T_Mom

Hey Peglem, we all stand together-- I often think that THIS forum has been the best "therapy" and support for me (and free!)-- and from it I glean insights that have been encouraging and remarkable. This "use of abx" thing is something we truly stumbled upon...I mean, who would think an antibiotic would affect OCD and ticcing?...only a Ps parent I guess, thankful it has-- TMom

T.Mom, I don't recall if I've asked this before, but when you had to do the full strengh for more than a month, was this during active strep infection, or just doing antibiotics randomly. I mean, does an 'exacerbation' mean that there was an illness at that time, or you were just going by the symptoms? Thanks Faith Hi Faith-- The "3 exacerbations" that I was referring to were OCD and tics that came on with either cold illnesses or sinustis. She got sick 3 times (high temperatures, congestion) and the OCD/ticcing came back each time that fall season--It was a nightmare. Each time antibiotics (full strength Amoxicillan) had an obvious very positive affect on the OCD/ticcing. This, IMO, is the Ps "construct." That after an initial strep infection it is possible that other illnesses may trigger the same brain inflammation (Swedo made reference to this) -- and it is the inflammation that must be quelled. The time we finally decided to TRY antibiotics for a month, our d had a very bad cold (102 temp) and had been on 10 days of abx...once she came off of those 10 days, the doctor suggested going to prophylactic dose. * However, when we dropped to half-strength, at that point her OCD/ticcing came back full-force and much worst! We upped the abx to full strength again and within 4 days she was able to go back to school (she had been entirely incapacitated by OCD.) I obviously really believe the antibiotics are key in successful treatment of Pandas. For us it was certainly a relatively benign risk to take and well worth it--No bad reactions thankfully.

We had the same reaction (early in the illness) for our d during three exacerbations--Literally a turn around within 48 hours. An original Ps researcher confirmed that it was possible -- as our d was on Amoxicillan and she confirmed that Amox. had anti-inflammatory effects. This only happened the first 3 exacerbations though-- After that it took a month of full strength antibiotics, and continuing them to see ongoing improvement. It took time to heal.

We sent the link to the original Today Show clip with Beth Mahoney on Pandas -- to the Principal, teachers (from last year and this year), and special educator that worked with our d last year-- WOW! It made a huge difference in their attitudes after they saw it--

Given a day of contemplating this issue--this morning I am going to edit my original critical post re: the antibiotics study at USF... I am thankful they are trying to ensure there IS research on the effects of antibiotics. For that I am extremely thankful-- (I guess it was a knee-jerk reaction to seemingly "withholding antibiotics" rather then "testing" antibiotics, and stems from our parental experience of having difficulty getting them when our d had crippling OCD) Dr. Murphy is certainly someone who has been very knowledgeable of Pandas issues for sometime and apparently helpful to many families. We almost drove to FLA to see her when things were so bad--before we literally stumbled upon the effects of antibiotics and steroids (thanks Dr K.) A research study that might "prove" antibiotics help with OCD and tics??? Yes!

MomMD I am so sorry -- He is fortunate to have you and Dr L on his side. Take care--

Dear Ellie, this seems to be the top question of the illness: "What to do next?" In our experience we did things along the way to try to bring her back...if she was progressing on a weekly (not daily) basis in healing then we held steady. When things seemed to plateau for a month or so then we tried something, changed something to see. You are doing that--This does take time. Dr. L is a great resource--when you go back to see her let us know what she advises. It would seem that her improvement on steroids is encouraging and had an obvious effect on the OCD at first-- If it was me, with a 17 year old d, I would be asking about the Augmentin and the "Saving Sammy dose" for awhile, to see what Dr L thought--

Courtney--maybe you can ask your doctor next time what he would think if those "50% that had strep" also started having OCD issues (which your son may be having if he feels a compulsion to not answer any questions!)...and along with the OCD some had tics...and all of this stuff left with antibiotics in many of the kids...What would he think then?! I would agree to the EEG and any other tests he suggests, just to be sure, and then document as much as possible the frequency of symptoms to take back in to him--(or find another doctor.)

I am more positive this evening then when I first read about the study--sorry to offend anyone. Truly, what we need is for someone to make their research focus a good retrospective study--of Pandas case histories, including bloodwork reports, symptoms and appointment documentation. That would tell the tale that time after time, apparently, inflammation triggered OCD and tics (Pandas kids) have had positive results with antibiotics, IVIG, and PEX I believe that a "diagnosis" of Pandas can really only be made after episodes of symptoms and subsequent responses to treatments. Because there is little else to base an accurate diagnosis on (IMO) the results of any Ps study may potentially be confounded by definition.

(edited post) Given what we "know" now, our family could not "go back" to that non-antibiotic state. I wonder about a double-blind study that involves "withholding" antibiotics for children who have been identified as having Pandas. Albeit, if this study helps to establish an FDA approved protocol for kids that do have raging OCD/and/or ticcing which can be eradicated with antibiotics and/or steroids/IVIG/PEX--more power to them!

Hey-- Maybe we should be trying to get a contingent of Pandas kids/parents on Dr. Phil! Now that would have national reach!! However, if he tried his favorite line on one of the kids, "And how is that working for YOU?" I 'd be a little afraid of what the answer could be! (sorry--)

Hi DCMom:) We have used it a few times when "rages" were prevalent and it seemed to have a calming effect, but only for about the time period specified on the side of the bottle--not cumulative from what I can tell. Best-- TMom

MsOregon--Welcome and I am sorry you have had to find the forum, but may it be a help-- Our d was treated for sudden onset anorexia for 3 months, and then it left -- HORRIBLE time. Scary and I will do anything in our power to never go back there again-- One week in November she came home weeping and wailing about being fat, counted calories obsessively, bounced her legs, ran around obsessively to burn calories, lost 10 pounds in two weeks, insisted on pounding out an hour + on the treadmill or would dissolve in tears and rages... this was winter of 2007. (Team of AN doctors, Maudsley method via Children's hospital we instituted, etc.etc.etc.) Most frightening thing I have ever encountered bar none-- We wondered if it was Pandas at the time, but we were not sure. Our d was essentially "OK" for awhile -- (though healing, as evidenced in schoolwork, slow recovery...) but "OK" with no AN, and not medicated for about 4 months. Then the following summer she had what Dr Rapoport called an OCD storm. A steroid burst (via Dr. K.'s protocol, www.webpediatrics.com) and ten days of full strength antibiotics (since she had sinusitis on an MRI show up!) and after a few weeks, on 8/26/08 she literally "walked" out of it, came downstairs walking and talking on her own--(she had been holding painful positions, eyes closed, spit in her mouth, bathroom accidents, and not speaking (at all) due to OCD for 3+ weeks.) We had seen doctors from Hopkins, NIH, Children's, etc...to no avail. UNTIL we found a compassionate local neurologist who did the steroid burst, even as he said to us, "This is off-label, but..." She was again not medicated for about 4 months after this, but just as Dr K had predicted, it hit again OCD and tics 4 months later. We treated her again with antibiotics and she made a slow recovery and has been on full strength Amoxicillan for about a year now. You have obviously done a good job of getting her help NOW, and hopefully, she will not have anymore exacerbations--perhaps the antibiotics have done it for now. I will mention, that EAMom suggested we try a month of full-strength antibiotics and that was critical for our d's healing--We believe the continual use of antibiotics has been essential for our d. Knowing what we know now I would have tried steroids and antibiotics sooner-- to hit it with every possible remedy, thankfully we know now--

Thank you Lauren and Lauren's Mom for all your efforts here-- I know I am not alone when I say that I hope it is resolved for you soon. Great Job Dr. Trifiletti--again, thank you.

Great clip Dr. Trifiletti -- Thank you for being willing to represent Pandas on national t.v. As far as our family, I figure that "all we know is what we know"...in our case that is our family experience with our D. Certainly our experience represents that there ARE children with "Ps" (whatever that may end up meaning) who are treatable, for you Dr T. and all the other doctors willing to go outside the box in order to "do no harm" Thank you again--

Dakri-- I am sorry you have had to find your way to this forum but glad you did, and hope it will benefit you as it has our family. Our d had very bad OCD and accompanying mild ticcing--facial stretches, etc. She never tested positively for strep of any type--We believe this is because she may have had it previously, undetected at some point in time, and subsequently every illness that triggers inflammation triggers Pandas reaction inflammation. At her worst exacerbation an MRI showed she had sinusitis -- and we treated it with antibiotics, she also had a short 5 day strong steroid burst according to Dr. K's protocol (www.webpediatrics.com) He will consult on the phone, well worth it in our case certainly--Very helpful. Anyway, if I were you I would essentially beg the doctor to TRY antibiotics for a month. In our case it made our child essentially 95% well again-- IF it works, you will know, no doubt. All the best--

OK, here is a question for those in the recent throws of Pandas illness-- Would you be willing to go "public" with your story? I am not opening this up for "discussion" on the board but rather would encourage anyone who is willing and able to pm me. I have heard of a person with t.v. connections that is interested -- symptom videos would be a benefit. You would need to be willing to be publicly "out there" for the good of the cause-- PM if you know of anyone that might be interested. I am not sure I am willing to go this route ourselves, personally at this time-- The thought also occurs to me that wherever we are, if people are willing to go public then calls to local t.v. and public radio stations would be timely--to see if they would tell the story given the public focus right now on this illness.

I say, "Let's ALL get the word out!" ... I only wish these courageous "gone-public" families had been "out there" three years earlier... Folks, we are a very small subset of the Pandas "community" and privledged to be in touch via this forum -- I agree whole heartedly with Worried Dad-- in that our d would have been institutionalized by now if not for the productive advice and collective experience on this forum. We all have a responsibility to share the experience and help others--don't you think? Best to all--

What a blessing to hear this Brooke-- YEY!! Cheering for your son-- TMom

Great thread--just too bad we can all relate to it from our child's experience! I would add: It is often "normal" behavior carried to an extreme. Obsessive confessing (in stated or written form) often for no apparent reason, and Explaining...explaining, and explaining. Last two days our youngest, " I didn't mean it like that, what I meant was...and do you understand? do you understand, no, no, no, you don't understand MAMA!...I didn't mean it like that, Papa do you see? I meant it like THAT...PAPA, I want you to understand, but Mama, did you hear me, I wanted to do it like that, not THAT--" All punctuated by the periodic scream--this may appear to be normal of course in young children, but to this constant extreme it is perseveration on ideas and/or actions...(and driving us nuts too! All of the OCD behaviors may often be considered "normal" (except for that opening the doors with her feet thing our d sometimes did:) but it is the severity and frequency that sets it apart... I'd stay away from "quantifying" any examples, ie., don't set a number for what is "too much" (20+) but rather refer to the intensity and frequency of the behavior as being extreme for that individual child. The only reason I say that is when our d had anorexia (Ps induced at age 9) we were told more than once that since she did not have the "fear of choking" that is referenced on Ps websites than it was not Ps type anorexia --It took us off track for a while, until the Ps *&%$ broke loose--We have to be careful to leave the OCD/tic symptom door wide open in a sense and to look at symptom history and reaction to treatment, I think

Buster-- GREAT idea -- I have two considerations--for this post: Q: My child doesn't seem any better after 10 days of amoxicillin. Does this mean he doesn't have pandas? A: No. Many children actually need a stronger antibiotic than the standard treatment of amoxicillin. Typically either augmentin or azithromycin are used. Yes, "stronger" is an emphasis, but it should be noted that as your own dear EAMom advised me-- also LONGER treatment. It may take a month. A month of Amoxicillan, or more helped us. One of the original Ps research told us Amoxicillan had anti-inflammatory effects Q: Saving Sammy said they used high dose Augmentin/XR. Why is that thought to work? A: This isn't exactly known. At very high dosage, Augmentin is bacteriacidal (meaning it actually does kill strep). One theory is that there is a strep infection hidden (perhaps inside cells) and if a cell bursts and releases strep, the augmentin can actually stop the GABHS. There is some good anecdotal evidence for this, but this has not been clinically studied. Yes, but what we still don't know, as so many have noted, is if the effects of the antibiotics are actually some type of anti-inflammatory effect essentially-- All the best, thanks for doing this--

Michael, I am 38 and have never been diagnosed with TS but i do have vocal AND motor tics. I've just always assumed it was TS but was too embarassed to see anyone. So fast forward to a couple years ago when my dd (then 4) started with a blinking tic. Finally i was forced to talk about my own condition to try to get her help. anyway, we both had Dr CUnningham run our numbers and this is what we came up with. MINE: Anti-Lysoganglioside 2 hours patient 640 positive control >1280 negative control 160 normal range 80-320 normal mean 147 Anti-Tubulin 2 hours patient 2000 positive control 16000 negative control 250 normal range 250-1000 normal mean 609 Anti-Dopamine 1 2 hours patient 2000 positive control 8000 negative control 1000 normal range 500-2000 normal mean 1056 Anti-Dopamine 2 2 hours patient 4000 positive control 16000 negative control 2000 normal range 2000-16000 normal mean 6000 CAMK 100 MY DD Anti-Lysoganglioside 2 hours patient 80 positive control >1280 negative control 160 normal range 80-320 normal mean 147 Anti-Tubulin 2 hours patient 2000 positive control 16000 negative control 250 normal range 250-1000 normal mean 609 Anti-Dopamine 1 2 hours patient 1000 positive control 8000 negative control 1000 normal range 500-2000 normal mean 1056 Anti-Dopamine 2 2 hours patient 4000 positive control 16000 negative control 2000 normal range 2000-16000 normal mean 6000 CAMK 175 I don't understand what the antineuronal antibody titers really measure. Do we know yet? Are they significant at all? I've gotta run, but i thought i'd post these quickly so you could "compare" with another adult. PowerofPrayer--Thanks for posting this. May I ask, what were your dd's symptoms at the time of the blood draw? Thanks again.

Peglem-- That is fantastic news--and well deserved. I am so glad this has worked out.

Wow--Thank you for posting here Leslee-- Yey for Dr K and for you -- a determined and persistent Mom!