Santi

My son tested positive for STREP F after an anal culture. I am trying to find out why his titers are high to rule out PANDAS. Has anyone had experience with STREP F? I am having a hard time googling it. Andrea

I really appreciate you detailed feedback. It has been most helpful. Andrea

Hello, I am new to this forum. My son (age 7) has Tourettes among a multitude of other dx's. At what age do other kids start to notice? What is your child's experience with other kids? Has anyone had to deal with other children making fun of your child? If so, how did you handle it. We haven't had to deal with this yet. Andrea

Hello, I would like to find out for certain if my son has strep because of the high numbers of titers presently in his body(ASO=984 & DNASE B= 234). He had a throat and rectal culture done today. If that comes back negative, what are other tests that can be done to check other parts of his body? Andrea

I plan to see Margo on Tuesday. I am looking forward to it. Thanks to all! Andrea

I googled her. Did they tell you she is a pediatric psychiatrist? I could be very wrong, but I think psychiatrists, whether they "get" PANDAS or not, are limited in their treatment options. But, if she knows enough about PANDAS and can work cooperatively w/ another physicians, it could work out anyway. She is a child psychiatrist.

Hello, I contact NIMH about PANDAS doctors in the bay area and I received a call back from someone who works with Dr. Swedo. She gave me the name Dr. Charlotte Hamilton MD @ 900 Welch Rd. in Palo Alto (tel# 650-321-5321). I was told she is a PANDAS expert who worked with Dr. Swedo at NIMH. Has anyone heard of her? Andrea

Hi Vickie, My son has had behavioral problems since age 2. It started with sleep problems and language delays. At 4 he got a PDD-NOS diagnosis which was disputed by Dr. Siegel 1 year later. At age 6 he got an anxiety and adhd diagnosis from UCSF. He has always struggled with hyperactivity, impulsivity, anxiety, aggression, anger. The tics and OCD really started surfacing around age 6 more significantly but I think he had it earlier and I didn't recognize it. Today, every so often his tics can be so alarmingly that I think he'll end up in the hospital because of necks jerks. He also does, jumps, claps, vocal noises. His sensory issues somedays are so bad that he is driving to school naked in the car because he can't handle wearing clothes. His violent temper can be alarming at times. There are holes in our doors, broken lamps, you name it he's done it. There have been a few times I wanted to call 911 but just couldn't bring myself to it. Then, as if transformed overnight, he's mellow, compliant, handles clothes, no tics. Ahhhh, that felt good to get off of my chest. That's what I've been dealing with to say the least. I'm looking desperately for some closure. Andrea

Are these two types of antibiotics specific to this type of disorder? I'm new to this. Andrea Azithromycin and Augmentin are 2 of the more popular abs on this forum. Some PANDAS kids do have success with other abs (such as amoxicillin, keflex, penicillin etc.) But, Augmentin and Azith. are among the "stronger" antibiotics and tend to have higher sucess rates for PANDAS treatment. Some docs prefer to start with "smaller gun" antibiotics such as penicillin or amoxicillin but bear in mind that they don't work with many pandas cases. And even with the stronger antibioitics (augmentin, azith), many pandas kids end up needing more: IVIG, plasmapheresis, steroids... Have you read Saving Sammy? Sammy started with penicillin (I believe) but eventually needed to be on high doses of Augmentin XR to get good sustained improvement in symptoms. For us, Azith. was the most effective antibiotic (it was the 4th one we tried). Amoxicillin did nothing. There is a fair amount of amoxcillin (and thus pennicillin) failure in strep. Here's an article that explains it: http://www.entrepreneur.com/tradejournals/.../169459644.html Thanks for the article! I know it can vary, but how often are PANDAS kids generally treated with abx yearly? Is it recommended to follow with pro-biotics. The antibiotics worries me especially if its too much. What's the word on that? Andrea

I've been reading a lot about PANDAS lately and I'm a bit confused about it. Most articles state "a sudden onset of behaviors (i.e.tics/ocd, etc.) after a strep infection. Does this mean that the PANDAS actually created these symptoms for kids? My son has several DX's including tourettes and ADHD but he's had it for a while. We've noticed problems with our child since the age of 2. In his case, are these 2 seperate entities and PANDAS might just be exacberating his conditions? His problems did not come on suddenly however sometimes they become much worse suddenly. Andrea

Are these two types of antibiotics specific to this type of disorder? I'm new to this. Andrea

See pandasnetwork.org. Talk to Diana, she's in the Bay Area. I appreciate it. Andrea

Thanks. Its so nice to have the specifics. I will try it. Andrea

Hello, I am new to this forum. I have a 7 year old son with multiple DX's: ADHD, Anxiety, Tourettes, Sensory, Language Disorder and OCD issues. Occassionally his tics/OCD become alarmingly severe and he has violent outbursts. We had the following tested: ASO (score 984) and D NASE B (score 284) so they were both high. What do we do now? His regular pediatrician doesn't know about PANDAS and he plans to refer my son to the infectious disease department at KAISER (have a feeling they won't know either). We live in San MAteo (CA) which is near SF. Are there any experts out this way? Not sure what to do. Please help. Andrea