P_Mom

Caryn, Please don't jump the gun...I by no means diagnosed your son over the internet...I never said..."Your son has PANDAS. " Nor do I ever say to someone that their child "has PANDAS." I may say it sure sounds like it to me.. or highly suggest the possibility, but never do I nor will I ever give a "diagnosis." I was just referring to the trend I see alot with this disorder..that is all... and I just pointed out that I saw it in your situation as well. I believe what I do and suggest as far as PANDAS goes is in no way any different than what you do in suggesting the gluten/food issue connection. You always see gluten/food intolerances in the kids, I always see PANDAS. I NEVER tried to state you were wrong... just giving my point of view... I think we should all be able to take the advice of others and give respect to what each of us sees in each others case.. as well as give it.

Now that I dug deeper into Caryn's posts..I see that her son was complaining of a sore throat around the time of initial onset....and then she herself contracted strep shortly there after. So, strep possibly in him but definitely in the house plus varicella vaccine.... I don't know guys.... It seems whenever I dig into histories...I find a mention of sore throat, strep, fever, illness, vaccine, etc., in the mix of it all. Just look into old posts yourself...you'll see there is almost always a mention of these things with onset of tics/behaviors. But also a lot of the time...a connection is unfortunately never made.

I also find it interesting..and really not coincidental...that even in Caryn's situation..it was the Chicken Pox vaccine that STARTED it all for her and her son. The Chicken Pox vaccine and/or chicken pox itself, is a huge instigator and a no no in a PANDAS situation.

One more interesting I'd like to share about Chicken Pox that we experienced ourselves. After my younger sons initial explosive onset of everything this past summer after strep...he slowly improved over months until basically nothing remained. He had his titers run (too late) while he was well and they had come back to normal. He continued to do well and then started with a decent increase of symptoms..the biggest increase of symptoms so far since strep. We could not figure out what was happeneing..no one was sick, so we thought..and I started to look into everything else driving myself crazy...why would a PANDAS kid have this kind of increase without illness??? It wasn't until a few days later I noticed the bumps on his torso.. there were less than a dozen, but, definitely there, he showed no other symptoms other than this rash..I knew he had something viral and therefore had my cause for the increase. Well, less than a week later..we received a note from his playschool that Chicken Pox was contracted and going around in his class. I have no doubt that he contracted Chicken Pox and it was mild because he had the Varicella vaccine when he was one. Here is the interesting part..we had his strep titers ran again after this increase and they had risen, so, the strep titers rose in my PANDAS son's case even though what he had was Chicken Pox, not strep, and this rise = increased symptoms. Kelly

Hi Cheri, Me again, just with more thought in my head for a change. Anyway, I know you have been to many doctors and know what you are dealing with as you have been for many years, and I am no doctor and what do I know???...but, with the thing with your husband and strep...could you humor me and answer a couple of questions I have floating around in my head? Did your sons explosion of tics, at age 10, occur any time near your older sons strep infection? (did I already ask you that?) How long after this explosion did your son get checked for PANDAS at Shands? Were his symptoms still as severe as in onset when he was checked for PANDAS? Thanks...sorry to be so stuck on this PANDAS thing.....I am like Caryn, aka ,"gluten lady", I think I'll start to call myself "PANDAS Woman."

Ruby, I agree about the vaccines....there are so many more "required" these days as opposed to years ago and I do believe that these vaccines are a big part of the surge in these neurological disorders. However, I believe these kids who have these reactions are born with a genetic predisposition to develope these disorders, and then they are brought out by the many assualts from vaccines...years ago these kids with the genetic predisposition may have been able to have their symptoms remain so mild they weren't noticed or kept at bay because the vaccine requirements were so much less. Kelly

GREAT!!!!! No, being on antibiotics will not mess with the results. Sorry I was rambling about those titer tests..I didn't know you got them done already. Kelly

In a PANDAS situation, any immune challenge can set of symptoms. I spoke to a Mom who had a daughter in the study at the NIMH with Susan Swedo in the late 90's. She told me that Susan Swedo stated that there are many viruses/bacterias that are very similiar to strep in their molecular make up or structure, and can cause symptoms just like with strep...Chicken Pox (varicella) being one particular one she mentioned. Kelly

Bmom, I can't stress enough that I really strongly believe that you are dealing with PANDAS and you need to get his titers run now!! You will continue to go back and forth wondering what the heck is happening, but, you have a golden opportunity to get the titers tested now that strep is around before titers go back to normal..many people do not get this opportunity and miss the chance. Please..just go get the tests...it can't hurt. Also, baseball has been a HUGE trigger for my older son..sometimes only ticcing during ball..it is the excitement and idle nervousness of it all..and, yes, he would start to tic as he was getting dressed at home..he is PANDAS. Stay on the Zithromax and finish the whole dosage..don't take any chances that strep is there and then not be eradicated...also..be patient...the inflamation in the brain takes time to subside and it could take a while..it is not an overnight disappearance of symptoms. ...my kids took MONTHS for the symptoms to completely go away..although antibiotics dramatically reduced them initially...symptoms still lingered and would come out in times of stress, excitement,etc. for months after, and I mean months. When my younger son was in episode..he drank constantly,,same thing you described..he just always wanted something to drink. Stay on this track with the antibiotics...take one thing at a time..if you try to jump all over the place trying to figure this out..you'll drive yourself nuts. (I did that too in the beginning) Yes, everything you described can make things worse..the games, baseball, getting in trouble etc., those kind of things can bring this all out..but, it does not mean that this is not PANDAS, I believe PANDAS is the root cause and everything else just makes it worse. Over time, these triggers will die down and your son will be able to tolerate these things again, as long as strep is eradicated from his system and kept away. When my older son was in episode..artificial colorings made him worse, now he can handle it, but, I have decided to eliminate all that garbage anyway. Zithromaz can sometimes cause stomach upset...try to stay on it regardless unless it gets real bad..it should subside..oh, taking it with food should help that problem. Also, it was the same time two years in a row that my kids got strep..it was the strep not anything in the air..after strep though..these kids are more sensitive to things for awhile and their allergies and/or sensitivities can get worse. Go get those tests!!!! Kelly

What is he taking it with? Or is it a liquid? If so, what color is it? My son used to increase after taking his Pen, but it wasn't the Pen that was doing it, it was the OJ he was using to swallow the pill with. Kelly

Where the heck is that?

I mean "he."

Oh my gosh...fantastic on the doctor thing. I know of a PANDAS girl she has helped. I am so very happy for you! Please let me know what she has to say!!! Kelly What area are you in??

oh, one more quick thing...don't be surprised if your neurologist is no help to you...even denying PANDAS exists.

Sounds like 100% PANDAS to me. Take him to the doctor and get his strep titers ran ASAP.. INSIST on ASO and AntiDNAase B titer..this is very important to get done now..as waiting may cause a missed diagnosis. Other reasons or triggers for this can be addressed later if needed, but, your son has had strep recently and the titers need run ASAP. No, not necessarily, (answering your other question) antibiotics are not always the answer for PANDAS, although many times they help tremendously...it is so very different in every case. If strep is eradicated, and your son still has symptoms... a 5 day course of prednisone can "cure" your son temporarily if he has PANDAS, and also give you an answer to the cause of this OCD. Its a beautiful day in PA., I'm going outside to play. Talk to you all later!!! Kelly

YES!!!!!!!!!!! During episode, PANDAS episode, it is very likely that you child will have dialated pupils, almost to appear terror stricken or looking through you!!!

My younger son went through this twice so far...bad chapped lips...I now know it was a tic. He, too, would not let me put anything on it. So, when he was sleeping, I lathered the vaseline on. I had to do this about 20 minutes after he fell asleep, if any later, he would wake up when I did it.

Interesting theories..and I do agree about the vaccine damage. My question is this...if the tics/tourettes result from a long time build up of Mercury...then how do you explain an overnight, sudden, dramatic onset of tics/ocd and other behavioral changes in a child after strep, who...days before was perfectly healthy?..

Be careful about the symptoms needing to return after antibiotics in order to have PANDAS. It depends on the individual child..they are all different. Many kids titers fall rapidly. I know that is the case for many PANDAS children (tics returning after antibiotics) but, not all. I have two PANDAS kids, both responded to antibiotics, and when the antibiotic course was over, they continued to do well. I am just afraid to put a definite on this PANDAS thing, because, it is such a wide spectrum and when you limit it.. someone may miss a much needed diagnosis. Kelly

Bmom, The very exposure to strep can cause an increase of symptoms, PANDAS kids do not have to actually contract strep. Since you had strep...this in and of itself can account for your sons increase. Keep him on the antibiotics in the event had may have contracted it and it did not show yet..this will help "stunt" the antibodies. Your son sounds like definite PANDAS to me.. just my opinion. Augmentin is a much stronger antibiotic than Pen., penicillin is failing a lot lately in regards to strep. Actually, when my kids had the strep that started this all, they did a full course of Pen and the strep was back in 3 days..it didn't work. I believe Augmentin is Amox. with an added acid for greater effectiveness...it is in the Pen. family. My boys are on Pen VK daily..at this point an antibiotic is not needed to control their symptoms..they are doing well, mild stuff..but, if needed we would switch to probably Zithromax if their symptoms needed controlled. If something would happen and they got a big increase or strep.. I would do Chephalexin for a few weeks....if symptoms remained fairly strong after strep was eradicated (or whatever illness caused the increase), our next step would be a 5 day course of Prednisone... then back to prophylactic antibiotics. If my kids got bad and did not respond to antibiotics..and had a positive response to the Prednisone...we would consider IVIG. Again, we would only consider IVIG if all else failed and my kids quality of life had sunk... I do know at that point, IVIG can literally make these kids well and then many times they stay well!! (even with strep!) You have an oportunity now to get his titers tested with you having strep...don't wait..take him and get them checked ASAP! You have nothing to lose by checking..and..you very well may get answers you are seeking, but, wait, and you could miss this opportunity. Take care!!! Kelly

I am thinking this now... when infants show signs of TS... could it be manifesting from the inherited aspect combined with the immunizations newborns receive, or even flu shots, illness......then, mild symptoms remain and antibodies are lingering until the next big immune challenge? My older son was fine..stuttered after kindergarten shots for 2-3 months, got better..and was fine again until strep and sudden onset of tics, adhd behaviors occured. Younger son showed mild ocd symptoms after vaccinations, more yet still mild ocd after first strep, got better and then BAM.. major tics, OCD, anxiety, etc., after second strep, almost overnight. Someone asked if immunizations can start the ball rolling before strep, my answer according to my own experience, would be a huge YES!!!

It can take several days to see improvement..also, Penicillin sometimes may not provide relief for your child at all, yet, they can still be PANDAS. Sometimes, different antibiotics are needed... Zithromax seems to work for many PANDAS kids.

You know, with that info., and with Cheri's info. about her husband with the bad strep when he was little... I am more and more convinced about the immune system and tourettes/PANDAS. I think it is definitely something passed on genetically and then triggered by infection/illness/viruses/vaccines. I am thinking tourettes and PANDAS are one in the same...and with the revelation of PANDAS recently...we may be on the verge of a discovery for the cause of tourettes, and then be able to better treat these kids. I believe the more and more you look into every case... you'll find some kind of infection or vaccine etc., somewhere in the mix of it all. Just my thoughts...

Heather, When I read your earlier posts and how you said tics dissappeared after surgery and on antibiotics, I immediately thought PANDAS. I sent a reply suggesting that but I am not sure if you got it. Now that he has strep and has an increase of tics, I would DEFINITELY atleast look into this and get the tests done so you can be sure... now is the time to do it because if you wait too long, you may miss the diagnosis due to titers becoming normal in time. Some kids stay elevated for VERY long time periods, while some kids come back to normal fairly quickly. Pay attention to see if your son improves on the antibiotic...that is a big indicator of PANDAS, but, even if he does not, get the blood tests done anyway, some PANDAS kids do not respond to antibiotics, especially if they have been dealing with PANDAS for some time without treratment and even at that, some kids only respond to certain antibiotics. Also, be careful to make sure the strep is eradicated after this course of antibiotics. Insist on a throat culture, grown atleast 48 hrs., 72 is best. Amox. has been know to fail lately in the eraadication of strep... if this is the case.. Chephalexin or another Chaphalosporin (sp?) has been shown to be great for strep. Take your son to the doctor ASAP and insist on an ASO titer and an AntiDNAase B titer, these both need run and may possibly give you an answer to your sons condition. I truly believe many, many children are diagnosed with tourettes when in fact they are PANDAS, and are missing the proper treatment. But, I am also starting to see that there is really not much difference bwtween the two disorders, and, are they really one in the same? Maybe they are and the treatments are different. I don't know, I just do know you need to get those tests run ASAP. Also, after strep is eradicated and if your son shows symptoms still, a 5 day course of Prednisone can improve things tremendously IF it is PANDAS. (a 5 day course of Prednisone is harmless, but, it is not something you can use long term but can be an indicator of PANDAS if it works.) Please keep us posted and I hope this helps. Kelly

It is very possible that the fever and the increase of tics are related....have you ever had his strep titers tested? (ASO and AntiDNAase B )