Kiera

Thanks for the update. Hope there's no headache this time! We did IVIG with Dr K 5wks after you, still waiting for a response. How long before yout dd saw a difference??

Thanks for the update. Hope there's no headache this time! We did IVIG with Dr K 5wks after you, still waiting for a response. How long before yout dd saw a difference??

Thanks for the update. Hope there's no headache this time! We did IVIG with Dr K 5wks after you, still waiting for a response. How long before yout dd saw a difference??

NancyD, thanks for the "look at the sky" trick! Worked like a charm yesterday with a medium sized pill! very excited!!

Thanks for sharing! Just wondering (since my ds has had a litany of diagnosis since age 2 also) do you think the antibiotics caused the c. diff. alone, as I'm presuming your ds had symptoms prior to pandas diagnosis and starting abx? Or do you think maybe the c. diff was there prior and abx made it worse. My son has the opposite problem of constipation so I don't think any c. diff.

I crush the augmentin (not XR) in a pill crusher (get at pharmacy) and give mixed in with choc pudding, he does fine with this even though he's a sensory, picky eater. According to Dr K the liquid version is not quite as potent, that's why I went the crushed pill route. At the same time we are practicing swallowing mini M & Ms, he can swallow tiny pills so we'll just keep practicing!

It's just best to give a dose intraop because 1) there are alot of bacteria in the mouth even in normal people, so even with dental cleanings Dr K recommends extra antibiotics pre and post for pandas kids 2) there may be infection in the tonsils and adenoids themselves (my ds's had pseudomonas) and 3) you're cutting the T & A off thereby providing access for the infection to get into the bloodstream. For many, T & A causes a pandas flare up. My ds was in a constant flare when we did the T & A so I didn't notice any increase in symptoms after it.

I don't think this is on time but yes, I asked my ds's ENT to give iv antibiotica just to cover all bases. Hope it went well!

dcmom, yes, it's just more evidence to me of his immune system dysfunction! These tests were done prior to his initial pandas flare-up and diagnosis, although he's had multiple issues and diagnosis since early childhood (undiagnosed pandas). Just wondering if you ever had your kids retested when not in a flare up and were they normal then? My ds has never been completely out of a flare-up so I doubt they're normal now.

Funny how alot of your kids are truely allergic, yet tests are negative. My ds has the opposite problem! Both his blood IgE allergy and skin allergy tests show severe positives for just about everything, yet he's never had an anaphylactic reaction to anything! Go figure!

Well lasix is a commonly used diuretic, and diamox is also used for diuretic effects in neuro patients to reduce cerebral edema. It is also the drug given to mountaineers to combat altitude sickness. Zofran is an anti-emetic, very expensive, used for chemo pts and now for morning sickness. My ds 9, got some zofran for a stomach virus/vomiting, it came in a chewable and works great! I also gave him one post ivig and worked great also. Just wondering about pushing fluids, then giving a diuretic to get rid of fluids, but if Dr T recommended it, he is a neurologist, I guess the aim is to reduce cerebral edema, but continue to hydrate the rest of the body. Just a few thoughts!

All I can say is I still use florastor, just stopped yougert and uncooked cheese and say a big difference. There's also the issue of live active cultures vs non live (just to confuse us more!)

Generic is fluoxitine, just filled my ds's for $8.

Great news!

As far as I know, strep thermophilus is still different from Lactococcus lactis, and both florastor and culturelle don't have strep ther. Removing strep ther. made a big diffrence in my kid!

My only piece of advise would be that if the neurologist does not think it's PANDAS/PANS or know anything about how to treat pandas/pans then immediately find a pandas Dr. All the main pandas websites have lists of providers in your state. The choppy nature of the presentation in your kid, together with her young age and high myco p indicates pans for sure, you need someone who knows what to do (and they are hard to come by). But don't give up on this diagnosis, good luck.

steroids can make your glucose levels go up so I guess that's how it can cause yeast.

Always do a probiotic with abx. Culturelle and florastor are two of the best but there are many to pick from. There is debate as to whether strep. thermophillis in alot of probiotics can cause a problem even though it's not GABHS but I'm reading more that it does effect some kids so I avoid it and Dr T is now recommending going off these brands with it to see if it's a problem or not for your kid. Yougert and cheese contains S. Therm. also, so should be avoided if a problem. The above two, do not contain it.

Well Dr K does believe antibiotics can manage symptoms for a few years but eventually most need ivig. I don't necessarily agree with this though as reading this forum, many are managing symptoms with prophylactic antibiotics and then bumping up to full strength with infections for a few weeks. I think it all comes down to degree of dysfunction. You have to decide how badly the symptoms are interferring with life. Dr K measures it like they do to access the need for meds for ADHD - namely is it negatively impacting his school, social or family life? IVIG is a blood product so you again have to weigh benefits vs risk. And yes, I do think alot of people are sucessfully treating with abx and moving on with their life, so we don't necessarily hear all the good stories, but this is hard to quantify, hence the need for a pandas registry, which I believe someone is trying to start (maybe OCD foundation?). I have read florastor and culturelle are great choices and can be given at the same time as antibiotic and no strep. thermophillus in them. I don't think the abx really tax the immune system, it's just that in some kids the autoimmune exacerbation gets so severe that abx no longer work and stronger immune modulating therapies have to be tried (IVIG).

Well antibiotics have a few different functions in pandas kids. 1) Primarily,(as in rheumatic fever where strep attacks the heart), as a prophylactic to prevent or reduce future strep (or other) infections. Because with each subsequent infection, pans symptoms return and it gets harder for the kid to get to baseline each time. So in the case of rh. fever you want to reduce further heart damage and in the case of pans you want to reduce further brain damage. 2)Antibiotics in pands kids appear to have anti-inflammatory effect, hence an effect of reducing symptoms and 3)they also seem to have an immune-modulating effect, meaning they somehow help the immune system get over the autoimmune reaction. It is recommended in pandas/pands kids that they need an initial at least 30day dose of antibiotic to clear an infection, as opposed to your typical 5 or 10 day dose a normal kid would take. One of the few trials on antibiotics in pans kids showed less infections, hence less pans symptoms. The expectation is that with each new infection your kid will react with a pans flare of symptoms and that's what we're trying to avoid or reduce. That's why also the ivig clinical trial at the NIMH currently have those kids on antibiotics for at least a year. It doesn't look like any of the other tests warrent forther review since they're so close to normal limits. The paleness may or may not be related to the antibiotic. And as regards the slow growth - are you are your husband on the smaller side? Since he's 12 he may just be pre growth spurt and will catch up once he hits the teens. Or another reason, during his pans flare-up was his appitite effected? My ds is on the small side also, but he has a lousy appitite and pandas sensory issues cause further eating issues, just a possibility. Lastly, I'm surprised Dr B's NP didn't have some more indepth answers for you. Also as regards antibiotic resistence, you have to weigh the benifits vs the risks. When the medical comminity talks about antibiotic resistence generally they mean in a race as a whole, if the whole nation went on permanent antibiotics, yes we'd be in trouble pretty fast. But when we're talking about a few select kids, no it's not generally a problem. They're treated rh fever this way for years with no ill effects, and lyme and acne etc. Plus if your kid becomes resistent to one, there are many more to pick from. Hope this helps!

I'm presuming it's in liquid form, then you have to use it. A pharmacist told me it's still active after the 10days but begins to loose a bit of potency every day thereafter.

I don't think it's a big deal if you give the extra 5 days of zith, many pandas kids are on zith long term, or some other antibiotic for years even. In the past, how long a dose of antibiotic cleared the tics? For pandas kids they do recommend an initial 30day course as they usually need a longer dose than your typical kid to clear the infection. It may just delay the tics returning by another 5days and then you'll know it's probably pandas you're dealing with!

A few things to consider Wombat 1) you don't have to have ALL the symptoms of pandas, emotional lability etc. to have pandas! You can have pandas and just have the tics, or just the OCD or a combination of the symptoms. Some kids cycle through many symptoms and don't have them all at the same time. Also, as evidenced by the 12 kids in Leroy, NY last year, there is a theory of maybe a spectrum of pandas, or atypical pandas, just like autism. 2)Just because you never identified a preceding illness does not rule out an infection as a trigger, read "Saving Sammy" he never had any symptoms of strep throat but developed OCD each time, possibly due to an immune deficiency ?? and 3) Just because your symptoms were never zero, does not rule out pandas either as you were never TREATED for pandas! Even our pandas kids that are treated, many are left with a 5-10% residual pandas symptoms. Lastly, snce you said your symptoms came on overnight, I agree, that sounds more infection triggered than not. Plus you can't take the official line on defining pandas as absolute as the pandas experts have a much broader inclusion scope than the official diagnostic criteria. The official line is very narrow due to political reasons! First thing you should do is get a throat swab and culture and run a set of strep titers to see if strep can be identified as an issue for you. Good luck!

T & A didn't help with symptoms but so glad they're out as they were scarred and infected, even though looked normal. So I'm sure they were contributing to the ongoing autoimmune reaction and we've eliminated one more hidden source of infection.

Thanks so much for posting! I'm making copies for our pandas support group families. My ENT also suggested the xylitol nasal spray to keep strep out of the sinuses!