EAMom

Hi, if anyone is interested this is a link to a lecture Sue Swedo gave at UC Davis on PANDAS (there were other speakers on Autism etc...you have to scroll down to get to Swedo's videotaped lecture). http://www.ucdmc.ucdavis.edu/mindinstitute...ded_events.html Interesting stuff I think...

I'd be great if you could hook your Grandma up with a good psychiatrist who specializes in geriatrics. In general, the rule with older folk is to start low and go up very slowly in your doses. Antidepressants/SSRI's are tricky because what works for one individual may not work for another (and may even have bad side effects). You may have to be patient and go through 2-3 different meds (or more) before you find the med (or combination of meds) that is right for your Grandmother. But, from personal experiences with an elderly relative, it is well worth the effort...these drugs can really work miracles. It sounds like she is really suffering right now and that is no way to spend her "golden years." A geriatric psychiatrist should be able to help you choose the safest drug to try on your Grandma. I don't know if I would trust a General Practioner (non-psychiatrist) to do this, but that's my opinion. Also, it would be helpful if you (or your mom) could accompany your Grandmother to the visits with the psychiatrist. Your Grandmother sounds like she is feeling pretty low and would probably appreciate a little reassurance and handholding as this is not the generation that is comfortable with psychiatrists (think "One Flew Over the Cuckoo's Nest).

Hi Michele, I have 3 theories about why Azithromycin is better for PANDAS vs. pennicillin. 1) it has strong *anti-inflammatory* properties...you can do a google search on this. It's been used for cystic fibrosis b/c of it's anti-inflammatory properties. I believe these kids have inflamed brains (basal ganglias) and somehow the strep triggers (whether it's auto-immune or whatever) this inflammation. So, you want to get rid of the strep, but you also want to get the inflammation down. Think of it like an allergic reaction to a bee sting...of course you want to avoid getting stung but once you get stung you want something to get the pain/redness/swelling down. 2) it has *better tissue penetration* than pennicillin. In other words, if the strep is hiding out somewhere with a poor blood supply Azithromycin will do a better job of of getting to the strep and knocking it out. 3) some strains of strep are *resistant* to pennicllin...some docs are rec. stronger abs like Azithromycin or Cephalosporins for strep. As to my personal experience, my younger daughter (the strep carrier) was not cleared with Augmentin (a stronger version of pennicillin/amoxiciilin) but was cleared with Azithromycin. My older daughter (the one with PANDAS) was on Augmentin, Amoxicillin, and a 2nd generation cephalosporin antibiotic before she was cured with Azithromycin. It is possible that a "cure"might have been achieved if my older daughter was on Augmentin longer term (like dr. K. has recommended). She was only on it for 10days before we switched to Amoxicillin for prophylaxis...

Ditto...great answer!

Hi, Re. the lowish titers (in the face of postive cultures) *check out my 8/18/08 response to Pudgeo* ("now looking into encephalitis...maybe not PANDAS")...let me know if you have more questions. Also, please note that Sue Swedo admits that they do not know *for sure* that PANDAS is an autoimmune dz. (*autoimmune* is the "A" in PANDAS). High titers are nice evidence to have (esp. if you can't get a positive culture b/c the strep is hiding out somewhere else in the body or the infection has since passed). It is interesting that my daughter *cultured* positive 2 mo. after her original strep infection (which was high fever, not classic red bad sore throat). I suspect something about her immune system kept her from fighting off the strep on her own. (It's also possible that her carrier sister kept re-inifecting her.) Also, don't forget that a lot of totally normal (non-PANDAS) kids will have high titers. This is what is confusing to a lot of docs...you have to look at the whole picture and titers are only 1 piece of the puzzle. The titer issue really does appear to be confusing many Docs. Unfortunately these Docs (esp. pediatricians) are well versed in the rountine things...ear infections, regular strep throat, etc...and know very little about anything out of their range of expertise. PANDAS is a rare disease and there are a lot of unknowns. To add insult to injury, the research on PANDAS in the past few years has been really lacking. I did find that the regular ped/adolescent docs at the outpatient (after she was hosptalized) Eating Disorder Clinic my daughter went to very uninformed (and uninterested) in PANDAS. Don't forget, these docs are really busy with their other patients and families...they are only human...they can't be expected to know everything about every rare disease. Of course it is irritating that this comes off as close-minded and dismissive. Also, its possible they see a lot of kids that don't really have PANDAS (but do have high titers) so when a real PANDAS patient comes along they still have their blinders on...

Hi Again Sarah, By the way, my daughter is definitely PANDAS and her strep titers not high the 2 times we measured them. Ed Kaplan (WHO strep expert, although I wouldn't call him a PANDAS expert) has studies that show that 30% of kids with pharyngitis and positive strep cultures (kids that really have GABHS) do not get elevated titers...titers are a useful number if your kid happens to have them but IMO lowish titers (as my daughter had) esp. in the face of postitive cultures, do not disprove PANDAS. Kaplan also said it's possible my daughter *had* elevated titers but by the time we measured them (after 2 mo.) they could have gone down. Titers can be a bit tricky to interpret...some people mount a big antibody response and some peole don't. Kids with low titers can still be having an inflammatory reaction to the strep (perhaps the strep is somehow triggering changes in brain enzymes/basal ganglia)...as my PANDAS daughter so clearly demonstrated. So, I wouldn't completely rule out PANDAS in your son just because the titers aren't high. However, I do agree that the encephalitis is worth looking into. EAMom PS. Hooray for Kaiser for giving you a shot with the IVIG...I'm sorry to hear it didn't help your son.

Hi Sarah, give the Azithromycin at least 30 days..in other words, do more than the traditional 5 day course. My daughters PANDAS OCD/Anorexia has been in remission (gone) since June thanks to Azithromycin. By day 5 of Azithromycin her mood had improved but we were still fighting the OCD/eating disorder. By day 30 she was 99% back to normal...eating great, cheerful, her old self (see my post to 1koolteacher for more info.) It's definitely worth a try. Azithromycin also has anti-inflamatory properties in addition to it being an antibiotic...used in cystic fibrosis etc. PS. Which Stanford Dr. are you seeing?

Hi Worried Dad, please check out my response to "1koolteacher". Perhaps you can glean some useful information from my experience with PANDAS. By the way, I have heard good things about Dr. K...good luck with the phone consult.

Hi, My 8 year old daughter had PANDAS Anorexia Nervosa and was hospitalized for a week several months ago due to malnutrition (she had gone from 47 pounds to 42 pounds in a matter 2 weeks). (FYI her tics started late, after 2mo, but every PANDAS kid is different.) I would get *throat cultures* on everyone in the household (including your daughter and siblings). Insist on the 48 hour culture if the rapid tests are negative. Our daughter cultured postive. She had had a fever (which we realized later was strep since other kids from her class were sick with strep at that time) 2 months previously and that's when the behavior changes and restrictive eating started. Her younger sister (no symptoms...a carrier we assume) also was also postive for strep. (Note: there could also be strep hiding out elsewhere in the body so a neg. throat culture is not the end all.) Interestingly, by the time my daughter was hosptalized and strep titers were drawn they were *not* elevated...despite the positive cultures (but that's another discussion.) SSRI's were somewhat helpful with the depression/eating but the real cure came after several months when we finally put her on Azithromycin. By day 5 she was yelling at us less, a few days after that she decided she wanted to get better, then she started eating 3 meals a day. After4 weeks of Azithromycin she was pretty much back to normal, eating like a regular kid with no more questions about "will this make my stomach grow?, does this have sugar in it? will this make me fat?", tics were almost entirely gone. She is still on Azithromycin...we have no plans to take her off in the near future after 5 months of OCD, insane behavior, depression, and anorexia nervosa. Note: after diagnosis she and her sister were on several antibiotics once we found out about the strep and Azthromycin is the one that "cured" my older daughter and cleared the younger one of the carrier state. If your daughter is severely underweight re-feeding will be critical as well. A malnourished brain cannot function or heal well. If she is severely underweight she is immunocompromised. Suprisingly, we also discovered Advil (Ibuprofen) was helpful with my daughter's PANDAS AN symptoms. We discovered this before Azithromycin and continued the Advil until recently. (I don't know if I would rec. Advil for your daughter if she is complaining of stomach pain but something others may find helpful.) She is still on a low dose of Prozac (a little added insurance to keep the AN away), the Azithromycin, a multi-vitamin and probiotic. If your daughter (or siblings) have strep I would also change toothbrushes a few days into a the course of antibiotics. Give each kids their own toothpaste as well. This will help prevent reinfection. Good luck. I know Anorexia Nervosa is a huge nightmare and am so relieved that it is over (knock on wood) for me. If your daughter does turn out to have PANDAS AN keep in mind that you are facing an uphill battle since most pediatricians, dieticians, ED specialists do not understand or even *believe* in PANDAS.