EAMom

Nancy!! can you tell me more about this? I searched wikipedia http://en.wikipedia.org/wiki/Cholestyramine and found this is used to lower cholesterol. Is this considered a Statin? The reason I'm asking is that my PANDAS dd has VERY high cholesterol, total is 271 (with high very high LDL 202). The endocrinilogist wants to put her on statins. Of course, probably won't do the statins (due to side effects, unknown long term use, controversy) ... unless (since I read they are also anti-inflammatory) they might also help her PANDAS.

I wasn't familiar either. If you google "yeast spit test" there are lots of hits. http://www.candida-yeast-problems.com/spittest.html One of the sites says to use bottled water.

here's aother thread re adults with PANDAS http://www.latitudes.org/forums/index.php?showtopic=16422&st=15

http://pandasnetwork.org/2012/08/omission-of-conflicts-of-interest-in-moving-from-pandas-to-cans/ Omission of Conflicts of Interest in “Moving from PANDAS to CANS” By Vickie Blavat, on August 18th, 2012 Critics of PANDAS published a paper against prompt treatment for children in January 2012. At that time they did not disclose their affiliations with pharmaceutical companies like Psyadon – who develop tic suppression drugs. The Journal of Pediatrics has issued a correction for the undeclared disclosures. PANDAS Network.org’s summary and parent editorial for this controversial paper was sent out in the January newsletter.

ditto the question...I guess intestinal yeast is one concern. What are the tests, and is this something a regular doctor (ped) would know about and order?

Okay...saw an ad for this on TV, and my kids thought it looked neat. Maybe your son would want to bathe in "magic goo"?? http://www.gellibaff.com.au/

is this with a bath as well? swimming in a pool? It sounds like sensory defensiveness. Sensory defensiveness really skyrocketted for us when my PANDAS dd's pandas was full-blown at age 7.5years. Here's a link, and bathing is mentioned. http://www.sensory-processing-disorder.com/sensory-defensiveness.html

It would be interesting to ask him now what was going on back then to make him so upset re the baths.

http://general-medicine.jwatch.org/cgi/content/full/2006/110/2 one concern I have is that H2 blockers might make one more prone to C. Difficile: Gastric-acid suppression has been associated with an increased risk for bacterial enteric infections such as salmonellosis, and several studies now suggest that it also heightens risk for CDAD. The biologic explanation for this association is not immediately clear, as the spore forms of C. difficile that are thought to transmit disease are acid-resistant, but other drug effects might be responsible. The association with NSAID use, if confirmed, also awaits explanation. Clearly, we have not yet even begun to understand the full biologic and behavioral story of CDAD, especially in the community.

is this with a bath as well? swimming in a pool?

Yes, Children's Hospital of Pittsburgh. I was referred to their PANDAS "specialist" Dr. Judith Martin, who might just be the single worst doctor I have ever encountered in my life. She basically sat there and interviewed us on our first visit, with her back turned to my son typing into her computer. When she got enough info for her researched she told us thanks and to schedule a follow up in 6 months. Not once single piece of advice or treatment option other than take antibiotics when there is an infection. So we waited the 6 months for her next "PANDAS clinic" day where she again interviewed us, this time in the presence of a psychiatrist. They left the room, huddled in the hallway, and wouldn't you know it, the psychiatrist recommended that if there were still symptoms to set an appointment a psychiatrist. When I pressed her to offer another treatment, she reluctantly tried to test my son for strep. When he wouldn't open his mouth wide enough, she urged we 'go home and practice.' I went to my pediatrician the next day, had him tested, and they found a nasty double ear infection. After 2 days of augmentin he was back to normal. Thanks for the advice everyone. I am still processing it all to try and figure what to do next. yeah...I have heard the "PANDAS clinic" is basically a waste of time.

check for Lyme (Igenex). A lot of those symptoms are Lyme (tick) symptoms, and I have read Lyme can also cause a positive ANA how old is your dd?

fyi for future mosquito bites, put scotch tape on them (and leave it there) as soon as you notice them (don't wait until they are big). It really helps with the itching and keeps them from getting big

Interesting...did he also rec any H1 blocker antihistamines (zyrtec etc), or just H2 (pepcid)? Let us know how it goes.

You might also give this to your ped to read...recommends 3-6 weeks of abs as a trial, so maybe you can get a longer course of abs while waiting to see the specialists http://ocfoundation.org/PANDAS/

I would also recommend getting throat cultures (for strep) on all family members (to make sure you don't have a carrier in the house, they will need to be cleared).

EAMom, Is it possible that her uptick in symptoms is a result of a naturally high anxiety circumstance? Being away from home, around many strangers, all the anxiety that comes with the social posturing of young teenage girls? Like a learned response instead of an infection based response? There have been a couple of occasions when I was fairly certain my dd12 was not sick, but in an anxiety provoking situation and I would see a symptom stick its tongue out at me. So far, I've dealt with this on our own, identifying it, naming it, calling it out and sending it packing. It is not frequent enough or severe enough (in my eyes) to warrant starting up therapy again. When you said sleep away camp, that was the first thought that popped in my head. Just a thought. Jill good point...I don't think so, but maybe. She was in a cabin with a couple of good friends from school. And, when I went to pick her up the girls seemed to like her/be nice. But maybe there was some other anxiety going on? One thing that may be significant, was that she went the whole time (Sun-->Friday) without pooping. Apparently the rule was that someone had to accompany you to the bathroom. My dd didn't want someone waiting outside the bathroom for her, so she just didn't poop (yeah, how is this even possible?). She's not a fast pooper at home (I think she goes every other day?). So, maybe some kind of GI workup might be in order? some kind of food allergy? ugh Her symptoms seem to be slowly decreasing (since camp--mid July) but are still there (still worse than before camp). The only other sleepaway camp she had gone to was science camp in 5th grade (with school) and there were absolutely no problems with that (pooping or exacerbations).

I used Xlear nasal spray when I had a sinus infection. It was great. I guess not a nebulizer, but it did get the stuff up into the sinuses. http://www.amazon.com/Xlear-Nasal-Wash-1-50-Ounces/dp/B000QYNWS2

Let me guess..CHOP. Make an appt with Dr. Latimer. Get in with Dr. T. while you are waiting if Dr. Latimer has a long wait. Dr. Bouboulis in CT is another doc (immunologist) who is a good PANDAS doc (will treat aggressively)...those are the top 3 treating PANDAS docs in the Northeast. Don't expect to find answers locally (Pittsburgh). Many PANDAS kids (in the northeast) end up seeing 2-3 of these 3 docs. There is also an Azith trial (Florida, not sure if it is also going on in Mass) http://clinicaltrials.gov/ct2/show/NCT01617083?term=pandas&rank=4 In the meantime, I would check everyone in the household for strep (throat culture). Also, I personally don't know if IVIG will be as effective until you can get to the bottom of (stop) the ear infections?

Test with Igenex. If you have a PPO that might cover some of the costs. Or, you can start with Quest (or whatever regular Lyme test western blot is covered by your insurance), and follow up with Igenex if Quest doesn't give you a diagnosis. (If Quest is positive, no need to spend $ on Igenex.) I understand Lyme can cycle/wax wane, kids feel better for a while, then worse again. As far as PANDAS resolving with puberty, dd started her period in Jan. Overall doing well, not 100% though...now we have relapse after 1 week of sleepaway camp this summer. We even doubled her Azith to 500mg/day that week. "Measurment rituals" and food concerns/compulsions are have risen. So, puberty has not been a magic ticket for us. I don't think she was ill during camp, but exposed to something?? Who knows. I have heard of kids doing better when much older (20's). But, I have also heard of PANDAS persisting into adulthood. Strep is not my dd's only issue (flares with viral things eg H1N1, fifth's, any viral fever), so it is more complicated for us than just not getting strep. I also agree with the others that your child's constellation of symptoms (pain, neck pain, paleness, headaches) seem very tick-borne, and less straight PANDAS (OCD? tics?).

:D :D

did she get abs for the pneumonia (I assume?) which one? how long has it been since stopping? it wouldn't hurt anything to get a throat culture for strep, just to make sure that isn't a factor, since so many PANDAS kids have culture positive without typical symptoms.

Number 1 in my book...how does your dd feel about being held back? Also, where is she age wise (ie when is her birthday)? if she were near the age cut off for grades, I would probably be more likely to consider holding her back. If she is already one of the older one in her current grade that is another thing...consider that she may wind up being 1-2 years older than everyone else in her grade (depending how how many people are holding their kids back). My friend with (non-pandas) twins decided not to hold her girls back (Oct birthday, so she could have redshirted them--cutoff here is Dec 1, a lot of people redshirt fall birthday kids). She was glad she didn't since they did fine academically. Also, one of the girls hit puberty relatively early (got her period in 5th grade). The mom was thinking, gee, if I had kept her back, she would've gotten her period in 4th grade...so that was a weird factor that made her glad she didn't red-shirt them. Or, if she is tall for her age, that might be another thing that would make her feel weird about being in an even younger grade. But, that is my perspective...I think "fitting" in is important for many kids. Definitely is for mine, doesn't want to be called out as different, and I think physically different is part of that (too tall or too physically mature).

did they culture your son's tonsils when they were removed?

what is TGF-B1?