Kayanne

I just wanted to point out that many PANDAS children see improvement on antibiotics and don't experience a herxheimer reaction. Amoxicillin is not really a good antibiotic for strep or pneumonia. So, my thoughts are that you may need to try a different one such as Augmentin, Zithromax or Biaxin, Keflex or Omnicef. Also, are there any other behavioral symptoms that your son is having or is it only tics? I think that is a consideration. Do check out the TS board, and the Lyme board here too. I am not sure that you have to have behavioral changes too...I know you don't have to have tics, so on the flip side, I would think that if a child only has tics, then PANDAS/PITANDS should be investigated. Even "traditional" (and I use that term lightly for lack of a better one) Tourette's Syndrome is very often co-morbid with OCD and ADD. Across the board, neuropsych disorders overlap tremendously...the key is to find the trigger. Which I think you are already of that mindset. Try to test everyone in your household for current strep infections. Wierd stuff here...but PANDAS kids react to strep in their environment. Good Luck, welcome to the forum. I'm really sorry that you are here, but it is the best "here" on the web!

I'm so glad to hear things are going good on the zith!!! I was thinking of emailing you to see how he is doing on it. Is this crying a relatively new behavior? If it is, then my guess would be it is just part of that "rocky" healing.

I have always believed that until the drug companies get on board not ALL the docs are going to know/treat this--sadly, that is the nature of our medical establishment. (Of course, there are always excellent doctors who are exceptions to this). However, I am concerned about PANDAS getting boxed into a specific treatment protocol when it seems that the research really isn't there yet. Too many docs are telling parents they can't or won't treat this, and I think it can be harmful for the medical establishment to get stuck on the idea of Augmentin XR being the treatment. I think it is more helpful for doctors to understand that they need to dig for infectious causes, address the infection, and treat the autoimmunity accordingly. I'm just worried for that child who needs more than augmentin (such as prednisone, IVIG, and Plasmapheresis)...I worry that if a child doesn't improve in x number of days (as marketed) then doctors will dismiss it as being PANDAS. I am hopeful, that things are beginning to fall into place!

Yes!! This was one of the most heart wrenching for us. It is so horrible to have a child crying and crying and not be able to tell you why. I suspect that MomWithOCDSon is spot on with her explanation. In fact, one of the ways I distinguish normal childhood behaviors from PANDAS, is to make sure my daughter can tell me WHY she is so upset. If she can do that, then I breath a sigh of relief.

I am so happy to hear your wonderful news! Congratulations. Am I correct in remembering that it was a month of prednisone that your daughter took (in addition to the antibioitics)? I agree with Vicki, that you should still give a probiotic.

There is still so much we don't know. Keep plugging along parents (and kids), and when you hit a brick wall with a close-minded doctor, perhaps this is one more example to keep in the back of your mind. http://www.comcast.net/articles/news-science/20101202/SCIENCE-US-ARSENIC-BACTERIA/

Thank you so much...take your time we all understand! Don't forget to use the copy and paste buttons, I don't care if you send me something you wrote to someone else. Thanks again

Could you also please pm me her protocol too? Thank you so much!

...you are constantly checking the levels of probiotics, fish oil and vitamins in your cabinet and you get excited to see dye free motrin on sale.

I am a strong believer in following your gut...if your are terrified to try something, then that is your answer.

My daughter has not used augmentin at all when she was being treated for PANDAS. She has been on full strength omnicef for about 6 mos, and then we dropped her down to half the strength for a prophylaxis. Can I just suggest...that if you see significant improvement on the 10 days of omnicef, you consider not switching back to augmentin. Obviously, you need to be comfortable with that, and your doctor needs to be on board. You see, I tend to think that if something is working...you should not change it up. So, I just wanted to throw out there that if you see a lot of improvement on the omnicef -- it could be an option to keep your son on it, and you don't have to switch back to the augmentin. As always, go with your mommy gut.

In 2009, we had a difficult time clearing the strep from myself and my children. The pediatric practice that I take my kids to has 6 doctors...we saw several of them, and the antibiotics that were prescribed also varied. After finally insisting to the "main" pediatrician that I take my kids to (for well visits) that he perform a culture and sensitivity test to determine which antibiotic is most effective against this strain of strep. He answered that he didn't think the local hospital does such a test, and anyway it doesn't really matter because all cephalosporins kill strep. He rambled on about a seminar he went to, and that as a last resort, we would need to try clindamycin--which we eventually did do. I didn't understand any of it...at the time. But now it is significant to me because it means that when my kids get strep, he is on board with skipping the penicillins. I am from PA. There have been documented cases of macrolide resistant strep in Pittsburgh and Ohio Valley. Zithromax is a macrolide, not a cephalosporin. I found some studies that show resistance to erthyromycin and biaxin, but not a mention of zithromax...however, I think that the idea is that if one antibiotic in that class has resistant strep, then all of them have the potential to have strains of strep resistant to it--I would love it if someone could clarify this for me. I want to add that your statement above is very general...I think there are many cases in the east where zithromax has worked...the resistance just needs to be a factor to consider when deciding which antibiotic to put your child on, and it should be on the back of your mind if your child suddenly has a spike in PANDAS symptoms. 1) IMO long term full-strength abs are really important for PANDAS kids (at least most of them). My dd (now 5th grade) has been on (at least) 250mg/day Azith. for 2.5 years. I wouldn't expect much in terms of response/sustained improvement from just a z-pack here and there. 2) Hmmm. I have not heard that b-4 about ASO/intracellular strep. I would think almost the opposite, if the strep is hiding intracellular, the body would be less likely to have elevated ASO's. ?? Did that person have a reference? Many PANDAS kids have low titers (mine did) yet I suspect she may have (had?) intracellular strep as she responded better to Azith. than other abs. I completely agree with EAMom about long-term, full-strength anitibiotcs. IMHO, a child should be on them until symptom free. Then dropped to a prophylaxis dose...if there is no backsliding, then I think it is safe to assume that the exacerbation is over. As far as getting worse on zithromax after a while, I also think that is an over-generalization. One thing to really consider is that your son's case is unique, as is the case of every child who suffers from post infectious autoimmunity...and the worsening of symptoms many times doesn't have anything to do with the antibiotic, but rather re-exposure to strep or new exposure to mycoplasma or a virus. Sadly, it is a maze that many of us parents are left to navigate on our own. Also, you need to consider what types of things are going to happen on zithromax if this is really a case of lyme...herxing. Finally, you need to consider that not all of these kids guts are going to do well on zithromax...so what is excessive yeast or an overgrowth of a different bacteria going to do to their behavior. Cases vary a lot from child to child -- especially the longer exacerbations and/or untreated cases.

I'm so happy that you were able to get your boys IVIG! I really hope this significantly helps their healing!! Please keep us posted!

This is just my gut feelings about Augmentin. It's been fairly well established (at least on this forum) that amoxicillin doesn't work well against strep...at least not for PANDAS kids. This is probably because of the intra-cellular nature of the strep, but it could also be other factors such as the actual strain of strep or a combination of the PANDAS child's immune system and the strain of strep. But Augmentin is amoxicillin combined with clavulanate acid. Well, I just think that if pen vk, and amox aren't good enough for PANDAS kid's strep, then it isn't a hard reach to assume that Augmentin won't work in some cases too. One quick google of "cehpalosporins and strep" gave me this article at the top: http://www.medicalnewstoday.com/articles/35136.php Anyway, this is just my 2 cents...but in my family I now insist on a cephalosporin...we pass on the penicillin. Of course I realize that what works for us may not work for everyone.

During all of these tests was a rapid strep test given, and then a back-up culture? Was she sick at all prior to these behaviors? Any rashes, sore bottom, pimples on the skin? I think your daughter does sound a lot like she has PANDAS. Elevated strep titers are not a "test" for PANDAS. Some children do not get a rise in these antibodies. If you post a general area of where you live, people may be able to suggest a doctor to help. Also, visit the pinned threads at the top of the forum, and try to read as much as you can. Many of your questions will be answered. I'm sorry your family is suffering right now...Good luck.

My husband has been taking tryptophan for his panic attacks. He thinks it helps. I just started to give a half dose (approx 250mg) to my daughters at night. My 9 year old was having nightmares, and she is mildly anxious, so I figured she would get at the very least a placebo effect in regards to the nightmares, and it may help with the anxiety. My 7 yr old has PANDAS, and she does have very mild OCD and is also mildly anxious, so we decided to try this for a bit. I also take a 500mg sometimes at night when I know that I am more edgy...it really does help the next day. We try to time it about 1/2 hour to 45 mins away from food, or with a carb before bed. Also try to get B6 in the form of P5P sometime during the day. This is important to help your body convert the tryptophan to serotonin and melatonin

Me too.

I just finished reading it (note: I tend to skim the scientific details because my eyes just glaze over because I don't understand it.), and I think overall it is pretty positive. Especially since Kurlan is listed as a co-author, and the article did point out the problems in Kurlan and Singer's studies. I liked this quote in reference to their work: "The reasons for this discrepancy are not clear, but suggest that the PANDAS cases identified by these studies may not be the same as the PANDAS cases studied by Swedo and colleagues." I don't like that they are still suggesting that SSRI's and CBT are the way to go still...but I can understand why they have to say that if there is still not good enough studies on antibiotic, and immune therapies. Here is also another quote I really liked: "In our view, the diagnostic criteria and the assessment methodologies used to identify PANDAS need to be refined to focus on the broad range of psychopathology ostensibly associated with PANDAS. Specifically, in PANDAS, the period of increased tic or OC symptom worsening is also associated with a sudden increase in the severity of psychiatric comorbidity including emotional lability, intense anxiety, cognitive deficits, oppositional behaviors, frequent urination, motoric hyperactivity, and/or dysgraphia (Swedo et al. 1998; Murphy and Pichichero 2002). This is not adequately captured if the criteria for an exacerbation focus simply on the change in OC or tic symptoms."

This link will give you access to all of the articles in that issues (I think): http://www.liebertonline.com/toc/cap/20/4

Was this already posted? Beth Maloney Referred to it in today's email update. I haven't seen it before, so I figured I would post it. I also haven't had a chance to read it yet. The Immunobiology of Tourette’s Disorder, Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus, and Related Disorders: A Way Forward http://www.liebertonline.com/doi/pdfplus/10.1089/cap.2010.0043 From: JOURNAL OF CHILD AND ADOLESCENT PSYCHOPHARMACOLOGY Volume 20, Number 4, 2010 ª Mary Ann Liebert, Inc. Pp. 317–331 DOI: 10.1089/cap.2010.0043

Like Marylandmom pointed out, Dr. L has a very calm nature. She did her neuro exam on my daughter, and was great with her, smiling and praising her and such...just as you would expect a doctor who works with children to be. She spoke in terms that were easy for my daughter to understand. It went something like this (I'm going by memory from June 2009): "Do you know why you are here today?" Vacant stare from my daughter, with her tongue sticking out and to the side. "Well, sometimes when a kid gets a strep infection, other things happen because of the strep. You may get sad, or have thoughts you don't want to have, or not be able to do your schoolwork." (I don't really remember what symptoms Dr. L described--just filling in the blanks-they were along the lines of what my daughters symptoms were) Still just staring from my daughter. "But you're going to be okay." (there was some more types of reassurances from Dr. L, but for the life of me I can't remember how she even phrased it. Prior to that, we were not discussing it at all with my daughter for fear of creating more anxiety. However, after Dr. L handled it so well I knew I needed to be a little more proactive in reassuring her that things will get better, and such. My daughter was 6 yrs old at the time.

We just told Dr. L that we were more comfortable with our daughter not listening to the overall "history". Dr. L was fine with that. My daughter sat in the waiting room with my husband while I went over history and symptoms. My husband came in with my daughter when Dr. L needed to do her exam and observation. I will say this about her...she was great with my daughter. She took a couple of minutes to explain to my daughter what was wrong with her. It was very good, and after that we took her lead and try to talk more to my daughter about it...before we were afraid to add to her anxiety.

Or a decrease in tics and symptoms possibly due to the antibiotics. Also, this doesn't sound like an unusual amount of strep. My non-PANDAS children have had a recurrent infection (kept testing positive) in 2009, and then again just about a year later in 2010. It really is not the number of infections per say, it is more about if you notice an significant increase in symptoms. Do you mind sharing which antibiotic and dosage your son was prescribed?

In Oct '09 we used Tamiflu for my aon and PANDAS daughter. It really did stop the flu in it's tracks. We were fortunate that we didn't see any significant increase in PANDAS symptoms...I'm crossing my fingers for your family!

Well, I would highly recommend trying your best to learn about Lyme testing, and making sure you rule it in or out. Finding the cause is half the battle. However, I know of a poster (Chemar) whose child is just TS who has gotten worse on Zith. So that may indicate your child has TS and not PANDAS. But mostly, I don't think a negative reaction to zithromax will tell you much of anything, other than zith doesn't work for your child. I don't think anyone has said that their doctor uses a "zithromax trial" to diagnosis a child with Lyme/PANDAS/TS/OCD. You are doing a great job. Keep digging and asking questions to get to the root of the problem. Mostly every parent here knows about the obsessing about getting your child better...I'm sorry that you are in "a death grip". Perhaps try to think of it as information gathering. I'm keeping all of our kids in my prayers! Good Luck!