norcalmom

I'm pretty sure the answer to both those questions is yes...but I'm not a doctor - you need to call him/her. I know that strep can break through the antibiotics, and there is a possibility that the strep was never eraticated in the first place.

rash can also be symptom of strep. Think you need to call doc. allergic reaction, or strep..either one would not be good. I'd definately want to make sure he didn't have either going on.

I don't know if it was very young onset or not. He definately had some phases...terrible twos - I remeber we had to take him to the ENT doctor because he hwould loose his voice from screaming so loud and so long when he had tantrums he developed polyps on his vocal cords..fear of going over water (he still liked swimming) bridges, planes, boats - that came out of nowhere. But everything was subclinical. I don't know how, if your child has never had strep, you would distinguish pandas behaviors in a 1-2 year old (unless they have a tic, or a ver obvious repetive type OCD). I have a child that does not have pandas, and she went though her share of phases and terrible stubborn tantrums as well. His onset was spaced over a period of I'd say 2- 3 months. The first symptom was what appeared to be normal bickering with is sister at the dinner table - arguing over manners. "don't talk with you mouthful" "don't chew so loud - you're disgusting"...that turned into angry looks and growls (even when the rest of us had perfect manners). He was 10 and sister was 12 at time - so lots of preteen snarkiness starting, seemed normal, just annoying. Also at that time we had teacher say "something is getting int he way of his learning to his ability" but teacher didn't think it was ADD, wasn't really sure what was goin on. Wanted us to test him for giftedness, which can present itself in weird ways. I began to think he was "twice exceptional" - both gifted and learning disabled in some way so that they mask each other. Teacher also said he was mildly disruptive - talking to other kids instead of paying attention, AND ASKING TO USE THE BATHROOM WAY TOO OFTEN. We just thought he was bored in class, and wanted to go for walk down the hall or move around. I actually gave her the OK to tell him that he just went, and would have to wait until recess or lunch. It didn't even dawn on me that he actually might have felt like he had to go to the bathroom (never heard of this as a symptom of anything). He's always had a way of finding exactly where a teachers line is and walking right on it. Never sent to the office, but found ways to have his fun without crossing the line. Then, he was wetting his bed. Now, this has happened before, I'd say he went through two or three other periods of this. He slept throught he night dry for years, and then started to have bed wetting. We didn't make big deal out of it. Also weirdly he didn't soak his sheets for the most part - he only wet a little bit - just enought to get underwear/pajamas wet. He didn't do this every night, maybe 1-4 times a week. Again, not thinking much of it. And then came the tics. This was in our face, obviously not normal. He has a cousin with tourettes (but he has 17 cousins, so we have one of every condition in the family). He did NOT tic at school. And it didn't just explode overnight. He told us he was getting hair out of his eyes, and it was mild enough to think that was the case for about two weeks. We cut his hair. Then I observed him (as did his teacher) outside playing a recess, and it was out of control. Same at baseball practice. It took about 2-3 weeks for the tic to develop. But once it did it was horrible. (still never did it in the classroom). While the tic was developing he started to have nightmares. 2x's a week I'd say. Or couldn't fall asleep, and when that happened he would come to me and start tlaking about death, he was very fearful. Once he had a nightmare and woke up, and had jsut gotten out of bed to come and get me when a man appeared in his room - this was when he was awake - and then he disapeared. This never happened again, but he was awake. Oh, and we noticed he was really irritable, but then again he wasn't sleeping and his neck hurt...who wouldn't be irritible? About 4 months before this my father passed away. my son is named for him, but they were not close - he lived on the other side of the country and saw each other once a year. We thought the death had stressed him out more than we thought, and he was having a delayed reaction - contemplating death, nightmares, and ticcing - stress related was our thought. 2 doctors said the tics were probably transient, maybe complicated by stress, and to take it easy over the summer. I thought they were right - everyting did fade over the summer. We didn't bring up the eating thing to the doctors at all, I didn't know this was a form of OCD, just thought normal preteen sibling bickering. THEN it all started again, but the next time I saw a correlation with the symptoms because they all came over the period of 2 weeks. (oh, the eating thing never went away, and the tic was still there but bearly, only I would noitce he had one). But when it came back, he added on to the symptoms. So, he had more symptoms, everything was worse, and all occured closer together. But stilll, they did not all happen in one day. Tic showed up, a few days later wet his bed, a few days later had a nightmare...so not all on the same day. About a month later everything started ot fade, and I could see that fading excellerate with the antibiotics. Maybe the next time would have been "sudden onset". And now...over a year later I learn about perianl strep and remeber a mild rash he had, that I think I put some antibiotic ointment on, that went away in about a week. It was mild, no fever, just a little rash (although my son is 10 - who know how long it was there before he asked me to look at it). I wouldn't evne remeber something like ths except for where it was. This was before any symtoms or at least before the tic. I can't remember exactly. Back then I didn't look at every little thing like it was a symptom of pandas.

Peglem - yes we will try the steroids first. We did 3 days last thanksgiving and had to stop becasue he got a cold (and being ont her verge of the cold was probably setting his symtoms off, which is why I did the steroid burst). Didn't see any results for it, but then again had to stop, and the virus was probbaly dicating everything. EAMOM - the coffe invite was for you since we live pretty close! (not clear in my post who for).

Symptoms - can't stand to hear me or his father swallow anthing...I mean ANYTHING saliva, water, food. So, he eats in a separate room, and if he sees me swallow in front of him he yells at me for a few minutes. The scary symptom he has is what we call "sun -tics" a compulsion to quickly look at the sun. - he has good days and bad. He had a pretty good week a couple weeks ago and said he only did it "about 3 times" a few of the days. But the past few days he had baseball championship games, and I could see him doing it on the field, I'd say he did it 20 times during that game. Its quick, and he SAYS he tries to close his eyes when he looks up. I think stress adds to it - it was a big game, and right around the end of school parties and stuff. Irritablity, difficulty concentrating, poor handwriting (but how much is just HIM? I dunno). These are his "not exacerbating" symptoms. The list gets longer when that happens, but has not gotten as bad as fist couple times since antibiotics. I actually alread had a scrip for steroid burst. 5 day. I think we will try this week. Thanks for head up on what to expect. Please PM me your experience with Dr K and using local immunologist if you get a chance. I'd prefer to go that route (did you have to go to Chicago at all? Did you have to wait long for appointments?). Or if you are up for I could take you for coffee or lunch. Woudl love to meet another pandas parent.

Thinking of you! Good luck. You are good parents (even though the hotel staff is calling child protective services as I write this!). Some parents just need to have more mettle than others - you've go it. Keep us posted.

I'm here to tell you that symptoms don't have to have a "sudden, overnight" onset. Don't have to have high titers. Don't even need a known strep infection. Cam Kinase 176 - when he was not exacerbating. As matter of fact, he has been doing well lately. I was convinced he would come back low, inconclusive (becuase this is the story of my life when it comes to trying to diagnos this disease) . And I had convinced myself that maybe a steroid burst over the summer would be enough. If any of you out there who are reading this question if you child has pandas - just get the Cunningham test. Best $ I've spent on tests (and there has been LOTs of money spent since our deductible is very high). I wish we did it months ago. I told myself if it came back high we would pursue IVIG. Low - we would do some steroid bursts and try to give his brain time to heal in the summer when he's not suject to allt he viruses that trigger him. This means yet another doctor, (a pandas expert this time) and possiblyy another immunologist - if I can find one local to do the IVIG. For those of you that have done this -what is the timing? We've got a vacation planned for late summer, a camp that he really wants to do in July...and then school starts (and all the viruses). I'm scared. I have to go cry now..or throw up..not sure which.

Got ours this morning too. 176. Not in exacerbation. I don't know if I want to cry, or thow up. I was convinced he would come back low - esspecially since he was not in exacerbation. No high titers (negative actually) no known strep infection. I can't even say it was "sudden" onset - it didn't happen over night. It was spead out over a couple months. Tic was main visible symptom.

I'm waiting for ds's too. We took it when he was at his best, as oppossed to exacerbation. I even had a dream last night that it came back at 109. Whatever it is, knowing is better than not knowing. If it is clearly in normal range, we may pursue other avenues - maybe try some SSRI's and traditional therapies (which we have never done). If it is high, we may do IVIG or PEX. IF its is low pandas, I will do a couple steroid bursts, taurine, maybe some NAC and anything else I can do to lower it further and then take it again in 6 months.

most OCD research on this supplement has been int he area of hir pulling, but looks like nac has been around serving other purposes for a long time. I'm surprised more epople on this forum haven't tried it - I started a thread with that question a few weeks ago - didn't get much response. We haven't tried it yet, but am planning to over the summer. Here is the link to that thread and some basic NAC stuff - http://www.latitudes.org/forums/index.php?...amp;#entry68459 http://en.wikipedia.org/wiki/Acetylcysteine http://psychcentral.com/news/2009/07/08/fo...lling/6963.html

My son graduated form 5th grade yesterday, he is also a baseball player (pretty serious one - wants to play MLB!). Anyhow - the end of the year there is sooo much stress on these kids, esspecially if they are playing baseball. Championship, and playoff games, - we have 4 in the next 7 days. School picnics, gaduation parties, etc..Last year my son was exacerbating (I didn't even know what that word was then..we just knew he had a non stop tic and was miserable) and he actually opted out of one of his playoff baseball games (we had an out since there was an all day field trip that day, and he would have arrived about 3 innings into the game). I was soo happy - and I think he was releived to. I was petrified they woudl put him on the mound and he would get hit with a line drive or something becuase of his ticcing. His coach last year was a real jerk, so that added to the stress. He's NEVER not wanted to play. I would never pull my son from a game if he wanted to play - if makes it seem like a punishment - but if there is a way that he could choose an option and save face with his team and himself for not playing, some excuse he could use if he chose to, maybe he would take it. Its really a hard one becuase of the team. Can't let them down, don't want to get a bad rep for being unreliable...I've been there. I feel for you and your son. Did you try advil to see if had any effect? Is his coach understanding? I would talk to him. The last thing you want is some guy yelling at him for dropping a ball or something. Good luck, I'll be thinking of you at our "tournament of champions" game tomorrow (as I watch my son re-check his shoe laces about 100 times).

Thank you Dianna and SF MOM! I am an hour or more south of Petaluma - I've been acting as my son's "general contractor" ...but should things flair again may be visiting this practice. We really need somone up here.

ps - you probably already do this, but our doc gave us scrip for lydocaine - makes blood draws much easier, but he still hates them.

This happened once to my son - the day he was going to sleep over science camp for his 5th grade class - 3 nites away. He woke up that morning ticcing like crazy - I was freaking out of course thinking it was and exacerbation, once we got to school it calmed down, and his teacher called me that night - gone.

bubbasmom, were you on prophylactic antibitotics - did the strep brak though? Just curious. thx

Dear Worried Dad, Thank you so much for sharing that happy story! Since my son's first episode happened around his 10th birthday,(and that day I remember clearly how horrible it was ) I think I will always use the birthdays as pandas milestones. I know I did this past year. I'm soooo happy for you and your son. Did you do IVIG or PEX? Do you think he is "growing out of it around puberty"? Thanks again for sharing this hopeful message.

We were going to start melatonin (or use it when needed actually) and I started ot look into and all the warning labels say not to use on kids. I couldn't find anything to say it was bad for kids, there just werent' any studies. I decided to try a homeopathic sleep aid called Calms Forte - I don't really do homeopathic stuff, its something the woman int he store recommended - but it works for us! I give my 100lb 11 year old one adult tablet (dose says 1 o 3 tabs). They also make a kids tablet. I have given him melatonin before, and I would do it again if I though he needed something more (like in an exacerbatin) but for us, for now, this is working. I do think its is milder, I've taken it my self to compare to the melatonin.

I don't know how come they keep saying it is a subset of OCD...at the AO conference Swedo said that pandas patients had comorbid OCD only 40% of the time. Choreaform movements much more common...I think that would include tics - did your son have tics? This from a post from someone at the AO conference several days ago: (although I don't know if these numbers are when kids are in exacerbation or not..we had like 7-10 different symptoms, including OCD, tics, emotional lib, sep anx..but when exacerbation died down only left with a couple.) [-- Among comorid conditions and symptoms among PANDAS patients, her top ones were ADHD (40%), OCD (40%), choreaform movements (95%), emotional lability (66%), "school changes" (60%), personality change (54%) and separation fears (40%). Sorry, I would've gotten all of them if I could've, but the presentation moved at a brisk pace, and so did her Powerpoint slide show!

At puberty either your child will get better, or ..you're too late to treat it! Thats the message we've been hearing, but I'm not sure where this is coming from. I'm very happy to see this Turkish study. Thank you for posting! Its scary and tragic, but at least we are in the time that we are, not the middle ages (or even 10 years ago). I feel we are ont he cusp of very big changes in how we treat "mental" health problems. Are there studies out there that say you CAN'T treat this after puberty? Why does Dr K's site say this? I feel like I am being forced to do IVIG or PEX because of my childs age...if I had more time maybe his system and abx, steroids would take care of it itself. He is 11...he could start puberty anytime. Obviously the Turkish study makes those of us who have a case somewhat in remission, a little more comfortable with waiting it out. I can't find ANY data on long term for pandas kids, so where does all this - "IVIG and abx not efective after puberty come from?" Just because Swedo only let kids into the study doesn't mean the disease only effects kids.. They just didn't include them in the study, they were trying to keep the strep association tight and get the closest to "onset" so show the temporal association. I understand that. What I'm irked by is the criteria for the study and the diagnosis should be two different things! Sudden onset irks me too, what is sudden? one hour, one week, three weeks? OK, I'm ranting. Sorry. We didn't have overnight onset, or high titers, and can't even prove a strep association - since 8 months had passed since "onset". The second time he exacerbated all the symptoms happened within a week of each other (thats when I realized the other stuff going on besides the tic were symptoms) is that sudden enough, or do we wait until a third time? Who's to say it isn't like allergies are sometimes. You may be be able to eat peanuts a couple times with only a hives or a rash, but the third time might kill you. Done ranting now. Thanks for listening. And thanks for that study!

I don't have time at the moment to read (and try to understand...which will take me much longer!) but do appreciate you forwarding these to me. After reading prognosis for SC patients (just a different name for pandas seems to me, reserved for the worst cases!) the potential for long term heart compications from SC is very small, so I'm thinking that for pandas kids will be even smaller. I do find it interesting though, and was hoping we could make a case for some $ from the heart association to fund some pandas research!

Did you draw titers and check for perianal strep too?

My son has one that doesn't go away either, and it involves me and my husband, but not other people. He can't stand to see or hear us swallow anything. So - you can't sleep, and I can't eat! Or swallow my own siliva without risking setting him off. I think I have the OCD now...whenever he walks in the room I feel the need to swallow!

Thanks Kelly and Tenacity, Tenacity, I'm very sorry to hear about your child's condition. I am definatley not getting any more vaccines, flu, DTP or otherwise for my pandas son. Hope your son is improving. Kelly - I will dig back into the foum archives to see what I can find (I'm somwhat new) Thanks for sharing what your pandas docs have told you. Unfortunately I can't download the whole cunningham study, but I do find it interesting that pandas kids (actually, the kids in this study WERE NOT pandas kids, they were kids that develped a tic after a strep infection, so some may have had pandas) have double the number of abnormalities, althought the abnomalites are somewhat "normal" . I suddenly developed a murmur 4 years ago, and after a year it got better - very weird - and also nothing t0 worry about according to my doctor, so I know what you mean. Also, in rereading the conclusion I see that the abnormalities decrease with time (see quote below). So, maybe nothing to worry about, but somehting to keep in mind. "Conclusions The higher rate of echocardiographic abnormalities observed in patients with tic disorder and exposure to group A beta-haemolytic streptococcal antigens, together with their decrease with time, suggest a post-streptococcal pathogenesis."

Someone out there can correct me if I am worng, but think that High Cam K II was connected to SC before pandas. And the big thing with SC was avoiding Rheumatic Heart condiditons - which is why they started (way back) to prescribe prophylactic antibiotics to SC patients right?

SFMom, Thanks for forwarding that link. I can't believe no one is talking about this and we aren't getting our kids hearts checked out. I haven't been to a pandas expert, do they check out the kids hearts (echo or anything?). They must know there is a connection between high CamK and heart issues. Do they give any gueidleins or things to look for or yearly tests our kids should have? If IVIG and PEX are controversial treatments for the neuropsychological symptoms, maybe doing it to avoid heart damage would be more accepted to insurance and the entire medical community. (that is id there is any improvement with kids hearts after these treatments...) Another eason we need some longitudinal studies...I wonder how all those original pandas kids, now adults, hearts are...I wonder a lot about them, and now have another question to add to the list.