T_Mom

We have only ever used the pill form of prednisone-- if steroids were successful once for your child, I would be certain to compare the dosage from the first to the second time-- I believe that Dr. K had told us it could take up to three weeks to see an effect ("sudden and obvious"--if Ps) -- but that may be my faulty memory, you would have to ask him directly to be sure. Hope things turn around very soon--

I am so interested in this post - thanks so much for writing it. We have that same challenge for Meg - she is at 95-98% - but on a bad day, still has 4-5 compulsions - on a good day, maybe only 1. She is so good, that we are not ready to think about IVIG or PEX - we are completely open to doing this (likely IVIG for OCD) in the future, but where she is now, this seems too much. But I am very open to increasing anti-biotics or prednisone in the meantime. I meet with our Neuro this week (before he moves to Nebraska ) and Dr Latimer next week - and will discuss options with both of them. Meg also did extremely well on the Prednisone during the 5 day test. Thanks again! Meg's Mom-- You are more than welcome. So much of this I feel has been grace along the way --with excellent guidance from a few insightful doctors. You will have a great help in Dr. Latimer-- keep us posted, I am following your experiences--

Wow - T mom - so interesting! She got to 90% by abx, correct? How long did you see her at that plateau? Do you think it was a reduction in brain inflammation from the steroids that saw the futher improvement? Do you think she would have gotten there eventually but steriods sped it up? - maybe that's too hard to know? Thanks! Kathy hi Kathy-- Yes, we believe the antibiotics brought her to 90% herself--absolutely. She plateaued about a month or so. After 3 months of full strength antibiotics we tried a steroid burst to see if it would bring her to 100%. This was the second time we had tried steroids. Both times they have had a sudden and obvious effect on her. (Just like Dr K had told us they would if it was Pandas--He told us that the first time and he was so right.) We did the steroids when she plateaued on antibiotics because the first time we had used them she reacted very well. We decided it was worth the try. Glad we did.

Hi All-- I want to add again a smile and thankful sigh -- what wonderful news to hear!!! I want to add that a steroid burst (see webpediatrics.com or a neuro. doc.) really helped our daughter when she "plateaued" on antibiotics. When our daughter "recovered" with full strength long-term antibiotics (amoxicillan in our case, at the time) after about 3 months she did come to a point of plateau in her recovery where she essentially "rested" at about 90% herself. She was SO much better than she had been that after 3 months of improvement (we could see improvement week to week) that it was tempting to "leave" her at 90%. (Her earlier exacerbation symptoms included severe OCD circling things, OCD step-stepping, arranging things, not speaking compulsively--10 days over last Christmas, and general non-functioning, mild facial tics infrequently.) ANYWAY-- after 3 months of antibiotics, when she plateaued at about 90% herself-- Then we tried a steroid burst and she came back 110%. NO OCD, no tics, calls from the teacher that she was seeing a "different child" than she had seen all year-- She continues on full strength amox. and though we saw whispers of 2 to 4 compulsion incidents a day during the summer from time to time, right now...after 10 months of full strength antibiotics and a steroid burst along the way, she now thankfully reports NO OCD, seemingly doing very well. All the best--

Judy-- Your post brought tears to my eyes -- All the very best to you there-- YYYEEEEYYYY!!!!!!!! May it all continue--

I am joining in the venting here:) Pixie--WONDERFUL news that the treatments have had a good effect! Thinking back to your terrifying posts when in crisis this new response is wonderful to hear! IN the end it, I think, it only matters that our children progress, get well, and are OK again-- Given that, I have to agree that I'd be throwing antibiotics at my child:) (or whatever else is necessary) if I saw the least bit of a slip-back--to try to get a handle on whether or not those antibiotics can provide additional help. The effects of antibiotics are becoming clearly a cutting edge response to PANDAS (Sammy, our d, and others--full strength abx has driven away tics and OCD, how amazing is that!!!) I wholeheartedly agree, and have thought the same thing that EAMom expressed when she said: I can't help but wonder if Swedo/Dr. K. were more aggressive with the antibiotics (including post-IVIG) if their sucess rate ("much" or "very much" improved) would go up from 80% to 90-100%. I have thought the same thing-- In fact, last year we had no idea that FULL strength antibiotics would be of use, as the "studies" have been prophylactic use--(and Beth Maloney's book was not yet out--) We literally stumbled on the fact that full antibiotics made a difference through use--and then the brilliant suggestion by EAMom and Diana to try a month of full strength--thank you ladies!

Last night -- watched a film documentary on autism where they made the point that obsessions and compulsions are of course a key aspect of the autism diagnosis...I sat there and was struck by the obvious similarities, the possible connections between OCD/PANDAS? and this thing we call autism. A couple of weeks ago I heard the Head of NIH make a statement (at a Health Reform hearing broadcast on C-Span...) that NIH research was leading to the conclusion that "autism is a synaptic disorder"... I shudder to think of the connections.

Melanie, the best advice I ever got was to try a month long of full strength antibiotics for our d. In our case we did use Amoxicillan as it was all we could get from anyone at the time--We saw good results, but it took time. Others have found Amox. did not help but stronger antibiotics did--You have read the Saving Sammy book? Worth watching the video clip referenced in past posts as well certainly-- Take care--

Absolutely this is what I would do as a test if it was our family--we decided a month of antibiotics was relatively benign to see if our d's mild facial tics and OCD would be affected and thankfully it was! (Thank you EAMom!! again--) We continue on FULL strength now for 10 months and she is doing very well, but recovery took months. We could see very obvious progress though week to week, and after 3 months of antibiotics did a steroid burst which brought her back 110% I do think that OCD can "set in"...my own experience as a child with multiple strep infections etc. I believe more and more that the end result of untreated strep for these kids is lasting and possibly permanent -- Our d took months to recover from the last exacerbation--and I mean recover her academic skills, her kind personality, and her smile. She was gone for months. I believe it is a serious illness with potential long range implications. If your d is ticcing and has a high Cam Kinase II -- if it was me I'd be seeking treatment asap to test it out --

Have you been on full strength antibiotics? Steroid burst? These are the tools that WORKED for our d's severe and crippling OCD...that was Pandas related. We also tried, and remain on low level prozac, but it seems inconsequential to us--just have been reticent to change a thing. Early on we had very bad reactions to psych drugs for OCD (from Hopkins--well meaning intern over prescribed and our d was up until 3 am crying and holding painful OCD positions--a complete nightmare disaster.)

Hey Peglem, let's send this doctor a gift certificate to something--somewhere--Bless him! TMom

I am so sorry this is happening--I know the desperation --hang in there. If you saw a positive change with the Augmentin in the past 12 days hold onto that as a good sign and hopefully this may be a "stage" in the process of the illness leaving-- It is definitely up and down. Diana is a wonderful resource. I assume he is on full strength Augmentin right? (If not, I would call the dr. prescribing and get full strength--to try.) (Once things settle down--The Pearls probiotic has not caused problems with our d.)

Thank you very much for the responses-- As the article ('Antibody-mediated neuronal cell signaling in behavior and movement disorders' , 2006 by Kirvan, et.al) states: "PANDAS sera were found to induce significantly higher levels of CaM kinase II activation than sera from non- PANDAS ... In fact, PANDAS patients diagnosed with isolated tics produced the highest level of CaM kinase II activity similar to chorea. " This study seems to indicate, to my non-medical understanding, that there is resulting Cam Kinase II activation via the sera from "Pandas" children --but it does not state that Cam Kinase II is solely activated by strep--right? I think this brings up the question: Can other things either cause or contribute to Cam Kinase II activation? Such as an illness--inflammation, etc. I think I am in agreement with Peglem, in that CamKinase II activation occurs with strep but the verdict is still out as to what else may cause it? --Anyone know anything different? SFMom--thanks for your comments--can you share the article that you have referenced or the location of the article? re: Swedo's comments? I have not run across that one (I think:) Best, TMom

Thanks SF Mom--but where did we get this impression from I am wondering? I am not sure I have seen this stated anywhere in the research by Dr. Cunningham. Thanks for the input.

Any insights? Ok, I am still trying to figure out just exactly what Cam Kinase II indicates-- "Activation" of neural impulses--correct? Is that what we know right now? Do we know if it is specifically "strep" related "activation" or could it also be caused by some other type of activation of neural impulses? Does anyone know if it can be activated by issues other than "strep"? Our second d came back with high Cam Kinase II ... and this is bothering me to no end. Thanks for any insights here--I'd appreciate any information that you think may be helpful--

I agree!!! Wonderful to hear this great news--Thankful for you all. TMom

L Haven-- I am so sorry that you are going through this-- Where do you live? Can you consult with one of the doctors listed on this forum who have helped and had some experience with antibiotics? May not be a cure, but we have found it relatively benign treatment and has helped us tremendously. Why do you think the doctor is suggesting inpatient psych treatment? Is it the depression? A psych. recommended the same for my child but it was because her OCD was so crippling and severely affecting her entire functioning-- until after steroids and antibiotics there was a real change.

Hi Erica, After a horrendous experience with severe PANDAS in summer '08, our d cleared after a steroid burst and while on Amoxicillan. Then, last fall our daughter had two colds which brought out OCD and ticcing--having had good experiences with Amoxicillan we started her on treatment dosage and the first time it was within 48 hours that we could see a pronounced decrease in her symptoms, the second time it was within 24 hours. The doctor at the time said it was the Amoxicillan. Then last winter, she got a very bad cold (104 temp.) and we started on Amoxicillan. To make a long story short, she continues on full strength. Week to week we saw improvements.

Pixie, There is hope beyond this difficult period of time. I am sorry I do not remember, but is your child specifically PANDAS or are there other diagnoses? If PANDAS, I don't mean to be simplistic-- but MANY of us have seen dramatic CHANGES in behaviors with antibiotics--however, like Sammy's story, our daughter only reacted positively to FULL strength antibiotics. I know I have said this before, but when faced with difficult life-changing behaviors -- as you have described -- we chose to try what we consider a relatively benign possible help: Full strength antibiotics for an extended period of time. I figured it was worth a try. For us it was. Is there a doctor that would be willing to try this if you wanted to--what do you think of this? Best to you -- hang in there, praying for you.

YEY SFMOM!!! This is good news indeed-- TMom

** Let me clarify. Not Paul Grant...but SHULMAN who needs to hear our stories!!!

Hi Lena, what are the "new" recommended Ps medications and who has recommended them? Thanks-- TMom

In our case we find that full strength antibiotics daily is holding her steady--there is NO doubt in our d that antibiotics as a treatment has been KEY. As EAMom has pointed out before--it may be an anti-inflammatory and/or immunomodulatory effect and that may be the key here-- With our daughter, she was on a prophylactic dose when all her symptoms ramped sky-high last December. We upped it to full strength January 3rd and has worked ever since and she is still on it. Seeing Sammy I am reticent to change a thing-- Our daughter takes 500mg of Amoxicillan 2 times a day so a total of 1000mg-- Weighs 95 pounds. To us this was a very benign thing to try--compared to what she was going through--

Was it "only" 3 days of Zithro? ...or is that a bump-up within a month or more of antibiotic full strength treatment??? We are seeing good holding with full strength antibiotics long term.

Yes, the irrationality seems to be part of the whole picture when the brain is inflamed--Reading parent reports here, it seems that all of us who have gone through "severe" PANDAS, or perhaps even moderate PANDAS, have most likely feared for their child's safety--and felt a potential threat of some type at one time at least to self or others--it is that crazy. It needs to be taken seriously. Self injurious behaviors are not normal. PANDAS is a sickness. A real physical illness that needs treatment. There have been kids that have gotten better--It takes time. Antibiotics full strength for at least one month has worked for us and others-- and whatever else it takes after that. I know what it is like to hear your child say she feels like killing herself--to wonder if she will open the car door at 60 miles an hour driving to the doctor. To wonder if she will do something crazy to herself. This is nothing to play around with. If your child is having self injurious thoughts or behaviors and you suspect it is caused by PANDAS, I'd throw everything you can at it--most everything is relatively benign when compared to the possible outcome of unpredictable behavior. One of the best things a doctor said to us early on was that our child was in "cognitive pain"...that was his response to our reluctance to try treatment with a burst of strong steroids. We took it to heart and did the steroid burst, (longer than the 5 day one, tapered up and down) At the same time we discovered antibiotics had a great effect (along with the steroid burst.) We know there are possible treatments--