peglem

I've done quite a bit of studying on biomedical autism treatment/causes. The hypothesis that antibiotics are involved in causing autism stems from the fact that autistic kids as a group seem to have had more ear infections/antibiotics than the general population. Since autistic kids tend toward gut issues- which can be caused by antibiotics...well, that's the line of thought anyway. But correlation does not = causation. Its kind of a chicken and egg story- is the immune system messed up 1st, allowing for frequent infections? That would actually be my first guess. The antibiotic autism link has not been proven but its definately out there as something that needs to be studied.

I don't know the answer to your titer question. But, before my daughter was on prophilactic antibiotics she would test positive for strep(rapid test) every time the behaviors came back, which was always 3-5 days after finishing a course of antibiotics. But, it took a little longer for it to come back after a course of zith, usually @ 5 days. My daughter's titers never tested high and though you still may get high titers on an ASO test, Sometimes PANDAS kids do not get high titers and well, if your doc is skeptical...you may end up pushing the doc in the wrong direction if you don't get the high titers.

i have looked into lyme disease a bit. It is my understanding that use of antibiotics can produce false negatives for lymes tests (which are not terribly reliable anyway, unless they're positive). If my daughter does have lyme disease, she's had it for so long that likely the borrelia are no longer in the blood anyway. So, I've put off mentioning to her pediatrician, but will probably bring it up in the future. For now the prophilactic zith seems to be helping her symptoms and I suspect her treatment would not be much different for lyme disease than it is now. BUT, if a doctor brought it up to me and offered testing- I'd sure do it, but would like to be sure I didn't get a false negative, which I think would rule Lymes out for most practitioners. I suspect Lymes is one of those diseases that is considered rare because its dx is seldom considered, not because its really rare...and I don't see how they can possibly determine that the only way it it spread is by one specific kind of tick. How the heck could you possibly rule out all other parasites as carriers? Anyway, Lyme disease can certainly mess up the immune system and the nervous system...and normally people are treated for those symptoms and if the cause of the symptoms is not obvious, deeper investigation is not done. Edited to add: I saw one of those mystery diagnosis (or was it one of those ER shows) on discovery. They initially thought the patient had MS and gave her IV antibiotics (I think- may have been IVIG, its been awhile). She did not respond to treatment so they began testing to figure out what the problem was. She tested negative for Lymes, but positive for syphillus...But, her partner did not have syphillus so they ruled out syphillus. They considered Lymes (apparently it is related to the pathogen for syphillus.), which fit the symptoms, but discarded it because of the negative tests....until the doc realized that the test (which tested for antibodies to borrelia) was likely skewed by the antibiotics. He ran a test for the actual bacteria (much more expensive than the AB test) and found that Lymes was the problem.

Antibiotics should just prevent strep episodes, not mask anything. PANDAS is not degenerative, the damage will not get worse without the strep trigger. It gets worse with strep exposure/infections. In your shoes, I would keep up the ABs, at least while my child is in school. I'd also ask for an antifungal (or use a natural one if I was convinced of its efficacy).

Wow, i didn't know Coke could be so useful!

My daughter uses her right hand for writing, has very poor fine motor control and at 14 yo, still sometimes seems confused about what hand to use.

Hello, I am just wondering what part of the country you are located in. I'm in the SF bay area, and am having a hard time finding a cooperative pediatrician. It looks like you've found someone that understands PANDAS issues. Thanks,Peggy I'm in Phoenix, Arizona and what I found was a pediatrician who was willing to learn and help me figure things out. It may help if you look for a DO (doctor of osteopathy). I don't know what makes them so different, but have found that they are usually great about listening to the patient and trying alternatives if they make sense.

Something you have to be careful with w/ all drugs is to be sure you're not overloading the liver or kidneys. Check with the doctor who should know which medications are cleared through which organ. If your child is already on a medication that is cleared by the kidneys, you may want to avoid more meds that are cleared by the kidneys, for instance.

My daughter is on prophylactic zith, but she's on kind of a crazy regimen: 250mg/day for 5 days, then 7 days to let it clear from her system. Her pediatrician (who is very knowledgable about zith) has concerns about its safety because it builds up in tissue, including the liver (which is the organ that clears it). We get liver enzymes checked @ every 6 months now, but at first we were doing them @ every 2 months. It hasn't been a problem for her so far- she's been on it for @ 18months now. We did PenVK before that, but it was not as effective as zith. Still he hesitated to switch her, because penicillan is safer. I'm just mentioning this because you should know that zith is not without its risks, although I would be comfortable with a 30 day trial.

The rheumatologist would most likely dismiss it unless there is swelling and pain in the joints (arthritis).

I would think it more likely that the antibiotic would kill the good bacteria in the yogurt, making it useless as a probiotic. What I have heard is to give probiotics 2-3 hours after the antibiotic (give it time to leave the digestive system) so that you replenish the good bacteria that were killed by the antibiotic on the way through.

The first thing that comes to my mind is that she may be having yeast issues.

Here is an article comparing the 2: http://www.ncbi.nlm.nih.gov/pubmed/1320067...ogdbfrom=pubmed 1: Infect Control Hosp Epidemiol. 1992 Jun;13(6):357-68.Links Azithromycin and clarithromycin: overview and comparison with erythromycin.Whitman MS, Tunkel AR. Department of Internal Medicine, Medical College of Pennsylvania, Philadelphia 19129. Azithromycin and clarithromycin are erythromycin analogues that have recently been approved by the FDA. These drugs inhibit protein synthesis in susceptible organisms by binding to the 50S ribosomal subunit. Alteration in this binding site confers simultaneous resistance to all macrolide antibiotics. Clarithromycin is several-fold more active in vitro than erythromycin against gram-positive organisms, while azithromycin is 2- to 4-fold less potent. Azithromycin has excellent in vitro activity against H influenzae (MIC90 0.5 microgram/ml), whereas clarithromycin, although less active against H influenzae (MIC90 4.0 micrograms/ml) by standard in vitro testing, is metabolized into an active compound with twice the in vitro activity of the parent drug. Both azithromycin and clarithromycin are equivalent to standard oral therapies against respiratory tract and soft tissue infections caused by susceptible organisms, including S aureus, S pneumoniae, S pyogenes, H influenzae, and M catarrhalis. Clarithromycin is more active in vitro against the atypical respiratory pathogens (e.g., Legionella), although insufficient in vivo data are available to demonstrate a clinical difference between azithromycin and clarithromycin. Superior pharmacodynamic properties separate the new macrolides from the prototype, erythromycin. Azithromycin has a large volume of distribution, and, although serum concentrations remain low, it concentrates readily within tissues, demonstrating a tissue half-life of approximately three days. These properties allow novel dosing schemes for azithromycin, because a five-day course will provide therapeutic tissue concentrations for at least ten days. Clarithromycin has a longer serum half-life and better tissue penetration than erythromycin, allowing twice-a-day dosing for most common infections. Azithromycin pharmacokinetics permit a five-day, single daily dose regimen for respiratory tract and soft tissue infections, and a single 1 g dose of azithromycin effectively treats C trachomatis genital infections; these more convenient dosing schedules improve patient compliance. Azithromycin and clarithromycin also are active against some unexpected pathogens (e.g., B burgdorferi, T gondii, M avium complex, and M leprae). Clarithromycin, thus far, appears the most active against atypical mycobacteria, giving new hope to what has become a difficult group of infections to treat. Gastrointestinal distress, a well known and major obstacle to patient compliance with erythromycin, is relatively uncommon with the new macrolides. Further clinical data and experiences may better define and expand the role of these new macrolides in the treatment of infectious diseases. PMID: 1320067 [PubMed - indexed for MEDLINE]

The only B vitamins that I have been able to tolerate (which means I don't spend my life burping B vitamin- eewww) is Kirkman's superNu Thera. They have several versions w/ or w/o other supps added in. We use the one w/ P5P included.

Well, nothing here that starts with "p" but... http://www.naturopathydigest.com/archives/...ay/meschino.php

MRSA is a bacteria- viruses are not killed by antibiotics.

Sorry, I almost answered earlier today, but discovered I don't know too much about it, so left it for somebody who knows more than me. You're talking about Methicillan Resistant Staph? I don't understand why the doctor would think he has to have it forever and why that's not a problem, especially...well, you know kids and noses. But, MRSA is not immune to all antibiotics. One of my children had a MRSA skin leision several years ago. She was prescribed an antibiotic cream. It went away and stayed away. I don't know what kind of problems it could cause with the immune system- several doctors thought my daughter was just a strep carrier, too. I don't really have any advice, except to try Xlear nasal spray. Its a natural antibiotic.

The antibiotics may have caused yeast overgrowth, which seems to manifest in all sorts of ways.

I'd try the ginseng and see what happens. If no response, then I'd try the caffeine. If no response i'd combine the 2, and if that didn't work, I'd try the pepsi again. If it comes down to the pepsi max- I'd buy large quantities of it, just in case they stop making it someday! Really, it seems to me like you've been given a huge clue here!

I think the most useful thing we have for anxiety is (sorry, I don't like using it either) diazepam (valium). I don't use it everyday, can frequently substitute valerian root for it, but when she's really disturbingly overanxious (she has SIBs) there just doesn't seem to be another solution. I console myself with the fact that I've saved her and the whole family a day of misery. It takes a TON of the stuff to sedate her and make her whoozy (the dentist prescribes that amount when he sees her). The amount we give her just keeps her from gnawing her arm off. Sometimes she'll have really great days...and I'll drive myself crazy trying to figure out why...so I can replicate it! Glad you feel comfortable venting here!

Oh Sarah, I'm so sorry your child and you are having such a rough time. I don't really have good suggestions, but I've been where you are now...tried everything that may work, worked for others, shoulda worked and so confused and frustrated. We saw tons of specialists which gave us conflicting reports. Couldn't even tell anymore which symptoms were disorder and which were side affects. I got to the point where I considered just giving up...my child's pediatrician wouldn't let me! I did kinda take a break from my frantic, relentless search for answers. Taking things slower now. Sure would like an overnight cure, but have settled for small increments of improvement, tweaking things when we get regression.

I've never heard of this. Do you have anymore info about it?

I just did a real quick google, but everything I saw indicated that melatonin inhibits dopamine.

Another question is how do you get a diagnosis code for IVIG for PANDAS treatment? My doctor is having a hard time with this. I can't tell you what IVIG is like-never been there. But, there is no dx code for PANDAS, nor is IVIG considered standard treatment for insurance purposes. Most insurance will only cover IVIG for immune deficiency or sometimes for autoimmune disorders. It has not been proven that PANDAS is autoimmune...so, in order to get insurance to cover, your doctor will need to dx something that insurance will approve it for.

Does he have PANDAS?