Kiera

Dr Melanie Alarcio, pediatric neurologist, Phoenix Children's Hospital, Phoenix, AZ. Great Pandas treating Dr!

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With T&A when they cut the tonsils out you're exposing any organisms in the Ts & As directly into the bloodstream. Did they culture the Ts and As post op? I asked for them to do my ds's and they had pseudomonas in them so needed cipro for 10days to treat it (need correct antibiotic to treat the infection).

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Yes, lets move backwards and not treat those annoying sinus infections. Low immunoglobulins? Who needs them anyway? I work in the medical industry and I can come up with a multitude of ways to cut costs that's not going to make the problem worse! Next they'll be making antibiotics a schedule II drug!!

Just found where I read it http://www.nimh.nih.gov/about/director/index-ocd.shtml

Powpow, it's an actual registry to track how prevalent pandas actually is, recommended by the NIMH.

Just want to let you all know I spoke with one of the NIMH researchers about the IVIG trial. He said they're about a year out from completion, need a couple more kids and results should be published shortly there-after. (Not soon enough for me! Currently fighting ins for it)

Just wondering if anyone has the inside line on the pandas registry which will be run by the OCD foundation, I believe??

sorry my typo, I meant which Drs do PEX for Pandas, not IVIG, thanks.

Hi all, My ins. is denying ivig for Pandas yet covers PEX for pandas as a 1st line treatment!! Seems to me, PEX would be more costly (hospital stay etc) am I right about this?? And we all know insurance co.s have cost as the bottom line, not which treatment is better! Also, does most or all PEX get followed up with ivig anyway, I though this was the case, what are the chances of PEX alone providing relief? One last qusetion, I'd imagine it would be difficult to find a Dr willing to do ivig for Pandas unless they had experience. I believe Dr E. does, are there any more? Thanks for responses.

Hi everyone, I have a question for those who see Dr B. It seems from reading here that his protocol seems to be ivig every 8 weeks. I was just wondering is this how he does it with everyone or does he evaluate response before ordering next one? His protocol is in opposition to Dr K's who does not recommend frequent ivigs and says wait at least 3mts before re-evaluating. I know each of the specialists has their own protocols and viewpoints. Am also wondering how everyone is getting this many covered as I'm currently fighting ins. for the 1st ivig!! A separate question - I'm contemplating consulting Dr B in the future as I believe my ds needs a comprehensive immune system work-up and he seems like the best for this, my question, does he or would he order all the blood work ahead of time before consult to bring results with us, or does he do phone consults over the phone for follow-up to interpret results? Otherwise that means at least two cross-country flights to get his opinion, cha-ching, cha-ching, sigh!! Thanks for your responses.

Hi everyone, Has anyone had success getting IVIG covered through Cigna? I seem to remember reading that it was covered somewhere?? I've just received denial again, due to "off label" and am appealing again. Need more ammo for next letter, would be great to include instance where it has been covered previously so precedent has been set. Thanks to thenmama for posting her appeals letters, was a big help, but still need more:(

Agree with dcmom! I waited 2yrs manageing to get by, before seeing pandas specialist. Do not settle. Dr B is next state over in Ct and he's an immunologist, will do thorough work-up. I had to fly cross country to see a specialist, but well worth it, you won't regret it.

Sensory levels get extremely hightened here too with exacerbations - smells of foods, going off his favorite foods,running out of restaurants/stores due to smalls, running out of hair-dresser due to spray bottle, hands on ears with noise etc. Check old posts here, there's lots of sensory issues.

Katie, you could start @ www.pandasnetwork.org to get an overview of pandas and how the mechanism of this disorder works, then repost back here with your daughter's symptoms (a brief synopsis) and people can chime in. In a nutshell, it's usually (but not always) a sudden outburst of symptoms - tics/ocd/sensory/rages/separation anxiety/urinary frequency (to name but a few) following a strep throat or other infection caused by an autoimmune reaction in the body. You can have any combination of the above, don't have to have them all. Might need to do some investigative testing to see if you can find a trigger.

Yeah for Dr T! You tell 'em!!

I think most kids have found benefit from continuous antibiotics, at prophylactic dose when no symptoms, then bumped up to treatment dose at the first sign of symptoms returning, and then a longer treatment dose than the average child, to clear the infection, or until symptoms subside again. It is therorized that antibiotics have an immune modulation effect that helps symptoms, aswell as strep prophylaxis. Which antibiotic is kinda trial and error, or depending on the infective organism - strep, mycoplasma, etc.

PB 8 probiotic is another one without S. thermophillus. Do you all avoid yougert too as most, if not all, contain s. thermophillus I believe?

PM'd you.

my ds was put on prevacid for stomach protection, while on a steroid taper as steroids are known to be severe on the stomach.

Yes, check the label for s. thermophillus, the "s" stands for strep! Culturelle and PB8 are two that do not have strep but there are many more. Experts are divided whether this is a problem for pandas kids or not, but I gave them up to be on the safe side!

Hi sdrew99, we have just started a pandas support group here in az last month, I'll pm you later today (as I'm running out the door now) look for the message in the top right cornor of the screen!

Started ds on cipro for 10 days, for the pseudomonas in T&As, it was the only antibiotic on the sensitivity list that can be taken orally (rest are iv). Also he's been tested for cystic fibrosis due to the pseudomonas as it's an oppertunistic infection frequently seen ib CF patients. DS also has GI issues and underweight, but I'm hopeful he doesn't have CF and it'll just be ruled out (PG)and also hopeful because many pandas kids have pseudo in tonsils and many have GI issues too from what I read here on the forum. I'll keep you posted. Remains on augmentin too for strep prophylaxis.

I've no info regarding ivig in such a small child for Pandas, however, I do know someone who's 2yr old got ivig for Gullian Barre syndrome and cured her within hours, so I guess the risks are the same! Hope this helps.