pastacey

You have totally nailed it in terms of describing what it feels like to have an unsupportive relative. I have been dealing with this for years. One of my favorite aunts just died and left me and my sister nothing. In my fantasy it is because of my son and her belief that he is just a jerk and i defend him too much. (I thought he was supposed to be over autism and all that stuff, she said to me after his PANDAS descent into the dark side). My father and she decided that a kid who swears is a bad kid, even though I tried to explain the Tourette's stuff). My mother in law and my aunt actually got together on the phone and had their pow wow about how i din't discipline my son enough -- never mind that my daughter is a straight A student going to an Ivy League college this year -- I just must be a bad mother. This is a lonely life here, lonely because having a kid with aggression makes neighbor's flee, or makes me stay away. It turns family gatherings into nightmares. But I have to say the worst isn't what my son does. It's what the ignorant and not compassionate family members do and say. Take for instance: "Get out of my house!" which is what my mother in law said to my son, her grandson, when he had a rage. OK, who is raging now. Pat

Hi, My son tested positive on CAM and others. WE wish to start abx but were told to get some baselines first. What do you recommend? And how can i explain them to my doctor? thanks, pat

Hi Everyone, My son just recently received positives from Cunningham and I am trying to get my DAN to order a panel of baseline tests before we go on antibiotics. I gave a list that I took from this board and they don't know what some of the stuff is. So here is my question. What tests would you all recommend for baseline and can you be specific enough so that a doctor who doesn't know much about PANDAS etc can understand. 1. Immune status panel -- can you define this for the doctor? 2. C3D immune compound -- what does this mean? -Micoplasma? is that pnumonia antibodies panel?? Thanks, Pat

Forgive my ignorance -- perhaps it was Augmentin that he reacted to, but that was ten years ago, and he just got a rash on his face. he does though have mold allergies still, which come and go. He weighs about 98 lbs. How do you define high dose specifically?

I Live in Massachusetts. I love Dr. L so much and trust her -- not to say that the other PANDAS experts are not as lovable. My son has had this problem for 6 years. We did try antibiotics once for about a month three years ago with no noticeable results. Thanks, pat

Hi, Son has rages, anxiety, swearing, OCD, some tics, driving ADHD and bipolar symptoms. All can on at same time when he was 7. Out of the blue. He became a different person. Now he has ups and downs. Meds don't work well. We are waiting for the amazing Dr. L's interpretation of the Cunningham results but it could be weeks. She is taking time off. I love her dearly and want to be patient. Sill, I'm frantic to understand. Son tested in Cunningham as follows: CaM kinase - 150 (mid- PANDAS range) anti-lysoganglioside 320 (above normal mean which is 147) anti-tubulin 250 normal range anti-dopamine-1 2000 (above normal mean which is 1056) anti-dopamine-2 4000 (normal ranges) Pat If this were your kid, what you would you do while you wait for Dr. L? Should I consider this PANDAS for sure? Are there any doctors out there who can tell me their interpretation? Should I approach my DAN doctor about giving abx? He is willing to do so. Son had a rash with Bactrim years ago so noone has giving him penicilin for years. DAN is willing to try.

My son is 13 and has had PANDAS symptoms for six years. Now he tests in the median on the CAm test. Is there hope that he can improve or has he had PANDAS too long? I'm frightened. Such a sad life's story for the past six years -- lost friends, lost face, traumatized family, alienated grandparents Very sad. Any hope? xx, patti

Hi, I suspect PANDAS/PITAND in my son. He had a dramatic change of personality six years ago. What we began to see what sudden swearing, rages, mood swings, swearing repeatedly and then stopping and saying he didn't even want to do that, flipping out if we told him to stop something, obsessions with video games and tv shows he formerly could easily turn off, tearing things off of walls, cutting up sheets with scissors. He also started freakishly begging to measure the school perimeter, and almost desperately needing to count the tiles on the walls. His foot began tapping and he needed to turn around every time he reached a stair landing. Every time he answered (and still has this problem) the phone he had to do some weird ritual. Had bedtime ritual of saying something every single time. He received a diagnosis of chemical sensitivities and lots of new allergies. He reacted to anything, hairspray, paint. Suddenly sugar was like giving him a psychotic drug. He would fly into a rage the minute you gave him a banana. Over time we were able to reduce these behaviors with diet, micronutrients and a bit of lithium. But even still, at school they see all kinds of weird behavior -- suddenly he start making noises out of the blue, he clears his throat loudly repeatedly, can't help but get into people's personal space and make annoying sounds to but them. Then if they say to get away he'll start to get angry. Too much punishment can result in a rage now. He had a trauma three weeks ago and everything is so much worse. Then he started having to pee frequently for about a week and he eventually had a really sore throat. They said it wasn't strep. I had it tested twice. No strep, but the doctor said it looked like strep. Now he goes after this kid at school and impulsively or compulsively provokes him almost as if he can't control the urge. He also developed this weird thing where if he had exercise he would get so revved up that it would almost turn into anger, or such ADHD excitement we are all uncomfortable being around him. His excitetment and happiness can turn on a dime into anger as if he's on a teeter-totter. Even lots of laughter can make him disregulated and uneven. He kicked two kids really hard because he got so excited playing with them. They both bled. It was very very sad. NONE OF THIS IS THE INTENTION of my very intelligent, empathic and charming son (which is what he is most of of the time when not stressed) SOS. Do these behaviors sound consistent with PANDAS? There are so many issues here. I thank you in advance for your help, your insights and your compassion. pat

THANKS! Did you ever use antibiotics? What decided spironolactone?

Hi All, I'm new but I've been at this for six years. Suddenly six years ago out of the blue my son developed rages, ticks, compulsions, disregulation, obsessions -- was a different person almost one day. I have not been working with a good doc and have been given some bad advice. They tried antibiotics three years and and it didn't help after a month so they took him off and stopped thinking PANDAS. Vitamins have helped and a bit of lithium but not much. Now suddenly rages are back after being gone several months. He's not safe with peers or in the community. We are considering a boarding school to help him learn to control himself. I realize that meds would work a lot faster if this is indeed PANDAS (I'm convinced it is). -- the question is can behavioral teaching help these kids minimize their compulsive urges, vocalization, or rages? Second question: Can young people in their twenties begin to manage this behaviorally at all? What does it look like when one is an adult? thanks, pat

I am new and having trouble understanding my son's troubles. He changed dramatically six years ago after viral infection, possible strep too, and exposures to toxins. He became emotionally labile, had rages, ticks, impulsivity, loss of focus/concentration. Now he has good days and bad days, good moments and bad moments. I never feel sophisticated enough to understand why. He is so responsive to everything -- foods, chemicals, moods -- how can you parse out if it is strep related, viral related, or just autoimmune?? Is this something a specialist could figure out? Thanks, Patti

Hi All, I'm new. My son is a close match to PANDAS symptoms, including rages, Tourettes, frequent urination during exacerbation, OCD, obsessive behaviors, ADHD, S.I. problems (after having been relieved of them, they came back with a vengence). All of this came on really suddenly six years ago. The symptoms wax and wane, getting worse when son is exposed to virus or strep (or chemicals or sugars, etc). So here are my questions: Currently he has low titers. Does anyone know if Dr. Bouboulis works with low titer patients? Also, would PITANDS show titers? Thanks, Pat