harmony

Is anyone completely p%^^ed off? I did not think that I would be THIS mad! And why is the woman not choosing good questions? I have submitted 5 good ones- lets challenge him!!!

My side=Polish (my mom) Hungarian (my dad) My husband=Italian (his mom) ? (his dad)

Harmony: How do you test for a strep infection in the sinuses? I really want to know because I think that may have happened to my ds9 last month; when our doctor gave him antibiotic for strep "smell" and negative throat culture. You could smell the strep on him, he continually has sinus snorting and such, hard to sleep ect. But last month was worse and the smell. The smell went away after antibiotics. They (ENT) swabbed his nose. Yes his breath smelled like rotten meat- i don't know if it was strep in particular that i smelled or just the "general infection". His immunologist, and all the ER staff noticed then mentioned his smell as well.

I just tried to fill out the application for March. It asked for the name of the person or organization who would be receiving grant. Should I put "University of Oklahoma Biomedical Research Center- Madeline Cunningham". I also got stuck on some questions like: How long will your project take to complete? Less than 1 month Less than 3 months Less than 6 months 6 - 12 months Can you start your project at any time? Yes, it's ready to go. No, it needs to start at a specific time. (should I just put Yes- since it has already started?) It also wants an image to represent the cause- any suggestions? Would I need to get permission from Cunningham before sending this in? Boy- this is a lot more complicated than i thought.

I am totally with you on your opinion of Beth Maloney's idea of titers. But I got my cards in the mail and plan on sending some out today! My husband and I are attending the autism one conference in May- I am really curious to hear what everyone has to say about the titers. I can only afford to attend 1 day of conference- I plan on seeing: 1:45-2:45 pm Dr. Madeleine Cunningham and Dr. Susan Swedo: Autoimmunity and Behavior: Sydenham Chorea, PANDAS and Related Disorders 3:00-4:00 pm Dr. Rosario Trifiletti and Lynn Johnson 4:00-5:00 pm Dr. M. Elizabeth Latimer and Laura Matheos, MBA: PANDAS - A Clinical View and Treatment Options

I would love to do this- and I have time tomorrow. Just tell me what I need to do!

Thanks for posting this. I live in the Atlanta area and am always looking for an experienced dr. I just wish he took insurance

Thank you so much for all your replies!

I was going to tune in of curiosity. Dear Friends, Due to the pending snow storm in New Jersey we unfortunately must postpone the webinar scheduled for 7:30pm on 02/10/10 to a date yet to be determined. When we have rescheduled this webinar we will email you an invitation with the date and time. Kelley L. Teabo, Project Coordinator NJ Center for Tourette Syndrome & Associated Disorders, Inc. 50 Division Street Suite 205 Somerville NJ 08876 T: 908 575 7350 F: 908 575 8699 cid:73A6F9D6-6B13-497D-ABCB-7D47A9EA2327@local www.njcts.org

Is it necessary to test for titers after a positive culture? I have heard so many people say different things. My son has not had his titers checked in 4 years-both tests (ASO and AntiDNAse) came back negative even after a positive culture- but the blood was taken within days of the positive culture. He is recovering from a very bad strep infection in his sinuses right now- he is clearly not back 100% (neurologically) yet- should I do the blood work? If so, what would be the point?

I don't know how to start a poll- but my son just had one 3 weeks ago- still to early to tell.

I appreciate the offer but we are only going to attend the conference on Friday.

Or white! Pure light, light, light! O.K. What about White, yellow and green? Green background with white and yellow lettering?

I just made reservations too! We should try to get everyone together!

Just the other day my daughter, age 11, said, "it's like my brother is possessed- like in the scary movies. When is he going to get better and STAY better?" She knows that this is a part of PANDAS- but she still gets upset sometimes when she sees her almost 7 year old brother go through this. It has been a LONG 4 years. I just showed her your post and she couldn't believe it, "OMG they are talking about my brother!!!!!" I do have a question: Do the titers really matter- when you already have a positive culture- should you still test titers? (he just had 2 sinus surgeries in the past 3 weeks to rid heavy growth of strep A in nose- he became SOOO sick he ended up in ER and then emergency surgery)

My son's pediatrician diagnosed him when he was 2 years and 9 months old after he woke up a COMPLETELY different child- 2 days after Positive strep test.

You can certainly try to call the lab- just call, the worst they can say is "no". I tried calling labcorp and the hospital lab before - they both told me that the results can only be given by the ordering dr.- but once they get the results they can make you a copy. (I get copies of all labs from the dr. for our personal records)

WHAT A GREAT WEB SITE. BOTH OF YOU MUST BE SO PROUD. I LOVED THE BACKGROUND "I AM NOT OBSESSIVE, I AM NOT OBSESSIVE....."

So, they were sending out for cultures on positive rapids? We only sent for cultures if the rapid was neg. The tests were done by the dr. (pediatrician) that diagnosed my son with Pandas- so every time we went into the office for any reason she tested both kids for strep. Then the test ALWAYS came back positive. The dr. never had patients that always tested positive- so she began doing cultures. Well.....most of those came back negative (except for the few positive- when one obviously had strep throat). The pediatrician then referred us to an infections disease dr. who said they are carriers. That was years ago and both have had plenty of negative rapids - but they still get both tests done.

I don't know how the carrier is defined. I've never tested my ASO before, just not long ago, did once and it was high. Yes, after strep infection, ASO would be high. But I did not notice when I got the strep. I guess maybe my ASO is always high. Doctors here said maybe very high percent of adult have high ASO, if it does not show anything wrong with it, don't need to care about it ( I don't know if this is correct or not). I am just thinking not to infect my son if I have strep. My daughter is a carrier. Her ASO & AntiDnase have always tested low. I think carrier would be chronically culturing positive for strep, without active infection (symptoms of strep throat). Both of my children kept getting positive rapids- so the ped began sending off cultures. They were tested over 20 times in a year time period and always had positive rapids and the majority of the times =negative cultures. The ped was so confused and sent us to an infectious disease dr. The ID dr. said it just meant they were carriers.

I'm in Alpharetta,,,,where are you again? No i have not found anyone to work with. I am still exploring many avenues. Have you found anyone? I live in Canton- right up the road! We have many dr.s that we see- none of which have "really" helped us. What kind of dr. are you looking for? Please feel free to PM me if you have any questions or would like to meet up sometime!

Do any of you live in GA?

I can smell a sinus infection - smells like rotten meat- very strong smell. My sons last sinus infection (the one that sent him to ER and in the surgery room twice) was cultured and came back as strep A- so yes it can be in the sinuses. I don't recall ever smelling strep throat though- I will definitely be on the lookout though!! Thanks for sharing this

Did your child have tics/OCD before PANDAS? I answered "no" but I wanted to clarify. My son has had OC tendencies (does not interfere with life) from a very young age- but it doesn't become a disorder (disabling him) until strep.

I have never been tested. I called the OB/GYN 3 years ago- so we could avoid an unnecessary test- and found out that I was never tested- my records state that I refused the test. ?????? I don't remember that. But the Immunologist and ID both said that the test is not always accurate and they would test him again even if I had a negative test during pregnancy. I am trying not to think about it too much-the thought of this diagnosis scares me. I was happy with the neg. test results years ago- and we are praying for another negative.