peglem

I'm confused. Mystery Dx's format is to tell the story of diagnosis of just 1 patient...so how would that tell multiple stories? It does define and educate on the "mystery condition" so that would be good. 20/20, on the other hand could explore the condition through multiple stories, as that fits their format.

Chances are very good that with the rifampin and the zithromax your child would have a neg. strep test anyway. How long has your son been on these medications? What I wonder is if the abx's are resolving the symptoms that the other meds were prescribed for, might you be seeing SEs from those meds?

Allie takes hers @ 6 PM, then I can give probiotics @ 9 so her tummy will be good in the morning.

BGITIGI= By george I think I've got it

I thought this was rather interesting, showing antidepressants to increase CamKII activity in certain parts of the brain. Also, though Lithium was shown to reduce CamKII activity, my daughter's rage episodes exploded (at a therapeutic level) for the week she was on it. http://www.ncbi.nlm.nih.gov/pubmed/1261499...ogdbfrom=pubmed

dd=dear daughter ds=dear son Those followed by a number often indicate the age of the child.

My daughter, then @60lbs was on proph. penvk, I think it was only 250mg/day- but it may have been 2x/day. She tested + for strep while on it, so we switched to zith. But, my personal opinion is that it doesn't work to treat PANDAS like rheumatic fever... its not just about preventing strep. There's something amiss with the immune system.

Huh? I do not think the insurance company looks at lab reports! I don't know what insurance you have but I think UHC's policy(I can look it up again, if you want) is an immune deficiency w/ at least 1 infection attributable to it. IGg deficiency w/ a chronic infection sounds to me like it would qualify.

Was your child in the midst of an exacerbation when you had the blood drawn?

Amazing update! Thanks!

I think its the augmentin. My daughter had awful, awful "demon possession" episodes...most of which had no environmental triggers. When we finally increased her zith-they are gone. She still has OCD, abnormal movements (still don't know if those are tics or what?)...Its been over 2 months since we've seen one of those scary episodes, and I'm talking about a child who has been having those episodes for at least 10 years! The change of environment may help- but I think the abx is the main factor. I'm so glad you've found a way to keep the family safe and still keep your son with you. Keep hanging in there- the other stuff will get better, too.

Sorry, you will not be able to relax until this is all sorted out. Autism is just symptoms....that can be caused by PANDAS. So, it doesn't have to be one or the other. That's just my opinion, of course. If it isn't PANDAS or PITANDS, then keep looking for the underlying cause.

Then why, why, why in the world would they give the hepB vaccine on the day a child is born? That seems so dangerous to me, especially given that very few newborns are at risk for this disease!

The reason for waiting 2-3 hours to give probiotic is because the probiotic (usually) is live bacteria and abx kills it. So waiting for the abx to get absorbed from the intestines then allows the good bacteria to repopulate the gut. I say usually live bacteria, because boulardii is a yeast probiotic (I believe there is some in culturelle?) and it is not killed by abx, but you have to give it (boulardii) separate from antifungals.

Prayers and best wishes!

But, has this served the cause of autism research and treatment well? Personally, I don't think it has. Trying to wade through all of that to get at good information (precious little of that!) is quite daunting and leaves parents and patients not quite knowing where to turn or who to believe.

I went looking and found this: http://www.jbc.org/content/272/39/24133.long Which of course stimulates the question of what causes elevation of BDNF? Interestingly, BDNF has been found to be elevated in the brains of autistic children.

But, imagine if enough nonreactive kids got it...possibly schools would fail to be strep breeding grounds w/ constant exposure for our sensitive kids. BUT, it seems like when some strains are prevented from proliferating, others gain strength and fill in the gap. I'm still not certain that my daughter's immune system was not derailed by vaccines in the first place. So, I guess I have mixed feelings about a vaccine.

LLM: Exactly- my child has so many "extras". She's 15 and has been menstruating @ 5 months, and has been dealing with issues since infancy. But, it seems that each child has their own set of variables that create shades of treatment differences. I truly do not know what "recovery or remission" will look like in my child. I think its certain that her messed up development through infancy and early childhood is not going to magically reverse. But how much of her neurological presentation is due to aberrant development and how much is due to this autoimmune thingy she's got going on is impossible to tell, and I don't know how we will know if the autoimmune issue is resolved. What we have seen over the past 2 1/2 months of increased zithro is that the exorcist episodes have greatly diminished...so, I guess we can say those were caused by post infectious agents. We know she has immune deficiencies and it makes sense to resolve those with IVIG. Will lower dose IVIG every 3 weeks make that worse? If we could accomplish the same thing with a few high dose infusions, I would prefer that to doing infusions every 3 weeks. But what I can get is the lower, every 3 week infusions. As long as she continues to improve on the treatment course we're on- I'll take it.

My pediatrician does a full metabolic panel every 6 months- pays careful attention to liver enzymes in particular. And since we're doing a draw anyway, if there is anything else we're concerned about we check that too.

The pediatrician says its most likely a few things that are both SEs of the increased zith. The rash, he thinks is mild sunburn because of increased sensitivity to sunlight. And the seeking chest pressure and fatigue is probably because of reflux/heartburn. She has been having a lot of trouble sleeping, and jumping up from sleep like she's in pain. So that makes sense. She's been doing so well on the zith- we do not want to change that so we'll work with sunscreen and try zantac. Its a relief to know its not lupus.

Thanks!

Lynn, I'm glad you are doing what you can to put/keep PANDAS in the public eye. Diana may be a good resource for PANDAS stories since they are already collected there. I'm not sure Allie's story would work since nobody is really very sure (except her pediatrician and I) that she has PANDAS...or what. We're still sorting stuff out. Thank you for offering to bring our children and stories with you to the conference to show the whole spectrum- I think you'll find the autism community very receptive!

Thank you for doing this! But, please could we have an update on Lauren?

elevated IgE indicates allergy.