thereishope

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Was the dysmorphia always present during this exacerbation? At what point did it start?

Definitely in our case. All 3 of my kids don't get symptoms of strep (only one is PANDAS). So, if one child has a known infection, they all go in. Also, if one is directly exposed and I know about it, that child goes in. To add to Airial's statement, yes, there are times when blood test may not need to be run. In the case of strep, if you get a positive rapid or culture, sometimes it may be better not to run blood since if it's the type of child whose numbers don't rise, the doctor gets confused (not the case with a PANDAS specialist). You'd think/hope doctors know things like some kids' titers don't rise, but they don't. When my son was sick, we did not run titers because he had positive rapids and in one instant a false negative rapid, but positive culture. That's all you need for a documented strep infection. And if it is positive, then you know that you also need to check family members. (Well, you might want to check them anyway if your PANDAS child is having a ramp.) But, then you know to put other family members on abs as well, and not just your PANDAS kid.

I just wanted to add that, like Kayanne, my child does not relapse when off antibiotics. As for doing the blood tests to try to figure out if there's an infection and, if there is, what is it, I (personally)would like to try find out what's causing the symptoms. What is causing the inflammation. If my son does get sick again, even if the are willing to give me any antibiotic I want, any dosage I want, I would still want a strep test. For me, it is a way of monitoring his autoimmune disorder. Also, for my son, if it comes back negative, then I know to search deeper or realize something new is going on with him since he's always tested positive with rapids and/or cultures. You can also view these blood tests and search for infection as a way of also help ruling out PANDAS in addition to backing up a possible diagnosis of PANDAS. If your child has a hidden infection (regardless of PANDAS or not) would you want to clear it? As for docs giving meds even with negative tests...well, some kids do have infections with negative test and low titers. Yes, it's confusing and frustarting,but unfortunately, that's what it is.

I'm sorry, but it doesn't seem like the expected teenage self conscious stage. He's obsessing, he's looking for reassurance, etc.

There are some studies and such in the pinned thread at the top of the forum.I would bring enough printouts in the evnet you have some know it all who has the nerve to say it doesn't exist since they've never encountered a child with it. PANDAS Fact Sheet http://www.latitudes.org/forums/index.php?showtopic=6265 http://www.schoolnursenews.org/BackIssues/2003/0903/pandas0903.pdf Columbia Mouse study http://www.mailman.columbia.edu/news/antibodies-strep-throat-bacteria-linked-obsessive-compulsive-disorder-mice Recent NIMH posting http://www.nimh.nih.gov/about/director/2010/microbes-and-mental-illness.shtml?WT.mc_id=rss http://www.aftau.org/site/News2?page=NewsArticle&id=13179

I have not done IVIG so I can only give my opinion on the antibiotic question. With my son, I think the time he was on antibiotics, his body did erradicate the infection. But it then took quite awhile for the antibodies to lower, the immune system to calm down, and in his third exacerbation...for residual OCD to be tackled. I think once the infection is gone, it still can take a long time to heal.

Glad to hear things are going well! I wish your daughter, you, and your family continued health and happiness.

I agree with everyone else. Anything that activates the immune system, can make PANDAS symptoms worse. Also, from what I've read EBV can cause false positive Lyme tests. So, if you were thinking about doing that any time soon, you may want to do additional research.

For those that haven't had their child tested, some school districts will "identify" them after they have reached a grade where they take standardized tests. So, if your child is younger and you wonder, but don't want to go through official testing, you can wait and see. The school contacts you if they fall into the catagory. My oldest (non-PANDAS) was identified this year in the fourth grade. As for my youngest, no testing has been done (standardized testing doesn't start until the second or third grade in our state) and I personally am indifferent anyway.

OMG!!! I am so happy for you and Allie. I admit, over the last few days, I've wondered if you were going to take her but didn't want to ask in case you weren't. I am so happy for you!

I'm assuming you read on her that some PANDAS kids will react in a negative way to SSRI's. If they are taken, they may have to be dosed differently (lower) than what is "normally" given. By weaning her off of the Zoloft, you will at least have a true picture if antibiotics is helping. Otherwise, if she does start to improve, the psych will say it's because of the Zoloft and you won't really know what helped.

I've thought that exact thing before. You'd think more would embrace our children, see them as a challenge they haven't had in awhile, see them as their ability to make a mark in the world and in science. I have no answer on that.

Have fun! Try to relax and enjoy the party! If you see he needs a minute, just wisk him off to the bathroom or something where you can calm him and not have so much sensory stimulation around him. At least with the bathroom, you can go in a stall and everyone else thinks he just needs to use the bathroom.

What is it with SpongeBob and PANDAS? That was the one show that snapped my son out of rages sometimes. Now SpongeBob's smarter than some doctors?!

It's not part of the criteria. It is something that some see as another thing they have in common and it refers to a phenotype Dr K lists on his website, but it's not part of the criteria. So, even if your child is not gifted, it does not in any way mean they may not be PANDAS or PITAND.

SOT it is!

Wow! The fact that she reached out to you and shared that with you...yes things worked in special ways. Now, this may be overstepping bounds, but do you feel comfortable asking her if she wants you to come with her? Unfortunately, I can see a doctor dismissing her and not hearing her out, especially with her age.

So, when parents say their child showed "autistic qualities" during an exacerbation, should they instead say their child had autism during an exacerbation? If we said that to moms of autistic children (I know you are one, but I mean others who are don't understand PANDAS), would they take offense to us comparing our children to theirs? Do we say our children not only recovered from PANDAS, but "short lived" autism as well? I'm curious to know this and how to explain this. I understand what you mean, Peg, but I just don't know how to word it.

Did you see a doctor for any of those absences? If so, get documentation for them and that may help. Even without a 504 or IEP, they may be able to show leniency.

My son had 3 PANDAS exacerbations at 5 years old. By the third one, he had to be screened for autism, along with other things. Thankfully, by the time our long awaited appointment came up, he had recovered from PANDAS more and no longer was a concern. The friends with late onset autism need to search even harder for answers.

I think it depends on the ENT. The ENT I went to wanted to remove tonsils due to PANDAS. He had only 2 strep infections in his life at that time.I didn't even have to ask about it.

Have you ever seen Buster's flowchart? http://www.latitudes.org/forums/index.php?showtopic=6688&hl=

Found it. It was issues with the voice. The child I was thinking of was diagnosed with Spasmodic Dysphonia.

I remember a few months ago someone else asking about throat problems and PANDAS. I'll think on this more today and see if I can remember. May not be related at all to what you're describing, but I'll see if I can find that post.