T_Mom

PhillyPA I think you bring up a very good point -- and the new term PANS rather addresses it, or so it seems. Sudden onset being the KEY aspect of "neuro-psych." issues to qualify a child with this disorder (or am I missing something?) No doubt these girls have been 'hit' with something, and if it was me I would be running to a neurologist who knew about PANDAS and was willing to treat. --to at least try.

Yes, thanks Kim!!! I would encourage Beth to check the threads at the top of this forum for those ever "Helpful threads"...like FAQs and the flow-chart! also, the link to www.pandasnetwork.org or the online interviews. PANDAS can be so basic and so subtle in reactions -- as we all know, symptoms can vary and be mild to moderate (obvious) to severe. While many of us did not have children with "caught" rising titers of strep in blood work, we DID have a positive reaction to PANDAS treatments (for example a month of antibiotics, or a steroid burst.) I wonder if any of these girls have OCD symptoms too--

I think that we waited much, much too long to try the IVIG--by the time we finally did it we had no choice. Our d was having to stay with friends due to her severe reactions to us at home. She had been exposed to strep and then her OCD came on with a rage--and morphed into severe ODD, (breaking items and attacking) she was most obviously not herself. We did try behavioral counseling, contracts, etc...prednisone burst and 3 different abx, it was beyond her control to control. IVIG was the LAST thing I wanted to "try" but I am very thankful we did -- as it made all the difference. Regretfully--we 'lost' the year. Academically, the school knew by Oct.(2010) that something was very wrong w/ her (they contacted us.) They designed and started using an OCD checklist of behaviors daily across ALL of her teachers to chart behaviors. She was "un-gradeable" every single quarter of last year--due to failing grades which we all knew were because of PANDAS (written language, ability to write, focus, attention, OCD issues.) She refused to go to school, had to be carried at times to the car. Finally did IVIG in May of 2010. She started school this year and the teachers emailed to say she was an entirely different child. She has gotten A's and B's on everything this year, honor roll. She is able to concentrate and no sign of OCD at school nor at home. You asked if she was "100%" -- I am not sure how to answer that. We can see that she is herself again, that we can sit with her, hug her, talk to her again--that she laughs, looks at me, has friends, she does not hit us, nor is she destroying items. Most importantly she is able to be happy again (she reported that "Mama, I feel happy again" within the first 48 hours after IVIG. (I almost fell off the stairs we were sitting on.) ...is she 100%? I would say yes, though I suspect she would not be wanting to "forget" last year--like she says she does, if she had not gotten sick. I also suspect that some of her lingering obstinate reactions at times are related to those horrible times of last year. (Aren't we all affected by the crises we encounter...sadly, I don't think any of us have not been deeply touched and affected.) As w/ any major illness--a child may be treated and 'recover', for example from cancer, but the memories are still there. We ARE thrilled with where she is -- I would say she is 100% herself again, at the same time we have all been profoundly affected.

Hey LaurenK-- I am sorry, I don't remember your story, has your son already had IVIG? From your post I cannot tell--if you are just asking, or saying he did get worse? Our experience was that one IVIG treatment literally "re-set" our d essentially back to herself within 4 weeks post-IVIG. She went from horrible, un-liveable, raging OCD and ODD to herself again thanks to IVIG (and we had been through a TERRIBLE year dealing with a cascading Pandas flair--after exposure to strep.) We have only had good response -- yes, some ups and downs those first weeks but in the end, IVIG made all the difference.

There are other Ps treating doctors -- CA for example, and Seattle...and others. I think you need to go to someone that is knowledgeable and working with Ps (period) and is the closest to you-- Be willing to try the next doctor on your list if the one you sought out is not helping.

For those medically-inclined brains, far more perceptive than my abilities are able to reach-- I can't help but wonder if a letter to the 'editor' of the esteemed journal would be at all helpful re: the inconsistencies? Review boards often don't have the full-history behind the article, before vote "approve." (Buster--thanks for weighing in on the article, appreciate it.)

Hi Amy-- I am sorry, perhaps no one saw your post on the 9th, but after reading it I can understand why you are looking at PANDAS possibilities, certainly I think it is worth checking. Sadly, the only way that most of us have determined our child has this autoimmune reaction causing OCD/etc. is by treatment effect! The blood tests may or may not come back positive, many of us did not "have" a positive strep test come back, in other words, if I had it to do over again....I would beg, borrow, or steal (OK maybe not steal:) antibiotics for a month long trial--If there is sudden onset OCD, intrusive thoughts, movement issues, and the doctor does not have a diagnosis....I would ask them for a trial of antibiotics, to just "see" if it possibly could be PANDAS related. At the top of the forum is a Helpful Threads post which has Buster's (a PANDAS Dad) FLOWCHART, of possible steps to treat. If it is Ps -- as in the case of my two children, I only wish I had treated right away and aggressively, before they suffered needlessly.

hi Mom2two, the constant bouncing of the legs, our d did this with the first noticeable episode but it was sudden onset "anorexia" associated with PANDAS and she bounced, hopped, etc trying to obsessively burn calories. If not anorexia compulsive exercising related -- then the advice from LLM is spot on to me, take a look at the Youtube chorea videos, and try to see if she can hold her hands out straight in from of her with arms extended, and if there is any finger fidgets, even slight, or hand drift. * The point is to see IF she CAN hold her fingers perfectly still with arms and fingers outstretched??? I would get to a Ps knowledgeable doctor for evaluation asap -- or at least try a 30 day trial of antibiotics myself, to just see--

WoW! Give him a hug from all of us -- so proud of him!

rhyanen--so many of us have begged our pediatricians to just "TRY" a 30 day trial of full strength azithromycin or amoxicillan, or 10 days of one and then beg for a switch if there is no 'glimmer' of hope. 30 days is a VERY benign trial -- and IF then your child responds that speaks volumes more then any blood test can. I would go to the "helpful" threads post at the top of the forum, or to Pandasnetwork.org and print up as many articles as I could carry in a folder to the doctor when you ask for this, along with the phone numbers of Ps knowledgeable doctors -- Have you had a consult with anyone that has ever treated Ps? Again, if this is Ps, and you treat--there should be a response.

Rjayne--Your post has brought up more questions then answers -- but THANK YOU for posting. The possible connection between OMS and PANS is so interesting. I was fascinated to read that a neuroblastoma tumor is not necessary for this diagnosis--and in fact this AUTOIMMUNE reaction can be caused by a virus. OMS (the virus caused type, with no tumor present) LOOKS like Ps, including: references to emotional issues possible explosive rage and personality changes tremor issues (many Ps children have chorea-like movements, etc.) learning decline, focus problems fine motor issues (writing being most evident) can be repetitively triggered by a virus may result in the child being mute, immobile, and have eating issues!!! if you look at the blood work suggested by the leading expert on this childhood illness it looks like a PANDAS/PITAND list. GOOD HEAVENS...and typical treatments include: steroids, IVIG, and at times, plasmapheresis...(WHAT the heck are we dealing with here...) (I only wonder why the doctors we carried our d to originally didn't suggest a lumbar puncture to check for spinal infections.) Dr. Pranzatelli looks like an absolute genius -- who cares deeply and has obviously devoted his career to help. His website is full of information which is incredibly parallel to PANDAS (or more likely PITAND) www.omsusa.org

Johnsmom--don 't get hung up on the "overnight" issue...ask yourself, did it start at an obvious period of time? Most of us can say the month, if not the week--but with milder initial symptoms the onset may not be as obviously dramatic. Instead, I would look for obvious reaction to the Ps treatments--and THAT speaks volumes. This article is fantastic and will no doubt help countless practitioners to truly help children with PANs issues -- A big thank you to Dr. Jenike and to Susan Dailey -- thank you.

FANTASTIC news Missjo!!! Praises for Dr L ...

I think what pains me most is this is such a political volley to save face while children are suffering...NEEDLESSLY. The brutal truth is the "do no harm" oath has long been forgotten in an effort to support egos and pride. Shame. I have two children who have essentially lost 4 years of childhood -- thousands spent on CBT/etc. Saturday mornings at psycho-therapists, etc. ...and a couple of ol' guys at JHU feel the "need" to tell the world their perspective, which is??? based on saving face??? I am sorry, for all those children suffering, unidentified, sitting in institutions, prisons, etc. whose lives have been lost, productivity never realized, because of this autoimmune reaction to infection (as recognized nationally as well as internationally.) The marriages lost, the tears spent, and the years of anguish...and now they want to save face, or "get in the game" with qualifying remarks? Qualifying themselves as the waters heat to boil, at last? No, I am really sorry for them, as they must (I hope) think of the many families who have suffered these past 2 decades because of their mistaken (purposeful? perhaps not?) influence on public opinion- (edited to remove specific names.)

Now THIS IS good news indeed!!! Thank you Dr.s Swedo, Cunningham, Leckman, and Hornig! --from the bottom of my heart.

I vote we just call it *#@* and leave it at that!!! I have half a mind to take my d up to Singer and have a work-up -- just to see what he would suggest! Maybe THAT is the answer, start flooding his appointments with Ps kids from the mid-atlantic region -- with our histories and reactions, just to see what the heck he says! Send him the articles from the last three years, the interviews, etc. Who are the co-authors (Wolf seems to be a colon-guy !?! maybe just in training...)

Hi Michael--I am so sorry--what a nightmare this time is for you, and for your son! Our youngest d spent all of last year "un-gradeable"...she went from A's and B's to D's and F's. Our small school was able to work with us to accommodate her illness related back-slide academically. Every single quarter she was ungrade-able, as we hoped and prayed for insurance to come through for pheresis. It never did and we ended up doing IVIG in May, after the end of a heck of an experience, for her, both academically and emotionally...She was essentially back to herself within four weeks post-IVIG. If only we had done it sooner. We kept her in as "normal" a setting as possible at school, this being an illness-related issue, not a permanent disability issue. For self esteem reasons alone, especially at middle school, if he is with children with cognitive disabilities who are not representative of his normal ability this may be damaging I would think. My d does not even want to wear the clothes or have any reminders of her last year experience now that she is back to being herself--Thanks to IVIG. Have you visited the special ed. classroom to see what your son's experience in that setting is like? You said "he can't learn..." because the other kids are so distracting, but if he is healing from a Ps episode then of course just his current state could be the issue as to why he can't learn, I would think it is very tough to tell the difference. Regardless, it does not sound like it is "working." ??? Two questions for you: Are the treatments you have done aggressive enough? Did they work? Can you get the school to support your child under "Other Health Impaired" as the label? -- it may open other possible supports like home support for part of the day, etc.

There have been so many new families lately that I just wanted to post this reminder that there is a wealth of information on the "Helpful Threads" post at the top of the PANDAS forum. Here is the link. http://www.latitudes.org/forums/index.php?showtopic=3928&st=0 Personally, I find the flowchart for diagnosis and treatment posted by Buster to be one of the most useful pages ever posted--(22 Jan. 2010)

Hi Mayzoo, I am so sorry you have had to go through this recent change with your daughter--especially worrisome given her other struggles I am sure. You mentioned torticollis, which is often related to a dystonia diagnosis. My mother in law has this as well, and it is auto-immune based, with the center being in the basal ganglia of the brain, the same area affected by PANDAS/PANS. I only mention this to raise the issue of you possibly seeing a neurologist that is familiar with (and treats) PANDAS children. Dr. Latimer in Bethesda, MD. You also mentioned your child has the diagnosis of autism. I don't know the severity of the symptoms of course. However, I think you are correct that the recent sudden-onset symptoms your child has had are definitely in line with OCD issues related to PANDAS. The sudden onset factor would lead me to do the exact same thing you are doing--TRYING to treat in case this is PANS. A month of full-strength antibiotics would be a benign trial to at least SEE if it had an effect--keep a journal, a tabulation of the number or severity ratings of the behavior as well as notes the best you can-- The following post is a VERY helpful flow chart a parent posted which many of us have found very helpful. All the best to you, I hope this helps-- http://www.latitudes.org/forums/index.php?showtopic=6688

Hi EAMom, thanks for the follow-up. We saw the nutritionist but I had forgotten the article...so will have to email it to her to see what she suggests. Thanks again for the idea. re: steroid burst, it was determined that given her state this was potentially dangerous, so we did not do one. Truthfully, I am just kicking myself that we did not do IVIG in August for her before this got out of control so quickly. We were told (again) that if she is not up in weight the next two weeks that inpatient feeding tube will be required (she had lost weight this past week.

Hi NVAmom-- I thought it may be some other place as Dr L is the only one I know of prescribing for Georgetown--Did your child have "other" symptoms which would necessitate keeping them home, or low immune response in bloodwork??? We just did pex about 8 weeks ago and it was my understanding we could go right back to school, etc. -- so I am wondering if your situation is somehow different for the doc. to suggest that? Our d has had some low level improvement -- She says her OCD intrusive thoughts have gone away, so that is huge. However, this episode had lapsed into severe anorexic issues (down 30 lbs, etc.) which were not entirely eradicated. Having now been in touch with an eating disorders team, I think the pex may not have been "as effective as possible" due to her brain being in a severely malnourished state. The whole re-feeding issue is critical it seems for recovery from anorexia, and so we wonder if that set her up essentially for not having as effective a response (ie., 100%...) though we DID see a good turn around in the intrusive thoughts-- so why do you think it was suggested that you stay home for two months post-pex? any thoughts on that? thanks.

Hi NVAMom-- We had pex in early Nov. and the prescribing doctor said the same as the advice from the pheresis nurse and hemonc doctor you spoke with--that our d could go back to school immediately. May I ask who your prescribing doctor was and where did you have it done? Not Georgetown I presume--thanks, and I hope and pray you see some clear positive results soon.

Thanks EAMom, the weekly mtg w/ the nutritionist is tomorrow and I will ask about Amantadine. We are not out of the woods yet here. She has been struggling with eating--she had 3 not-as-bad days last week and then she saw the psych. and she had a pretty clear set-back. The psych. is a very "straight forward" AN counselor, which seems to be quite typical. However, with PANS I am not sure this is working. Facing this is very tough. I am seeing an entrenched AN that is really scary quite frankly. We did pex in early Nov. and will seek IVIG in Jan. Since our d has always responded very well to a steroid burst we remain hopeful. I agree that re-nourishing is absolutely critical to recovery -- perhaps even with an immune modulating treatment. I wonder if that is why she did not respond well to pex. My only wish is that we had done IVIG much sooner.

FANTASTIC Vickie!!! Thank you for putting this together--hope and recovery, amen!

Hold steady greenmommy-- Steroids can take a little while to "work" , and the second time may be different than the first. You are on day 4 of the steroids, how long is the prednisone treatment? As you know, it can take a week or two to see a change...and then, if the episode was severe it may take months to "fully" heal. I think on the forum lately we have been emphasizing the "hopeful quick fix" when in truth, for many of our children it takes months to get them back to themselves after an episode--While many of us have seen excellent results with PANS treatments, the truth is that the entire healing can take time, alot of time...but it is the week to week TREND that I would watch for and try to record to keep track of the brain healing. Final thought would only be -- did you mean to say you are "finishing" the Augmentin? Why is he not continuing for at least 30 days at this point? I guess I would keep him on it for 6 months or more, if not much longer if you think the PANS reaction is behind his tick/OCD/anger, etc. Benign trial to say the least when you are facing those types of issues--my best to you--