purple66p

Tantrums--We sent ours in 9/13. I understand--I obsessively checked email as well! I think they must have a lot of work, probably because this board is so active!

My son started Augmentin (1000 mg, 2x/day) a couple of weeks ago after a 10-day larger dose (2000 mg, 2x/day). He is certainly worse with regards to loss of temper, losing it at the slightest provocation, especially in the evening. He holds it together for school and (mostly) when playing with friends. We have to walk on eggshells to keep him from losing his temper. Homework was a nightmare with lots of writhing on the floor as if in pain. He yells for a half hour before he can sleep; I'm talking full out, as loud as he possibly can. I think this is a compulsion, or a reaction to a compulsion to finish whatever project is on his mind. He'd try to stay up all night if we let him and work on his projects. This is really taking a toll on the whole family, especially my daughter. What next? Back to higher Augmentin? (I think we may have seen some minor improvement on that, but it could have been just wishful thinking on my part!) Ask for Zithromax? How much for 120 lb kid? Our family doctor is being very helpful. I posted here yesterday about his Cunningham results, which showed very high anti-Lysoganglioside. I expect we're going to end up at IVIg at some point, but I doubt if the family doc is experienced with that.

We got the rest of the Cunningham study results today. I think they just confirm that my son does have PANDAS. Cam Kinase II: 177 (in upper half of Pandas group) Anti-Lysoganglioside: 1280 (80-320 normal) Anti-Tubulin: 500 (250-1000 normal) Anti-Dopamine 1: 8000 (500-2000 normal) Anti-Dopamine 2: 8000 (2000-16000 normal) Has anyone else had such a high Anti-Lysoganglioside? Regarding Anti-D2, my son takes Abilify, which acts as both a D2 agonist and antagonist to regulate D2 levels, so I wonder how that affects his score. I posed this question to Adita Blanco, who sent me the results from Dr. Cunninham's lab. I'll let everyone know what I learn there. According to Dr. Cunningham the high Anti-D1 and D2 mean that there is too much dopamine running around in his brain. (From Dr. Cunningham's letter "Antibodies may induce increased signaling of neuronal cells and cause release of too much dopamine in the brain.") I find it interesting that ADHD is generally thought to be a lack of dopamine signaling, and schizophrenia is thought to be too much dopamine activity. My son definitely leans toward the not-quite-in-touch-with-reality end of the spectrum when things are going badly! Thanks for reading my long and rambling post...

My son was initially diagnosed with BP & OCD, but I am now thoroughly convinced that we've been dealing with Pandas all along. I think the rages my son experiences are triggered by frustration at not being able to carry out a compulsion. I'm not a big fan of antipsycotics, but I think they've been a lifesaver *literally* for my son during his worst exacerbation. What I don't like is how difficult it is to get off of them. When we tried to take him off of Abilify before he had a psychotic episode. Of course, I believe the psychiatrist tried to do it too quickly. Funny, I got a copy of his chart from her and that time period was missing...We are now very, very slowly reducing his Abilify, but I don't know if he'll go off completely until I'm convinced the Pandas is in remission for at least a year. So...I don't really like that we've gotten on this dependence of antipsycotics, but I dislike the trauma of putting kids in the hospital more. I think to most psychiatrists Pandas looks like bipolar disorder, or at least how they've redefined bipolar in children, and they treat it with WAY too many meds, many of them to overcome side effects of others. Be wary of a bipolar diagnosis is all I'm saying.

I suggest that you talk to your doctor about possibly trying Abilify rather than Risperdal. While riperdal had an immediate positive effect on my son's behavior within a day of starting it, he gained a lot of weight very quickly on it and the positive effect wore off rather quickly over the course of a few months. He's been on Abilify for a long time now and it also has helped stabilize his mood but has a much better side effect profile. (However, it is very expensive and if your insurance doesn't pay for it, riperdal might be a better choice.) Zoloft might very well be making things worse, as Prozac did with my son.

"Attention seeking behavior." That's what my son's first public school said about him. I hate that phrase almost as much as I hate ODD (oppositional defiant disorder) as a diagnosis. That's a description of the problem, not a diagnosis!! Do you think kids really want negative attention! No, all kids want to succeed. It is our job (parents and the school system) to figure out how best to help them do so. Great news about the 504 plan working for you. Unfortunately, after many years of my son being tormented at public school, we switched to a private school that specializes in special education (or, as they say, kids who learn differently) and this is the first time he's been happy to go to school. I really want to believe that public schools can work for everyone, but it was just a disaster for us.

I knew, in theory, that other parents were dealing with this, but I didn't realize it was so common in the Pandas population. I got to practice my parenting during rage skills just last night, which was a great let-down because I thought we were doing so much better! Mostly, I tried to stay very calm and not let myself get dragged into feeling the same out-of-control emotions as my son. (Years of therapy for me to be able to do that.) Like your son, momcap, this was over homework. I think my son was obsessing over having his friends back over to play some more--don't even get me started on them knocking at the door after we told them that he had homework to finish--and just couldn't let go of that thought. He had already played for a pre-determined amount of time, and if we "give in" he'll play until well after dark and then he really is too tired for homework. I would offer some hope to the other parents with younger children. My son's rages started at about age 6-7, and he was way out of control back then. He was very violent to both himself, with the dogs, and to me especially. With many years of play therapy during which really analyzed what his feelings and emotions were, and drew out a plan for what he could do when he feels like this, he is at least able to communicate somewhat during a rage. For example, last night while writhing on the floor he was able to tell me that he tried to calm down but it just didn't work. He said that he has only a few seconds to try to stop the rage from the stimulus or thought to the loss of control (but that's a few seconds more that he used to have!) At one point he picked up a dining chair to lob and when I reminded him "no physical violence" (a mantra in my household) he chose instead to balance the chair on his head. It was touch and go for an hour last night--going between mini-rage and calmer or at least distracted. Anyway, years of therapy have allowed my son to communicate more during a rage and to attempt to calm himself down, if only by distraction. Actually, typing this all out has made me see that we've come a long way in the past few years! Thanks for the free therapy, guys! P.S. Another thing that might help some of you guys: When he finally got started back on his Algebra, he had me write at the top of the page "I am very stressed out about doing this homework." Somehow having it written down what he was feeling helped him to let go and get to work.

I've been trying to understand these tests better, so thanks for starting the thread. Regarding EAMom's post, does anyone know: 1. The specific antibodies to GABHS: are these ASO and A-DNAS B? 2. Are the tests, described in Dr. Cunningham's letter to me "We measure the levels of antibodies against the neural antigens lysoganglioside, tubulin and dopamine receptors D1 and D2." associated with Strep only like the ASO and A-DNAS B? 3. Is CaM Kinase II activation only associated with Strep, or can it be from other causes?

Thanks everyone for your advise on dosing. Our doc called in 1000 mg 2x/day & last night we started back up with the antibiotic. This time with the XR version. She called in 3 refills, so 4 months total. Hopefully that will be enough time to see some great improvements and we can extend if needed! His problems have been going on for 6+ years and we've only recently started treatment, but I'm determined to remain optimistic. Thanks for the warning that there will likely be some ups and downs, but we can hope for an overall upward trend. He's on a lot of meds right now, but I think we can start gradually bringing everything else down and see how he does with the antibiotic, although I think we'll keep him on a small dose of Abilify for now. My understanding from Dr. Cunningham's work is that Pandas screws up the dopamine system, and Abilify is supposed to level out dopamine, supplying more where needed and less where needed. As I've mentioned before, he had immediate and dramatic improvement when we first started Abilify, but it seemed to diminish with time. However, I'm afraid to take him off completely because last time we did that was a total disaster! Thanks again!

My son completed a round of Augmentin (regular) 4000 mg/day divided into two doses on Friday for an ear infection. We saw some improvement in his symptoms during that time, but yesterday was sort of a bad day. Our family doctor is willing to extend the antibiotics--she's great & has been reading all the info I sent her--and asked for my recommendation for dosing. Would you guys share what doses their kids are on? I know it will be different for every kid, but is 4000 mg/day too much long-term? I understand the "Saving Sammy" does is 2000 mg/day. Also, it has been suggested that Augmentin XR might be a better bet long-term. My son is 13 and 120 pounds. Thanks!

Thanks for the reminder. I listened to all three when I first learned about Pandas a few months ago and even took a lot of notes but I didn't think to reccomend it.

Fixit: I got it as a prescription from my psychiatrist. They have another product called Deplin which is for depression. It has only 7.5 mg methyfolate. The CerafolinNAC is: 2mg Methylcobalamin 5.6mg L-methylfolate 600mg N-acetylcysteine From their website: "Up to 70% of those with depression may have a compromised ability to break down folic acid into L-methylfolate, the only form of folate that can be used by the brain to make serotonin, norepinephrine, and dopamine." I think you could probably put it together yourself if you don't want to go the prescription route. I used to get methylfolate from a pharmacy (a local one that has lots of good supplements and is also our compounding pharmacy.) Be sure to look for methyfolate; it is different and more usable than folic acid. Methylcobalamin is B-12, again in a more absorbable form. My son's doc also adds B6 is P5P form; I haven't added that to my regime yet, but I probably should. I have no doubt that my son inherited his methylation problems from me. CJ

So here's a (long winded) update: 1. We saw the neurologist. He agreed that it was possibly Pandas but stated that "the treatment is the same [as for other OCD.]" I'm going to try to educate him a little better and also continue educating our family doc. I want to stay with this neurologist, for now, as we reduce and eliminate the bipolar meds since he has a lot of experience there. 2. We're at day 8 of the Augmentin for the ear infection. The ear is much better and I *think* the tics are better. He's had a few fits--not to the point of the rages we've seen in the past--but somehow they seem habitual. He started to go into total obsessive mode this morning before school, but then he just let what he was obsessing about go until after school and we got to school on time. I need to journal better to really track the ups and downs! 3. We got the CaM Kinase II results back today: 177, which puts him well within the upper half of the Pandas group. I was feeling squishy about whether we were dealing with Pandas after so many years of calling his problems "bipolar" and "ocd," but I'm now comfortably in the Pandas camp! I'm going to share the Cunningham results with the family doc and ask to extend the Augmentin and FIGHT THIS DISEASE WITH ALL MY MIGHT! Thanks to everyone on this board for your support and encouragement. I'm so glad I found you guys!

I take N-acetylcysteine, which is a precursor to glutathione, for depression and it seems to help. It's actually a methyl-B12, Methylfolate, NAC supplement called CerefolinNAC. It is my understanding that glutathione is not well-absorbed directly (thus the shots, I guess.) I was told to add Vitamin C to reduce the chance for kidney stones. My son takes a B12/B6/Folate/D supplement in a rub-on cream form, but I haven't added NAC to his regime yet. I'm guessing his dose would be the same (he's 120 lbs) as mine, which is 600 mg.

DS13 has had an earache since the weekend that just wasn't getting better, so off to the family doc today. (We saw her last week to get her up-to-speed on PANDAS and she was very receptive to reading the pile of literature I laid on her.) It turns out he had a pretty yucky ear and, based on what we discussed last week, she started him on Augmentin, 2000 mg am and 2000 mg pm. However, she prescribed the standard 10 days. I'm hoping that he will improve and I can go back to her for a longer treatment if it does help. My question: can we hope to see any improvement in PANDAS symptoms in that length of time? We're off to the neurologist tomorrow--we'll see if he considers a PANDAS diagnosis or finds something else. Poor kid is sick of doctor appointments!

We did not have good results with Prozac. My son complained of "brain flashes." I think he was describing flashes of light or an electric-zap feeling. One thing that really helped with aggression and rages was Abilify. However, the effect seems to slowly wear off and we had to continuously increase the dose, but it made a huge, almost overnight improvement with tantrums and aggression. However, these days I want to get him off the antipsycotics and see how he handles things--I don't like that he's gained so much weight on them and I worry about the long-term effects. I've also been told that it can make OCD and tics worse, so pick your poison!

We saw our family doc yesterday and she seemed open to PANDAS. I love this doc; she's been taking care of all of us for 10 years, always gives hugs and asks how everyone if the family is doing. She was not very familiar with PANDAS but as soon as I made the appointment she started researching. I left her with a stack of journal articles to read and my letter from Dr. Cunningham. She wants to research further before starting treatment but is very willing to work with us. Yeah! I told her about the standard treatments as I understand them. I suggested starting with Amoxicillin XR & let her know that some folks had to go to high doses or add Azithromycin. (She seemed worried about the clavulanate causing diarrhea--anyone have problems with this?) I also discussed the steroid burst and she seemed OK with 5 days but worried about longer. (My son has had periods of what we've called mania in the past.) And then I told her about long-term IVIg and/or PEX. She made a face then and said "I hope we don't have to go that far." She's very interested in seeing the Cunningham results. Anyway, to get to the point, she asked me for doctors that she could call to consult with. I'm perusing the boards and it seems like Latimer, Kovacevic, Trifiletti, and Dr. Infante would all be good. I don't know which to suggest first, although I'm leaning to the latter since he is closest to us geographically and he came highly recommended by someone on the board. (Not that the others aren't highly recommended!)

Is anyone else on Abilify? This drug is supposed to "regulate" D2 receptors (increase where needed, decrease where needed.) My son has been on this for many, many years. He initially (within 1 day) has a very positive response, but gradually it wears off. His doc has raised it several times, but it always wears off. I'm wanting to get him off (he's gone from being a thin waif to a chubby kid since being on it) but dropping antipsycotics is ugly. (We've tried once before and rages went up 10x as well as depression.) I'm interested in seeing what we get on the antiD2 test.

Thanks, everyone! Labcorp was great--they didn't charge us either. We sent the sample off on Monday this week. I hate to be impatient, but I can't wait to get the results. How long did it take for others to get their results back? We have a doc appt with a neurologist at the end of the month, and I want to have all my ducks in a row before then. CJ

We're in the same boat. My son is 13 and was dx with OCD and bipolar at 7. Now we think it was probably Pandas. I can't really answer your question, but my son just finished 30 days of amoxicillin a week ago. A few days after finishing, his tics really ramped up. I'm not sure if they got better with amoxicillin, I just know that they've gotten noticeably worse since going off of it. This if further complicated by the fact that at the same time he had a new stressor (going on a 3-day camping trip with school) so I can't say for sure that it was going off the antibiotics that increased his symptoms. I still don't feel like we've got the right doctor or are following the best protocol yet, but I'm going to keep pushing to follow what I understand works best (Augmentin XR or Zythromax.)

Sorry to hijack your post, but is convergence disorder common among the PANDAS population? My son has this as well as problems tracking line-to-line. He reads as little as he can get away with. Also, I've been able to buy many of the novels for school in large print online.

My son has severe dysgraphia. You can look through his school work and see his handwriting degrade year-by-year. His teachers will allow him to type almost everything, which also has the bonus of spell-check. Maybe she could use a lap-top in class? Of course, he still has to write out math and he takes about 4x the amount of paper space!

Yes it is compounded. I was very pleased when my son first started using it he immediatly started sleeping better.

My son's doctor prescribed a 4-ingredient cream which is directly absorbed through the skin because he believes that his gut is not properly absorbing the vitamins that support methyation. It includes: methyl folate, methyl B-12, P5P (Vit B6), and vitamin D.

I'm so glad they did the Mystery Diagnosis show! My oldest daughter (22) happened to catch it (she's away at college.) Up until now, she's been pretty impatient with my son. She has told him that the treatment for OCD is to learn to get over it. After seeing the Mystery Diagnosis show she called me and asked if ds might have PANDAS. We were finding out about the possibility about the same time and I had not told her yet. So, it was very gratifying that her mind is becoming more open to her little brother actually being sick and not just obnoxious! Maybe she caught the Tourette's show also--she's kind of a medical TV show junkie. Note: please don't take my comments about my dd as criticism. I'm sure you all know how difficult this disease is on the other kids in the family! He first became sick when she was about 14, which is a really difficult time for her parents to become distracted and overwhelmed by another kid in the family. I worry all the time about how my son's illness has affected his two big sisters!