Kiera

You said it!!! Do I really want TWO controversial disorders!!! And spend another 1000hrs on the internet trying to figure out how to manage it!!!!

Ahhh, thanks all for the clarification! I didn't know igenex WB is different from mainstream WB! I think that's where I'm starting (have emailed Dr B waiting on clarification of which test) He said we could test for co-infections later if necessary. He upped my ds's abx as he's still very symptomatic but we think he has a clogged sinus again (awaiting CT of sinus!)so don't think going off abx is possible at the moment!

I already have the western blot IgG/IgM, that's negative, but apparently this basic testing is pretty useless if negative, that's why you have to do the more specific testing via igenex. I've been reluctant to go down this road but here I am !!

Hi all, For those of you that have tested for lyme via igenex did you take your kid off abx for the suggested 3wks? Have any of you done it while on abx and what's the issue - abx can supress a true pos?? or something else? Tx.

I agree completely with arial! Each Pandas expert approaches it from a different perspective and unfortunately not one comes in the complete package!! I have seen Dr K (big fan of IVIG for most pandas cases) and Dr B. You also have to consider how quickly access is and wait times for apps and IVIG (if you think this may be necessary). Dr B doesn't do psych drugs, Dr T will order if necessary, he's a phD in neuropharmacology! (Don't think Dr K will do psych drugs either). So alot depends on your child's severity right now and how much of a hurry you're in, and in what area you need most help. Dr B does do a good work-up though as I believe Dr T does too (but I haven't seen him...yet!!!). They all have their strenghts!

florostor and culturelle are two of the most popular. Florostor is a yeast probiotic so can be taken with abx but others need to be spaces 2hr apart from abx. Can get generic florastor (cheaper). It's good to rotate probiotics too to give the gut a good variety. PB8 is another one. These all are strep thermophillus free. Might want to give up yougert and uncooked cheese also due to strep thermophillis (culturing agent).

My ds got a rash 2wks post IVIG, it was itchy and on the palms of hands and soles of feet. After a few days it started to peel (sorta like blisters) and left these red circles where the new skin was. I was wondering if it was Hand, foot and mouth disease (coxsakie virus) but a mild case of it as it is going around. Also you can get the rash all over in severe cases and usually sores in and around the mouth. I was also wondering if he got it from the IVIG or just picked something up! We'll never know, it's gone now, but not much improvement in behavior and I was wondering if this was a virus maybe that's why, it triggered more autoantibodies? All speculation on my part though!!

Usual high dose for pandas is 1.5g/kg. The NIMH clinical trial is using 2g/kg. Maybe some Drs are starting to use the 2g now also since the trial is using that??

I would say check with the Dr that ordered them. The lab people probably wouldn't know (and wouldn't be a reliable source anyway, they're just techs)Also they wouldn't want to be liable for giving out the wrong info and possibly altering a diagnosis! Good luck.

Hi all AZ parents, Our next meeting is Tuesday, July 10th @ 5:30pm. Email kateazpandas@gmail.com for details. See you there!

Most definitely a flare-up. I would do a rapid/culture, run a set of ASO & DNASE titers, probably mycoplasma IgG/IgM just to start as these are all changable. Does he have an ENT? Is he on full dose abx? I'd recommend T&A and maybe sinus drainage. Has he had a CT/MRI of sinuses? Corporalia can definitely be a pandas symptom, it's still just a tic, like any other verbal tic, throat clearing etc. My ds had completely occluded sinuses found incidently on brain MRI and we did T&A for normal looking tonsils and everything was infected, tonsils, adenoids and sinuses! You could try dosing with ibuprofen in the meantime and see if that helps.

Absolutely!! Only one of my two kids have it so far, but I'm reading about it in siblings all the time! Some families have three kids with it.

In addition to the sinus and pneumonia infections, you mention mono. The virus that causes mono - epstein barr virus (EBV) stays in your body forever. In the same way a childhood bout of chicken pox can resurface as shingles in adulthood, EBV can resurface as well. You may want to test for titers for EBV, herpes viruses and cosackies virus just to see whether a virus seems active or could be contributing to her issues. While some docs say you can't treat viruses, there are anti-virals available and L-lysine is an amino acid found in foods and supplement form that can be effective in reducing a viral load. LLM, didn't know you can check the coxackies virus titers! my ds had these blisters on the palms of hands and soles of feet 2wks post ivig and now he's terrible. we're checking for other hidden infections and am wondering if maybe the blisters were HFAM dx (it was a very mild case if it was, no fever or mouth sores) but could I do the titer test now to check if these levels are elevated? Do you know what exact test to order? It's coxackie A, right? Going to Pandas Dr on Monday. Thanks so much (sorry to hijack post!)

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ko's mom, most definitely PANS in your daughter too. I do believe Dr L is wonderful but since it takes so long to get in for her, keep that app. and you could alternatively contact Dr T in NJ to get the ball rollong, he could order all the app. tests, try some different psych drugs in the meantime (he has a phD in neuro pharm) so when you do see Dr L in a few months you've moved further down the line. I'd also go ahead with T&A for your dd. Even if the steroid burst works it's usually temporary.

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Yes, ID = infectious disease. Agree also with nicklemama, Dr K has just been doing this so long, he used to wait 3-4 yrs before doing ivig on kids but said now he opts for it earlier as he feels antibiotics are only a bandaid, and eventually they are not sufficient and kids end up with ivig anyway! So it depends on several things - how bad your ds is now, how motivated you are to treat immediately, financial resources, willingness to travel etc. You could take the slower, more methodical route, and do an immune system work-up (must be with a pandas friendly dr) try abx as long as it works, possibly steroids, homeopathy etc and see how it goes. Strep is most always the initiating organism even though no evidence, and mycoplasma, lyme etc are triggers as a result of the immune system decompensating. Every child is different, but some are maintained on abx alone. Others who eventually need ivig in retrospect are sorry they waited so long to do ivig! Dr K is not in it for the money, you'll find all the specialists have to charge out of pocket as insurance usually won't cover an hour long visit. There's so few real pandas experts and we need all of them and TG they're willing to help our kids. Good luck!

I doubt a rheumatologist will be a pandas believer from all my reading. ID Drs are also pretty useless. If you have the resources either travel or do a phone consult with one of the few pandas experts nationally and cut to the chase. Otherwise check the pinned threads here or any of the pandas websites for pandas treating drs in your area. Or, alternatively see a DAN Dr, although expensive too. Diagnosing and treating properly can be a complicated process and you'll save yourself alot of time, energy and grief by going straight to a knowledgable source. Good luck!

I'm presuming the steroid is just to reduce temporary inflammation that causes the headache post ivig like peglem said. As regards HD ivig being anti-inflammatory, yes it is, but we're talking over the long haul. HD IVIG can take months to do it's thing as healing takes place in the brain. I'm guessing it's just this facility's policy since most kids get the severe HA, you can always ask, and refuse since your ds doesn't seem to suffer from it. Good luck!

So I completely jinxed my DS who puffed up in hives last night. He'd just eaten mango, peanuts, coconut, and pineapple. The allergist wants us to avoid all that and tree nuts but won't test him until August to avoid a false negative. Were your kids tested shortly after a reaction? His antibodies have to reaccumulate or something. Either blood or skin testing would likely show positive if we tested him this week since he had that reaction last night, according to the doctor. No my ds didn't have a reaction, he was tested due to chronic stuffy/runny nose, eczema, random hives etc. I know he did need to be off antihistamines a couple of weeks before testing though.

I wouldn't increase abx on basis of streptozyme alone. It is a less specific strep marker and 200 is not that high (it goes in increments of 100s, 200,300,400 etc) My son's is 200 also. I would treat on basis of symptoms. DNASE B is a much better indicator and the trend is what's important, not the #. is it trending down or up?

Thanks so much LLM. Very helpful. I plan on doing it. I also printed out your earlier explanation on a previous thread about this. You're the MTHFR Queen!!

1tiredmama, I had not heard this? My ds's tonsils showed pseudomonas and both he and his GI Dr wanted a sweat test done to check for cystic fibrosis! (neg BTW). While it's true ENTs don't normally culture all the tonsils they remove, my ENT said he's quite sure that he doesn't have pseudo in his tonsils and quite sure that I don't have pseudo in my tonsils!! But it kinda makes sense, as the tonsils are part of the lymphatic system, who's purpose is to clear infections from the body, but I would imagine they would temporarily harbor the remnants of infection and not be chronically infected. All just speculation on my part though!!

Hi everyone, anyone know if Dr B tests routinely for this or if he'll oblige if asked? Also, is it an expensive test that requires insurance approval or pre cert? What does one do with the results if positive? Supplement with folate? Thanks so much.

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