peglem

Right. Hope you find what you need. Seems like a lot of people are getting hung up on those darn titers.

Well, rising titer is relevent, in that it indicates that the strep has not been cleared, but ASO titers are not auto-antibodies and do not cause PANDAS symptoms. They are, like I said before, actually antibodies to strep exotoxins and are used as evidence of strep in the body. Its explained in this thread that has been pinned to the top of the forum- post #5 : http://www.latitudes.org/forums/index.php?showtopic=3756&st=0#entry29305

ASO titers do not cause PANDAS symptoms. They are antibodies to toxins that are excreted by strepA bacteria, and it is completely normal for them to be elevated following a strep infection. They are not diagnostic for PANS/PANDAS, but are a clue that there has been a recent strep infection. So if symptoms of PANDAS are present an elevated (or even better, rising) ASO titer gives the clinician a clue about what may be happening. I disagree that it is irrelevent, but its really a small piece of info in the context of the bigger picture, and, infact, many people with PANDAS never get elevated ASO titers at all.

IgG titers have a "normal" range for most common pathogens, since people carry titers from infection or exposures that their immune systems have "learned" to defend against. New infections(or exposures) will initiate the production of higher quantities of specific titers to protect you from it. The first infection (or infestation, perhaps) w/ a particular pathogen usually activates IgM titers 1st, which wain as the IgG titers take over. But, subsequent infections frequently only cause a rise in IgG- so elevated IgG titers may mean a new or chronic infection, especially if they continue to rise over several blood draws. If it is really an old, not active anymore infection, then you should see a decline in IgG titers over time. Continually high or rising IgG indicates the presence in the body of a pathogen that has not yet been successfully vanquished by the body. But you need more than a single measure of IgG to know if its really an old infection or an existing, active one.

If there are no numbers under LOW and NORMAL, then probably his titers are high at 4.85. All labs report differently, but most will give you a "normal" range to compare your #s to.

IgG measures are titers. And elevated IgG against virus can be an indication of either a past infection or a current chronic infection. If you remeasure in 4-6 weeks, you will get a better idea: If the IgG titers are rising, its probably a current infection.

1) If you are talking about ASO & AntiDnase titers being low- those technically are not strepA antibodies per se, but antibodies to toxins that are produced by strepA bacteria. And many, many PANS kids have low #s w/ those, even in the face of numerous documented +strep tests. In the general population, 40+% do not have these titers elevated even w/ a documented case of strep. There is a paper in the pinned threads about this- and I don't remember the exact #s, but its not that uncommon. 2) This sounds like, as somebody else mentioned, step pneumoniae titers, and yes, different critter than strepA. This was probably a baseline draw, and if your child does not have protective levels they don't know if that is because he's not had exposure to those strains of strep pneumonia or because he's not making the antibodies to it. So, they want to administer the vaccine, which has a standardized response to compare to yours. Then they'll redraw titers after about 2 weeks to see if your child is able to mount an adequate immune response to those types of bacteria- encapsulated bacteria. StrepA is another type of encapsulated bacteria and if you do not produce protective levels of antibody to the vaccine it indicates that your immune system is not responding properly to encapsulated bacteria. The dx for that is Specific Antibody Deficiency (SAD), and it can qualify you for IVIG, but usually a low dose only. 3) StrepA is the trigger for PANDAS, but PANDAS is a subset of PANS, which includes all infectious (and possibly allergic) triggers for the behavioral/neurologic symptoms. So, not really a crap shoot, but checking for one of many possible triggers.

Just wanted to be clear- tylenol and ibuprofen are not the same. Tylenol does not reduce inflammation, and it reduces glutathione that the body needs to detox. We have used ibuprofin (motrin is a brand name) frequently here as well. Use the label instructions for dosing. I do not have info on the lyme testing.

We never hired babysitters either. When she was younger, MIL could handle babysitting, but mostly hub and I switched off. Now that her sisters are older, they have become certified to provide respite care, which is great because they absolutely will not be surprised by her!

Wow, we just found the opposite- My daughter was rx'd ferritan for mild anemia. I just gave it for 3 days and she was so constipated and grumpy! So, stopped it and gave mirelax...Bad diarhhea...So, then I stopped her abx, and that solved the diarhhea problem...but then she started to flare....put her back on abx and she's good now, but sure was chasing my tail in the House That Jack Built there for awhile! Glad your experience turned out better!

Usually when given at home, a nurse comes to administer and monitor the patient.

We use nystatin regularly w/ abx and throw add in the diflucan for a few days if she gets a vag. yeast infection, or evidence of yeast elsewhere.

I'd get a baseline titer measure for mycoP- stay on the zith, and remeasure titers @ every 6 weeks. You should see a downward trend if the zith is working. I'd keep her on the zith until titers normalize. For us, going off abx too soon always brings on relapse.

They need a course in logic. If you can't test conclusively for it, you also can't rule it out.

Thanks. Very interesting.

Well, I think that tourettes and OCD are symptoms. "Syndromes" are usually only a description of symptoms. PANS is one possibility for what causes those symptoms to occur. If you accept the "diagnosis" of tourettes and OCD, then you will only be treating the outward manifestation of the problem. Searching for what causes them might give you a more permanent solution. Even if these things run in your family, it may just be an indication of a genetic predisposition for whatever the underlying cause is.

Treatment for MTHFR mutations has helped us alot w/ rages. We have dealt with severe rages for a long time. This website greatly helped us to deal with them: http://mychildsafe.org/rage.htm

Well, once we got the dosage correct, yes. Initially we had to experiment (and the doctor had over prescribed methylfolate) with dosage and timing (don't give at night). But, even at the too high dose we saw a pretty significant improvement in mood between the F/F behaviors, which tend to come on like somebody flipped a switch. I'm still amazed at how powerful this was for us- we've been dealing with some very severe behaviors for many, many years.

For my compound heterozygous child methylation treatment has DRASTICALLY reduced fight or flight rages. And she's not yet really in remission- but w/o the F/F rages, I had trouble recognizing a flare. It was so different to just have OCD and hyperactivity- anxiety still there, but so easily controlled. Her doctors are supportive, but really aren't savvy enough about it to be the leaders- LLM and another person from our local support group have been most helpful in educating me...

Well, B vitamins and folic acid are not stored in your body, so, especially if you have an MTHFR mutation, I think this is something that is often overlooked because the depletion is not immediate when you 1st start a medication so the dots don't get connected. I'm not expert on this at all- just something to consider.

Its possible, too that the increase of zoloft has over a few weeks depleted folic acid/B12 and other netrients that are needed to function. From here: http://www.alive.com/articles/view/19578/common_drugs_deplete_nutrients Common Drugs Deplete Nutrients by Daniel T. Wagner, RPh, MBA

Shoot, didn't work.

Folic acid vs folinic vs methylfolte. Folic acid is usually the synthetic form that was developed as a stable form for fortifying foods. But, folic acid is water soluable, which means in order for it to get into cells w/ fatty acid cell walls (nervous system cells, for example) it has to go through the methylation process. I'll see if I can find the diagram of that process and post it. Anyway, if you have a problem w/ efficient methylation then your cells can become deficient, even in the face of high serum levels, because the cells can't use it in the unmethylated form. Folinic acid is folic acid that is partially processed, but not fully methylated. Methylfolate is already in the form that the cells can use, as is methyl B12 (methylcobalamine is methylated B12). I hope this works to paste coversion diagram:

I was looking around that FDA site yesterday, and when concerns have been addressed, there is always a follow-up report stating compliance or further issues to be addressed.

So, a little more checking and nope, different company. Dr. Reddy is in Mexico. But strange the Aurobindo letter was addressed to a Dr. Reddy..... But, I just checked and Allie's antiviral is from Aurobindo. Sigh, a few months ago I had to return a ranbaxy product....