peglem

I've been reading IVIG, and keep seeing warnings about not using if you are sensitive or allergic to thimerosol. I can't find anything that specifically states that its an ingredient.

Well I think a positive swab trumps titers. Titers can indicate if there has been a recent infection, but a negative titer test doesn't mean there was no infection because many, many people do not get a rise of titers with strep infections.

Its been my experience that many doctors believe their job will be in danger if they do help us. I've had a few that flat out told me they were not going to "risk their career" to help me. And I know our pediatrician has caught more than a little flack from the other doctors in his practice for helping us.

Haven't used the mouthwash. I've used the gum, but my daughter can't chew it. The nasal spray we've used consistently and its good stuff!

I'm so happy to hear this wonderful news!

Can you be sure there has been no strep exposure since November? At any rate, ASO and AntiDnase titers seem to vary widely from person to person, so I think its hard to draw any reliable conclusions.

I've never heard of sun exposure being a problem with IVIG. My daughter gets frequent infusions and we've not seen a problem with sun exposure.

I don't think my daughter's histamine levels have ever been tested, but I think they are probably low because antihistamine's make her kind of psychotic.

You might try the analogy of a sick tummy. When your tummy gets sick it acts up and doesn't do what its supposed to do. His brain is ill so his brain is acting up and not doing what its supposed to.

Why should you not take it with abx? I've been giving my daughter a yeast-aid product that is mostly olive leaf extract and she is on zith as well. The last 3-4 months we have been having mega-problems with stiffness and swelling in her hands and wrists (a lot worse just before her period). We have not been able too figure out what is causing this, so now I'm wondering if this can be it?

We saw some improvements on it, but tried adding lithium when it seemed to be not doing the trick anymore. In hindsight, I think problems may have been from PANDAS episodes while on it. We only needed a week to see the lithium was making things drastically worse. A problem with knowing what the lamictal is doing is that you have to titrate up so slowly- changes are gradual.

We tried it as an add on to lamictal. Big disaster-huge rages.

So, antibodies could be complexing with the zith and being deposited in tissues in her hands and wrists? She's not having an allergic like reaction. I thought maybe the prednisone was making her better because when she was falling asleep last night, although she was holding her arms stiffly in front of her, there was less bizarre movements. But this morning when she woke up they were stiff out in front again and she was unable to use them.

If the doozie tantrums seem to go away with abx treatment...the bacteria is probably the source for that. Yes, there are probably brats w/ untreated strep. But, with PANDAS, you should see a dramatic increase in the behaviors when there is an underlying infection causing behaviors, and a gradual reduction with treatment. Mood disorders do not typically resolve with abx. I'm not saying your child definitely has PANDAS- but you might want to observe carefully and see if there is a strep (or other infections in the case of PITAND) related pattern to these behaviors. Also, try to investigate if the behaviors are indeed related to obsessions and compulsions. Frequently, in early stages (and for many, hindsight) the behaviors just seem a bit odd or quirky, but with more infections, the behaviors become very debilitating, interfering even with things the child wants to do.

It sounds consistent to me. My guess is that this is more than just strong willed- "getting her way" is probably not really her way, but OCD driven, where it feels more like a life or death need to her, instead of a preference. Not cooperating with obsessions or compulsions in OCD causes over the top anxiety and fight or flight reactions. We check for strep when the associated behaviors flare- its the only symptom we get. Nine times out of ten, she is positive when her behaviors indicate that she is. ASO titers are a confusing issue. Suggest the following threads for more info on this: http://www.latitudes.org/forums/index.php?showtopic=3756&st=0#entry29305 http://www.latitudes.org/forums/index.php?showtopic=3756&pid=29305&mode=threaded&start=#entry29305 In rheumatic fever and other disorders prophylactic abx is common practice. Many doctors do balk at prescribing long term abx. C-diff can be an issue. Its something each of us has to grapple with and decide for ourselves if the benefits are worth the risks. PANDAS does not cause heart problems, but rheumatic fever, caused by strepA is associated with heart problems.

Thanks Kim, that makes a lot of sense. The problem now is that the IVIG makes infection workups pretty difficult. I'm now loathe to try the rifampin again, because the last time we used it (last October) we did not get the wow reaction we'd seen previously, and its a known lupus inducing drug. Can yeast infections cause immune complexes? I suppose anything w/ an antigen can complex w/ antibody. She had white spots on her throat today. But, for the 1st time in years, a negative rapid strep test. Sent a swab for culture. We have been getting +rapids w/neg. cultures, so this should be interesting.

Well here's a very simple definition and explanation: http://thyroid.about.com/library/immune/blimm21.htm

This is the 1st time the pediatrician has mentioned this. The rheumy tested for some complexes, I think. In the end, the only rheumy stuff that came back high was human parvo IgG (but IgG testing not reliable w/ the amt of donor IgG she gets) and histone antibodies (indicates drug induced lupus). The histone was moderately elevated, but was still elevated 2 months later. She is not on any drugs that are known to caused drug induced lupus, and she doesn't have other lupus criteria (anymore). I feel like she's a medical freak. Nobody seems to be able to figure her out, and just when we think we've at least got everything going in the right direction, up pops something new and strange. Sorry-I'm worn out. So, complexes are antibody clusters? Do I have that right?

I'm just trying to figure out what's going on...and tired of trying to comprehend the immune system. Honestly, why does everything have to be named with letters and numbers? It gets so confusing. I can't even understand (except on a very rudimentary level) how its supposed to work, no less what is not working for my child. From what I gather on this issue- the complexes are supposed to be formed-so that's something normal happening- then the complexes are supposed to be destroyed by some other immune component. If the complexes get deposited in tissue or joints they can cause inflammation and disease. That could explain the swelling in her wrists and hands, but the constant contortions and weirdass movements-I just want this better. It'd be swell if it would get better w/o my having to understand, but how can I know what to do w/o understanding? Anyway, that's my very long way of asking of anyone knows if IVIG contributes to the formation of these complexes, and if constant high levels of IgG (we infuse 1.5g/kg every 3 weeks)would make it harder for the body to clear the complexes? Or do I have this very wrong? Making things worse, I've developed some hip/lower back problems that require me to take painkillers. This fuzzies up my mind so I have trouble following my own train of thought. Ain't no way to live!

Wow! Sleep is wonderful- makes such a difference in overall health!

My daughter is still (since a big flare in March) having difficulty with her hands. In March the rheumy called it strep reactive arthritis. Its currently flaring again, w/ muscle cramps and swelling. She cannot use them much. The ped said today it could be immune complexes depositing in her hands and wrists. Dealing with this does not leave me much time for reasearch...so, what do you know about immune complexes, and could her IVIGs make this worse? What clears complexes?

In my very low functioning child I can tell the PANDAS episodes when she begins becoming fixated on ordinary objects or toys even though they cause enormous anxiety. She can't stop without intervention. Further she is in fight or flight meltdowns 24/7. Sleep and toileting issues arise as well. If you know the nonPandas behaviors, episodes become easy to see. What's harder is doing any kind of ERP therapy when the child has great difficulty w/ communication.

My 16 year old still has trouble with needles, and we still need versed to even get an xray or ct scan- its an anxiety thing. I wonder if they's be willing to taper the versed down so the withdrawal is more gradual- that's what I do w/ valium, which we still use for every IVIG. But, I'm the one who gives that, so I have more control over administration than you do with versed.

Did she have anything to eat during the infusion? My daughter snacks all day through the infusion. And hunger does trigger rages for her. Could it have been the coming down from the versed?

A) They could have been strep infections, but you can't really tell at this point, unless its documented in her medical records. B)It is possible to carry strep even after tonsils have been removed. C) If they constantly swab positive for strep, but do not have typical symptoms of an infection. Sometimes, but not always, titers (ASO, AntiDnase) can be elevated. Strep carriage seems to be a gray area...