bronxmom2

We got our number this morning... 160 Blood was drawn at the very beginning of an exacerbation... I was going to wait because I thought he was OK, just started to see telltale signs and realized that Dr. L would ask for these numbers, so I did the draw. Over the next week and a half we got worse and worse, then finally talked dr. into zithromax and he was better in 3 days. I have all the confirmation I need. Also, my husband finally believes. This is huge. All I can say is... Kathy in Dr. C's office is an angel! She sent me these numbers on Saturday of a holiday weekend!

Oh, and my the way dcmom, I would definitely, aggressively pursue treatment.

Yeah, I'm anxiously waiting for mine too. I actually went away from my computer all day, hoping the results would be in my email when I finally checked it. None yet, oh well.

Thanks for posting, Eileen. I've been looking for him! The other good thing is that, in his old practice anyway, he took insurance... Is he prescribing prednisone and IVIG/PEX? We saw him in the springtime, and he did not seem ready to actually DO anything then. Though he was an interesting guy!

The ADHD question is a biggie for me. Last year (during first big PANDAS exacerbation) our school insisted my ds be evaluated for ADHD... we did a psych evaluation and the evaluator did not think he had ADHD. But I felt like I may have fudged the Conner's scale a little... because I did not want the ADHD dx. Then again I have a guilt complex myself. In the end I don't think the evaluator would have told me "he does not have ADHD" if he thought my ds did have ADHD, just to tell me what I wanted to hear. He hit every ceiling on the WIAT (achievement test) except writing and numerical operations... precisely the two areas where our kids' brains somehow mysteriously fail them. He is seven, understand advanced mathematical concepts, but counts on his fingers. It certainly looked (and looks) like ADHD much of the time (and my husband believes he has a severe attention deficit) (and the school certainly thought so), but I always knew it was something else, more complicated. He can focus, but his body never stops moving-- at the dinner table or anywhere else. If we ask him to do something that's difficult for him (write something) he freaks out. I mean real psychological pain. It took me a long time to understand that he genuinely could not do it.

Dr. Latimer's number is 301.530.9200

Hi, I can really relate to your blood running cold when the teacher calls. I also think I have PTSD... or rather TSD because I haven't gotten to the "post" part yet... I know when I get this all settled I'll need some help myself, after so many years of bracing myself while my son tries to interact with the world. Congrats on the peace at school.

Hi, see the post below, we are all trying to figure them out.

Here are my son's-- age 7: anti-lyso 640 Anti-tubulin 1000 anti-dopamine 1- 2000 anti-dopamine 2- 4000

post yours and I'll post mine, at least we can compare. Gotta put baby to bed but I'll be back.

Hi, I received an email with the "antineuronal antibody titers" today from the Cunningham people, but can't make sense of them. What are the anti-lysogalglioside (this is only one that looks really elevated for my son); anti-tubulin; anti-dopamine 1 and 2? The anti-lyso looks really high but the others are only on the upper edge of normal range. Do the Cam-Kinese come separately? Or are these the anti-dopamines? Thanks!

SF Mom, I just wanted to say that you seem really on top of it-- seems like you really acted quickly to help your son, and that's great. You should be proud of that.

Hi, my son-- after being off antibiotics since late June-- is having an exacerbation. I took him to his pediatrician yesterday and he was willing to try zithromax. (The antibiotic that worked in the past was Cefdinir, but after reading so much about zithromax on this board, I wanted to try it) He seemed perplexed about how to prescribe it long-term though. He said it's not normally used more than a few days. He gave me enough for 5 days (7.5 ml daily of a 200 mg/5ml suspension... so I guess that's 300mg daily... my son weighs about 55 pounds), said there would be a little excess and it would probably last 7 days... plus the prescription has two refills. So I I have enough for three weeks. We have an appt with Dr. Latimer on Sept. 18, so I wanted enough until then. The pediatrician told me the insurance company would probably only cover the first 5-day prescription, and I would have to pay for the other two out of pockets. I didn't realize zithromax was so different from other antibiotics (longer half-life, etc.) How do you get insurance companies to cover zithromax prophylactically? How long it usually take zithromax to work? Cefdinir seemed to work faster... but I just gave him his first dose of zithromax this morning, so I know I should be patient. Also...Is it OK to treat him with so much zithromax before going to see Dr. Latimer? I just can't let him go on like this for 3 more weeks... Thanks!

pixiesmommy... what's happening? Are you guys OK?

He is supposed to go to public school, but I want to homeschool... though by homeschool I guess really mean "never at homeschool"... we fight a lot so it might be a terrible idea. He went to a highly sought-after public gifted school for K and 1st, but I pulled him out, it was too stressful.

Hi dcmom, Personally, I would not send her to school, but I know that might not be possible for your family. I would immediately switch to a treatment dose of antibiotics, and don't bother culturing. I would ask to extend the steroids, I'm not sure how that would work... I guess stop the taper, hold at what she's taking, and taper a little later.

My son is only manageable when I tell him exactly what to do, as in: you must sit in this chair and read until I tell you to get up. If he gets up and starts roaming around the house we immediately have fireworks, screaming, and tears as he does one inappropriate thing after another-- fill up water balloons in the kitchen when I've asked him 20 time to stop, spraying water into his baby brother's face, throwing the ball against the artwork in the living room. It's like he can't manage his own existential freedom for even a second and doesn't remember that he just got in trouble. I've had to cut him off from other children because there's always so much conflict, inevitably tears, and I just can't take it any more, I really can't. So I feel like I've had to put him on lockdown to keep calm and peace in the household. I can't imagine sending this child to school. The minute you give him any leeway, he goes bonkers. I've never been able to send him to camps, classes, etc that other parents take for granted, because very few people besides me can handle him. He should be starting second grade next week. He is intellectually very advanced in some areas (reading) but definitely has attentional problems. It took me a while to recognize some of his behaviors as OCD, obsessions with certain toys and an incredibly obnoxious insistence on new toys, incredibly persistent in his demands. We do much better when we are out of the house, it's easier to simulataneously provide structure and content, so we go to museums, zoos, exhibits almost every day. Luckily we live in NYC. It's gotten to the point where I literally cannot spend a day with my own child at home, I'd rather eat glass. I'm going to get antibiotics next week (hopefully tomorrow) and know that will help... have to get that prednisone somehow... but what I'm seeing does not exactly match what others describe, I'm wondering if this sounds familiar?

I could be totally wrong about this... But isn't the issue with our kids that their immune systems are really overactive-- won't stop creating antibodies? And isn't what makes Swine Flu so very very dangerous for healthy young adults (as opposed to young kids and old people, who are usually most vulnerable to flu) is the possibility of cykotine storm-- which is basically, as far as I understand, the immune system going crazy trying to fight something and then drowning in itself. (sound familiar?) If the real danger is the cykotine storm, maybe have the immune system slightly suppressed is not a bad thing?

Mine was healthy too. In fact I always considered him the picture of health. A healthy, exuberant kid. Except the strep.

dcmom, Do you have the contact info for Dr. Trifilletti? I can't find him since his move. I also met with him and found him very knowledgeable, smart, and deeply interested in PANDAS... but, alas, he did not seem like he was going to do anything.

To compare a parent's overwhelming concern for her child who has debilitating OCD with OCD is silly and offensive. Raising kids is hard, and parents need to give it their all just to give their kids--even those who are not struck with a crippling and poorly-understood disease--a fighting chance of growing up healthy and happy. Good parents buy into being more or less preoccupied with their children when they decide to have children--otherwise, they should buy a fish instead, right? Obsessions, as they pertain to the disease OCD, are by definition irrational preoccupations. Is your concern for your child and your effort to cure him irrational or disproportionate to the severity of the problem? asaxon, honestly, I don't always know-- is it irrational? I know my family (including my husband) think I am looking for excuses for a difficult child, and this adds the weight of doubt to the whole ordeal. (My mother's attitude is something like, "if you think there's a problem, then you'll create a problem, so believe there's no problem and everything will be ok.") (Meanwhile I suffered acute psychological pain for 20 years while she believed there was no problem.) One thing I'm asking about is... there's a genetic component to this that might make it harder for some of us. Also, my son (and others here it seems) does not present with classic OCD, fearfulness, anxiety... it is more an obsessive, intense attachment to objects and ideas.

Yes, but at what point does the obsession undermine our efforts to help our children? It's sometimes hard for me to stay focussed on the goal-- getting someone to treat my son-- because my own mental health issues start popping up when I am under so much stress. Today I had a panic attack in a Fed Ex store because they refused to ship the little styrofoam cooler containing the serum samples I was trying to return for Cunningham's study. I was actually hyperventilating. In front of my children. The manager picked up the phone and I think she was calling 911.

Last night I was crying about my son, the difficult day we'd had, the panic I was feeling, the fact that no one else believes there is something wrong with his brain that has to be treated... My husband, in a rage, suddenly shouted, "YOU ARE OBSESSED WITH THIS CHILD!" I have to admit, he had something there. I mean... I have more than a bit of OCD myself, and this frustrating PANDAS situation is the perfect funnel for it. Does anyone else feel... obsessed with their children?

Hi Seansmom-- welcome. One thing stands out to me in your post-- is the constant insistence on new toys really an OCD symptom? My ds7 is also incredibly obsessive about his toys and play fantasy, and the insistent begging for new stuff to fuel his obsessions results in almost daily tears. Funny, I would have thought of this as selfishness, not OCD... good to have a new perspective. I think this forum is the closest thing to a national group. Researcher, prominent doctors, etc. refer to it respectfully when they talk about PANDAS.

Yes, I think the food definitely had something to do with it, I am fairly careful with his diet here but there's still so much poison everywhere. He takes fish oil here too, but maybe the norwegian fish oil is better too? I will ask him dad to send some. Sometimes I am tempted to send him over there for an extended period. I suspect everything is healthier there, the air, the food, the culture, the schools,-- definitely the health care.