i am new...any help?

[EAMom]

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...

[EAMom]

Ditto...great answer!

[EAMom]

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...

[EAMom]

Yet another thought on low titers..

 

ASO and anti-DNase are 2 titers that we are able to measure. That doesn't mean there aren't other antibodies produced by strep that we don't know how to measure.

 

I was reading something about some research re. anti-brain antibodies...you have to get CSF, not blood to measure them.

 

So, even the kids that supposedly don't have high titers might actually have antibodies causing the PANDAS...just not the ones we know how to easily test for.

[EAMom]

I love your"ramble" on carriers...

what really bugs me is that if docs think someone is a "strep carrier" they think that means they can't have PANDAS....I don't know if this is necessarily true, certainly I've never seen comfirming research on this...just a strange assumption that docs make.

 

In a sense, my PANDAS daughter was a type of a "carrier". She did have an initial (fever) strep illness, but then "carried" it in her throat (and elsewhere) 2 mo. after the fever. I believe the normal situation is that a child should be able to clear the strep by 2mo, even without antibiotics. Technically, carriers are supposed to be asymptomatic (I think)...although if we had not put 2 and 2 together from my daughters fever (and finding out about the other kids in her class being sick with strep) we might have made the assumption that she was never actually sick from strep and was thus an assymptomatic carrier.

 

If you read Kaplan and Kurlan's tic/strep/ocd study in the June 2008 Pediatrics (official journal of the american academy of pediatrics) they actually had 2 kids in the study that consistently (month after month) tested positive for strep...b/c their docs decided they were carriers, they were never treated with antibiotics. IMO it would have been interesting to try to clear their strep with a longer course of Azithromycin and see if that influenced their tics.

[1koolteacher]

[size="2"]Hi all,

 

Thanks again for all of the explanations! I really appreciate it!! So we went to Infectious Disease Specialist and he said my daughter probably doesn't have PANDAS bc her stomach tic has been ongoing/consistent since Nov 07 with no change. He said PANDAS includes kids who have tics/ocd/ect that comes and goes...does anyone feel differently about that or have any ideas,suggestions, comments? i was going to try find some info on that specific part. He did take a strep culture and will give antibodics if it comes back +. It seems to me he was real careful whether he believed in PANDAS or not...he didn't specifically say one way or the other. He did also say to repeat her blood since it was elevated at 570 (antidnaseB) the second time. I am not sure what it was the first time but it was elevated last Nov. I don't believe her initial blood work included the ASO. When i asked about it today, he said to have that one included the next time. He said to repeat study in 2-3 months or sooner if symptoms change. her neuro doc said to repeat study in one month....so i guess i will go somewhere in the middle of those two time frames. He also ordered do have a few stool samples taken since her stomach still hurts. However, he doesn't think we will find anything (as stool and many other GI tests were already done). He also told me to follow up with GI but they told me there is nothing wrong with her gastro due to tests they have done.

 

Maybe I can get my Ped doc to give some antibodics since I know her better and show her all this info if she isn't fimilar with it?? I dont' know what else to do....I am feeling really frustrated and helpless...docs seem like they just want you to sit down and wait a while...UGGHHH!! Sorry i am babbling...thanks for listening.

 

Good news is that my daughter is gaining weight (however i am nervous for fall bc she plays soccer and takes a dance class, last spring i had to take practice from her bc i was too worried she was going to pass out (she never actually did but i could tell she was not looking too good after two different practice times and i couldnt' take the chance). also her heartrate was too low bc she wasnt' eating enough so doc said she shouldnt play.i am also able to keep a closer eye on what she eats during the day vs being at school...

 

thanks again

[EAMom]

I most certainly would *not* rule out PANDAS on the fact that your daughter has been affected for nearly a year. *Normal* tics/tourettes come and go (wax and wane due to various triggers or other unknown factors). Sue Swedo describes PANDAS as being EPISODIC...meaning the kid is pretty normal and then they get strep and "bam" they are a different kid (tics, OCD, anxiety, depression, etc). Eventually, the EPISODE is supposed to end, presumably when the child gets on appropriate antibiotic therapy (or IVIG?). My daughter's "episode" lasted 5 mo. (actually 6mo. if you count the tics which took longer to go away) and was still going (very) strong until we found the Azithromycin (the 4th antibiotic she was on!). I'm quite certain that the PANDAS would easily have lasted *much much* longer if we had not used the Azithromycin.

 

Interestingly my daughter did have "waxing" in her 6 mo. PANDAS episode...she had 2 tooth extractions (for orthodontic reasons), one in Feb and another in early March...after each extraction her symptoms (food restriction, anxiety, depression, tantrums, emotional lability) worsened. What I think happened is that she had strep in her throat (since the fever in Jan.) and every time she got a tooth extracted more strep was released from her mouth into her bloodstream. .. This is why some people with certain conditions (heart problems? rheumatic fever?) go on antibiotics b-4 the dentist, to prevent bacteria from the mouth from entering the bloodstream...unfortunately at the time we were clueless about both the strep and PANDAS. It was pretty much immediately after the 2nd tooth extraction that her restrictive eating became "text book" anorexia nervosa. My husband must have called 30 psychistrists who told him they were not qualified to treat a 7 year old with anorexia/nervosa. Psychiatrist number 31 (at Stanford) suggested we have her checked for strep...

 

She also had "waning" after her first antibiotic/Augmentin (while in hosp for refeeding),improvement but still no where near her normal self...I think she felt better b/c the ab probably was working somewhat (maybe she needed it more long term). Then her symptoms "waxed" again a few weeks after hospitalization/augmentin...perhaps the amoxicillin prophalaxis wasn't strong enough or she may have been reinfected from her strep carrier sister.

 

But, I wouldn't expect every PANDAS kids to "wax and wane" within an episode, esp. if there are no abs or tooth extractions or strep carrier sisters!

 

For the first month or two, when she wasn't better on the abs we thought she was possibly getting reinfected from her sister. I also have a theory that her strep was "hiding out" (intracellular) or somehow resitant to the other antibiotics. Fortunately, we had a capable psychiatrist (pretty much the only doc we had who seemed to have any kind of a grasp on this illness) who believed in the PANDAS diagnosis and in antibiotics. Even my husband was questioning the PANDAS diagnosis when it took so long for her to get better despite antibioitcs/SSRI's etc...

 

Also, in my opinion, SSRI (prozac etc.) will help control the symptoms of PANDAS (ocd/mood etc) but that is not a real cure. You need to get rid of the strep and even then it may take some time for the inflamed brain to recover. Also, some things seemed to recover faster than others...my daughters OCD/anorexia got better faster than her tics (for whatever reason?). We were still seeing tics 4-6 weeks into the Azithromycin when her OCD/anorexia were pretty much gone. Tics were gone at 8 weeks into the Azithromycin. So, if you count the presence of tics you could say my daughters episode lasted 6 months...of which 4 of those were with antibiotics.

 

I could see if a patient doesn't ever get the right antibiotic (Sue Swedo's kids were treated with abs and or IVIG so their episodes ended) the PANDAS could really go on indefinitely...perhaps causing scarring/long term damage...nobody really knows how many kids with chronic tics/tourettes were untreated PANDAS (I don't intend to be alarmist, sorry)...and maybe after years and years of inflammation from the PANDAS they won't get better even with abs/IVIG...but that's my personal unproven theory. It probably helped matters for Swedo's kids that were pretty young (7-8ish) so their brains were able to heal faster.

 

Also, I've heard with each subsequent episode of PANDAS it takes *longer* for your kid to return to normal...

 

Mae Sokol is the doc who basically discovered PANDAS anorexia/nervosa...I don't know if you've had a chance to google her or just PANDAS ANOREXIA OCD (if you leave out the OCD you'll get a lot of stuff on panda bears who are not eating ). Interestingly, some of these kids with PANDAS anorexia are a little less typical of most AN...they may have a fear of choking for instance (according to Dr. K/Chicago), and not a true fear of being fat/weight gain/distorted body image (like my daughter had). Unfortunately Dr. Sokol passed away from cancer...I don't know if anyone is following in her footsteps....

[EAMom]

PS. I'm happy to hear that your daughter is gaining. Anorexia nervosa is so horrible to go through as a parent...to stand by helplessly as your child starves herself. I do remember in the end of May (just before the Azithromycin) we had a low point...they wanted to re-hosp. her due to her heart rate...we chose not to and luckily things worked out.

[EAMom]

Correction...my husband reminds me that dd's tics actually started in early Feb/late Jan (soon after FEVER). They were quiet throat sounds she made when he read to her at night. They became much more noticeable/prominent in March when symptoms waxed.