EAMom

Hi Mom2Pandas...have you every been on birth control pills? (Don't they work by making your body think it's a "little bit pregnant?"....I know the various types have different formulations...I'm thinking about progesterone in particular.)...if you have, did that have any influence on your PANDAS symptoms?

Anyway, a throat culture is a very benign easy thing to do...much more so than some of others tests they could be running on her!

Hi Indigo, I wouldn't do the SSRI if your dd is doing well just on the abs. Are you planning to stay on the abs long term? I would rec some kind of antibioitc prophylaxis. Was the hyperactivty something she had b-4 PANDAS or do you think it's from the PANDAS? It may just take more time for that aspect of her PANDAS to dissapate. It took my dd's tics longer to go away (about 6 weeks) than her OCD/anorexia nervosa. I don't believe they use SSRI's for hyperactivity anyway.

In dd's case the SSRI's was rx'd mainly for the OCD and also depression (and anxiety). I agree, start low, go slow with SSRI's, esp. with PANDAS. Here's an article talking about how PANDAS kids may be more sensitive to SSRI's. http://www.primarypsychiatry.com/aspx/Arti...x?articleid=561 Currently dd is on 10mg prozac day even though PANDAS is in remission. It seems to help with her pre-existing social anxiety. So far this has been a good drug for her. I think her brain was a bit serotonin deficient even before PANDAS. When dd was diagnosed with PANDAS OCD/Anorexia Nervosa (she was also severely depressed) she was intially put on Lexapro (not a lot of track record of this drug on kids so I wouldn't really recommend it.) She had akathesia ("inner restlessness")even at the lower doses and serotonin syndrome when we upped the dose (shouldn't have but at the time we hadn't figured out what problems were from the PANDAS and what the Lexapro was helping/hurting, the lexapro did initially help her depression and her eating.) SSRI's are also supposed to help prevent re-occurence of Eating Disorders...which could be helpful if dd gets PANDAS again.

Frequent urination/urgency can sometimes be the *only* sign of PANDAS. I would rec. a throat culture...do the 48-72 hr culture if the rapid is neg. My daughter had PANDAS Anorexia Nervosa, OCD, psychosis, etc. Jan 08-June 08 (2nd grade)... When she was in preschool she had an episode where she was acting like she had a bladder infection. It was an overnight change (she had up until then been the type of kid who only peed 2-3x daily)...I took her to the pediatrician 2-3x...they assured me it was not a bladder infection. Eventually (weeks later) she gradually improved on her own. I realize now that could have been our first PANDAS episode (no throat culture was done of course, only a urine sample). A lot of kids get strep with no symptoms (no sore throat, no fever etc.).

Hi dominique, re tooth extractons/dental cleaning...our 7.5-year-old daughter got strep in Jan (3 days of FEVER, we didn't realize it was strep at the time, that is when beh. changes started) and had tooth extractions (for orthodontic reasons) in Feb. and early March...her symptoms (OCD, tics, anorexia, emotional lability, tantrums, anxiety) got *much* worse after each extraction (after 2nd extraction she was full blown anorexia nervosa and quite psychotic). When we finally learned about PANDAS, we did throat cultures ....postive for strep in March (as did her asymptomatic 5-year-old sister). (Interestingly, her strep antibodies were not high when tested in March and April.) We suspect what happened with the tooth extractions (could happen with dental cleaning or nose picking as well according to ped. rheumatologist at Stanford) is that more strep (from mouth/throat) got released into dd's bloodstream after each extraction....this is why somebody with ARF has to go on abs b-4 they go to the dentist. So, if anyone else has worsened symptoms after tooth extractions or dental cleaning...that IMO is a big red flag that strep may be the culprit/cause of tics/OCD. What antibiotic combination did your son go on? Many here (my dd included) have had sucess with Azithromycin but I have also wondered about using more than 1 antibiotic at a time for those non-responders. Is your son currently on prophylactic antibiotics? Thank you for posting, I think we can all learn a lot from these sucess stories...

What's NT?

re advil...it's only supposed to last 6-8 hours...we didn't give it 3-4 x a day when dd was really bad b/c she was suspicious of most of the meds/pills and 1-2x was all we could manage. Mostly, we'd do it in the morning b/c we figured we needed the help most during the day.

What dose of Azithromycin are you using? We used 250mg/day but dd was only 44 pounds. It took about 10 days to see a significant change. Hang in there! We also gave 200mg advil (ibuprofen) 1-2x daily. I'm pretty sure you can't use the advil at the same time as prednisone but it is something to try if you decide to go off the pred. (Check with you doc 1st...there might be a certain amount of time you need to wait once off pred. b-4 you can do an nsaid like advil b/c of GI concerns.) I know pred. can have it's own set of side effects in some people (irritability etc.) but I it does have a strong anti-inflammatory effect.

This article (which is written about girls but I suppose might also apply to boys?) talks about being overweight and environmental toxins as possible causes: http://www.usatoday.com/news/health/2001-0...rly-puberty.htm

Sarah, Thanks for the update...you are making me curious: 1) So did he think it was encephalitis or PANDAS? ....or is he calling PANDAS a type of encephalitis? 2) If it's PANDAS did he explain why IVIG wasn't working? Did he not think IVIG would work b/c you already has so many and it didn't help? (Maybe the IVIG didn't work b/c it was the wrong type?...I know some folks on this forum are starting to discuss the different types of IVIG.) 3) What's HBOT? 4) I'll have to look up those drugs...is he wanting to give anything specifically for inflamation? 5) Did he think your son's prognosis was good?

Hi Pat, maybe your son picked up a strep infection from camp. (I know strep doesn't *usually* cause a cough...)

Yes, well I totally agree that PANDAS kids have an abnormal immune response to strep and excess inflammation...I just can't decide if it qualifies as techinically "autoimmune" ....I guess that is okay if Sue Swedo doesn't know either. I like your statement about repeated attacks resulting in a "baseline change"....I hope this isn't true but I think it might be...so we end up with kids with chronic tics (or other problems) which didn't have to be that way if their PANDAS was appropriately controlled (eg with prophylactic abs or possibly IVIG) vs. just treating their symptoms (with meds for tics or OCD) for years on end.

You are completely right! Strangely, even during my dd's PANDAS episode (which was horrible), I did think many times "at least this is not autism, that would be a million times worse". Is the IVIG mainly for the autism or PANDAS or both?

P.Mom, Hmmm, interesting point about the IVIG and steroids... Well, a disease doesn't necessarily have to be autoimmune to respond to steroids. Asthma for example, is not autoimmune. (But it is inflammatory.) I looked up IVIG on wikipedia...IVIG is not only used for autoimmune disorders but also, some inflammatory conditions, immune deficiencies, cancer, infections (pediatric HIV) etc... So we can't know for sure that IVIG works b/c PANDAS is autoimmune. I would say there is definitely harmful inflammation (eg. enlarged basal ganglias on MRI) going on with PANDAS... it could also be that the strep toxins are causing some sort of ongoing brain inflammation...like a bee sting or asthma of the brain. Maybe once your brain is so inflamed, ie has "asthma/Pandas" , other viruses/bacteria can irritate it just as cigarette smoke or cat allergens could push a person with asthma "over the edge"?

Dd didn't start probiotics until June (she started antibiotics in March). I give the one's from Trader Joe's...who knows if they are any good? They aren't the kind you put in the fridge. PANDAS dd has no yeast problems that I am aware of...maybe she's just not prone. Her younger sister had had yeast problems from time to time over the years. She had also been on abs from time to time due to ear infections, perhaps that is why?. PANDAS dd never got ear infections...in fact I don't remember if she had ever been on antibiotics in her whole life until March when we figured out she had PANDAS. I figured out this weekend that my kids love smoothies that I can make at home...the yougurt has a lot of the same bacteria as in the probiotic. Maybe that'll help younger dd (she doesn't take probiotics, doesn't swallow pills either) in the future.

re autoimmune theory and antibodies... I think it *is* possible that PANDAS is autoimmune...but the antibodies that are the culprits aren't necessarily ASO and anti-DNase...for instance, there be anti-brain antibodies in the CSF (which would be very difficult to measure) which are attacking the basal ganglia. Also, we don't know if the antibody thing is linear...if these kids are acting like they are "allergic" to strep, it could take only a very small amount of antibody to trigger this inflammatory response in the brain. But you are also right... it is possible that PANDAS could be a response to strep toxins etc. Or...could be a combination of all of the above?

I would think (but I don't really know for a fact) that penicillin (vs. a broad spectrum antibiotic) would make one less prone to yeast since pen. pretty much only gets the strep but leaves the other bacteria....whereas Azithromycin, Keflex etc kill off lots of bacteria besides just strep. If your dd is PANDAS then I would think (hope) there would come a time when the intracellular bacteria would eventually die off (with the Az. long term) and then in theory you could go off it. The reason for the penicillin would be to prevent a *new* strep infection from taking hold, i.e. not give the *new* infection a chance to get colonized and go intracellular, thus starting the whole cycle all over again. Also, it is my belief that subsequent PANDAS episodes are harder to control/more severe...thus it makes sense to prevent a new episode.

So, pegelm...if you took your dd off Az. in the summer maybe you temporarily could switch to pennicillin? Does pen. cause less yeast problems b/c it is so narrow spectrum (kills fewer types of bacteria?)?

Mary, I'm so sorry that man made you worry. He is a nut.

Not really a problem to get the rx. One issue was that our ped. knew that Azithromycin cleared younger sister of her carrier state so it seemed reasonable that we should try it on her PANDAS sister. Also, we are persistent and I suspect she felt a little bad that she missed the initial diagnosis (sudden onset anorexia nervosa in a 7-year-old with tics, ocd, psychotic behavior...all in a previously normal kid...she should have figured it out IMO). Also, we told her about Diana's sucess with Azithromycin...and I believe at that point we were giving her Diana's information and told her to speak to Diana's son's pediatrician who is in the same big medical group (but different town) as our ped. Our ped was leary about us using it long term...I think she is coming on board with that now. She actually has no choice now since the ped. neurologist and ped. rhuematologist agree that we should do the prophylaxis. Dd's psychiatrist also was willing to write the Azithromycin rx for us (she did the refill after the 1st 5 days since our ped. was on vacation at that point)...

I just wanted to add that not everyone does better on Azithromycin. For example Nurseq's son did better on Keflex, got worse when she switched to Azithromycin. Maybe it depends on the strain of strep or if the strep is intracellular?

My younger daughter was cleared on 5 days of Azithromycin. We checked that she was clear 3 weeks after the last Az. dose (and again in August since she had a sore throat after a trip). Our pediatrician had originally wanted to tryClindamycin (3x day for 10 days I think). Clindamycin (liquid as she's only 5) had a completely horrible smell and taste and the poor thing cried for an hour b/c of it...needless to say, we only made it through 1 dose of Clindamycin before we switched to Azithromycin. I have heard of people using the clindamycin for 30 days to clear strep. A grown-up could take the pills. However, I wonder if a longer course of Az. would work if the 5 day course doesn't do it. I was also curious about using Augmentin and Azithromycin at the same time (or some other combination?)....

My husband and I are 99% sure it was the Azithromycin that sent dd into remission...we don't know if there is still some minute amounts of strep hiding out in her system which is 1 reason she is still on it. We started Az. on June 2 (rx for 5 days). On days 3-5 we noticed dd was yelling at us less, mood slightly improved. Otherwise, there was not much change. After 5 days we debated whether to do more. We took her off for a few days (she went back to Amoxicillin prophalaxis). Her mood declined again (this was fairly subtle) after 3 days off the Azithromycin. Diana (also posts on this forum, our kids have the same psychiatrist) encouraged us to continue with the Azithromycin. We restarted the Azithromycin. About 3-5 days into the second course dd "decided she wanted to get better" and started eating 3 meals a day. Her contamination fears (which had been going on for 2+ mo.) also resolved at that point and her mood improved significantly. By 3 weeks into the Azithromycin, her restrictive eating was entirely gone (now eating snacks, cookies, completely normal 8-year-old stuff) and her OCD questions (eg "will this make me fat?", "will this make my stomach grow?", "does this have sugar in it?") were gone. At 1 mo. into the Az. she doing great but still had some (becoming less frequent) motor tics (not a big deal to us) and was still a little "edgey"...I'd say she was 97% normal. At 2 mo. into the Az. she was 100% (as far as we can tell.) No obvious tics, not edgey. One thing that is interesting...Diana's son took about 10 days on Azithromycin to "really turn around" and this was the same with us, the most noticeable change was at the 10 day mark (when dd decided to "get better" and started eating 3 meals/day). Diana said her son's tics took longer to go away, just like my daughters. The other similarities were that (I think) both our kids had PANDAS for about the same length of time (several months) and it's even possible that both children were infected by the same strain of strep as we live only 20minutes from each other. Also, both kids were also about 7.5 years old when their PANDAS struck. Re Diana and the Azithormycin... her son was doing well until they decreased the dose to 125mg/day and got exposed to strep again in July...he's better, back on 250mg/day, but not 100% which is why she's going to do the IVIG. It makes sense to me that we wouldn't necessarily see a 100% overnight change on Azithromycin, esp. after 5 months of having an inflamed basal ganglia. I would imagine it takes a while for the brain inflammation go down and for anti-brain antibodies or strep toxins leave their systems. Other things...we also were giving dd advil periodically since mid May. We think that helped, she often slept after the advil and often ate better after it. We started giving it consistently mid-june until early august (usually just in the morning). We think that helped with the neuroinflammation. We also switched from Lexapro to low dose of Prozac in mid May. The lexapro didn't help tics or ocd questions but did seem to help her eating and initially her mood. We took her off due to akathesia and possible seratonin syndrome. Originally our intention was to take her competely off of SSRI's when we stopped the lexapro but her anorexia nervosa came back in full force (2 pieces bread/24hours) as her seratonin levels decreased. So we put her on Prozac which she is tolerating well and appears to even be helping with her pre-existing social anxiety (shyness around adults including teachers/other kids' parents). In April/May I had wanted to try omega 3's to help with inflammation/brain repair but the pills were too scary and big for dd. I did eventually buy some orange flavored fish oil but by that time she was already much improved and dh didn't want to mess around with another variable. I'm also curious to see what will happen once dd gets exposed to strep this winter. Whether the Az. will carry her through or whether there will be an "allergic" reaction even if she doesn't get a true infection. We're still waiting and seeing...which is why I say dd's PANDAS is "in remission" and not "cured".

Azithromycin also has anti-inflammatory properties which helps the CF. Here's a paper: http://www.ncbi.nlm.nih.gov/pubmed/16005266