P_Mom

Yeah...shirt sucking, lip licking, repeating phrases....my son did them all, plus many more things.....all PANDAS related.....anxiety, tics, ocd, sensory related...

Worried Dad.....SOOOOO happy for you , your son, and your family! Have a blessed day!

Maybe twice a day works because....... The Pen VK stays in the immune system, let's say average of 5 hours.....then if the child gets exposed after that ......it isn't long before the next dose. At that point, maybe the next dose of PenVK is enough to wipe out any bacteria just introduced to the system????? You'd still see an increase in PANDAS symptoms....I am guessing...but, no active infection. I would guess the PANDAS symptoms should be kept to a minimum?????? Just thinking...... Anyway, still doing once a day dosing (some days none if they aren't hanging around a bunch of kids...YIKES, I know!!!!)....anyway, still doing well. They get 2 doses on Saturday and Sunday...because of increased exposure, then back to one on Monday!! I know I am playing with fire and will increase or change back to Aug. if anything increases....I really want to give their bellies/livers a break after three years of continuous antibiotics...pump them full of probiotics and vitamims this summer...preparing to go back to Aug. on the first day of school!! I really am thinking of Azith prophlactically.....like every 5 days or so.....it would be so much easier!! But, I am in the NE and there is supossed to be Azith resistant strep around here! Ugh....where is the PANDAS handbook to follow!!!?? I sent some inquiries to Beth Maloney and was told it sounded like my kids weren't being properly treated and to buy the "kit" for Sammy's treatment protocol....... That is all she wrote (although it may not have even been her) Prayers are always welcome for this summer of reduced abs!! Kelly (oh, we go on vacation (plane ride) in August........the 17th, close to the start of school......I will actually start the Augmentin a day or two before we leave!! )

Tracie...any increase in PANDAS with H1N1???

We use Osom........they work! Detected my husband's strep Christmas 08....he did not have a sore throat or anything....just a headache. He decided to swab himself since my younger son abruptly showed an increase in symptoms one day...positive! http://www.genzymediagnostics.com There are a few different ones......we use Osom Ultra Strep A Test. You can get a better deal at http://www.nextag.com (type in Osmon strep a tests) Some kits you can get for much cheaper, but, I am skeptical of the cheap kits....I want to make sure what I get is high quality and works! What would be the point otherwise? Wow, found a good price here...better than I ever got... http://www.diameddirect.com ( again , just search Strep A tests...you'll get a list)

Hoping for good results for you! Really, with my son...it went from tics, to nothing...there really was no inbetween....it was amazing! How bad are the tics right now? Hang in there......you still got time!!!!

It is strange, though. If Pen VK totally leaves your system, in what??...8 hours? Then how does every 12 hour dosing keep a child fully protected??? It would seem they are just protected for the 8 or so hours after they take it?? Right?

Oh yeah...you have GOT to respect the microbe!!!!

My son has passed out in blood draws and ticced like crazy beforehand......nervous stuff.

That dude IS nuts! :0 I don't think he would buy into the biological cause either.....I think he tends to believe (Scientology) that it is all in the mind....mind control stuff, harmony with the body, ya know??

And your little doggie, too! (hey Steph...whats so funny?!) Yes, I am talking about ONCE a day...and I know FULL well they are not 100% protected,(not even close) but, it has been three years (I know, an episode is a day away)....it is summer....some days they just hang here, we do not live in a "neighborhood"...so........ Am I stll nuts???? Planning to up it and change back to Aug. if I see anything!

Okay....so, I changed my kids antibiotic to 250 mg of Pen Vk a day, while pumping the pro-biotics....kinda to give their tummies a break...........am I nuts?????

8 days PAST last day of burst, so, on day 13 from the start of the burst....the tics disappeared. It can take a bit for the inflammation to go down...hang in there......you are not even close to failure. I, too, would love to hear your take on IVIG...and what Dr. K has to say about your son not being cured by it. Sorry, Bmom....I am just skeptical of his claim of cure.........

No, Kim....for SF Mom. Your post, Kim, I could understand...thanks! No offense, SF Mom!

Dancing with ya, EA Mom!!

UGH......!!!! I agree with Jill! Sammy had over a year of continued, untreated "assault" on his brain and suffered no damage..........please no brain damage.........worrying about that mght be the proverbial "straw."

Sounds great....I'll be praying with you!

Boy am I glad I didn't have my kids watch it.......

Huh???

Okay...can somebody explain to me what the Prevnar vaccine, and, therefore, the s.pneumonia titer tests have to do with strep A??? I see ALOT of mention on these boards relating s.pneumonia titer response in relation with strep A. In my understanding, they are two completely different microbes...causing different illnesses. I thought that titer response to s. pneumonia (prevnar vaccince) had nothing to do with strep A (PANDAS)??!! What am I missing??????

No, this is NOT correct. Dr. Cunningham does not say that PANDAS is caused by S. Pneumonia bacteria. She said it is "possible" for it to cause a PANDAS episode, (at this point, anything is "possible")........but, that group A Strep is the "main" trigger. S.Pnuemonia and group A strep are two totally different bacterias........testing for S. pnuemonia response does not predict your childs response to group A strep!

Okay...definitely axing the kids watching idea! It will probably freak me out......so, don't want to do that to them! I was just told by my younger son to stop worrying so much about him ........that he is fine! Now, can anyone tell me how to do that?

Yeah, see, with my kids...they both also have a good understanding of what PANDAS is (atleast I think so).......but, just to see they are not alone....geez, I don't know......maybe I should skip it. Yeah...I think I will....why take the chance??

Is anyone having their kid(s) watch the episode? I was thinking about it to give my boys a better understanding of the disorder, why they take antibiotics, and, to let them know they are not alone or weird, and, to let them see that THEY WILL BE OKAY!! (which they are, now) My younger son was severe....I think he would really relate to it, but, my older son probably won't so much. However, I am afraid it may backfire and scare them....making them paranoid??!!! Any thoughts??

MOM MD... Hoping to hear of a positive update! Please let us know how your daughter does with this bout of strep! THANK YOU!