airial95

Can't answer your questions specifically, but I can share our experience with Rifampin. We went on it the first time last summer, then was off until September, and have been on it ever since (with one month break in January) It has been, by far, the harshest on my son's tummy, but the only one that has kept the strep away for us. We have found that he complains of stomach cramps with the rifampin if he takes it without food. If we give it too him close to a meal, he's fine. If he takes it before eating and doesn't eat quickly enough - he gets the really bad stomach cramps. May be worth a try.

We have used Azith, Augmentin, Rifampin, Cipro, and cefdinir. Rifampin by far has been the best at keeping strep at bay - but it also has been the harshest on the tummy. And it has to be taken in conjunction with another antibiotic. Before you swtich, however, I would try keeping a journal or daily log of symptoms. We found that we had our most "noticeable" improvement in the first two weeks of treatment, but then it seemed to level off - however, when we looked at our daily logs, we saw that we were still making very steady progress - just at a slower pace. We didn't swtich abx until we saw a pattern of recurrent strep on the abx prescribed, or ineffectiveness in the logs. Remember - recovery from PANDAS is described as being "sawtooth" - meaning one step forward, two steps back...up and down. The logs were the best in helping us really see the patterns. We used an excel spreadsheet (if you want a copy - PM me an email address and I'll send it over). If your local doc is willing to rx abx as needed, and willing to try different combos - I'm going to disagree with Deedee and say keep him on board. Yes, having a PANDAS expert on the team is important, we have 2. But in 3 years of dealing with this condition with 2 kids, we have found our open minded ped to be our best asset. We can get in ASAP for a strep check as needed, he's willing to write the rx for abx at the first sign of symptoms - positive culture or no, and he's much more accessible than any of the experts tend to be. Most importantly - he's willing to learn. The only way to get more docs treating this condition is if we stick with the ones who are willing to learn and treat - even if they don't know everything. Let them work with the experts you bring into your team, but our ped is our point man. If your doc isn't willing to learn and isn't open minded - then by all means - get thee to an expert ASAP - don't waste time with them. But look for another local option - I can't stress how much that has helped us over the last 3 years.

My little one was awesome at taking his meds, for almost 3 years, we would just lay them out when it was time, and he would just come up and take them on his own, no muss, no fuss. Then last summer he got strep again, and along with it was this massive anxiety about taking meds - to the point where he would vomit he was so anxious. Shortly thereafter, is when his abx dosage increased to the point where he really needed to start doing pills vs. liquids (b/c it was so much liquid!) and it went down hill from there - hiding it in food was a no-go, and on average it would take us over an hour to get his meds in him - not without major wrangling, vomitting and sometimes even holding him down. No one was happy. Our therapist gave us a relaxation technique to use with him about 20 min prior to medicine time, and it worked to some extent (got rid of the vomiting at least), but when he started using the cup that was a step in the right direction - he would still have anxiety, but not as bad. When he made the decision to start swallowing without the cup - it was a turning point. He still has rituals to taking medicine (the dog has to come and watch him - it's quite the production), but it's usually quick (now getting him to take it when we're on the road for IVIG with Dr. B was another story - after Day 2 we were Skyping with the dog to get her to watch...I'm not kidding...) Recently - we got him one of those pill sorters and pre-loaded it. He loves that he can be "in control" of his medication, even though he's only 5. Maybe something like that will help your 9 yo - letting her be "in charge".

I think Dr. Shulman has done a series of YouTube videos about PANDAS - can't remember though...

My son had his onset at 19-20 months old after a strep infection, but wasn't dx until 26 months. He did have a very bad reaction to the H1N1 shot around 23 months (we were taking a trip to mexico - it was when it was rampant down there so the ped suggested we get the kids vax for it - we thought it was a good idea at the time...) Since his dx, we have kept both kids up to date on vax as well, like Hopeny, we try to balance the overall good with the individual bad. We have done it on protracted schedule, only one shot at a time, with a couple of weeks in between to see reaction. We do not do the ful shot at all for either child - after seeing my son's reaction, we felt the reaction was too much to risk that one. This approach has worked for us, we take each vax on a case by case basis. I doubt we will do the HPV vax for either child when the time comes - but I still have a few years to make that decision and will cross that bridge when we come to it! There is a local group here led by a Dr. that advocates delaying all vaccines until after 2 years old. Their organization is called "Two and Talking" - probably can find them on the web.

We tried the spray, but my son didn't like it. We also used the cup - it's called the Oralflo cup for anyone interested. sometimes though, the pill would get caught if the sippy part of it wasn't completely dry - which was a challenge if more than one pill needed to be taken at a time. (we used a hair dryer to dry it out if needed). Within 3-4 months of using the cup, my 5 year old decided he could swallow pills without it, and has been doing it ever since - even swallows those horse Augmentin pills and multiple pills at a time. It really was very helpful.

We got back to 100% for the first time in 2+ yes with tonsillectomy. It was immediate and wonderful - like beeskneesmommy said, abx prior, during and post-op. Unfortunately, it wasn't a permanent fix for us, our son got strep 6 wks post op and we were back to square 1. But I would do it all over again.

My son was also what you would call relatively healthy prior to PANDAS. A few ear infections as an infant (expected when they start day care), and an impetigo infection at 19/20 months old. Three weeks after that impetigo infection our behavioral issues started - it progressed until we finally talked to the ped about it 6 months later and he suspected PANDAS b/c of the timing of the behavior changes and the previous impetigo infection (which can be caused by either strep or staph). The change we saw in my son within 2 weeks on Azith was amazing - he wasn't back to himself, but it was night and day difference from where we were. Since his dx, we have been diligent about tracking behavior/symptoms - taking him to the dr. when things change. He has since had 30+ strep infections (positive cultures) since his dx, and never once has he had a sore throat, rash, fever or ANY outward symptom of strep - just changes in behavior. He has also never had elevated strep titers - which isn't uncommon either - 20-25% of the population never see a rise in titers. Who knows if he had previous untreated strep infections in the 6 months between the impetigo infection and when we were dx with PANDAS. Considering his track record since then, I would say that he must have, but we just never knew. I would also recommend trying Ibuprofen with your daughter. It can help reduce the inflammation in the brain from PANDAS and may give you a clue if that is the culprit behind her wiping behaviors.

My son is younger - but he gets a lot of "residual OCD". After all the symptoms are gone, there are still some ritualistic behaviors remaining. Our therapist described it as more learned behavior than anything. She correlated it to someone getting addicted to pain killers - initially - they need the drugs (rituals) to help with the pain (anxiety), eventually, they continue to use the painkillers long after they are needed b/c they know they will feel "bad" if they don't. It's the same with the rituals - he may not really feel the anxiety anymore, or need to perform the rituals, but he remembers that he feels "bad" if he doesn't, so he continues to do the behaviors. CBT helped us immensely with that part of the OCD, and has even given us tools to use when flares come back around.

Woo Hop!!!!

We've never done clinda, but the only abx that has ever given my son tummy issues has been rifampin (we have been very lucky in that regard), but he has been on it for a few months now and we've managed it well with pro-biotics. Just our experience. If you haven't done rifampin before - be aware that it can cause their urine and tears to turn an orangish/redish color - so don't freak out. And if you need to have it made into a suspension - it stains so be careful!

Wow! I got lots of PM's for the spreadsheet!!! Make sure you included your email address, since I can't include an attachment through the forum emails. Thanks!

Lauren, I have a spreadsheet I used. If you PM me your email address I can send it to you

Lauren, I have a spreadsheet I used. If you PM me your email address I can send it to you

We live in FL - so I don't know how the warm weather thing works for UA...but I can tell you that my son typically does better when we are travelling. Our therapist used this analogy - which made sense to mW: when you're running late for work, and then you get a flat tire , it increases your stress as you're trying to change it, call the tow truck and worry about what you're missing at work. But if the wheel falls off the car completely, you just call out sick to work and don't worry about work anymore because you know there's no way you're making it in - so with the bigger catastrophe you're actually less stressed. She said it is similar for our son - when we take him entirely out of his element his compulsions aren't as severe and he's more flexible because its all new. If we're gone a week or so - we'll see him become more rigid about 4-5 days in as he becomes acclimated to his surroundings. This is just our experience. I know others who have the opposite reaction to travelling, bit thought I would share.

It does sound likely. Getting early treatment can make a huge difference. Is your doc willing to give long term abx?

We have UHC, and have just been at dr. B's for IVIg the last two days (hence why I'm up...riding out the headache/vomitting- he's sleeping now, but there will be no sleep for mommy!). Here's what I can tell you: Dr. B is in network for is - even though we live in FL. So face to face apps are just a copay. (phone consults not covered ) UHC does no longer covers IVIG specifically for PANDAS as of 11/2012 De. B's office was able to get us pre-auth for HD IVIG every 8 weeks through 11/2013 - 4 total (this was our first). They got it covered under "specific AB immunodeficiency - no mention of pandas whatsoever". We have a history of positive strep cultures but lots of normal labs, although Sharon did say that there was one lab that they used to help - even though it was borderline normal (don't remember which one now sorry) Sharon also said that since my policy is a "commercial" policy there is more flexibility. Basically my company pays claims directly through UHC and basically cuts them a fee to use their networks/discounts so the coverages are more flexible. If they denied us, our HR dept could have stepped in and helped get it covered (which in my case they likely would have). Might want to have hubby ck on how his policy works. We have been overall happy with UHC for the PANDAS aspect anyways (getting my AS meds from the specialty pharmacy is another matter!). They have covered all our therapists, meds, etc. have given us no trouble with long term abx or refills either. How much of that is UHC vs. the type of policy I have no clue. Bit thought I would share my experiences.

I'm local - there are lots of things to do into the Tampa area, and if you're going this summer - the Rays baseball stadium is pretty close to Rothman. The beaches are great, and Busch Gardens in Tampa is really nice weekend if you don't want to haul to Disney. Depending on how old your child is, Legoland is fun, but geared towards the younger set.

Shivy Shiv is totally coming along!!! As for "early" treatment - while age wise it's still early for us, he's had PANDAS close to 4 years (onset with a strep infection May 2009). But because of his age we were conservative. UHC is covering it for us - but based on immune dysfunction. We have normal labs, but have had 30+ documented strep infections (+ cultures) since onset so I think that's why its getting covered.

Tpotter - even after the forums were seperated, there was still plenty of Lyme discussion here, along the lines of making sure folks were testing if they couldn't figure it out. So I don't feel that was ever lost. And I would like to hope that the tension has died down - but I just had a thread on the FB forum shut down because it went off-topic on Lyme and turned ugly - folks saying that "all PANS is Lyme, but "try telling PANS folks that" but "you can't because they go off". This is exactly the type of dialogue (from both sides) that caused problems in thr first place. Unfortunately it is still out there. Rather than engage them - I just reported it - maybe the same approach here will keep things civil. Ultimately it holds true - respect all the way around is what's needed.

For mentally preparing - there is also a free IVIG play therapy kit here http://www.immunedisease.com/help-and-support/baxter-resources/therapeutic-play-kit.html We got it for my 5 1/2 year old son who's going for his first IVIG next week with Dr. B. He loved it - it has all the pieces, and he has slept with his bear every night since he's gotten it. (He named him "Shivy Shiv" - no clue why!)

I'm not sure - but ddidn't Stamford just recently open a PANDAS clinic? I could be mistaken - we're on the other coast...

very well said rowingmom, after I posted - I thought about how the OCD/Tourettes' board folks would feel if the PANDAS/PANS forum was combined with theirs. They probably would get annoyed having to wade through posts about abx, IVIG and such - so I think the same holds true here. There is no doubt that Lyme can cause a PANS reaction - but the infection iteslf is so much more complicated, and has symptoms/impact unto itself - aside from the PANS reaction, that I'm still not sure going back to one forum does either group justice. But like I said, I've always respected the Lyme side of the equation - even if it doesn't apply to us - as long as we are afforded that same respect.

My 5 yo has been in a special ed pre-k setting for 3 years (getting ready to start K next year). He has a PANDAS dx, but his primary issue is the OCD. We have implemented a "safe place" technique into his IEP/accomodations. When the anxiety increases b/c he cannot comlete a ritual, or something is just "not right", he has the opporutnity to go to a special calm down place. The teachers do not "aide and abet" the rituals (like you're phrasing MomwithOCDson), but allow him to have to work through the anxiety. Admittedly - it didn't work well at first, but now it works great. He has labeled his OCD "Harvey" and now can tell the teacher that "Harvey is bothering him and he's going to his special place." He is praised and encouraged when he goes on his own, and is allowed to remain there until he's ready to rejoin the class. There are books and quiet activities there for him. It's worked so well, we've already started planning with his new school for K as to how it can be implemented into the new setting.

LLM - I tried to use the "Like This" feature but was told I had "reached my quota of positive votes for the day" (eventhough it's the first attempt at hitting like!). Not a good start to postiivity!!! But I would like to riterate your point about using phrases "in our experience", "something to think about", etc... it's something I always try to live by!! I'll also add that if I'm going to insert a differing opinion, especially one that may be "controversial" - I'll preface it with something like "some my not agree", or "this might not be a popular response" to highlight that I am not trying to be negative - just offering a different point of view. I feel it has gone a long way to helping keep discussions civil. And ditton on the FB group - we're all just trying to hlep our kids out! Disagreement can be healthy, as long as it's repsectful!!!