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Hello For us it was pretty obvious cos she had been on the pen for 8 days which is the classic timeframe for this to start when she came out in many hives and full body swelling. The hives didn't come and go tho as they should with a type I anaphalaxis type reaction but coalesced and turn into bruises. She also had some major redness and swellling on her elbows and knees. this got me really scared cos of RA. All this was within 24-36 hours. They did work her up for RA but all was clear. Then as that subsided she started with bad joint pains... Wrist, knee, ankle and had that for about 3 more weeks.. Sometimes bad enough so she was unable to walk. We had to piggy back double dose zyrtec on full dose benedryl and pain killers to keep her comfortable and somewhat mobile. If the end of the dose for all three happened to fall together, she would be in a lot of pain. It's called a type III hypersensitivity and is more usual with old serum type vacs and I think cephalosprins.. not sure about that bit but can be seen with penicillin also. Not super common but our immune dr sees about 3 odd cases a year. Lookning back a bad reaction to amoxicillin by our son was also probably serum sickness.... He did the hives to bruising with full body swelling .. That's the vasculitis bit.. He didn't complain of arthritis but he was only 18 months or so and was super miserable for a long while more than u would expect with a type I anaphylaxis allergic reaction.... Our immune dr thinks that it is a similar thing going on as with the common amoxy rash.... Infection and antibiotics at the same time, probably viral, and the body gets it wrong and acts as though the abs is the infection but who knows.... Not much out there on it I believe, immune complex deposition is often seen in autoimmune diseases...

Hi ...sorry for typos not on my pc :-) Immune complexes can also be formed by things other than infection..such as penicillin Our dd had serum sickness due to augmentin, it lasted 3 weeks and caused bad arthritis and vasculitis... The body sees the penicillin and forms antibodies and the immune complexes get deposited just as they would with other antigens... The 3 week time frame is usual for serum sickness and I suppose other stuff if the source is removed as antibodies have a half life of 20 days or so.. Hope you get it sorted out....

Hi - does his food ocd include drinks/liquids... can you push those and hide stuff in them. My ds was a really picky eater for about 18 months that I believe was all PANDAS related (along with the "can't eat it if it's been broken".. like crackers and cookies) and I could give him more smoothies/shakes etc to make up his calories. What he did eat was good, like meats and fruit, but if it hadn't of been I reckon I could have hidden vits in there and other stuff too....

Hi - I've pm'd you :-)

Hello. I was just wondering if anyone's child either has or was determined a possible/borderline phenylketonuria or hyperphe. Another rabbit hole to explore with our dd :-) Thanks....

HI - so sorry your dealing with this (we also started young with our ds). Not had time to read all the replies so not sure if someone else has mentioned this but I have you considered Lyme as a possibility.. could the bites be ticks or some folks believe Lyme can also be transmitted by mosquitoes. Not saying this is Lyme but thought it worth a mention as some have found Lyme to be a factor with their PANDAS. Also how many of the symptoms occur when your son is asleep, just woken up or falling asleep. We get night terros here when in an exacerbation and the child appears to be awake but isn't really. Hope you get the help you need.. good luck....

Hi - 2 things really there's no way I reckon I could chew gum that other folks had chewed, don't consider myself OCD tho' just seems too gross, it would put me off gum too kids that are allowed to chew gum during tests tend to do better... can't remember why the article said this was but they also linked loss of your own teeth to increased dementia 'cos you chew less, even with dentures..... something to do with activating that part of the brain above the chew site....

Hi - my dd7 has a PANDAS not TS dx but she had an arm tremor as part of her dx when she first presented. It was in both arms and I was told it was a sign of excess dopamine which is dysregulated in PANDAS kids... Not saying your child has PANDAS but if it isn't a common symptom in TS or transient tic disorders, you may want to consider an infectious cause... just a thought.. good luck

Hi - we "had" friends that did this to us too.. my PANDAS dd7 can react to any illness and our 'friends' were aware of this and would say yes they were healthy only for both kids to be coughing and spewing phlegm when we would meet up. The final straw was when they came to our house for a xmas thingy 5 days before xmas. Another family with small children were there too. After an hour or so and we were sitting down for food the father announced he didn't want to eat 'cos he still felt ill.... ill? Both he and their kids had been vomiting the day before - great, thanks. All four of my family and all four of the other family came down with really bad gastro. Needless to say they got a phone call and we haven't seen them since. My dd kicked off 'cos she really liked their little boy but I told her friends don't do that. All it takes is a heads up, you can always rearrange. I'd ditch those friends if I were you.. friends show consideration and respect. Can you tell I'm still angry? I get that sometimes people don't get the importance 'cos they don't live it but if you've made it clear to them, I believe, they should respect your wishes even if they don't understand the seriousness of the situation.

thanks for posting this :-)

Hi - no real advice but we too find that my dd's fears/intrusive thoughts worsen at or very close to bedtime. When she's in a full blown episode they're all day but when we're not far from baseline, nighttime is the bad time for her. I try (don't always manage) to keep her bedtime as early as possible and don't let her get overtired and that helps a bit but nothing really helps except getting her out of her episode, which we haven't quite managed this time around... good luck

thank you.. I needed that :-)

thank you :-)

Hi - we have our first LLMD appointment set up for our PANDAS dx dd7. We're set to see Dr Golan in Seattle in a couple of weeks.. I would love people's opinions of Dr Golan/what to expect etc if you'd pm me.... thanks.... (feeling a bit nervous.. like opening up Pandora's box... a whole new can of worms )

My child dd7 hasLyme Chronic infection Chronic Strep Significant Immune Deficiency No known current infections What group is you child in? Group 1 - my child only reacts to strep. other illnesses do not cause exacerbation Group 2 - my child exacerbated, and stayed that way, we see very little difference between baseline and exacerbation, regardless of illness (like Saving Sammy) Group 3 - my child reacts to almost all viral illnesses. I see huge symptom flair within 1-2 days (either just prior or just after) a virus or other infection, and it takes weeks to return to baselineGroup 4 - my child exacerbates, but we cannot tell what the tirgger or pattern is with the exacerbation. Group 5 - other presentation (describe) we also had a reaction to an acute food allergy If you had a Cunningham's test - what was the Cam K, and which anti-neuronals were elevated? 165% camk and all antineuronals at top of normal (i think) we did this 2 years ago at a time when she was totally symptom freeWhat symptom group would you put your child in: tics only ocd only tics first, and ocd came later ocd first, tics came latercompletely balanced How many symptoms do they have at baseline? (list them next to the appropriate group below (see reference list below) N/A - they don't exacerbate - its always pretty bad one 2-56-10 10+ How many symptoms does your child have in exacerbation? (list them next to the group below) one 2-5 6-10 10+ List of symptoms to pick from not limited to : tics, obsessions, compulsions, add/adhd, dialated pupils, urinary frequency, phobias, anorexia, body dysmorphia, reassurance questions, regressive behavior, rages/tantrums, insomnia, nightmares, hallucinations, bedwetting, separation anxiety, decline in math or handwriting, depression, extreme irritability, emotional liability, or other. What is your current treatment, and how is it working? Please note if your child had ivig or PEX prior to the treatment and what the results of that were. currently on biaxin (exploring myco infection chronic) has had abx and steroids uin the past

cool... thanks for that.. I'll try the company first we do an ok multi, we tried better ones but found the ones we tried were many capsules a day and he has to have all that kind of stuff opened and hidden.. will explore better multi vit again tho thanks :-)

Hello - my ds3 sounds somewhat like your son. My dd7 is very calssic PANDAS presentation but my son is more the hyper/not listening/some OCD type. I can't say what you're dealing with but I would always try to rule in or out PANDAS first than go the psychiatrist route. Dr latimer is very well respected and I'm sure will help you decide what you're dealing with. You can always go the psych route after if necessary... I'm not so sure it's as easy the other way round where you may get rxd psych drugs that if it is PANDAS could muddy the waters or even make matters worse... good luck...

Sorry.. bear with me but I've got some probably dumb questions.... I've got 2 PANDAS dx kids who we are exploring chronic infections for, primarily myco. but these questions relate to me.... I had my cd 57 done and came back at 54 (60 being bottom of low/normal). I am wondering if a bout of bronchitis followed by continued nasal congestion for 4 years could be our hiding myco. The congestion doesn't appear to respond to allergy meds but will lessen with abx, sometimes, only to return. Now here's the bit where you have to bear with me.... I'm on round 2 of azith for my nasal congestion..wich is better but not gone but I am in day 4 of a bad headache with some increasing body aches. I do get a lot of body aches - bad head/neck/arms as a result (I thought) of whiplash years ago. Also I'm a bit of a chubby and so fairly often attempt to lose weight and find that I always get a really bad headache the first few days. I don't think it's dehydration as I always try hard to drink extra... is there any chance that these headaches could be a kind of herx? I've recently read that fatty sugary foods feed myco and wondered if my starving myself :-) and the myco could result in die off and the same might be happening while on abx, die off leading to headaches.... thanks...

I think this may be the reason for the "transient tics of childhood" thing. Isn't there is supposed to be some immune cells (T-cell type?) that kick in to destroy faulty antibodies that attack self tissue? If that were in working order, it would be transient. So perhaps, for some of our kids, its a malfunction in the "mop up" immune cells. oohh - (don't want to flog a dead horse here but) would those t cells you mention be part of the innate system that gets shut off by chronic stealth infections like Lyme or mycoplasmas?

Hi - we had our dd7's D8/17 marker tested in 2008 shortly after she presented with PANDAS symptoms. It was part of a PANDAS panel..(I think the company was either Immunosciences or Neuroimmunology.. can't remember) she came back elevated but.. shortly after I saw a talk by Swedo where she said they can no longer do D8/17 as the line is no longer available, so it threw the whole panel into doubt for me.... Kimballot.. I read (and posted at the time) a good review article that said basically the same as you - that many folks produce auto-antibodies, it is part of a normal immune response but the issue is BBB breach. If no breach then no PANDAS....

Hi - yeh I've had it explained to me the same as you did, pandas16, that the autoantibodies keep seeing basal ganglia (if the BBB is open)and consequently, keep circulating but... if PANDAS is similar/same etiology to rheumatic fever and Sydenham's then how come that doesn't happen in rheumatic fever for example? I don't know much about it but I've assumed that in rheumatic fever you don't get continual production of autoantibodies cos the body keeps seeing heart or joint tissue and this made me wonder about that explanation for PANDAS. For my kids it felt more like stuff was circulating (or not depending on trigger status) and what matters more is the state of the BBB and maybe that's why chronic illness can be such an issue 'cos you get the double whammy needed of auto antibodies and breached BBB cos of inflammation... but I dunno...

cool.. so I wasn't being mad then... I didn't want to start a turf war between lyme/chronic infectionss and PANDAS.. I know and fully understand (been there myself) how much you get to "own" the diagnosis, that you probably had to fight really hard to get... it's difficult when you've lived and breathed one diagnosis and have to consider that it and the treatment you've battled for may not be the right or only one...... I'm still not quite there with Lyme but am warming to mycoplasmas and, at the moment, chronic infections feels right for my kids.....

Hi - having just read a recent current thread on whether to IVIG with Lyme or not got me thinking.... (we are looking at myco as possible for our PANDAS kids) could the turning back of pages that Dr K coined as a term and many parents describe after IVIG be a kind of herxing that these kids experience 'cos of an underlying infection such a Lyme or mcyos or viruses.. and if so what would that mechanism look like? Only a thought...

Hi - I can only speak for my 2 kids...and what I 'think' is going on. Ds is really too nebulous to get a hold on what is going on but dd is/was clearer. Dd7 had her 1st recognised episode at 4. In 3 years she's had 2 major episodes, 2 that were going bad but steroids stopped them in their tracks, totally for one and mainly for another. She has also had some microflares (as I believe Dr Murphy calls them) that last anywhere form a few days to a couple of weeks. Historically, she has always totally remitted between episodes. Last summer she had 3 back to back episodes. After the third, steroids got rid of 80%+ of symptoms but we have been left with some stragglers. We have never found Group A, only beta hemalytic NOT group A, once! Rest of the time it seems as though she has virtually no exposure to bugs according to tests and we've done a few :-) She has flared in response to various illnesses including an acute food allergic reaction. She was in high middle PANDAS range in the Cunningham test and has some elevated liver/low thyroid/adrenal issues etc but fine for all immuno testing (low for 13 out of 14 pnuemococcal but she never had prevnar vac). We can't find mycoplasma pneumoniae either by IgG or IgM but I am positive for IgG. She has often presented with myco. p. type symptoms with long lingering cough at times of major episodes. We now think/feel that myco. p. is her underlying trigger and maybe the fact that she previously remitted was her managing to keep a lid on the myco. Perhaps as these children have these underlying infections longer it does more damage to their innate immune system. Mycoplasmas are very difficult to test for like Lyme, as they too are stealth pathogens that can switch off your innate system and are implicated in up to 25% of PANDAS cases (according to Dr Garth Nicholson). Our ped explained it like this - mycos swith off the innate system forcing your body to use the next level down which is antibodies and inflammation to protect itself, leading to increased risk of autoimmunity and increased inflammation. It does seem to be a pattern that children often go from being able to remit between episodes to their baseline changing and full remission not being attainable. Could also be why some kids need longterm abx to treat and cure despite tests coming back showing no infection. Mycoplasmas, and presumably there are others (Lyme, viruses etc), are notortiously difficult to treat and can take many abx courses over months/years to eradicate. We are looking into PCR tests on blood via a specialty lab to see if we can find myco in the kids. I'll post what we find out... Sorry to rant - this is one of those rare moments these days where I feel as though I'm not lost in the woods with this disorder but actually have something to run with for a change. I suspect I'll be back in the woods if those PCR tests come back negative....