Suzan

I'm so glad! I agree that it is a great protocol and I think it has helped us a lot too. Sorry I'm a broken record with his website

I am sorry you are having such a hard time! Have you tried the slow release (timed release??) melatonin? Maybe this would help stay asleep at night. We have never tried it but used to have trouble staying alseep as well. Susan

http://www.wholisticpeds.com/ I don't know if Dr. B prescribes antibiotics but he is familiar with PANDAS and Dr. Swedo and I have sent him Dr. Cunningham's papers. You might call to see if he recommends anyone in the area or if he would be able to help. He is a Dan! doc and I highly recommend him in general. I'm sorry, I am not familar with the other doc you mention but I am not from FL. Susan

When you recover from an illness, the blood test should be able to show antibodies against that virus, if it was a viral infection,” said Eng. So, I'm wondering about this sentence. What exactly does this imply, if anyone can elaborate on? Is the above an accurate statement. Antibiotics only work on "bacterial" infection they say, but what about the viral component? Is this saying that antibodies are involved in viral infections too? I think that is what my mind is trying to understand lately. as I hve not been able to definitevely prove that my son has any strep that can be detected. All the PANDAS symptoms seem to be based on "strep A", .... most of my son's illnesses seem to be viral.....has it been established that virals can also be the cause of this? if the above is stating antibodies are involved in viral response, then I suppose it is possible. because we know that it is not really the "strep" that is causing all this, but the "antibodies" that have mistakenly attacked the wrong target, correct? Faith My doctor checked my dd for some viral infections that he said could cause neurological problems in people who's body did not properly clear the virus. She showed positive response to HHV6 showing that she had the virus at some point in the past. So yes, I believe they can test to see if the body has antibodies and that they can cause pandas type epsodes. s

I decided to get the flu shot this year but I won't be giving it to my kids. I have given it one (maybe two?) years in the past, before I knew about vaccine trouble or PANDAS. I would like to go back and find out when they got it to see if I can link it back to any behavior. There was nothing obvious though. They have been wacky acting forever so sometimes it's hard to determine what might have made them wackier. Susan

Oh weird, did they give you any indication of why you developed them? I have not asked dd if she feels them although we do talk about them sometimes. She has never said she feels them but maybe that is one reason why she has trouble sleeping through the night. I'll have to try to talk to her about it. I'm sure she thinks it's normal. It's crazy trying to count her pulse. It's like there is no rhyme or reason to them. Susan

My 7 yr old sees a heart specialist once a year to monitor her PVC (extra heart beat). I'm told it's not related but I always wonder. She developed this PVC when she was around 3 yrs old (I think) and they noticed it during a surgery she had for a birthmark on her forehead. She has had a full workup on her heart and they say there is nothing else wrong, it just fires too often. Susan

I just sent in our pic!

But... PS... we have never been on large doses of augmentin like that so I know I was of no help to you! Sorry!

That is what my younder daughter does during a PANDAS episode with the food but it goes away on antibiotics. Have you tried a protein drink like Boost (we buy the generic brands). My dd will usually drink these if all else fails. I would probably feed the fast food too if that was the only thing that worked and continue offering olther foods. We have big sensory issues here too. BIG HUGS! Susan

My dd's highest responses were with serotypes 19 and 23. They were 4.2 and 10.9. The other 12 were less than 2 and 8 of those were less than 1. Susan

Oh gosh, the opposing forces, yes! My dd pushes me away and when I go, she grabs to pull me back and if I come back, she pushes me away, etc. Susan

Manda, we see a lot of what you describe too although they don't get quite as intense with the major agression. Thanks for posting, I find it helps to see others experiences in writing. It often helps me to put words to our own experience. Big hugs to you!! Tonight she was upset with me because I took the scissors out of her hand since she was using them to stab some papers in anger (although I didn't know this was the issue until it was all over). This caused a sobbing incident that ended with her crawling on the floor pawing at me and hitting my coat and making these strange gutteral noises. When I would talk to her to try to find out what was going on, she would crawl around and gesture and grunt, all the while crying and hitting herself in the head with her hands and grabbing her hair. I often just sit there and stare at her not knowing what to do since just about anything makes it worse or just last longer. I have even just ended up laughing at it all because otherwise I'd be crying or screaming myself. Tonight she popped herself right out of it on her own. I have no idea how but I was so glad. Susan

Us too, pale skin and dark circles. This post made me wonder if PANDAS is found largly in caucasion children or if we have kids with other racial backgrounds getting it too.

If doctors are diagnosing immunodeficency by revaccinating and this is not good for our children, how should they be diagnosing? By just the original titer results themselves? And if you have a doctor, who may not be a PANDAS specialist (since those can be hard to come by at this point) but who is PANDAS interested and is learning and wants to do the right thing, what papers or documents can be provided to help? Our immunologist is now looking for a way to get IVIG covered since she knows that my dd needs it. My dd so far the only "test" my dd has "failed" is the pneumoccal titers. Shaesmom, thank you for your response post which I did not find insulting in any way. I know you were not suggesting that we all run out and revaccinate our children but you do know that this is something many of us are up against! Susan

Hi, I am glad you are experiencing no reaction that is great! I hope it helps in getting you a diagnosis and helping figure out what is going on. I have a post with a small update somewhere but I think it may be on page 2 now. Our immunologist did not recommend revaccinating at this point. Since she didn't bring it up I decided not to bring it up but she is retesting our s. pneumo titers. She believes dd needs IVIG and now she's looking for a reason for the insurance companies. We talk again after the test results come back. She's testing for several things and I guess I'll just wait to see how it goes. Thanks for asking about us! Susan

Us too, it's Trader Joes Cinnamon Spice Oatmeal for my younger dd. She gets anorexia behavior as well and now that she is 90% right now, she still is very rigid in her food choices and will no longer eat fruit except on very rare occasion and will only eat a bite of selected veggies. I am so happy to read your posts of improvement with your son. I am thinking my older daughter needs this antibiotic change, at least it is worth the try. Susan

I've wondered this so often! We don't have classic strep infections here either.... susan

So learning the types of symptoms zyrtec can cause, I thought I'd post a question to you all to find out what allergy medication you use. My dd's are on zyrtec and flonase. I take Allegra and nasonex. We are an allergic family! What are the best allergy meds for PANDAS kids? Thanks! Susan

Crap! We are on zyrtec.......!! Also, I totally agree, everyone (doctors, friends, co-workers, parents) all told me (some even still do) that all this is NORMAL KID STUFF. We have low titers and the not as obvious OCD behavior (at least to someone who is not well versed with OCD like me). We're not an easily cured by antibiotic PANDAS family either but luckily the antibiotics help in the mean time. Susan

Hi, if you have not gone in yet, I was going to also suggest you indicate that he has had sinus infection symptoms for a few weeks so even if the strep test comes back negative, maybe he would be more willing to put him on antibiotics. HUGS and I do hope it's not strep but I do hope you get the antibiotics! Susan

Hi, we see the doc at Northeast Neurology and also Dr. O'Connor. Northeast is great but SUPER busy and hard to get appt's. I highly recommend Dr. O'Connor at this point in our progress. HUGS! I know Dr. Nelson is helping a lot here. That is not good news! Susan

There are some possibilities in Charlotte, NC which I know is a several hour drive but if nothing closer looks good we can get those names.... Susan

It is my understanding that prevnar came out in 2000 and was not administered before that year. I don't know if they gave a different vaccine for this before then..... Susan

I am sooooo glad you feel hopeful and have some things to work towards. YAY Mom!