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Hello - (I usually post on the PANDAS side but thought here may be the best place for this question) I am looking at trying the enzyme supplement No-Fenol for my ds3 who may have a salicylate sensitivity. At the moment I/we don't have the energy to try a full Feingold type diet but I thought I could try the No-Fenol as I have heard good reports on it helping those with a sal. sens. to better deal with it if they can't go totally salicylate free. I was hoping that a good response may show us if we need to do an elimination diet. So.. my question is - 'cos he's little and can't swallow capsules.. is it the sort of enzyme that is safe to be opened up and sprinkled on or mixed in food? I'm aware that some enzymes are too strong to do that with and didn't know if that applied to this one? thanks for any info anyone can offer :-)

hi - sorry no idea on the supps front but thought I'd mention lupus 'cos of the nose/cheek rash (malar/butterfly rash) and the possible joint pain.. but I guess you're aware of those already but thought it worth a mention....

Hi - we also find that more isn't better. I use .5mg for PANDAS ds3 and that will get him to sleep and keep asleep for 3 hours or so. He still wakes 6+ times a night after that regardless of how much he gets. We even tried a spray tiome release but it won't keep him alseep. PANDAS dd7 uses it to get to sleep fast, Again it doesn't stop her 1 wake a night (to get in bed with me and ds) and more makes her have very vivid and sometimes bad dreams, so is counterproductive. The longterm side effects that I have read about and worried me was gynacomastia - the abnormal development of large mammary glands in males resulting in breast enlargement and also sperm amount and motility. Here's a study and a couple of generic site type thingies looking at side effects.... http://www.andrologyjournal.org/cgi/content/full/23/4/572 http://www.ehow.com/about_5116334_negative-effects-melatonin.html http://www.umm.edu/altmed/articles/melatonin-000315.htm We still use melatonin but try to use the lowest dose we can get away with....

SF Mom - were the myco tests that you did for yourself and your children, IgG and IgM or did you do PCR on blood? I'm aware that the Igs can show false negatives and am trying to get a handle on how reliable the PCR testing may or may not be... thanks... (Feeling more convinced that dd's underlying issue may be myco but both PANDAS kids negative on Igs but I'm positive for IgG)

Hi - it is my understanding that although many drs will read a negative IgM and positive IgG as a past NOT current infection, that, especially, in older adults (40 or older) that this may mean a reinfection. So you can have a current infection without a rise in IgM. http://jcm.asm.org/cgi/content/abstract/30/5/1198 Also mycoplasma can indeed go intracellular and like Lyme they are stealth pathogens, (myco - pneumoniae, fermentans, hominis and others) so you may have one and not be producing anitbodies at all. A better means for testing is to do a PCR blood test. I e-mailed a doctor who has been studying the role of mycolplasmas in CFS/Gulf War Illness and other chronic disorders, Dr Garth Nicholson, and he was kind enough to mail me back with the name of a lab that he feels is equipped to properly test for mycoplasmas. In his opinion, one of the few such equipped labs in the country. http://www.vipdx.com/ VIP labs in Reno. He also said that in lectures held at NIH, mycoplasmas have been implicated in 25% of PANDAS cases. In GWI and CFS, mycoplasma fermentans has been shown to be the culprit and in many instances people are positive for more than one mycoplasma type when chronic illness is present. I came back positive for myco p. on IgG and am increasingly feeling that myco may be our issue. We are exploring, with our ped, going through VIP labs to do the PCR testing with both kids (both PANDAS dx and both negative for myco but dd often presents with longterm cough with PANDAS symptoms). I'll report back when/if we find anything out.....

Hi - did the LLMD check your dd via IgG and IgM or did he/she do a PCR test? I'm reading that, just like Lyme, myco is a stealth pathogen and you can have it but again like Lyme not be showing antibodies to it.... in my lay terms, I believe a PCR test 'smashes open' the cell and looks inside for the myco itself rather than looking for the body's defenses against it, antibodies. If I got that wrong, anyone, please chime in :-)

Hello. I was wondering if anyone can answer some questions for me..... Is it true that in subsequent myco infections the IgM doesn't always become raised (I've come back raised for IgG but not IgM but have read that that doesn't necessarily mean it isn't a current infection)? Has anyone had negative results for IgM and IgG mycoplasma pneumoniae but had a positive come back by PCR testing either blood or swabs? Has anyone tried looking for other variaties of myco such as fermentans, hominis etc? (fermentans is one of those implicated by some in Gulf War Syndrome). Thanks for any info you can offer :-)

talking of wikipedia.. could we get it changed so it IS a good reference for people.. I admit I'm a luddite and so don't understand how these things get changed but I imagine wikipedia is a starting place for many people and it would be great if it were accurate, up to date and lost the "controversy" bit. how could we make that happen.. could one of us do it or maybe get one of the pANDA sexperts on board? dunno.... (oops.. I was gonna correct my typo in the previous sentence but thought it was too funny to change :-)

hi - only read your post quickly but the reaction to 'all foods especially fruit' makes me wonder if you should investigate salicylate sensitivity. It is in many foods and so can be a difficult one to eliminate. Some kids don't have to elimante all foods containing it but can do a modified diet after doing the elimantion diet. You want to look at the Feingold diet.. and maybe (this is what I am considering doing for our son as a test 'cos the idea of doing the full salicylate elimination deit is too horrendous for us) try an enzyme called No-Fenol that is supposed to give a lot of relief for those suffering with salicylate sensitivity. hope you sort it all out.. good luck ps you can find lists of low/med/high salicylate foods on the internet.. it might be interesting to compare what your child can eat without reaction to one of those lists...

no that's great thank you, any reference is better than "I seem to recall" thank you

Hi - I was wondering if anyone had a reference for the cd 57 not being reliable in children. we have just drawn blood for both my kids (3 and 7) and myself for CD 57. thanks.....

Here's my happy dream.... (I have a dream..) this guy gets told about PANDAS, goes on to do very well or win Amrican Idol and prime time TV shows his amazing journey from intractable Tourettes to treatable PANDAS... 60 million folks get PANDAS exposure .. think I may start voting if he gets through the 1st rounds :-)

Hello This seems to be where we are at the moment with our dd7 (dx 2008). Prior to this she would flare in response to various illnesses and last year seemingly in response to all illness. We haven't got back to 100% after that, although each time previously we did. Thing is that now she will get a small PANDAS flare when ill. Like you, Pandas16, sometimes it comes before, sometimes after but goes away just as quickly and we go back to our 95% or so baseline. This also seems to be the new pattern for our ds3 (dx 2009). He also used to flare and then take a long time to remit but he also seems to ramp with illness but ramp back down straight away after. This current illness he has (some stomach thing) may be another turning point.. we haven't ramped down and it's been a week or so but he may still be a little ill. I'm not sure what has changed for them both. Why our dd hasn't remitted fully following a string of illnesses at the beginning of last summer and why they both seem to ramp when ill but get back to baseline so quickly.. hope the latter lasts....

Hi 0 when our dd got her diagnosis 2-3 years ago, I spoke to Dr Leckman and he mentioned a drug, available in Canada and UK but not US, that acted as a dopamine agonist.. can't remember the name, don't think it was one of those on the list.. He said that it could possibly be used for PANDAS patients. I'll have to go check my notes.. will post it if I find it.. wonder if that was the one?

Hi - I tend to agree that this isn't archaic.. it may be a bit yucky thinking of downing a few hundred worm eggs as your treatment but hey if it works I think I may take that option over drugs or pooled blood products.. dunno? It has certainly been looked at as treatment for Crohn's, asthma, allergies and now, according to the following article, for Type I diabetes. http://www.diabeteshealth.com/read/2010/04/12/6639/parasitic-worms-could-become-basis-for-type-1-therapy/ I suspect as a treatment it comes with its own set of issues, as they all do, but I get the hygiene/autoimmune hypothesis and can see where this would fit in with that.

thanks for the suggestions.. we are slowly trying exposure. She's very good really 'cos she offered to go back to starting the night in her own bed about a month ago but we have stalled since. My worry that it is still low level flare and not learnt is that as she gets tired toward evening she gets frightened.. it feels organic and not learnt/psychological 'cos the fears aren't the same focus.. it's nebulous fear and then she will alight on somthing to pin her fear on.. if that makes sense. And during the night she kinda wakes in a night terror state.. awake but not aware minus the terror but with a lower level of fear or anxiety and is in my room sort of before she is aware of what she is doing... i don't know...probaly just greedy and I should be, and am, thankful for where we are. thanks again, I'll talk to her and see if we can devise a plan for moving out. Cuddly toy bribes work well with muy dd.. we'll try that as an incentive :-)

any ideas? :-)

Hello I was hoping for some guidance on what to do next (if anything) for our dd. I have a dd7 and a ds3 both with a PANDAS dx. Ds is doing fine.. some low level sensory, still an awful sleeper and spirited :-) but fine. My dd is my concern for the moment. quick history - dd was neurotypical until march 2008. Dd was dx in April 2008 following onset of sudden and severe OCD, tics, choreiform movements, emotional etc etc.. very classic. Positive for beta hemolytic NOT group a strep. She responded beautifully to amox and was at 30% symptoms after 2 weeks and in total remission by 4 months. She was put on proph abx (zith). Since then she has had 1 more major episode that didn't respond to abx but remitted fully with time, about 5 months. Another episode was going full blown but was stopped in its tracks within 12 hours with steroids. She had a few minor flares in response to various illnesses but nothing major until last Mar. She had 3 back to back exacerbations with full remission between the first two. The last one was too much for her system and she went full blown with OCD, anxiety, oppositional behaviour etc. Steroids got rid of all of her OCD within 12 hours of the first dose and calmed things but we dealt with fears and oppositional behaviour all summer. At the end of summer we tried a course of augmentin to get rid of the last symptoms. Within 3 days the oppositional behaviour had gone but 5 days later she developed serum sickness in response to the abx. She was very sick for 3 weeks and even hospitalised at one point. At this point she was taken off all abx and to date hasn't gone back on. Unlike last year where she flared with nearly any illness, this school year, whilst she has had 4 colds and a couple of tummy things and I've noticed a whiff of PANDAS at some of them, nothing has stayed beyond a couple of days. My problem is that we still struggle with a kind of general anxiety thing.. mainly at the end of the day when she gets tired and she'll start the night in her own bed but has to come to my bed during the night. She is doing well at school, happy, social and other than the night time thing, is doing very well. I am so happy to have her at this 95+% level but in the past she has always remitted FULLY. I'm not sure what's different this time. Is it a low lingering infection, an open BBB, learnt behaviour? As she is doing so well otherwise I am loathe to rock the boat but am worried that this will become her new norm or baseline. If this were just her personality then ok but it's not, it's been imposed on her by her disorder. I would love opinions on what I could be doing.. She is NOT on abx currently and can never take penicillins again and shouldn't take cephalosporins either. She takes omega 3s, probiotics, good multi and mineral, b vit complex, vit d, enzymes and ala. Sorry for the long post and thanks for any advice.... :-)

Hi - at recognised onset, our dd tested +ve for beta hemolytic NOT group A (but we think we just missed the Group A). She also flared badly when she had flu, probably H1N1 but not definite. What seemed to be common colds have caused exacerbations, as has an acute allergic repsonse to a food. We believe the initial trigger was strep but now it seems as though, depending on how full her immune system "glass" is, she will exacerbate in response to virtually any immune provocation.

Yeh,our dd was like that.. she went to bed on the sunday night and woke a different child on the monday. With our ds, as it started so early for him at 7 months old, it has been difficult to unravel what is his personality and what is PANDAS. Now that we aren't in almost permanent back to back exacerbatiosn for him, I can see the real 3 year old and can now spot what's him and what's disease. Having 2 kids with this, I am realising just how different the presentations can be... I'm a firm believer that not only is PANDAS/PITAND/infection-driven-behavioural-and-neurological-changes (whatever we chose to call it) not rare but almost common.. not the norm obviously but I believe that so many kids go under the radar because their presentations are so much milder - maybe some behavioural stuff or a transient tic or two.

Hi Our dd was 4 nearly 5 in 3/08 when she had her 1st recognised episode. She was dxd 4 weeks later. We now realise she had shown soft signs earlier. She has a classic PANDAS presentation - OCD, some tics, some choreiform movemements, sensory issues, lability, defiance etc etc. Sudden onsets and slow but full remissions (until this year when we are seeing some very low level issues remaining such as nighttime fears and late in the day anxiety). Our ds was 7 months old when we believe he had his 1st episode at the same time as his sister's 1st recognised episode in 3/08. He was dxd at 26/27 months old. His symptoms are more nebulous. Disturbed sleep, seperation anxiety, sensory issues, stuttering, some OCD type behaviours, possible tics as shirt sucking etc can be tic-like I've been told, behaviour problems.. lots of stuff that could be put down to teribble 2s, 3s etc but just very extreme. He could have easily gone under the radar as a difficult child had his sister not been his canary. He also tanked with illness and then took weeks to remit. Both kids came off proph abx this Sept following a very serious serum sickness that my dd had in response to Augmentin. She was ill for 3 weeks and at 1 point was hospitalised. It so freaked my dh that he insisted they both come off abx. I had been toying with the idea prior to this and so went with it. So far so good. Until then both our kids would react to illnesses in addition to strep. My dd was reacting to everything at that point.. even slight colds. My ds would react and take ages to remit to many but not all. Both have had 4 colds and 1 stomach upset since Sept and even though I've seen signs of PANDAS in both.. increased anxiety for dd, increased hyperness/aggression for ds....both have gone back to baseline nicely as soon or even before their physical symptoms have disappeared. Spotting PANDAS in young kids can be really difficult as so much can be called "normal" behaviour but if it feels wrong, then I've learnt to trust my gut..... good luck....

but maybe one day could be used for many diseases even PANDAS.... really interesting bit is that they've developed a way of finding antibodies without having to know the antigen first.... really interesting reading.. http://www.physorg.com/news/2011-01-scientists-groundbreaking-technology-alzheimer-disease.html

Hi - my family feel my pain but don't get the science. Why would they? They haven't spent hours reading and re-reading every little scrap to be found on PANDAS and anything vaguely related. My husband would get the science and certainly gets the pain, that's why he knows what we are dealing with but leaves it all to me 'cos it's too painful for him. That leaves my local pediatrician, who I see regularly and who gets the pain and gets the science and really does seem to understand the toll this awful disorder takes on the child and the family. That's why I usually blub like a fool in the car when I've been to see her 'cos it's like therapy for me. It's a release to talk to someone who doesn't think you're a delusional, munchausen-by-proxy nutjob! PANDAS isn't clear-cut, nor easy to treat, and people really just don't get it until they've been so close to it that they've ate, slept and breathed it. And who would willingly get that close to PANDAS. I went through a period where I wanted to educate the world. Now, for my own sanity and to best protect my kids, I shut up. I hope that one day, I'll have enough time and be brave enough to be vocal again. I am in awe of those parents who are strong enough to support their own children and advocate for the rest.....

Hello - also you might want to consider sensory processing disorder which, in our experince is high up on the PANDAS symptom list and the result can look a lot like ADHD. I had it explained to me that while they are trying to integrate all that sensory stuff, made difficult by the PANDAS I believe, they find it so much harder to focus, concentrate, do as told. Even the running, bouncing off walls behaviour can be sensory as they find it easier to be in motion than to be still, especially if dealing with vestibular issues. Sensory issues came hand in hand with PANDAS for us and when we totally heal from each PANDAS episode the sensory issues go away too. There are ways to cope better with sensory issues that may make life easier during an episode. I'm not an expert but there are many posts on the forum if you do a search and some very knowledgable folks too if you ask some questions.... good luck....

Sorry I can't offer any advice just my experience. I had a pacifier until I was 5 ish. When it was taken away, I started to suck my thumb and was sucking uintil about 35 years old when I was started on thyroid replacment meds for low thyroid. I couldn't get to sleep at night unless I sucked and at times of stress or fatigue it was a huge comfort and would instantly transport me to a place of peace! I sort of miss it in fact. I still find myself sucking out of habit sometimes but it doesn't seem to hold the same power to calm me. My front teeth did suffer somewhat, I do have an overbite. It never felt compulsive but I guess it must have been. I also used to be an avid nail biter (in same category as trichotillamania and skin picking, I've been told). The biting and urge to bite also stopped when the thryoid meds started. I know that thyroid problems can cause OCD, so maybe it is an OCD thing but I wouldn't worry about it too much, you've got bigger fish to fry. Perhaps limit it to certain times if you feel the teeth are suffereing.. I just know I got immense peace from sucking and I was only experiencing normal/average levels of stress. I imagine a PANDAS child, with all that they have to deal with, might find it very soothing.. good luck..