KaraM

My non PANDAS son broke out in a rash toward the end of a strep infection (a.k.a. scarlet fever). My PANDAS daughter also broke out in hibes, but it was an allergic reaction to amoxycillan (and I can't remember if she was on that because of strep or ear infection). But your comment about the bloody nose makes me curious. My daughter get bloody noses, too, but they seem to have increased in frequency and severity over the past few months. I think I'll post a quesiton asking others about that.

Thanks, Karen. Could you share with me your Doctor's name and where s/he is located? Kara

We had her blood drawn on Monday, March 15 and fed ex'd the sample to them. They received it Tuesday. So it was essentially 2 full work weeks to get the initial results for one of the tests they run. I'm still waiting for the second test and a formal report. Kara

Hi, We just got initial results on my daughter's Cam Kinase II levels. They were 189. So it looks like we are officially part of the PANDAS club. I want to get our pediatrician to prescribe another round of antibiotics and I'm wondering if anyone can give advice. I read the FAQ's about different abx working bettter for intra cellular strains of strep vs. extra cellular. But how do you know which your child has? A little history. First, my daughter is allergic to amoxycillan. So I think the eliminates Augmentin from the choices. Am I right? Second, she started/finished a 14 day dose of Omnicef between the middle and end of February. The dose was slighly above what is typically recommended for her age/weight (7 years old 52lbs). I appreciate any thoughts. Today is Saturday, so I know it's going to be a little difficult gettting medical help. But I want to start my daughter on abx a.s.a.p. Thanks, Kara

That's so strange. The bottle I have looks just like the one for the powder you provided the link for (mine says powder, too). But it has that clause about the silicon dioxide... Thanks for the links, Kara

HI, We started giving my daughter Inositol a few weeks ago. We bought it at a small organic food store, "A New Leaf". It says it was manufactured for "A New Leaf" and contains no added sugar, salt, dairy, yeast, wheat, soy, preservatives, artificial colors or flavors. I was in Whole Foods the other day and found Inositol there, too. The brand is Jarrow Formulas. For ingredients it lists: Pharmaceutical grade Inositol and silicon dioxide (in trace amounts). Does anyone know if I should be concerned about the silicon dioxide? Does anyone have experiece with the Jarrow brand. I'd love to switch because it's about half the price. Thanks, Kara

I"m not sure yet whether my 7 year old daughter has PANDAS, we are still in the diagnosing stage. But we definitely experience this roller coaster as well; ith really bad days and then "relatively" good days. We rank each day on a scale of 0 (no fear) to 5 (including rages, fits, tantrums). If you look at her chart it is very much a roller coaster ride (although we very rarely get below a 2). Last week she had 4 or 5 days of 2's, then BOOM, a screaming tantrum in which she also pushed and hit me - all because I touched her brother's contaminated Ipod then touched a book of hers. For the rest of the day, I was contaminated and could not touch her, prepare her meals or anything. It took me so off guard. Although I think I did a decent job of keeping my cool, I had a very difficult time controlling my own emotions. I was devastated. Can you tell more about Dr. L's comments about PANDAS kids not having good days? Thanks, Kara

Thank you for your reply. She has not had any tic bites that we are aware of. We aren't the best at checking, but try to if we are in an area with a lot of deer. I'll ask our doc about having a test done anyway. Thanks again, Kara

Thanks for your reply, Vicki and the links to the threads. When you mentioned the positive strep, are you referring to her strep 2 years ago? Her December throat culture was negative (another child in her class was positive). Thanks again, Kara

Nancy, I am so new to this board. What does PM mean? We live in Salem, MA. Where are you? Thanks, Kara

(I hope I'm posting this reply correctly....) Thanks for your advice, Dawn. We do have an appointment scheduled for June 9 with Dr. Fuhlbrigge at Children's Hosptial in Boston. He is head of the rheaumatology department and PANDAS is listed as one of his specialties. Our pediatrician referred us to him. June 9 feels like a long time away, though. I feel like I can argue both sides of the case with the information we have right now. I find it interesting and helpful to see what other people think. Often they come up with questions or ideas to pursue that I would never have dreamed of.

Hi, This is my first post. I've searched some of the older posts and find them somewhat helpful, but thought I'd just ask for opinions nonetheless. My 7 year old daughter started exhibiting OCD symptoms toward the end of November/Early December. I had heard a little bit about PANDAS, so we had the doc do a throat culture done at the time. It came back negative. In the meantime we proceeded with CBT/ERP and I continued researching. I learned a bit more about PANDAS and that the throat culture may be negative. I also learned 2 other kids in her class were experiencing either OCD symptoms of Tics. I suggested the boy be tested for Strep and it came back positive. Based on that trend we pushed for antibiotics for our daughter. So in mid February she started a 14 day dose of Omnicef. Around day 11, her symptoms started to improve. Around 4 days after we stopped, she spiraled downward. We also pushed our doc to have order an ASO and Anti D Nase B test. We were also waiting for the Cunninham test kit to arrive, so it took us a while to get her blood drawn. We finally managed it about a week ago and just got the titer results. They were both slightly above normal. Her ASO was 200 - 400; Her Anti D Nase B was 450. Our doc said this confirms she had strep at some time in the past, but it can't really tell us when. (We know for sure she had it twice over the course of 6 weeks about two years ago. I messed up administering the first round of abx, so I don't think it truly eliminated the first round of strep). Our doc said it would be a good idea to have the tests done again when her symptoms are exacerbated to see if there is a change, so he is going to send us another order. The day she had the blood drawn, was the first day of a five day period where her symptoms were relatively mild (i.e. no rages/tantrums/major attacs - just the minor day to day avoidance of things she thinks are contaminated). Yesterday, she started declining again. Today is questionable. What do you think? Does this sound like it could be PANDAS. Do you think it's just normal OCD waxing and waning? When do you think the best time to do the tests again would be? Thanks to anyone and everyone ahead of time who is willing to share their thoughts. Kara