T_Mom

Our younger d has been on Augmentin (500 mg twice a day) for about two months now--some improvement but not consistent. I am wondering if anyone knows whether or not the Augmentin XR 1000 mg (Sammy used the XR--"extended release" tabs) are truly different from the "regular" Augmentin. There is a difference in the Clavulanic (sp?) amount in these tablets. Does anyone know if this balance might affect the efficacy of the Augmentin dosage?

Augmentin has been noted as affecting some children with PANDAS when given in a "high-enough" dose-- I would like to know if anyone has used "high-dose" treatments successfully of other antibiotics? How much? Thanks-- TMom

All the best on the surgery--You may be able to tell once the time arrives...perhaps a phone call would be enough, you'll know-- Best to you --

So glad you posted that note from Dr K. Of course it goes without saying there is difficulty in that most of us may never have an accurate handle on just what/when the first "episode" was; or what behaviors constituted the first exacerbation. Regardless, antibiotics given when exacerbations show up has been key in our case. We did this about four times in response to BEHAVIORS which included OCD and mild tics, accompanying "illness" issues (sinus, temps., colds.) Finally just put our older d on full strength and left her on it--and gradually, over time she cleared. If you want to read the personal history of various people (which has been very helpful to us) you can click on their name, and then go to the small options box on the left (located under their name)-- pull down the window and select to view ALL of their posts--) They should all show up. I think back to times when the girls were young and showing "OCD" episodes which I dismissed as stages of normal development, so we are not certain just when the original episode was--

I am sure EAMom will pick up on your question CharlotteMom--I want to add that I do think your dear d will get better--but echo the fact that it will most likely take time, perhaps much time. Remain hopeful. The 'scary' behaviors of book tearing, raging, etc. are not uncommon. Our d tore up numerous books and magazines at her worst. Your description of the "making you" cooperate as she touches things etc. is something many of us can totally understand. The scary "I will kill you--or myself" type of interactions are very disturbing. You have taken steps to try to help, that is all you can do and keep doing. Is she on vitamin D and probiotics, Omegas for brain healing--I really thought these were helpful last year. Our d is on a full strength antibiotics right now (almost a full year)-- that has been so helpful for our child. Hopefully the IVIG will jump start the process for your d adding a reset to the ongoing full strength antibiotics. All the best of healing in the New Year--

Dear Dschneider--I am so sorry you have had to find this forum, but hopefully the experience of others will be of help-- You obviously have read and have a handle on the abx possibilities. www.pandasnetwork.org is a wealth of info. in case you have not seen it-- Where do you live? Are you able to see a doctor that will prescribe abx for an ongoing trial? If the effects of abx have been positive I think it is vitally important to document, document, document as clearly as possible to help you determine the course of action. Beth Mahoney documented within every few hours of the day at one point--if you can do that and see if there is a trend it may help your decisions as to how to treat-- Dr. K (on his website www.webpediatrics.com) noted that if caught early enough his belief is that abx may be sufficient. All the best as you chart the course through this time--

Hi Smartyjones-- I would say that after her worst exacerbation she then had three moderate "episodes" all illness triggered, within 6 months...Once we started full strength antibiotics she showed improvements for about 3 months until her "progress" noticeably plateaued and we then tried a steroid burst. Steroid use was really key and brought a huge essentially immediate improvement. However, there were minor issues every now and then, maybe 3 compulsions a day at times that she'd tell me about (had to spin around three times, that type of thing.) There were little ups and downs -- though fewer each month. It took about 10 months until the compulsions essentially stopped completely. Holding steady. I am pasting a previous post of answers to your questions about our history from another thread, which I am not sure you ever saw--just in case you didn't --All the best, TMom Hi Smartyjones-- Forgive the length of this, but you have such good questions. I have bolded my replies below--All the best, TMom

Hi Tattoomom, I hope this helps-- Our d had sudden onset OCD. I still believe that is key to this diagnosis (though may be difficult to decipher over time.) Tics may also accompany the illness. But the onset is sudden and unexplained. She had an obvious reaction to anti-inflammatory agents (ie, steroid bursts, antibiotics.) Time and time again...when OCD and mild tics would go away with full-strength antibiotics and/or steroid burst. These did not always "go away" suddenly (though it did improve dramatically a couple of times with Amoxicillan!), but typically gradually, but nevertheless it was an obvious saw-tooth, up and down trend in the right direction! If your child had an "explosion" of ticcing after going off the Amoxicillan (?is that correct) that is essentially what happened to our d once too...Her OCD and mild face-stretching tics exploded after 10 days of Amoxicillan, we had dropped it to half strength on day 11 and her symptoms escalated. When we put her back on full-strength Amox. she got better once more. She continues on it now for a year+ In our case, it was only through observing the symptom/treatment effects of antibiotics and steroids (through about 4 exacerbations, two of which were very severe) that we determined Ps. I can't help but wonder what would happen if you could request a month long full strength treatment of antibiotics? Would that be an option you would consider trying? ps--Our d never had a "positive" strep or high blood antibodies "caught" upon testing--Our understanding is that timing is essential and you may not get positive test results. We can attest to "crazy-level" OCD and ticcing abating with antibiotics and steroids:) -- thankfully, we decided it was relatively benign to try--

Hi All-- I can't help but add that there is a long-term perspective that is essential here--It takes time to heal. Our daughter had ups and downs through out the year long process of full-strength antibiotics...and two steroid bursts along the way. A year later and she is essentially 100%, but it was one looonnnggg year. I think it was really important for us to hear, and hear again, that a month of antibiotics was a "trial" essentially and not to "prevent" but to treat. There is some type of anti-inflammatory effect, which with some "Ps" kids makes OCD and tics go away-- We found it very important to set the sail and then keep steady to give it TIME to have an effect. Best to All--

Our daughter is fine now--and was as well before Pandas. When our daughter (10 years old at the time) had her "Pandas-triggered" (ie, it came on when she had an illness/cold/sinusitis) OCD and mild ticcing alleviated by antibiotics (Amoxicillan) Dr. Perlmutter indicated to us that Amoxicillan had been found to have anti-inflammatory effects. We believe that it is most likely the anti-inflammatory effects -- and clearing of any residual 'illness' issues -- that makes antibiotics effective. She is 100% and on full-strength Amoxicillan for the past year-- A relatively benign 'fix' considering...

Vickie, your post really hits home...I keep thinking back to last Christmas when our dd (then 11) was in an exacerbation due to an illness which triggered a Ps episode. She was not speaking ( for 10 days--) because the OCD told her not to--She was step-stepping, entirely unfocused, and this was all while family was here--we did not know what to do. I will always remember her being handed presents and that she would only scratch at them, she would not open them. Thankfully antibiotics kicked in and she began to heal again--It took many months, full strength antibiotics and two steroid bursts, but she did come back. I am looking forward to Christmas this year--

Peglem, I am so glad you have found a doctor who is willing to work with you-- that is wonderful. All the best--

Yes, last year our d had unusual "sexualized" dance movements that were surprising to us (in the worst of it she one day started break-dancing in suggestive manner???) 10 years old and we had never seen her do anything like that--it was very strange. We saw glimpses of this when she was really sick with Ps...I put it down to some type of Basal Ganglia inflammation triggered issue--but who know! Others had shared with me that their kids had similar experiences-- The saying of "I am going to kill you" "kill myself" etc. was also something that has been present when in exacerbations--Opening of the car doors when moving, etc. This from two sweet little girls who would normally never say anything remotely close to this-- I chalk it up to the illness.

Yes, bouncing off of walls/hyper-active issues, and even increased OCD issues (explaining, explaining, explaining) is what we have seen with our youngest first reactions to steroid burst. We are now in the taper stage with her and hoping, beyond hope, that it is resolving. She is better this week. We had to decide if it was worth "trying" to see if "after" there was improvement--we decided that it was worth trying. Her Cam Kinase was 181.

BronxMom--Yey! A little levity among Pandas parents this morning to read-- I so appreciate that! Thanks!!!

Hi Tattoomom, I can tell you that our d had an eruption of OCD and mild ticcing when she went off of Amoxicillan and to half strength last year. We reintroduced FULL strength Amoxicillan and the symptoms went away--If you have had tics subside with antibiotics in the past it may be that they have a positive effect, but need to be at a certain level. Hope all is well-- TMom

I just went back and reread your original post and can't help but wonder if you have tried the Dr K steroid burst protocol to "test" for possible Pandas--If there is reason to suspect it is Ps then you may want to explore that-- though I believe some parents have seen Ts get worse with steroids (in case that is a concern.) www.webpediatrics.com He is very kind and does phone consults as well--He was very helpful to us. Augmentin may work for some, but for us Amoxicillan has been the one to work, and steroids. I realize you are in the "trying to figure it out" stage still--hang in there--and don't let the school ruin your d's year. This illness is debilitating enough without the constant hit to self-esteem. Best to you-- TMom

What great insights you have gotten here! My d went through a similar time last year academically, essentially 3 quarters of the year. We took a doctor's note and a cognitive behavior therapist in with us to meet with the Principal, and teacher, numerous times. Essentially, given that her writing was affected by the OCD issues they finally decided to not grade her writing at all--(because it was health related problem.) I explained it as being a written language processing issue due to brain inflammation, and tried to share the Pandas construct with them (show them the Saving Sammy Today Show clip.) If the school would not grade the writing performance it would take alot of pressure off of your dd. We also worked out with the teacher that she would "do" an hour of homework, and that was it. Some nights alot got done within that hour and some hardly any at all, depending on how she was doing. Sleep and rest were ESSENTIAL to her brain healing last year--We could definitely tell if she did not get enough sleep--and homework (when ill) is not a priority. We found it essential to encourage, support, and assure her that what she was experiencing was temporary, and that we would see her through it--and it was going to go away. My d was in 5th grade at the time and had been assessed as t and g.

One more thought-- If you don't see a change with the antibiotics within a few weeks, given the positive strep test you may want to consider a trial steroid burst via Dr. K's protocol (he does phone consults.) www.webpediatrics.com He essentially uses steroids to almost "test" for Pandas (inflammation.) If your son's behaviors are truly "odd" and getting worse this may be helpful.

Wow--I have to echo the group here, what an amazing situation you have there! Two doctors, one certainly willing to treat with antibiotics, a positive strep test, these are good (you know what I mean...) If it were my child I would do what finally helped us--ask for a month of antibiotics, to see if there is an effect. Quite a few of us have had MRI's --and it is a safety issue just to rule out anything else, I was scared too. I would say try not to worry yet-- The fact that you found positive strep today may well be the key. All the best, may it subside very soon-- (an incident of biting is not too far "out there", you have caught this early hopefully:)

Hi Faith, Yes, at the very beginning she was put on a very low level zoloft and then switched to a very low Prozac, and yes, right through the exacerbations it has been held steady. It has been a constant. We only wanted to change "one thing" at a time, and chose to add antibiotics and then steroids. Her "illness-triggered" Pandas symptoms (OCD and mild tics) subsided with the antibiotic treatment! Coupled with 2 steroid treatments, all is well. It is worth a try. (The 'regression' issues during the really bad exacerbation were connected to severe OCD--she was not on the SSRI at the time.)

Faith--We never had evidence of high titers either. Hi Smartyjones-- Forgive the length of this, but you have such good questions. I have bolded my replies below--All the best, TMom

This is a great suggestion. Unfortunately, I tried this and they didn't even respond. Given the conversation I had with the principal this past week, if she did look at it, it didn't make any difference. She told me she feels manipulated, and bottom line, if my son isn't in school, he won't pass 3rd grade. That said, I still think it's a good idea to try for those who are having difficulties with your school/teachers. That is horrible--I am so sorry. Don't let this dissuade you from continuing on though-- We had all types of meetings at the school last year--including taking the CBT therapist who we paid to come and talk, email, and counsel the teachers/Principal. It was pretty unbelieveable. I am sorry --

When our d was in her initial severe exacerbation of OCD and ticcing --we stumbled upon Dr. K's website and in a phone consult with him decided to try his suggestion of a steroid burst, in essence to see if this OCD was a result of inflammation. Nothing is fool-proof of course, but in our case the steroid burst was a great help in making the path-ahead a little clearer-- ps-- some SSRIs may have anti-inflammatory properties, you may want to check into that as well. Our d is on a very low dose prozac (we have not wanted to change a thing this year), though the changes we have seen in her have been obviously tied to the antibiotics and steroid bursts.

You have gotten some great advice here-- I agree that if your d has had a good reaction to Amoxicillan then it should be tried again--full strength, longer term. I say that because it worked for us. When our dd had "crazy, incapacitating" OCD/ticcing show up, and it went away with full strength Amox....I only wish I had figured it out sooner! In our case full strength amoxicillan for about a year now (12 years old now) -- and two steroid treatments, essentially via Dr. K's protocol (www.webpediatrics.com) ( -- and he does phone consults) We are thankful for very good results. www.pandasnetwork.net (or .org?) Good resource for info. as well--All the best, T.Mom