T_Mom

This article is such a whole-picture presentation of the history and research on Pandas/Pitand issues--with great summary statements on treatment efficacy based on the research. Does anyone know if Dr. Moretti and his associates are still working on PANDAS? I wish we could get an update--I suspect it would be worthwhile reading. http://www.cpementalhealth.com/content/4/1/13

We have one d (75 lbs) on 250 azithro every day -- the other on amoxicillan 500 mg twice a day. Summer of 2010 both girls were exposed to strep (via day long playdate w/ 3 kids, all 3 had strep.) Both daughters flaired (though they never test positive for strep--at least we have not caught it.) -- but OCD/ODD raged. We have them both on the abx (and did a steroid burst for one and IVIG for the other during the past year.) Hope that helps.

Hi Burnell-- I am sorry to hear of the ups and downs your dd has had post-infusion. (Do you know for sure IF she got the IVIG in the study?) I would be curious as to what you are thinking about doing next? Will NIH keep following you? --would you mind sharing how NIH is following the kids post-infusion? Do they do weekly "check-ins" or are parents completing behavior rating scales, and for how long post-infusion? What constitutes "success" of IVIG I wonder...6 month changes, one year? Who would you say is treating/following your dd now? NIH, Dr. T, or Dr. M.? My dd (almost 12) had IVIG in May too (not with NIH), and while we have had some ups and downs, the effects were almost immediately evident and there has been obvious progression and shedding of ODD and OCD behaviors (she was very severe.) I wonder too about the follow-up re: abx. My d weighs 75 lbs and is on azithro 250mg a day, 1000 omega EPA, and I know she got also got some steroid intravenously the last day of the IVIG (Gammunex IVIG.) She is doing much better. Personally, we would do it again if needed.

This is a wonderful summary -- thank you for sharing it here! The descriptions are excellent and the treatment course is outlined clearly, what a WONDERFUL resource to share with psych/docs/ped.s/family members!!! Thank you!!!

Hi NMom--I am sorry this has been scary. I don't know if this helps or not, but with our 2 daughters (11 and 13 now) both have had 2 steroid bursts. For the one d the moon face is common effect of steroids -- but it goes away. It is not lasting. Our experience has been consistently positive with steroids, essentially doing away with all of her severe OCD issues, like a silver bullet almost -- dramatically decreasing her severe OCD and mild ticcing issues. Twice! I do not know if our d had more frequent urination or some weight gain(how much has your son gained in the 2 weeks?) I really don't know, but the effects of the steroids were so incredibly positive afterwards that we felt it set her system "right" enough for healing to begin,,,We would do it again in a heartbeat. For my other Ps d there was not as clear an effect w/ oral steroids, but an IV steroid treatment w/ IVIG seemed to be very helpful, within 24 hours even. Both kids had some activation from the steroids, but to be expected. I hope you will see this calm and really good results afterwards-- We have been given steroids for Ps by two different neurologists in the DC area, both times neuro-psych issues faded. *(Please note that the first time steroids were given to my d (then 11) she was literally so enslaved by OCD she was crawling, balled up on the floor of the doctor's lobby.) We thought she had lost her mind! He took one look at her and after discussing the situation he recommended steroids, a strong 3 week burst. He said it was out of the box, but that IF it was his child he would do it. With steroids our kids have experienced common physical issues (moon face and mild activation) but also solid, dramatic PANDAS improvements. The second time we tried steroids w/ our oldest, for example, she was able to focus again in school--her work did a 180 turn-around. In fact, her teacher (who knew about her Ps as our d was essentially not functioning in school, BUT the teacher did not know we were trying the steroids) -- the teacher emailed me to say she was seeing a completely differect child at school! -- the good effects continued until strep exposure a year later. We feel steroids are not a big deal in our family compared to the suffering of PANDAS/PITAND--and the good effects have been proven more then once. I hope you see the same--all the best.

If it was me, I would want to discuss the situation with a neurologist, due to the ticcing severity. If your Ps doctor recommends steroids, then the next question I would want to know is IF it is not Ps, and we try steroids, are there any possible long term negative effects (ie., if ticcing might get worse but then go back down to baseline, then is there anything to lose in trying steroids?) From reading your posts, I understand the lyme considerations, but has your child been identified as + for lyme? If so, then LLMD would be my next move, to consult at least-- Sometimes we don't know until we try.

With one Pitand d -- 2 steroid bursts (3 weeks long each) and each time VERY good results. The first time she was 110% and "recovered" for about a year before a flair of OCD (with strep exposure.) The second time she got much better, but not 100% -- maybe 75% and holding. For us, the first time (or two) of using a steroid burst had really good effects, but seem to have lessened each time.

This type of information re: PANDAS, non-emotional and an evidence-based approach to diagnosis and treatment, will go far to help thousands in the future. Thank you Dr.s Murphy and Yokum.

Hi Laura, We, admittedly, have chosen a much more "mainstream" (!!!) approach to treating PANDAS symptoms for our daughters, based on the fact that they had obvious reactions to STREP or other illnesses in their environment. I have heard of the type of "treatments" you mention and if I am correct it is actually said to be done by a "treating person" holding their hands over the person and supposedly sensing the ? vibrations, from supposed toxins...am I correct that is how ART is done??? -if I am thinking of something else, please forgive me. This is going to sound like a true nay-sayer, but that seems rather dubious to me. Having had IVIG done for our d who was ENTIRELY non-functional last year, and having seen a MIRACULOUS reaction--180 turn-around, I must question the validity of any seer-like 'treatment-diagnosis' reminds me more then a little of snake-oil. I am sorry to be rude, and I know you have seen a change in your child, for which I am thrilled for you. I guess I would want to offer that evidence-based medicine is finally addressing the Ps dilemma -- finally, and if IVIG/PEX is necessary in your child's future (I pray it is not!) but if it is, I hope it is available to you and paid in full by insurance as a treatment that has been validated and shown to be reliable in effectiveness--through evidence based testing.

I really appreciate this discussion--having faced similar issues and still in the midst of them. I wonder if the infamous "white paper" will have any bearing on this current situation? --Where is that paper? and I wonder what the hold-up could be? Here we have MULTIPLE professional articles being published in reputable medical journals and we cannot get the EFFECTIVE TREATMENTS covered, even when the outcome is incredibly positive afterwards!!!

We have NOT seen this doctor but he is featured in this news clip on PANDAS, may be worth checking if you live in Pennsylvania-- http://pandasnetwork.org/2011/09/pandas-in-the-news-the-falcone-family/ Dr. Hal Gordon, Pennsylvania

Yes, Sydne, it is Dr Latimer in Bethesda MD. and she (like other Ps doctors) is literally 'saving lives' on a regular basis. I do not say that lightly, but as one for whom her insightful treatments have restored 'life' to our home. I forgot to mention, that when my d was not speaking 3 years ago, it was before we had found Dr L -- another local neurologist suggested a steroid burst. He said it was "out of the box" , and others would think he was crazy, but that was what HE would do if he was the parent. We asked him to use Dr. K's protocol, which he did (with a longer taper) and my d literally "walked out" of the OCD storm, started speaking, etc. It was then 9 long months after that when we found Dr L. Our d was still struggling but much, much better with each progressive week until hitting a plateau in healing at which time we thankfully found Dr L. Dr L suggested another prednisone burst and that one brought my d back to 110% herself, a VERY dramatic effect literally within 48 hours...even her teachers noticed (we had not told them we were doing a steroid burst.) All the best to you.

Hi ZJsmom,-- So to recap, (and again I am so sorry you are going through this right now, I understand how devastating this must be.) Your son is not speaking, and you believe this is due to OCD, (not the first time this has happened) and he "washes his hands a lot and has issues about cleanliness." His lyme Igenex tests were negative but "slightly equivocal" for bartonella/babesia and he was put on a strong combo of: Rifampin, Azithromycin, and Mepron, was this by the NURSE PRACTITIONER?? and you note "it seems a bit worse, and he definitely feels worse physically." I guess my first step would be to take him to a reputable PANDAS treating doctor if you believe this might be the case -- ASAP. Has he had a thorough blood work up? MRI? to rule out other issues which may be affecting his speech? Who read his blood results? The feeling "worse" may be from a host of things, including a positive "herx" I suppose, or too much abx, or... Please feel free to pm me, I am happy to tell you about our experience with a professionally well respected neurologist, connected to a large well established University hospital, in the DC area. Your son is not speaking, and if this IS due to OCD then it is a severe case of OCD and seeing a doctor with experience treating PANDAS successfully could be essential for long term health. If it is Ps... I have no idea who the nurse practitioner is -- who recently moved from CA to DC... but I can highly recommend a PANDAS treating doctor in the same area.

Hi -- Our d stopped speaking for over 3 weeks, but it was due to OCD issues (or so we were told.) Essentially, she had sudden onset OCD which then worsened quickly, and within a month of initial onset she stopped speaking. Does your son show signs of OCD issues? Do you see a difference in his behavior when treated with antibiotics? I hope you are able to find answers very soon.

What a horrific experience for your daughter, and for you-- I am really thrilled that your dear child has had such an amazing turnaround with pheresis. Did she have any other symptoms of "Ps", other then the chorea? In reading just what you wrote above I wonder if this was a Pandas reaction to strep (or other illness) -- or instead some type of dystonia reaction to bacteria of some type? What led you (and Dr T was it?) to think it was Ps? Did she have OCD, or other Ps indicators (urinary frequency, regression, anorexia, anything?) All the best to you and your dear child, and congratulations on taking the steps to get her well!!! I would say you know what works, and if needs be, you have that in the back-pocket to use again.

PANDAS-16, you have posted clearly your intent to encourage and point to hope! You are so right, and that is exactly why we are all here desperately trying to help our children--thank you. I have followed this site for 3 years. It has provided great insights which we did not find ANYWHERE ELSE -- We will never, never be able to say "Thank you" enough to all the members of this forum. PANDAS 16 I always enjoy your reflections as I hope our own children will be as understanding about their past struggles when they get to young-adulthood... As a Ps parent, I can completely identify with Worried Dad's comments. (warning: rant coming.) There is NO excuse for the failing of the medical community to recognize PANDAS -- except perhaps the guilt of self-interest and petty "historical" politics. Our 5th grade daughter went from "talented and gifted" to literally OCD-imprisoned within 3 weeks during the summer before 5th grade. At the worst of it we had to carry her, she did not speak for over 3 weeks, eyes shut, saliva held in her mouth, regressed, ticcing, need I go on? VERY severe. At an early appt., as my suddenly non-verbal d was crawling around the floor and trying to get behind a radiator in the examining room -- our pediatrician had the nerve to tell me the zebra vs. horses story when I brough up Ps!!! I begged her to help us, to tell us what to do, and her only suggestion was to see a psych. Just this morning I was reflecting on that time, 3 years ago, when we carried our d to the leading psych on OCD (historically THE guru in Washington DC) and paid $800 for the initial evaluation...She charged us $800 !!! and basically told us that our d was not psychotic, but was suffering from one of the most severe OCD "storms" she had ever seen...since she had been involved w/ Ps research I thought we HAD to go--(my husband almost fell off the chair when he wrote the check, I had not told him.) We were desperate. The caveat to that episode was that my d "walked out of the severe OCD storm" thanks to a steroid burst and antibiotics...neither prescibed by that psych. After a string of doctors, we finally found Dr L and I cannot tell you the relief of hearing someone say they had treated Ps before. The current fact is that parents have to travel to find one of the very few doctors willing to TRY to treat. We subsequently fought insurance this year tryitg to get pex or IVIG paid for, hundreds of hours sunk into that effort and pex was entirely denied and we paid out of pocket for IVIG--still not a dime of coverage from insurance. THAT is criminal as it means only those with the means to pay are able to get the treatments -- just plain wrong (not to mention the drain on the retirement funds.) The NIH white paper, the small groups forming, raising awareness, etc. are all thanks to parents and a very small group of doctors. Will the medical field recognize Ps as a viable illness that merits treatment -- will insurance companies finally start paying for the desperately needed treatments? I hope so and shudder to think of the suffering that goes on for SO many who have no idea that "Ps" exists.

I am sure most have seen this article--but it was new to me, and thought it might be of interest. http://www.liebertonline.com/doi/abs/10.1089/cap.2010.0034

Hi Eljomom, that was what we were told. It is one perspective on an example of the "circumstances" of when a 2nd IVIG might need to be pursued. It is also my understanding that yes, the ongoing "healing" takes time. I believe it was Diana P. who mentioned to me that she thought it would be at 6 months after IVIG that the full effects would be evident. Though I get the impression that no one knows for sure why IVIG "works", it is my understanding that it has an effect on the immune response which then continues to positively affect the child's symptoms. Brain healing, basal ganglia quieting, who knows! I think the half-life issue is not as clear cut w/ IVIG as it is with a medication, as the whole issue of why-to-use IVIG is to have an effect on the immune response of the body, and I would think that is a multi-layer process.

Hi ANRMom, I am sorry you have to be looking for a Ps doc. but if you live in the DC area, DCMom is correct, you are near Dr L who is fantastic. I am glad you are going to see her. There is a general ped. in MD who just joined our pediatric practice. She was trained at Geo.'town and was aware of Ps as it was covered on one of their rounds. I am not sure how much she knows, but the fact that she had seen/heard about it in her medical training, well, I was encouraged. PM me for more info, if I can help--

Hi ANRMom, I am sorry you have to be looking for a Ps doc. but if you live in the DC area, DCMom is correct, you are near Dr L who is fantastic. I am glad you are going to see her. There is a general ped. in MD who just joined our pediatric practice. She was trained at Geo.'town and was aware of Ps as it was covered on one of their rounds. I am not sure how much she knows, but the fact that she had seen/heard about it in her medical training, well, I was encouraged. PM me for more info, if I can help--

Burnell I am really sorry you are going through this. Our Pandas doctor told us that a second IVIG would be considered if our child had a good reaction for the first month or so and then her behavior took a dive. We were told that the half-life of IVIG was about 3 to 4 weeks, and thus, if a child took a nose dive back to symptoms (after an obvious improvement in the first month) then a second IVIG may make sense to do-- I wonder do you know for sure if the treatment your child received in the study was the real IVIG? If the half-life issue is true, it sounds like your child fits that model for trying a second IVIG perhaps?

This is incredible!!! WOW!!! (I do believe that is Dr T in the clip!) What a GREAT outcome for this family. When our own d had such terrible angry outbursts with ODD/OCD this last year I often thought perhaps the answer was to send her to the nay-saying doctors for a weekend--and let them find the answer! IVIG was miraculous for us.

Yes, I can raise my hand on this one and say that YES we did IVIG and over the course of the last 12 weeks the OCD has virtually, "all" stopped -- I cannot say 100%, but she is very close. I have known a number of families that have done either pex or IVIG and neither of the actual treatments strike me as traumatizing. IVIG was not a bad experience at all in any way for us -- Our 11 year old d read books, watched movies, played with her computer game for 6-7 hours for each of two days, while hooked up to an IV and had no side effects (we used Gammunex, which I have heard has had very good effects.) We also were given IV steroids at the very end. I can tell you that so far there is not one shred of regret for us. The change has been miraculous. Last year she was not "gradeable" as judged by her school. She will go back to school able to write and do math -- the dramatic effects have been amazing.

Hi -- You mention that your son is "coming out of" his second major exacerbation. When you say, "coming out of" do you mean that it was worse earlier in the summer and is now ending? -- or is it becoming chronic, ongoing? I don't mean to ask questions but are his symptoms internalized or obvious to others? The doctor may have said what she said as a result of what your son described as his experience. We did IVIG and it has saved my daughter's life, literally. From ups and downs with Ps OCD (moderate to severe episodes) for over two years, and then the OCD became chronic and she had about 6 months of uncontrollable raging obstinate/defiant (totally out of character) OCD related behavior. We wanted to do pex but insurance would not cover it (we wanted pex initially primarily because the blood-product issue worried me). We then did IVIG, calculating the risk/benefit was definitely worth it...It is my understanding that Dr. K believes that IVIG is preferable. I would do it again in a heartbeat and only wish we had done it 9 months earlier! It is now 12 weeks since IVIG and our daughter is herself again--still healing emotionally from the terrible trauma that the OCD/ODD caused her, but there is hope. She is able to be in control again, and though not 100% yet, her behavior is night and day. I have literally seen this reaction, which, quite frankly, if I had not seen this myself I would have had a difficult time believing it.

I am smiling from ear to ear -- thankful prayers.