Kayanne

I just want to add that you shouldn't discount how well your son's did on prednisone. Each for a month, and both with positive results. I'm pretty sure that points more to PANDAS and not Lyme.

Thank God! I am really glad that it was not significant for your family!

I don't know if that is a correct dose for your daughter. I just thought I would give you what our dose was as a reference. When my daughter was about 47lbs her her highest dose of prednisolone was 15mg 2x/day (30mg) for the first week, and then it was cut in half for weeks 2 & 3, and then only 7.5mg every other day for weeks 4 & 5. Good Luck.

http://www.site.neurokidsr.us/ http://pandas.yuku.com/

So your children are having their symptoms ramped up after being taken off of the augmentin? Just a thought, we are only 4 hours east of a documented area (Pittsburgh) that has strep strains that are resistant to macrolides...perhaps an antibiotic change is needed. You might want to run this by Dr. B and see if augmentin should be added back in. My daughter responded really well to Omnicef (a cephalosporin), but it is expensive, so I think docs are reluctant to prescribe it. http://www.nejm.org/doi/full/10.1056/NEJMoa013169 Zithromax is made from Erythromycin...however they are different somewhat in chemical structure (I don't really understand this...just repeating what I have read)...the studies that I have been reading have tested the strep against erythromycin. I would love to know if that also means you need to consider Zithromax as having some strep resistant to it too. I have been avoiding zithromax because of this, but would love to have it available as an option.

Yes, she had OCD...and possibly one tic (but I'm still not sure if it was a tic or a compulsion). The OCD shut her down, so there was no communication...we had no clue what was going on in her brain...so I can't answer if she was in denial...I don't think so, though. The first taper was for 4 weeks...but we and her doc extended it by 2 weeks. The second taper was 5 weeks...the last 2 weeks were every other day. I do think other parents have used higher doses of zithromax...but the 250 a day is probably okay. Perhaps someone with more experience with zith will chime in on that one.

My daughter had very successful outcomes from prednisone tapers-twice. For her, it had lasting results. Both times, her PANDAS was caught early, and we don't have any other health complications. I wish you both the best of luck.

Wait, so they don't even treat with long term antibiotics? Do they look for underlying infection including non-strep illnesses such as tick borne diseases and mycoplasma, or sinus infections or cysts? Do they do throat cultures and check family members to make sure they're not carriers? Do they check the immune status of these kids? Considering how many PANDAS kids have failed to respond (or had adverse effects, or just continued to spiral downward while well-meaining parents are thinking they are doing "all that can be done") from SSRI's and other psych. drugs, I would disagree with your stance that CHOP's treatment of PANDAS kids is "better than nothing". Antibiotics (+/- a course of steroids) would be "better than nothing". PEX/IVIG would be even better. (Oh, and I'm glad CHOP is treating SC cases, that is great. They should.) When we received our blood work back, Dr. E did not want to prescribe abx. SHe wanted another trial of SSRIs....this would have been like the 10th! She wouldn't consider anything else until we tried CBT across the street at U of Penn. I know there are many who rave about CBT and ERP, my kid was in NO WAY cognitively able to reap benefit from these therapies, she was a mess! After two more weeks passed and dd was getting worse on the ssri, Dr. E's fellow had pity on us and prescribed 250mg Amoxicillin 3x/daily for 10 days. I took the script, but had already made an appointment to see Dr. T who quickly switched her to zith. No, CHOP is not in the practice of prescribing abx, their medical management clinic which Dr. E runs prescribes psych meds. Can someone comment on whether Dr. E was the only CHOP doc there??? Was there a different department...neuro? anybody else?? I certainly hope so. We were referred to Infectious Disease. I also called to verify that was the correct department because it just didn't seem right. I was told this is where they treat PANDAS. I walked out in tears because I was told that there was nothing to do except get her to a pediatric psychiatrist. This ID doc said that IVIG and Plasmpheresis were very dangerous, and not proven at all for PANDAS. Also antibiotics were not needed either because it was a problem with antibodies not actual infection.

Hershey was a dead end for us...our ped called 2 pediatric neurologist's and was told they don't believe in PANDAS...but there is a pediatric rheumatologist who is "open to it". Well that rheumy turned out to be kind of rude and even called himself a "disciple" of Singer. I'm pretty sure Hershey was a dead end for another family too. I would love to know if you have any new info about Hershey.

My daughter also had to "confess" things that were minor. It would get her so upset, and she would cry for a long time because she felt guilty over normal things. It was so sad to see her like that.

I second that!

Isn't the M protein involved in PANDAS antibodies production? Hmmm. I know the M proteins from some strep strains are involved in RF...but have they gotten that far with PANDAS and M-typing? Honestly, I do hear "M-protein" and the bells ring in my head, but I don't understand it much.

We haven't used clindamycin. That's a great idea. See, I knew you guys could get me going again! Thanks to all! Peg, my daughter was 6yrs old and about 42 lbs, and she was prescribed 300mg 3x/day for 10 days--that is a high end dose for adults with serious infections. I have googled in the past, and found that Clindamycin is anti-inflammatory...and one site I read said that it acts like a macrolide at higher doses -- but I have not been able to find it again. I'll try to look for it. Also, when I found J. Zulli's website (e-pandas.com)last year -- she had posted that when her daughter got PANDAS, she needed 1 month of clindamycin. But I have been back since then, and it is no longer there (she last revised it Aug '09 -- I found it in May '09). She's on a macrolide- zith, and has been for a long time. We took her off, only for the course of the rifampin and then continued it. Clindamycin is biaxin, right? No, Biaxin is Clarithromycin -- that is a macrolide. Clindamycin is Cleocin...some places I have read that it is a macrolide, and others I have read that it is a lincosamide. Perhaps lincosamides are a subset of macrolides? I don't know. Here is a wiki link to lincosamides: http://en.wikipedia.org/wiki/Lincosamides

We haven't used clindamycin. That's a great idea. See, I knew you guys could get me going again! Thanks to all! Peg, my daughter was 6yrs old and about 42 lbs, and she was prescribed 300mg 3x/day for 10 days--that is a high end dose for adults with serious infections. I have googled in the past, and found that Clindamycin is anti-inflammatory...and one site I read said that it acts like a macrolide at higher doses -- but I have not been able to find it again. I'll try to look for it. Also, when I found J. Zulli's website (e-pandas.com)last year -- she had posted that when her daughter got PANDAS, she needed 1 month of clindamycin. But I have been back since then, and it is no longer there (she last revised it Aug '09 -- I found it in May '09).

Please be careful about adding in OLE while on Antibiotics...I think they are contra-indicated. I have come across a few websites that mention that it can make the antibiotic ineffective. Here is one that I found with a real quick google: http://www.anyvitamins.com/olive_leaf_extract.htm

I'm really sorry you are going through this...I'm praying for your family. Perhaps a compromise on the Rifampin? Three of my kids were prescribed it for only 3 days. It was piggybacked onto the last 3 days of a 10 day treatment with other antibiotics. Two (non-PANDAS I think) were cleared of their strep, and my PANDAS daughter still had to to move onto Clindamycin. I'm going by memory...but you have tried clindamycin already, right?

My family have been very happy with Dr. Latimer and her staff. I don't have any experience with any of the other PANDAS docs.

Thanks for the update. I don't do much in the way of supplements because (1) my daughter is doing great and (2) I get concerned about adding too much in, and one thing being contraindicated with another...and such. I give my daughter her antibiotic in the morning, afternoon & evenings is when I give probiotic, fish oil, multivitmin and mineral, and extra vit c. I was wondering, since you have a lot of experience with supplements, what are your guidelines for adding something in...ya know, how long before you don't add anything else, how long before you would say a supplement is working, not working, or making things worse....I'm considering adding something else in...

It's still possible to get strep while on antibiotics...probably a lot less likely, but still possible. So, if you want to be on the safe side, get his throat swabbed and then you can ask for a 72 hour backup culture. I do think that the nasal sprays can cause a sore throat--allergies can too, especially if the throat itches and he sucks on the back of it--torture! http://www.drugs.com/sfx/flonase-side-effects.html I've always taken the "better safe than sorry" approach after my daughter's PANDAS...but I also have a good ped practice that doesn't hesitate to check for strep if I ask. But, you need to go with your mommy gut, and if there are no PANDAS behaviors getting worse, then you need to weigh that into your decision. Good Luck!

Do you have any idea if Dr. Murphy believes in antibiotic prophylaxis after a child has recovered from a PANDAS episode? If so do you know what her choice antibiotic is?

We used Omnicef for my daughter last spring when her PANDAS symptoms came back. She was previously on pen vk as a prophylaxis, so I wanted to just move away from the penicillins all together. By the end of 10 days, we did see improvement. She continued on that and had a steroid taper. In August we dropped her down to 150 mg once a day as a prophylaxis. We did start to see some VERY MINOR issues return -- but I am not overly concerned right now. So for us, yes, we had a good experience with it...I'll let you know if it keeps the strep away. My daughter takes the liquid, there are no dyes in it. Cephalosporins are somehow related to penicillins. An allergist/immunologist told me that it is almost unheard of for 2nd and 3rd generation cephalosporins to cause allergic reactions in people who are allergic to penicillin. Omnicef is a 3rd generation. I was a little concerned because my daughter had a rash on amoxicillin 2 different times. Personally, I'm okay with labeling her with a penicillin allergy -- I don't trust pen or amox at all.

I know I've been told that too, by both the ped and Dr. L. -- that is one of the reasons you don't want to go too far out past a month because that is when the real side effects start. So I guess like most things, the process starts right away, but doesn't fully kick in for a while.

For me, that is the million dollar question. The correct way to time the prednisone, while still making sure the body can fight the infection. I remember asking a doctor (can't remember if it was the ped or Dr. L.) how soon before pred suppressed the immune system, and the answer was right away. As you know, we've had great success with 2 prednisone monthly tapers. The first time, her strep was cleared a couple of weeks prior with clindamycin, and the second time she was prescribed 10 days of Omnicef by one of her peds before we took her to Dr. L. Each time, she was given about 10 days antibiotics prior to starting the pred. I actually believe that this is one of the reasons we've had good success with the pred--the infection gets addressed first. I should add that my daughter has no evidence of any immune issues--other than her PANDAS.

It seems like some days her tics are worse then others they are the same. My dh does not think they are any worse so maybe it is just me. I might be looking for something that is not there. Was your dd ever on zithro? Sounds like Omnicef is working for you. Did you find one better than the other for your child? This exacerbation has been almost 3 months now and school starting is not helping. I am desperate for this to help - but I am also trying not to make a mistake in the process. Thanks Yes, my daughter took zithromax for about 3 mos last year. Only 100mg a day to prevent strep. The doctor was pretty sure that her strep was cleared by 10 days of clindamycin (300mg 3x/day) that she took a few weeks before she was treated for PANDAS. She was given the clindamycin because she had a positive result on a rapid strep test (for the 4th time), and after that course her 72 hour culture came back negative. I understand your desperation, and your caution. I think you can relax about making a mistake. A couple of months of an antibiotic is probably one of the more conservative approaches. IMHO, it is more conservative than traditional meds used for tics or psych drugs. However, keep up with the probiotics. If your daughter's only symptoms are tics, then I think it may be beneficial to check out the Tourette's Syndrome/Tics forum. There are tons of ideas about supplementation, and learning/dealing with other triggers for tics. If you are dealing with PANDAS, steroids may be a good next step. However steroids can make Tourette's (and Lyme) worse...so really proceed with caution, and rule them out first.

I think so!