colleenrn

I know you feel guitly for not telling you son the whole truth about the Dr's appointment, but I think it was definitely in his best interest to tell him that. I would make sure they grow the culture out for a full 72 hours. You can do strep titers, BUT be cautioned that IF the titers are NORMAL, that means nothing in the diagnosis of PANDAS b/c many PANDAS children do not produce elevated titers. If he cannot take Augmentin, I would ask for Zithromax (azithromycin) first and a cephalosporin (such as Keflex or Omnicef) second (if for some reason he/she won't give you Zithromax). It will be challenging to get a really thorough swab if he is not compliant, but make sure they try to get the best sawb they can (vigorously swabbing BOTH tonsils and the side of ther throat. It could be helpful to run the test as an upper respiratory culture b/c this looks for other streps besides just strep A ans other pathogens such as mycoplasma pneumonia, which can cause symptoms. They do the swab the same way, they just instruct the lab to run the test differently. Giving your doctor a list of symptoms, I think , is a great idea if it will scare your son to talk in front of him. Good luck. The fact that your doctor is aware of PANDAS is very encouraging b/c part of the battle that a lot of parents have to go through is b/c the physician is not even aware that PANDAS exists or even worse, does NOT believe in it. Colleen

My daughter is now 13 1/2, but when she was 11 (to be exact, 3 days before she turned 11 and I will never forget the date or the day) she had her first intrusive thoughts and they went on for days. At that time she cried and cried and said "I would rather be dead b/c I can't take it anymore". Turns out she had strep (we were not doing prophylactic antibiotics at the time) and when we started treating the strep the intrusive thoughts began to go away. She never attempted to hurt herself, but hearing those words from your beloved daughter causes you absolute panic and fear. I definitely agree with previous posts about taking any threat seriously just be be on the safe side. A good psychiatric clinician can help figure this out. Colleen

I would tend to think she has strep, just not culturing out from her tonsils- could be so many other places. Given her symptoms, I would be very suspicious. My daughter frequently complained of a stomach ache when she was younger and had strep and frequently tested negative for strep, but symptoms resided with antibiotics. When was the last time she took any antibiotics? Would your doctor let you try a course of antibiotics and observe any changes in behavior? If not, maybe try to get a stool test for strep and/or perianal swab to look for strep there. Colleen

I am so curious as to what antibiotic and dose Lauren is on. Does anyone know? It is so great to hear the word "PANDAS" on National TV. It is about time! Colleen

Judy, I would test everyone just to rule it out (not just rapid test but 72 hour). Of course, if he is at school, it could be exposure from there. Do you add Ibuprofen? If not, add that. For 120#, he could take 400-600mg every 6 hours. Good luck! I know how frustrating it is to try to figure it out. My 6,8, and 13 year old are all on Zithromax 250/day for 13 months and two are in a definite flareup this week. SO frustrating!! Colleen

Hi Judy, What dose is he on and how much does he weigh? Can you culture everyone in the house to see if anyone has strep and that is causing an increase in symptoms? If he continues with increased symptoms, is it possible that you could get your doctor to give you another anitibiotic jsut for 10-14 days (a cephalosporin like Keflex or try Zithromax- these can be taken at the same time with Augmentin. I think that sometimes when there is a flareup while on an antibiotic, that it could be that the child has a strep ear infection that is just not responding to the antibiotic. For example, my kids have been on Zithromax 250mg/day for over a year and still get occasional ear infections that cause flareups. My NP adds another antibiotic for 10-14 ays and it seems to work. Colleen

Here is the link to send comments to Dr. Snyderman. I just emailed her explaining the titer situation and how you cannot rule out PANDAS based on normal titers. http://today.msnbc.msn.com/id/21839940 Colleen

When I posted before I had not seen the whole segment. They did talk about PANDAS being a real possibility and hooked her up with Saving Sammy's doc and Dr. Leckman!! I just wish docs like Leckman, Nicoletti, Latimer, Swedo, etc... would be much more vocal and assertive about PANDAS! We have these nit wits, publishing papers left and right, trying to disprove PANDAS instead of trying to help these children. The laugh will be on them in the end b/c some day soon no one will be able to say PANDAS is "controversial". Colleen

The first thing I thought of was "does she have PANDAS?" Are the sneezes tics? It began abruptly after an illness... Hmmmm.... Colleen

I would say Augmentin 500mg, twice per day should be the minimum for that weight. That would be a good place to start and see how she responds. Colleen

Melanie- How much does she weigh? She may have just been exposed to strep and the 200 twice a day is not enough. Have you done a throat culture or did your doctor give you Augmentin based on PANDAS? Ok- Just went back and read your posts- your history of strep and rheumatic fever- that your doctor switched to Augmentin after good response initially to Amoxicillin, then increased symptoms. I would defnitely say to see if you can increases the Augmentin asap. What is her weight? Colleen

Stephanie, That is completely false that a toddler cannot get strep and it is so ignorant of your doctor to think so. Babies can get strep. Sometimes the symptoms in younger children are much more mild, so maybe they just aren't getting tested. The strep could be elsewhere also. I just cannot believe that a doctor, knowing the PANDAS history in the sibling and given the recent symptoms in your toddler, would refuse to do a simple throat swab. I would definitely get one done somewhere. Colleen

The upper end for a treatment dose would be 500mg twice a day, BUT the Saving Sammy dose could be a little higher. My sister has her 70 lb. child on Augmentin 500mg twice per day as a prophylactic dose. Have you considered staying on the Zithromax, but ading a few weeks of Augmentin? This is what i am thinking of trying with my children. I am too scared to take them off Zithromax at this point, but am really interested in trying Augmentin. Years ago, my daughter did really well on Augmentin for a year until she got hives one day and we stopped the Augmentin, fearing she was having an allergic reaction. BIG mistake in hind sight. Colleen

We have several times tested positive for beta hemolytic strep, NON A during flareups. In our case we see flareups with any type of strep. My 3 yo and myself tesdted positive for Group B strep also about 1 1/2 years ago, also during a flareup. A lot of physicians don't treat non A strep, but in PANDAS kids they should be treated. Colleen

Buster, Thanks for taking the initiative to start this. I would definitely include my kids info! Thanks, Colleen

My kids had been on Zith 250/day for 10 months and still had elevated Cam kinase. Colleen

I am wondering for all who are currently using Zithromax if anyone is thinking about a trial of high dose Augmentin, given all the recent success with it. My kids have been on 13 months of Zith and doing great until this July when they were heavily exposed to strep for a week. I have been struggling with whether or not I should either completely switch to a high dose of Augmentin and see what happens OR convince my doc to give me a couple weeks of Augmentin on top of the Zith. I wonder if I did the second option, if I could cut their Zith dose in half for that time on Augmentin. Any advice/comments would be greatly appreciated! Thanks, Colleen

That is great news!! Colleen

Can we ALL just directly email Beth and explain individually why she must change her stance on titers? If 50 people email her (not facebook in case she deletes) then maybe we will have an impact? Colleen

Wendy, Is your child on antibiotics and what dose? Sometimes if they have been exposed to strep they can have a flareup that goes away on its own, but I always have a low threshold for symptoms as far as increasing antibiotics. I sometimes increase to a treatment dose temporarily when they have definitely been directly exposed to strep. Colleen

EaMom, I am also extremely frustrated with Dr. Swedo and the NIMH web site. I posted this before, but back in Feb. Dr. Swedo told me they were "in the process of updating" the web site and made it sound like it was to be done soon. Nine months later is still isn't. I cannot even imagine the number of physicians and parents, searching for answers, who read the info on that website. It tells them No antibiotics, need to have high titers. Now we have Beth Maloney as the PANDAS "spokesperson" telling the world that you need high titers. This misinformation has got to stop and stop immediately. I have just had it with fighting this fight. It's great that Beth wrote this book, but it stinks that she is making things worse, and I do believe it will make things worse if she continues to maintain this BALONEY about titers. Colleen

Yes! We definitely have the same teeth problems, but I have never made the connection with PANDAS, maybe there is or isn't, I am not sure, but find that very intersting. My 13 year old daughter had to have 8 baby teeth pulled when she was 12 1/2 b/c they would not fall out. She did not get her 1st tooth until she was almost two, then did not even start losing them until she was 8. Same thing with my 8 almost 9 year old son. First tooth at almost 2, he will be 9 in March and he has only lost 2 teeth and had to have 4 baby teeth pulled. Another issue is that once they lose their teeth, it takes forever for them to come in. My son had his teeth pulled almost 8 months ago and there is still no site of any adult teeth coming in. Judy, I have not always done this, but I do it now. If my kids have to have any dental work (even cleanings) I either increase their daily Zithromax the day before, day of, and day after the dentist OR I add another antibiotic for those 3 days. I started doing this when I found out some children have big flareups with dental work b/c it allows the strep to easily enter the bloodstream. Do you think your son is having a flareup after having his teeth pulled? Colleen

No raspy voices here. No sore throat/red throat/ any physical symptoms with strep except years ago when this all began witht my daughter. The 1st few strep she had a fever and sore throat. Colleen

I just wanted to post that my children with PANDAS had both H1N1 flu AND the seasonal flu (yes, aren't I lucky?) in the past month and with both flus I did not really see any increase in PANDAS behaviors with any of them. Colleen

OK. I think it is great that Beth wrote the book. I think it is great that she is getting PANDAS in the news. I think it is great that the PANDAS foundation is in the works. BUT, she cannot be the National spokesperson for PANDAS IF she continues to claim that high strep titers are necessary to diagnose PANDAS. I, and I know many, most of you, have spent years trying to teach people that "NO, you can and do have PANDAS with normal titers and I am not going to sit back and watch this misinformation get spread around the country and the world. I am sorry if this sounds mean or whatever. I am very grouchy after 4 weeks of two different flus with all of my kids (yes, we were unlucky enough to get swine flu and seasonal flu). I just feel that one of the biggest obstacles to getting diagnosed is that so many physicians MISdiagnose on the basis of normal titers. What is going to happen when the PANDAS spokesperson continues to spread the wrong titer info around? Colleen