T_Mom

Wow! WHO WAS BEHIND THIS ? LLM -- Did you spearhead this??? whoever it was -- THANK YOU.

I am so sorry you are going through this-- We see Dr L, and she does not take our insurance either, I am not sure she takes any insurance-- However, our insurance does reimburse part of our costs. We pay up front and then once the bills are submitted the insurance co. pays some of it--to us. Will you get anything back if you submit to her? You are so close to Dr Latimer, seems like Georgetown would have good cardiologists as well--we saw a doctor there for our d in December, and she was very good. pm me if you want her name.

--just to add, when we took our dogs in to the vet to be strep tested he recommended just going ahead and treating as them, as the testing was so difficult (they would have to be sedated, etc. for a "correct" culture we were told.) So we did choose to go ahead and treat them both as if they were positive, both dogs were put on VERY strong abx.

I am going to dig a little deeper in the articles tomorrow, and determine an amount for our d, will let you know what I find-- having had her w/ the AN counselor and nutritionist, weekly now since December, it really bothers me that neither one of them even suggested the connection, nor recommended this-- wouldn't you think they could do a little professional reading in their spare time! -- leaving it to the parents -- once again

My oldest d had intrusive thoughts to the point of utter distraction--circles of swearing at God in her head, which bothered her to no end. These went on for months, continuing after the more "obvious" symptoms all had gone with steroid treatment. We finally did plasmapheresis --after about 10 days she said the constant intrusive thoughts were gone.

...and look at this one: http://www.ncbi.nlm.nih.gov/m/pubmed/2291418/?i=6&from=/17272939/related makes one wonder if in another generation or two we will have it all figured out. Thanks for posting this EAMom, I am going out to get some zinc tomorrow!

thank you, thank you, thank you.

Yes, my kids both had spitting during early episodes.

So glad that you saw a good response to the antibiotic--as many of us have observed, some abx appear to have an anti-inflammatory and immune modulating effect. Because of this, if it is working, it is a good thing! You have to treat w/ something, and in my opinion, abx is obviously the lesser treatment (so to speak...) in which case, more abx -- and hopefully all symptoms will end...If it was us, I would ask for 3 months, and then taper if possible. just my opinion

I have only read the abstract which I find interesting--but one statement of which I find concerning ??? Should we be concerned, as this seems misleading, and False. * from the abstract: "These symptoms were alleviated by the D2 blocker haloperidol and the selective serotonin reuptake inhibitor paroxetine, respectively, drugs that are used to treat motor symptoms and compulsions in streptococcal-related neuropsychiatric disorders. " If they leave it at this in the actual article; there could be a lot of confusion. I hope parents also read the articles on the difficulty PANDAS, PANS children can have with psych meds.!~!! HOW could they claim that "haloperidol and paroxetine,(are) drugs used to treat "streptococcal-related neuropsych. disorders!!!" DO they mention--antibiotics, steroids, IVIG, pheresis? NIH, YALE or elsewhere that these are being used???

I am so sorry you have had to find this forum, but at the same time I am glad that you did-- We are in MD and have seen doctors at JHU (in the past), -- before we found a doctor willing and ABLE to treat PANS / PANDAS -- Dr L in Bethesda. I would be happy to speak with you at anytime on the phone, just pm me. I applaud your persistence in working with the doctor you are seeing, however--we have all found that if and when a return episode comes back, and it gets worse, that this is NOTHING to wait around on and leaving treatment until "later" can make your life, well, unbearable might be a very weak term to use (not to mention robbing your child of a childhood.) --sorry if I sound like I have regrets, I do. I was scared of IVIG for much, much too long and my children suffered because of it-- If I were you, I would have your doctor call Dr L to see what blood tests to do, and what antibiotic she then recommends. Full strength Amoxicillan for a 30 DAY period has helped some, other children have been helped with a 30 day trial of Azithromycin, others with Augmentin XR (extended release.) Both of my girls have been on antibiotics continually for the past 2 years, full strength. A 10 day trial will typically do little to nothing. Dr. K in Chicago (www.webpediatrics.com) typically recommends a one week steroid burst to "test" if it is PANDAS. Dr L also makes use of steroids to bring symptoms under control. IF your child responds well to steroids that is thought to be a clue--likewise with antibiotics...but DON'T stop there-- many of us did, and within 3 to 6 months our children, when exposed to even strep in others (ie., they don't get it themselves!) their OCD/ticcing flairs and the cascade of behaviors etc. starts up again. Dr L will not leave you hanging, she would provide a thorough review and medications as needed --Please, consider calling her office again as your case is really an urgent need given that you are leaving for a year.

I just sent you a personal message too.

Thank you everyone for the help on this -- always good to hear the suggestions. Maybe we will try Benadryl or Claritin, sure wish there was a "map" for all of this!

Thanks Vickie, that sounds interesting and I will look into it--regretfully I need something today to send with her--but thanks!

Hi -- Oldest d (14) has school weekend field trip -- I know we have kicked this around before, but can someone please remind me which OTC meds for pollen allergies have worked??? (She reports that Zyrtec activates her symptoms.) Thank you--

Wow! This is fantastic-- Your son was part of the NIH study -- and you said he had IVIG twice, one month apart. Were these both w/ the study at NIH? Do you know for sure that both were the real thing? Also, is he still on the Augmentin 875 (twice a day), OR is he now on anything else? -- different antibiotic? Finally, was this all via Dr B? Thanks--

Wow-- If you read many of our histories on this forum you will find striking similarities with your son! The very fact that when he got strep throat, soon afterwards he had overnight onset of serious separation anxiety, urinary frequency, and he has had ongoing issues with OCD... DEFINITELY if it was me, I would be trying a month long treatment of antibiotics---just to see if they might have an effect. You have to get to a PANDAS/PANS treating doctor though, and you are in luck that Dr L is not far from you--She has experience treating and is able to treat. You won't know if it is "PANS" until you try treating it as such and see what happens. PANS is a clinical diagnosis, meaning not one thing or another is an end-all indicator. Treatment effect is a BIG hint though-- Worth a try certainly and may help your son avoid the YEARS of suffering some of our kids have gone through. I feel like my daughters have lost a huge chunk of their childhoods needlessly to PANS...If I could do it again I would treat ASAP and hit it with everything available. 4 years ago Dr K told me that my d should get IVIG. He told me it was a "no-brainer" as she had responded very well to steroids. He also told me, in no uncertain terms, that if it was PANDAS that it would most likely come back time and again. Looking back, he was RIGHT, RIGHT, RIGHT. That daughter had IVIG for the first time this week. I very much regret that I was not courageous enough to have it done 4 years ago for her sake.

Yes, I agree. I don't honestly know where we would be without the people on this board. It has been a constant encouragement for 4 years and a life-line of information --THANK YOU.

It seems to me that there is a distinction between the long-term or short-term issues being discussed. Our experience has been that once out of an episode the short-term memory problems (ie., ability to memorize or learn new material) are no longer apparent... As far as long-term memory issues I don't know for our girls. I will mention a curious fact (IMO:)...and that is that I believe I had some type of PANS episode as a child, constant strep as a child, etc. and have always had a total void of "memories" of life prior to 7th grade. I literally cannot recall common life events, teachers, schools, etc. Weird. I sure hope it is not "common" to PANS, but it would make sense that it could be connected.

Yes, our daughters both can "not do math" when in an episode...otherwise they are both A students. They have fuzzy thinking, inability to write or copy problems correctly, margin drift, etc. when in an episode. My younger d (11 at the time) spent all of last school year not being graded, due to OCD which then became ODD -- complete with school refusal. The private school was wonderful with our situation. The Principal had seen our older d go through severe Ps and then recover...so she was VERY supportive. The school literally did not grade her (as it would have been all Fs)...yet all along they assured us they would pass her. They knew she was an A student and that the OCD hopping, touching, head ticcing, all went along with the PANS effects of totally abolishing academic ability. I do not think the public school would do the same for you. The 504 Plan suggested by DCMom is the right way to go if you can get it. Our d had such severe school refusal that nothing could get her to school, aside from finally a family friend with whom she had to stay--for the month prior to IVIG. ( We really are a relatively normal family--despite what this sounds like!! I have to share with you that she did not get better until wwwaaayyyy too late in the year, only after we finally resorted to IVIG. For our d PANS treatment was (literally) a life saver. (After we had to replace 3 lamps, a tv, multiple other breakables around the house...holes in the walls, etc.) Yes we tried counseling, etc...NOTHING worked short of IVIG. I never thought we would get to that point. I agree that you should call NIH directly tomorrow--the drive is short, compared to the potential to lose months and months of his childhood. You can call Dr. Grant directly as he is reviewing applicants to the study. I would try that as it is free, a very thorough review, and within driving distance from your home.

Hi-- I understand holding off on IVIG -- we did that too, (for way, way too long.) My reason was fear though-- I don't know if it lowers Cam K II, but I can tell you IVIG worked miracles in our Pitand/PANS child. Is there a reason that you feel it has only a 50/50 chance of helping? NIH is pouring alot of $ into the study which, quite frankly, would not have been undertaken unless there was a pretty good shot at IVIG having a very real effect on "PANS/PANDAS". From those doctors treating with IVIG all indications appear to be much higher "chance of helping" than 50/50. Have you consulted with any of the doctors that have been using IVIG to treat PANS? All the best--

Phasmid--Mary, Great news! Thanks for checking back in to tell us! Is your son on abx or anything now? very thankful to hear of his success!!!

As Peglem noted, it definitely runs in families--some families at least! If I were you, I would try to see if there is a treatment effect with a 30 day course of antibiotics. Having dealt with this for 4 years ourselves, I can understand your concerns re: medications. Though at times, I wonder if the fear that holds us back -- is actually holding out kids back from a normal childhood? I have often thought of the frog in the pot of slowly heating water...he never realizes it is in full boil until too late. Our experience when we have waited to TRY to treat, has robbed us all.

This press release from NIH is GREAT. THANK YOU DR. SWEDO AND TEAM! They are equipping parents to get the treatments necessary for PANS/PANDAS !!! This release represents a paradigm shift which treating pediatricians will need to come-up-to-speed on.

Dedee, thank you for posting. It is very helpful to hear your experience in FL with Dr. M, thank you! May things continue to improve!