family. I am coming to think it might be the Concerta that is causing this particular problem, or at least making it worse. The description of daily meltdowns is really compelling. Talk to psych tomorrow

Well, of course as soon as I post anything, things immediately change. Yesterday he came home and was just horribly activated. He couldn't sit still, he was mean agressive, and full of paranoid ideas. Got no homework at all done. Got to bed at 3 am, due to sitting around in his room doing nothing. I thought likely it was the Prozac kicking in (it's been 10 days). I stopped the Prozac this morning. Things are quite a bit better today with regard to anger, but still no homework is being done...you know, sometimes the grinding misery of trying every day to fix something that you don't know how to fix is very hard to take. Anyway, I don't know if the Prozac was causing the problem, if it's the Concerta, or if, as DH maintains, it is totally random. I really need an integrative physician that gets PANS. How can I live in one of the biggest metro areas in the world and not have that? OK, rant over!

DS has no problem with oral supplements of Mg but has had surprising (and disappointing) results with Epsom salts baths. On other boards I read that this was detox, but DS never got to being better, it just made him crazy hyper. I thought epsom salts helped the sulfate pathway? Maybe the problem is that our children have some other block that interferes with that?

It is a stimulant--basically Ritalin in a timed release formulation.

Last I posted, we had given a minimal dose of concerta and had a tic outbreak. However, DS insisted that it was helping him and that he could handle the tics, so we continued. Tics were pretty upsetting, worse than I had ever seen with him. Then a few things happened. First, time passed (not an insignificant point.). Then, I convinced the psych. to give a very low dose of Prozac. Finally, I restarted his dose of zinc and magnesium (44 mg zn, 200 mg mag.). I also ran out of clarithromycin and had determined a week or so before that it would be good to stop and did. And for some reason, all the tics stopped. We doubled his Concerta and they increased only just enough to notice. On the OCD front, we wanted to do ERP for a while, but DS is so good at hiding the OCD that therapist thought it was ADHD and some weird form of Tourettes. Finally DH videoed DS in a meltdown and just this week the therapist finally got it. So now I have hope (but no reality yet) that OCD may eventually be better. Prozac hasn't had any real effect yet so in a week or two we may up that. Current problem is that DS has completely stopped all homework and can't study. On the Concerta, he van at least do work when the OCD lets him, which currently isn't often. Wish us luck! Lynn

Bronxmom, what caused this improvement? I am very happy for you and DS

What a wonderful post, and what compassion! Amazing that he has such expression at that age. Do you think that our kids will be more sensitive to suffering of others once they get through this?

I'm looking for a DAN Dr since nothing is helping and DS is in difficulties. I saw that Dr Neubrander is taking PANDAs patients (he usually is Autism based) Does anyone have any experience (or alternatives?) PM if needed! Thanks everyone! Lynn