dut

Our dd's intrusive thoughts were things like "if I don't whisper in the corridor on the way to bed I will die", "if I don't do this Daddy won't come home" and our particular worst one "parents let there little children run away". The way I see them is that we all get a billion random thoughts each day but our brains select the good/correct and dispel the bad/wrong. Not only that but we do it subconsciously and very quickly. I think that with intrusive thoughts the child gets stuck on an idea and can't dispel it. The bad/wrong ones stand out more to parents and maybe the child is having more of the bad than good because of increased general anxiety. This is just the way it seems to me. Thankfully, we haven't seen those this tiome around..just a small exacerbation....

Hello. Our dd is having a minor exacerbation. (She had no obvious strep throat symptoms, instead presented with a cold and no sore throat but 4 days into the cold ran a 103 fever and vomitted out of nowhere. The sudden vomitting seems to be the warning signal for us. We had been seeing low level behavioural changes, mainly just anxiety, OCD, some separation stuff and thought maybe it was just in response to the cold. Anyway we all got swabbed at the start of the cold before the fever/vomit and we all came back clear. 3 days later I get a letter from my dr saying I'm positive for strep! They gave me the wrong info on the phone. I go ballistic with them.....) Anyway... during her one and only "bad" episode in April/May she complained that in bed at night before she fell asleep that things were moving away from her. For example, my face as I lay next to her felt/looked as though it was moving away. Because of everything else going on at the time we never tracked it and I'm not sure when it went away but it did. Again, tonight she has the same sensation/visual disturbance and says it started the night she vomitted. It's obviously PANDAS related, we were just wondering if anyone else had encountered it. Thanks.

Yep, my dd is super loud too!

Hello Have you thought of omega 3 for it's anti-inflammatory effects if your not already using it..here's a quick link http://www.sciencedaily.com/releases/2006/...60404085719.htm loads out there if u do a search.. everyone probably knows this already but thought it worth a mention. We try and avoid omega 6 as there would appear to be more than sufficient in most diets and it has a pro-inflammatory effect and add in a good quality omega 3.

oops sorry repeat post

In response to the tic part of your question, one of the last symptoms to go with our dd was a sort of facial grimace and noise she did.. not totally convinced it was a tic but we think it probably was. Also PANDAS symptoms can go without antibiotics. Our doctor's last and only other PANDAS patient presented to her after the active part of the strep infection and so was never given antibiotics but symptoms faded over a 6 month period, I presume as the inflammation went away. Whether it came back or not, I dunno... Buster- thanks for your link re titers but I meant another post. I'm just not very good at being clear in posts :-) sorry. I still can't remember who but they posted a link to a talk by a doctor who when doing blood tests does titers but looks at (I think)7- 9 different values, not just ASO and DNAase B. If memory serves me right, he said that this many was needed as different strains produce different proteins. I've probably got the explanation wrong but he said titers could still be elevated but drs not checking the right ones and that you can't rule out PANDAS or elevated titers with ASO and DNAase B alone. Hope someone remembers which dr it was and the link.

Hello Our 5 yr old dd had sudden onset, severe ocd and behaviour changes and mild tics in April 2008. 1 week later she tested positive for strep throat. After 2 weeks of amoxicillin she was at say 15% symptoms. At the same time she had her ASO and Anti-DNnase B titers done. They were not only normal but very low. If we looked at titers alone she isn't PANDAS but based on the diagnostic criteria for PANDAS which doesn't call for high titers, our dr's and our belief she is PANDAS. This was reinforced when her symptoms started to return with a perianal strep infection. After treatment with azithromycin she has been symptom free for 3 months. I remember someone posting (but can't remember who, sorry) a link that talked about titer testing and said that ASO and Anti-DNase B alone were not enough that there are more that should be tested for and that you can't rule out PANDAS without these. Hopefully, whoever posted that can repost or point to the original. The Swedo paper on antiobiotic prophylaxis also talks about titers being blunted by early initiation of antibiotics.

Hello. Our 5 yr old dd has had 1 bad PANDAS episode, a small relapse shortly after that one and, with hindsight, possibly 1-2 earlier milder episodes. I can't answer on the memory problem, she was just very foggy in general during the bad episode but can answer regarding remission. She is currently, totally symptom free. She had a 2 week course of amoxicillin which seemed to do the trick and got her to about 10-15% or so of symptom level followed by a symptom increase with a perianal strep infection treated with azithromycin. She then gradually tapered down to no symptoms over a 3 month period. She is once again her normal happy self, all OCD, behaviour changes and tics have gone and while the tics were mild the OCD and numerous behaviour changes were severe. She isn't currently on anything except vitamins but we will be adding some anitbiotic back in prophylactically in time for "strep season". Our doctor has been happy to do this and says she will let us know when she starts seeing strep ramp back up in her practice. We were worried about being permanently on antibiotics but still can't decide if we're making the right choice not having her on them.

caryn yeh i was just passing it round as an idea. jtp didn't mention which strep test it was and as both cultures and especially rapid strep tests can show false negatives thought it was worth raising.. not wanting to jump on a PANDAS band wagon but the symptoms (including stomach pain and hives) so closely resembled those exhibited by my PANDAS daughter, I didn't want it to slip by.

Hello I was just wondering if instead of the amoxi causing the problems, might it have been what you were treating with the amoxi. Strep could have caused the original symptoms and then also the neurological ones after. There can be a time lag for the neurological symptoms to show up. Maybe the amoxi didn't clear the infections and the strep is still hanging around or maybe antibodies are still high? Maybe you son is getting re-infected. Our dd (PANDAS) has stomachache associated with strep and also now gets itchy heat rash, although she did also get a toxic reaction (not allergic cos we've since had her tested) to amoxi. Strep could also account for the headaches. Certainly, in my experience, the emotional changes could all be explained by PANDAS. Could your son be PANDAS? Just a thought.. dunno what others think...

1. In retrospect, at what age do you believe that your child's PANDAS/PITAND began? 4 possibly 3 2. At what age did your child begin to speak? very first words 9 months but talking properly so others understand by 18 months 3. At what age did your child begin to draw recognizable objects (e.g. faces, vehicles)? 2 1/2 4. Has your child had food allergies? To what? milk (gone now) and cashews and pistachios 5. Does your child have changes in bowel function during a PANDAS exacerbation? during 1 of them yes.. we believe she had perianal strep then too 6. Does your child have joint hypermobility, i.e. can he/she touch his/her thumb to the inside of his/her wrist (ok to pull on it to check, but not to the point of pain)?no 7. Do you have joint hypermobility? no 8. Are there any mental illnesses in family members (not necessarily immediate family)? What are they? Mother's side, or father's? no 9. Are there any autoimmune diseases in either the child or family members? (e.g. asthma, rhematoid arthritis, thyroiditis, eczema, psoriasis, ulcerative colitis, lupus, etc.) thyroiditis, chrone's (sp) rheumatoid artyhritis 10. Does your child have trouble with the stitching in his/her socks? If so, is it worse during a PANDAS attack? yes, socks since 3 yrs old and during her 1 really bad episode would only wear maybe 2 tops and 2 trousers cos of feel 11a. Does your child have panic attacks? no 11b. Is your child, or has he/she been, very separation anxious? only somewhat during the bad episode 12. Does your child tend to "overreact" to medications, particularly SSRIs, thus requiring dose adjustments below the typical range? not been on meds so don't know 13. Does anyone in your family have mitral valve prolapse? no 14. Does your child have any particularly striking "gifts", talent-wise? verbal early on with v good vocab 15. How would you describe your child's "regular" personality? demanding as a baby sleep wise and attention, now - conscientious, kind, stubborn, funny sometimes testy , aren't we all tho :-) and can i just say how relieving it is to read an adult's story of PANDAS and that it isn't some sort of life sentence.. thank you.

Just a quick response but have a listen to the lecture posted by mustang carole on 28th july 2008. This doc reckons you can't rule out PANDAS unless u do a full panel which includes aso and dnase but also 3 other enzymes produced by strep and three of the M proteins...

Pudgeo.. I certainly feel the same about drs not knowing. I feel as though we are making a lot of these treatmant decisions in the dark. We have been very lucky in that we appear to be symptom free and when I think how bad it was, it was truly heartbreaking to see our daughter. So I do feel for those parents still in the midst of it almost left to treat based on their own research. It almost feels surreal to us now, it came so hard and fast and went so quickly, I worry we have become complacent. We just didn't want her on full time antibiotics if we could avoid it.. perhaps only using for strep season.. we hoped. I'm not so sure after this bit of a scare. The fear has come flooding back. I do agree with other posters about you pushing for antibiotics. They really do seem to do the trick for so many of these children. My best wishes are with you and all other parents seeking answers for their children.

We weren't on antibiotics to control symptoms but to ward off new infections as our ped said strep was still rampant in our area well into late spring /early summer, and her symptoms had already diminished. As we hadn't really had much of a break since her first episode tho' we wanted to come off them to see if we would have a return of symptoms and for the last 2 weeks we saw nothing , apart from the last 2 days and that could be me just seeing ghosts everywhere and she just be being a normal sometimes defiant/moody 5 year old. I think we'll swab. I'm reticent to go to the ped's unless we have to 'cos if you don't go in with something you seem to walk out having caught something. thanks.

Hello. Our daughter is PANDAS and came off prophylactic antibiotics 2 weeks ago. She's been symptom free for a while. Last week her friend vomitted in front off her after them spending an hour or so together. Today we learn it's strep. SOur dd hasn't got a sore throat or anything like that altho' she has been more naughty than usual these last 2 days. Her PANDAS symptoms are ocd and behaviour types so bells had been very quietly ringing even before we knew about her friend. Just not sure whether we should be swabbing or whether i'm being a bit paranoid here? I was just wondering what other PANDAS parents would do? Thanks.

Hello Did wonder if you were not seeing improvement as titers can still rise after the infection has gone or maybe it would be worth trying suprax again.... I've read that there aren't supposed to be any Pen resistant strep A but who knows... good luck

I've read that 6% of children that get strep throat get perianal strep which can be very difficult to get rid of. Symptoms may not show as the strep takes up residence within the anal passage. Even "normal" perianal strep can take much longer courses of antibiotics and sometimes more than one course to be eradicated. I wonder whether in some of these children we are seeing an ingrained infection that isn't being got rid of with normal levels of antibiotics. They don't have strep throat but maybe have it lurking asymptomatically somewhere else. I know this is anecdotal but we have a family friend who was very ill for 3 years with seemingly inexplicable heart and lung problems. Early on in his illness he had been given a number of courses of antibiotics for throat infections. After a lot of going round the houses it was finally determined that he had a low grade but resistant infection. He was put on a cocktail of 3 antibiotics at high doses and all of his symptoms resolved.

Hello. Our now 5 year old dd had on/off sore throat and cough from Sept but dr kept saying it was just viral. 1st minor episode she stopped wearing normal socks 'cos of seams and had some low level mood disturbance. The mood stuff went away after a couple of weeks and at the time we thought nothing of it. 2nd episode also went under the radar, she had vomitted and 2 weeks later started asking questions about food contamination but only a few a day. Looking back she had vomitted just before the 1st episode too, suddenly and violently with short duration and no other symptoms. We now wonder whether that's her response to strep toxins?? Her 3rd episode was when alarm bells rang. Within 3 days she went from normal kid to very pronounced OCD. She had extreme fears of contamination and was handwashing. We recognised it as OCD and after lots of googling and finding PANDAS we had her at the drs a week later. Our dr had seen PANDAS once before. Her culture came back positive and she had a 14 day course of amoxi. 1 week into the course she was much worse and was being inattentive, hyper and crying at the slightest thing. She was now only willing to wear 2 tops and two very old and soft pairs of pants and seemless socks. She was extremely oppositional and downright mean. It was if another child had come to live with us. She became clumsy and had started some facial grimaces and grunt type tics. Her OCD and general anxiety were really bad. Her eyes had gone from those of a 4 year old to an adult. A week later though symptoms were down by 75% and continued to sawtooth for another week after the end of antibiotics. Over the next 2 weeks we went down to maybe 3% of original symptoms. We then went on azith 250mg once/week 'cos our dr said strep was still bad in our area. 2 weeks in we saw a rise in symptoms this time with a very sore bottom.. we now think it was perianal strep. Azith was upped to 500mg once /week. Sore bottom resolved in 24 hours (before we swabbed it of course!) and so did symptoms. We are now symptom free and have been for 4 weeks. The only symptom that remained was sensitivity to clothing but that has slowly lessend and she is now back into most of her clothes. We stopped antibiotics 2 weeks ago and so far no return of symptoms so we will probably keep off until strep season returns. We give her cod liver oil, multivit, cal/mag, probiotics and monolaurin. She was tested for gluten sensitivity, inflammation CRP and ESR, ASO and DNase (sp) and thyroid. All came back normal even the strep titers. We are considering further testing but feel like letting her enjoy this medical free time, she very quickly became a medical case not a child even to me, in fact, perhaps most to me and I don't want that for her or the rest of us. We've been lucky in that symptoms are gone but obviously don't feel as though we've seen the back of it. My heart pounds if someone coughs next to her,I feel like taking them down SWAT style :-)

Hello Can't comment on your original questions but re the cough... I have read recent research that did a blind and placebo controlled study on DM (dextromorphin sp?) cough syrup and buckwheat honey and the buckwheat honey won. Parents and children reported much less coughing and night wakings using the honey than those using the DM cough syrup. I can't rememer precise dosage but something along the lines of 2 tsp before bed. You could google it.. worth a try and not meds at least. Dut

Hello Sorry to hear of your troubles .. here's a link to another topic on this forum that talks about testing for strep http://www.latitudes.org/forums/index.php?showtopic=1053 If for any reason it doesn't work go to the top of this forum and look for the pinned topics. Our daughter has PANDAS and we always ask for a culture rather than a rapid test as we have been told they are more reliable and even the culture can miss it. A nurse practitioner told me the cultures are about 80% accurate. Don't know where she got the figure from tho' Good luck.

Hello Just thought I'd put this link out there for those using zithromax for PANDAS or considering its use. http://jpet.aspetjournals.org/cgi/content/abstract/292/1/156 It's the abstract from a paper that looks at the level of immunomodulatory effects of 4 macrolides. Looks as though zith comes low down compared to others, especially roxithromycin. I dunno enough about the science to comment tho'. Thanks

Hello I was wondering if there was anyone in the Seattle area that had heard of or even seen Dr Wright (DAN) or anyone else at the Tahoma Clinic in Renton. Thanks, Danuta.

Hello Meg's Mom, how long are you finding an episode lasts? Our 4 year old daughter has just come through her first episode of PANDAS - she went from very bad OCD + lots of other behaviors to virtually symptom free for 2 weeks after 14 days amoxi. It then ramped up again recently and has sort of sawtoothed through the last 10 days. We have no culturable strep at the moment and can't decide if this is still recovery from episode 1 or episode 2 or what? Our mood has gone from rock bottom to elated to constant low level fear of what's next. Trying to get a hold on prognosis is so hard. Thanks, Danuta

Hello Just when I thought I was getting on top of this.... we had to take our daughter back to the ped's as her PANDAS symptoms are on the increase again and she has a cough. We saw a different dr as ours is on holiday and he was looking back through the notes and he said she was never positive for Group A .. I said our ped had said we were etc etc.. It seems as though she came up positive for beta-hemalytic strep but not Group A (that was how the lab report worded it)and yet she responded so well to the amoxi.. totally resolved within 2 weeks to a baseline of very minor, residual symptoms until just this week. Has anyone else heard of PANDAS ever being dx in association with any group of strep other than A? Thanks, dut

Hello I was wondering if anyone can give me their opinion on the safety or otherwise of me receiving an MMR vaccine while breastfeeding my 9 month old son and any effects it may have. I'm aware that a study has shown that 56% of children tested following maternal immunisation with MMR had positive results but ( supposedly) only 1 child developed an infection. Not sure where these figures came from or size of study just figures quoted to me from a lactation nurse. I'm assuming that the assault on my 9 month old's system will be very different via breastmilk than it would be if he himself got the shot. I would normally not be getting vaccinated but need it for greencard process and am more wary than normal over vacs as our older daughter has just come through her first PANDAS episode. She isn't vaccinated and neither will our son be but hadn't counted on this being an issue but greencards won't be issued without full immunisations. I got titers done hoping I'd be immune but came back neg for measles. I'm hoping to do measles as standalone if possible. Any help would be very much appreciated, or if anyone knows a good greencard lawyer who might know a loophole :-) Thanks, Danuta