KaraM

So on Priscilla's note, try that test someone mentioned a few weeks ago to check for yeast. First thing in the morning when you wake up, take a glass of water and spit into it. See if, after a while, your saliva dissipates or forms long strings and gunk at the bottom. I have no idea if it's fool proof and I'm pretty sure there are some more scientific tests for yeast (the M OATs screen???), but at least you can try it tomorrow.... So sorry you're dealing with this on top of everything else... Kara

I think so much of this might depend on how much you personally need some validation as well as what your financial situation is. If you personally don't need to be convinced, then it may not be worth the money. For us, it was the best $400 ever spent, because it gave us the confidence to pursue PANDAS with a vengeance (we weren't sure). It was a lot of money (and we got some help from family members), but looking back, I would have sacrificed months of eating out, etc. to get that validation and direction (even if the results had been negative). You, however, have a diagnosis from one of the PANDAS docs, maybe that's enough for you. As for the difference the results can make with local doctors, our pediatrician had been willing to do a throat culture (after a suggestion by the therapist) when we first sought treatment for OCD . But when that came back negative, he dismissed PANDAS. A few months later, on the basis of another child with PANDAS symptoms in my daughters class who tested positive for strep, the pediatrician reluctantly agreed to prescribe antibiotics for 14 days. He then also agreed to do a blood test for strep. It was not until we got the C test results back, however, that he agreed that PANDAS was "possible" and prescribed Zithro prophylactially and referred us to a specialist. We were lucky that he was willing to read through everything we gave him (the study article, her score and Buster's FAQ). So for us, the results did make a difference, even though we had an initially skeptical pediatrician. I think this is a matter of luck - how willing docs are to read through and consider the study, PANDAS literature, etc. What worked for us and for some others here, has also not worked. As for the local neurologist: if that is the only reason you want to do it, I agree with the recommendation that you give him a copy of the study before hand and get a feeling for how he will respond if the results are positive. I also agree that, even if is a few hours away, if you can see an expert like Dr. Latimer, you should just do it. You want your child to be in the hands of someone who has dealt with hundreds of PANDAS patients, not just a few (or none).

My dd7 (now 8) around 60 lbs did 350mg Zith for 30 days, now down to 250.

There are a few of us around, don't worry!! As for the academic performance, I have seen with my daughter heard from a few different parents, that once the PANDAS is being treated, that the kids catch up quickly. They may actually have been getting it all along, but just couldn't complete the work or communicate in a way to show that. Prior to the onset of PANDAS my dd was a pretty conscientious and relatively strong student. But last year, she was having difficutly starting assignments, or if she started, wouldn't finish. Her work was sloppy. Her reading progression had halted. Getting her to do her math homework was torture. Fast forward to now, she is once again doing pretty well. She does her work in school and only makes what I think is an age appropriate fuss about homework. Her reading is much stronger. I wonder a little bit about math and may post a separate question about this. That's the one area that I'm still concerned about. Kara

That's interesting. We see Dr. B., too. My dd8 has responded very well to abx - she's been on them since the end of March. He thought she should stay on through the winter (unless things get bad again and we have to consider IVIG). The plan is if she continues to do well, to try taking her off in the spring. So clearly he'll go more than just a few months. But apparantly not for years... The other thing I think we all have to remember is that every child is different, so it makes sense if treatments vary a bit as well. As someone else said, just educate yourself as much as possible so you know what questions to ask... Kara

Thank you for sharing your wonderful news. I am a true believer in trusting your gut.

Searching Mom, Did Dr. Infante indicate whether, if the Cunningham test results cam back high, he would re-consider his position in spite of the low strep titers? Thanks, Kara

This brought tears of joy to my eyes. I'm so glad for both of you. Happy, Happy Halloween! Kara

Great news all around. Congratulations and best wishes for continued and sustained improvement!! kara

Also, aren't some antibiotics more harsh on the stomach than others? Isn't Zithromax supposed to be relatively easy on the digestive system? (I think I remember seeing/hearing that somewhere . Where does Omnicef stand on that spectrum? What if they tried a more gentle antibiotic through the pic line? Is that possible? Would it make sense?

Wow. This will be so interesting to follow and so amazing if the antibiotics work! I honestly believe that PANDAS goes far beyond Pediatric patients. Please keep us posted. Kara

AGree with Phasmid ...but by all means call or email Dr. Bouboulis and tell hime what is going on. He should be able to prescribe whatever makes most sense.

My dd7 (now 8) did not have tics. Severe OCD, major rages, depression, ADHD like behavior, fight or flight, and I think some math skill deterioration.

The Zith dose sounds low to me, too. Can you at least get your doc to prescribe a higher treatment dose for a short period - maybe a week, then go back to a lower prophylactic dose. Our pediatrician started my dd8, 62 lbs started at 350mg Zith for 5 days, then halved that until for 2 months until we could see specialist. Dr. B. then increased it back to 350mg for a month, then back down to 200-250 where we are now (6 months later). Also, you may want to consider adding some ibuprofin for a short period (with doctors permission of course). Kara

Ditto the recommendation on contacting Dr. B. I heard Stella giving a patient an email address for questions (not sure if that's just for IVIG patients or not). Maybe someone can PM it to you if they have it. although I think he also has an emergency number. Have you tried adding ibuprofin. Did he recommend or discourage that? It could just be a blip on the road to recovery- I think we've all had those. Maybe/hopefully today will be better. I remember those contamination days very well. My heart and thoughts go out to you. Kara

You are absolutely right - uneventful is good ! I don't mean to sound like I'm not thankful for that! The dosage is slightly higher in the pill (the 1 tsp of liquid was 200-225 mg, the pill is 250). He said that was not a big difference. If we had stayed with the liquid, he would have kept the same dosage. I didn't ask about how long to go without vaccines - I'm assuming for now while PANDAS is an issue - hopefully it will go away! I am happy to report she wavers between 95% and 100%. She's been holding steady at that since mid September. Above 90% all summer.

Ditto with the advice on not vaccinating. We saw Dr. Bouboulis yesterday and he did not want my dd8 to get any vaccinations or immunizations (granted she already had the ones you are referring to). A lot of children with PANDAS diagnosis are on prophylactic antibiotics - my dd has been on zitthro since March 2010 and will stay on it until at least March 2011. Zithromax is one of the antibiotics that goes intracellular. It is also an anti-inflammatory. since brain inflammation is an issue with PANDAS, there is thought that it helps on that front. Some people give their children ibuprofin here and there when days are bad, on the theory that it is an anti-inflammatory. A lot of people also give their children lots of fish oil for the same reason. Your sister-in-law sounds great. Maybe it would be good to have her consult with one of the PANDAS experts like Dr. Trifiletti or Dr. K. Kara

Oh my. I wish I had some advice to offer. This is just horrible. My first thought was to get a psychiatrist involved, but it sounds like that's in process. Maybe she can advise how to deal with him at home. You're a PANDAS mom, though, so that tells me you have followed your gut in the past and your gut was right. Remember that. I am so sorry. I will keep you and your son in my thoughts. Kara

Well, we had a 6 month follow up visit with Dr. B. yesterday. Our dd8 has been on Zithromax since March and is doing quite well. Dr. B did not want to change anything (except switch to a pill at my dd8s request since the liquid tastes so bad - she did fine swallowing it in cut in halves this morning). She will stay on this at least through March. He did order a chem screen to check her liver (we had been giving her Motrin quite a bit over the summer). He also recommended we add Culturelle to her pro-biotic intake. We had just been giving her yogurt. He said one of the reasons he thought she was responding so well to just the antibiotics was that we had caught PANDAS relatively quickly (her symptoms first started at the end of last summer - so we began abx about 6 months later). he said some children who have it for a few years before treating can respond to antibiotics alone, but most need more (i.e.IVIG). My dd was also showing some low antibody levels to the Prevnar vaccine and Tetanus, but he said he does not recommend any vaccines or immunizations - not even Flu. He does not want to cause an immune reaction. Long drive for a relatively uneventful appointment - but I am thankful that we seem to be doing the right thing. I'm also thankful that we do live close enough we can actually drive there within a day. Kara

We just saw Dr. B yesterday and he advised against it or any other vaccinations/immunizations at this point. (my dd8 showed a low response to a couple she got as a child). He said they may activiate an immune resonse and that we did not want to do that.

My dd8 has been doing very well the past few months. We have only been giving her Zithromax (and Motrin until recently). It will be interesting to see if he recommends any changes or stays the course. We'll be there at 9am. If anyone else will be there then, let me know. Kara

While it stinks your child probablly has PANDAS, I think it's great your doctor is open to start treatment and admit it's out of his league. Hopefully he'll be willing to at least cooperate once you are in the hands of an expert. I am not a medical expert by any means, but I wonder about the Keflex prescription. It seems to me most people are haveing success with Zithromax or Augmentin. But at least she's on something. I think you should know within a couple of weeks at the most (and maybe/hopefully a lot earlier) if it's working. Any people out there using Keflex successfully? Look at the FAQ in the helpful threads section of this board or on www.pandasresourcenetwork.org. There is discussion about they type of antibiotic on there. Kara

I would say yes to all. On the other hand, my non- PANDAS child also gets a bit out of hand when he's tire, hungry, getting sick, stressed, etc. I'm finding as my child gets better (we are now between 95% and 100%), it's sometimes hard to tell what is just develomentally normal and PANDAS (I'm mostly referring to anger, emotional swings, since that was a big issue for us). But I also see an uptick in "questioning" OCD during these times - clearly PANDAS to me.

Hi Sorry you have to be here. But welcome. And so good you have the diagnosis. In some ways (although it's probably arguable), that's one of the biggest battles. See one of the docs below. I would also question the Celexa. SSRIs have been known to make things worse in PANDAS kids. Kara (856) 983-6675 Dr. Rosario Trifiletti, MD 246 N. Franklin Turnipke Ramsey, NJ 07446 (201) 236-3876 rtif@neurokidsr.us Dr. Denis Bouboulis 106 Noroton Ave. Darien, CT. 06820 (203)655-9904 125 Strawberry Hill Ave. Suite 101 Stamford, CT 06902 (203) 323-7744 http://www.advanced-allergy.com/ Dr. Elizabeth Latimer, MD 6420 Rockledge Drive Suite 4920 Bethesda, MD 20817

Yes, thank you!