EAMom

good quote...I wonder what Swedo would say re what is happening when these kids start reacting to other infections (viral, other bacteria)? Is it just that these "other things" (including stress) open up the bbb and allow more molecular mimicry to take place (assuming a certain level of cross reactive antibodies are always present in the blood stream)? Dr. T. doesn't think it is actually molecular mimicry that is going on (b/c so many non-strep things trigger pandas/pans)...but I haven't had time to ponder his theory.

Go with your mommy gut! You know your kid. You know what your kid was like before this started. You've seen him change (with a diagnosed strep infection no less!). You really can't compare that with an hour or two of assessment (no matter how well-intentioned) from any MD. It's not uncommon for parents to need the 2nd or 3rd (or 8th or 18th!) opinion to get their PANDAS kids diagnosed/treated/healed. Based on your son's history/symptoms, I would say the exact same thing...even if you had gotten the "it's TS and not PANDAS" from the OTHER Dr. L (Dr. Latimer). I would say, you are lucky to have an on-the-ball ped! Would she be willing to use something stronger than pen? Here's an article you might want to read and share with your ped. http://www.pediatricnews.com/views/id-consult/blog/amoxicillin-failure-in-strep-throat/bedfe23ae75bfc7dd86f8bc32c438492.html Most PANDAS parents find Augmentin and/or Azith to be most clinically effective. Also, don't forget to take videos of the various tics to show to docs in the future. Will your pedistrician (and/or your own doc) throat culture the rest of the family (to check for carriers)? That is really important. My younger dd was a strep carrier (throat culture positive, no symptoms) and my pandas dd reacted to that. Younger dd cleared on Azith (but not Augmentin). Hugs! You have a lot of other PANDAS moms rooting for you. I would also keep Dr. L. updated, let him know that your son is doing much better now that he is back on abs...maybe he will change his mind given this new info, and it would be an easy way to get cooperation from dh? Also, before you do steroids (or IVIG) get the Cunnigham test (which knock on wood, should be available in 2 mo.) That test is supposed to be good for telling TS vs PANDAS. Perhaps it will help settle any qualms your husband may have about the PANDAS diagnosis?

Yes, we get those mood swings too. I think she remembers them though.

The Vitamin D council has some recommendations on doses. Here's a link http://www.vitamindcouncil.org/about-vitamin-d/how-to-get-your-vitamin-d/vitamin-d-supplementation/ Based on the body's indicated daily vitamin D usage, Vitamin D Council recommends the following amounts of supplemental vitamin D3 per day in the absence of proper sun exposure. Due to the variable response discussed above, these are only estimated amounts. •Healthy children under the age of 1 years – 1,000 IU. •Healthy children over the age of 1 years – 1,000 IU per every 25 lbs of body weight. •Healthy adults and adolescents – at least 5,000 IU. •Pregnant and lactating mothers - at least 6,000 IU. Additionally, children and adults with chronic health conditions such as autism, MS, cancer, heart disease, or obesity may need as much as double these amounts. also... At the IOCDF conf. in Chicago, Dr. Murphy mentioned D (with respect to PANDAS). She said: "Vitamin D is immune modulating and anti-microbial. 50 is an ideal level." Btw, I also have in my notes the words "Swedish D study"...I don't know what she meant but I googled and found this: http://www.vitamindcouncil.org/news-archive/2010/update-on-autism-and-vitamin-d/ At the same time, some researchers in the USA continue to deride my theory while scientists in Sweden are starting to piece it together. Three Swedish papers were published this month that support the Vitamin D Theory of Autism. It makes sense that low D could be a piece in the rise of autism puzzle. 1-2 generations ago, people probably spent more time outside, and were not quite so fanatic about sunscreen.

OH...maybe she could qualify for the NIMH IVIG study? they still need kids.

This is on IOCDF's FB page (along with a picture of certain PANDAS folk: eg Swedo, Murphy, Jenike, Sue Dailey...in front of Rogers): "Last week, members of the IOCDF Scientific and Clinical Advisory Board and staff from the IOCDF met with Rogers Memorial Hospital to discuss the latest information about PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome). This meeting was part of the IOCDF's overall efforts to promote the mental health and wellbeing of kids and teens visit www.ocdinkids.org "

My understanding is that the IOCDF is working to encourage Rogers to treat PANS/PANDAS medically. So, hopefully things will change... It does bum me out that parents have to choose between the safety/security of a residential treatment program and treating PANDAS medically. They should be able to have both!

Here's a list (from a prostate website!) on antibiotics with anti-inflammatory properties. http://www.chronicprostatitis.com/abx.html

I totally and completely agree with everything nicklemama, MomwithOCDson, and ko's mom have said. And I'm going to say it again, PANS didn't replace PANDAS. PANDAS does NOT require OCD. Only PANS does. (Not to say that kleek3's son doesn't have OCD...sometimes defiance can present as OCD, sometimes little kids "hide" their OCD.) When my dd was younger, her OCD at first looked more like "difficult behavior" and manifestested as bossy behavior, tantrums and rages (partly because things had to be a certain way).

These UK docs were on Beth Maloney's list http://www.savingsammy.net/providers.php : UK Gavin Giovannoni, MBBCh, PhD Neurologist and Immunologist 4 Newark Street London, UK 44 20 7377 7472 44 20 7377 7033 (fax) Professor Peter D. Hill, FRC Psych Psychiatrist 17 Harley Street London 02074 862 332 Great Ormond Street LondonWCiN3JH 0207323 1535 or 020 7829 8679 Dr Andrea Whitney Peadiatric Neurologist Southampton General Hospital Tremona Road Southampton Hampshire UK 023 8077 7222

I just thought it would be worth mentioning here that, at this past summer's IOCDF conference, Dr. Swedo acknowledged that her team had to make some compromises with respect to the PANS criteria and that they had, reluctantly, removed primary tics/TS from the criteria. If I recall correctly, however, she indicated that she regrets having made that "deal." Vickie, do you recall this commentary? Do I remember it correctly? I'd also like to suggest that it's possible, as many of us parents have experienced, that given the various comorbidities our kids can exhibit, sometimes you (and/or your doctor) can get caught up in the primary presentations, very focused on that, and thus the other, more subtle components escape us or get bundled into the primary behaviors even if they could be distinct on their own. For example, my DS's primary behavior was OCD and so for a very long time, I would have told you he had no tics whatsoever. But the truth is, as we began to tease out his behaviors and the treatments, and I participated here and shared thoughts and experiences with other parents, I realized he did, actually, display tics as well as OCD in the depth of his PANDAS, like leg-dragging, repeating words over and over, etc. Conversely, I've also read many posts by parents of kids who's primary presentation has been tics, but they post about behaviors that, to those of us immersed in the OCD world, would readily be recognizes as OCD-oriented, but they're asking, "What is this?!" because they've had less exposure to that side of the symptomology. I like Dr. L. from Yale, but I'm not sure your child wouldn't benefit from a second opinion. Dr. L at Yale must be Dr. Leckman. I completely agree with MomwithOCDson (also norcalmom and the other posters)!! Also everyone needs to remember that PANS isn't replacing PANDAS. PANDAS still exists (and doesn't require OCD, can be OCD and/or tics). PANS is a research criteria (so Swedo and other researchers could study acute onset OCD without the Kurlans and Singers messing with them, or having to "prove" a strep infection.) I should add, when the "Cunningham Test" becomes commercially available, consider having that run. One of it's strengths is differentiating PANDAS from non-PANDAS tics (eg TS). Also, throat culture everyone in the household (now! -- have them do the 72 hour culture if the rapid is neg). Repeat the throat cultures if there is any change in behavior/increase in tics. What labs or tests did they do at Yale? In reading over your orginal post (before you went to Yale), I would say your son could be PANDAS until proven otherwise. (Here's the link to the post if others want to read it http://www.latitudes...=1 ) I cut and pasted part of the orginal post (for others)...it doesn't sound "tic only" IMHO, also correlated with strep infection (did that ever really clear from the child or household?): It all started in April this year when B started a shoulder roll. I thought his shirts were too big, so I got out last years smaller size and that didn't fix the problem either. We went on a family vacation shortly after the shoulder roll started and he just wasn't the same B. Upon return, he was dx with Strep after a week of high fevers and a miss dx in the local ER. We treated him with antibiotics and then the real changes started to take place. Throat clearing was nothing new. He had been doing that for a year or more. The neck rolls, the frequent urination the repeating of words, Mom, Mom, Mommie, the nose sniffing, finger and toe nails peeling off. The list goes on... I took him to the local Peid and they said he will out grow this. My DH and I KNEW there was something off. You see, I could learn to deal with the Tics. It's the behavior side of the PANDAS that seems to knock you off your feet just when your least expecting it that we are suffering with right this minute. I asked the PA about PANDAS and she followed up with the DR and they said we will refer you to a Neurologist. We saw the local Neurologist and at the same time I was on a mission to get someone to listen to what we had to say. This child was clearly not the same as he was in March of this year, and no one can tell me it's just going to miraculously go away. When we saw the Neurologist, he did in fact say that going to Yale to see Dr. L was perfectly right. AHHH! Finally, someone could see what we as parents were seeing. After a long wait, with symptoms coming and going, after being on Penicillin for almost two 1/2 months now...we head East to see the specialists. In the last week, the behavior issues, ie. hitting, flat out destructive behavior countered with baby like whining has started to rear its ugly head. note: I see frequent urination is mentioned. That is a classic PANDAS symptom. It isn't a TS symptom. Also, what do you mean by the "behavior side of PANDAS"? Do you mean rages/tantrums, defiance, oppositional behavior, anxiety, ADHD-type behavior? Also when anyone says their child is "Clearly not the same" as weeks or months previously, that reeks of PANDAS.

BTW, wombat, are you a male or female? the reason I ask is that there are some discussions about how certain types of birth control pills can help PANDAS. Also, if you are on Facebook, there is PANDAS/PANS international group (or something like that). Maybe someone will have some leads. Have you tried a trial of antibiotics (full strength, like 1-2 mo. month of Azith. or Augmentin)?

Here is an older thread where T/A in adults is discussed http://www.latitudes.org/forums/index.php?showtopic=16422&st=15 I should add that with this Turkish study http://www.turkpsikiyatri.com/en/default.aspx?modul=article&id=592 , adult men responded to PEX, but relapsed weeks or months later with respiratory infection (as they were not put on any sort of long term abs after PEX). I would assume that would be the same with adults getting IVIG, the potential for relapse, esp. if there are no follow-up abs.

Yup! Going against medical advice can definitely be a good thing!

Wow... I think healthcare is so messed up. This is a perfect example! Right up there with PANDAS kids getting CT scans and spinal taps, before docs will consider doing a simple throat swab. Right up there with my friend's 14-year-old (with fatigue, pain, brain fog, camping/tick history) whose docs ordered HIV/pregnancy/illict drug testing months before they would agree to run a Lyme test. And a plastic surgeon for 2 stitches on a foot? Impressive!

Maybe b/c it is like an SSRI? It also seems like it can interact with a lot of other drugs. http://www.livestrong.com/article/158126-st-johns-wort-interactions/

Where your kids on antibiotics (and which ones?) prior to tonsilectomy?

okay Lyme experts...anyone heard of itching during taking a shower (this is one of many strange symptoms) being a Lyme symptom? This is for a friend's dd. I think swimming pools are are okay...so I'm not sure if it's the heat or the pressure from the shower (or something else).

yes, my dd has had 3 HD IVIG's and each time the first week (or 2) after is rough...then things slowly start to get better. Have you tried quecetin for the itching? When did the itching start? Could the itching be related to some kind of a food allergy?

Oh Peg, I'm so sorry to hear about the problems with your husband. Obviously autism and PANDAS are not easy on a marriage! Allie certainly is lucky to have a smart insightful mom like you....cyber hugs! Things will get better and we are here if you need more venting!

yeah...me too

here's paper where NAC is mentioned. http://www.primarypsychiatry.com/aspx/articledetail.aspx?articleid=645 (click on "download PDF" to read it easier) They mention other glutamate modulators, there is a chart on page 73. On the bottom of page 72 there is a graph with riluzole (another glutamate modulator) and it looks like it took about 8 weeks for the full effect. So, I would assume the same might be true of NAC, it might take 6-8 weeks to "kick in" fully.

I guess one has to weigh the pros and cons (possible rxn to flu shot, vs probability of actually getting the flu, which could trigger more problems.) One thing you might consider is getting flu shots for all non pandas family members. That way you at least decrease the chance of a family member getting the flu and then spreading it to an unvaccinated pandas kid. That said, I didn't follow the above advice. I got the flu last year(ugh). Fortunately nobody else in my family got sick. I was wiped out for awhile and it was a pain. I guess I lucked out, in that my kids (esp pandas dd) didn't get it.

Being tired a lot makes me think Lyme. I know Lyme can also cause gastroperesis, not sure about other tummy problems. But, I think gi problems can also be pandas. What dose of Pepcid are you using? Is she much more anxious now vs on the augmentin?

yeah...good question Where do you live?