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Hi - my PANDAS dd7 was a terrible sleeper until 3.5 and still gets bad when in exacerbation (night terrors, wakings, night fears, separation anxiety) but has alwasy remitted when out of an episode. This time she hasn't totally remitted and still has to come in bed halway through the night. For us only time has helped. Melatonin will help to reduce falling asleep time but won't keep her asleep. For my PANDAS ds3, he was a great sleeper for his age until 7 months when his sister had her 1st recognised episode. Since then his sleep has gotten bad. He will range from 3 wakings (at best) to waking every 45 minutes, which is where we are at the moment. He had a cold about 2 months ago, got awful behaviours and sleep and although the behaviours went almost straight away, thank god, the 45 minute wakes remain. Melatonin will get him to sleep really fast and most nights, keep him asleep for 3 -4 hours but after that we go to the 45 minute thing. He's too small for a slow release pill. Valerian and magnesium at bedtime seemed to have a paradoxical effect with my ds and made him worse and had little to no effect on my dd. We also use seriphos with our ds as he showed a mucked up night/day rhythm for his cortisol when his adrenals were tested. It felt as though it used to work but I'm not so sure recently..... My dd has some true IgE allergies and both kids have a few IgG sensitivities. I find if I can keep ds free of the 2 biggest sensitivities then he does sleep a little better... Good luck.. keep trying different things.. in addition to treating the PANDAS, it really does seem to be the issue for us though.. I think if we had no PANDAS we'd all get a lot more sleep.

Hi - our dd had arm tremor with her 1 of her episodes, could this be the leg shaking. Dr B felt it was probably caused by elevated dopamine....

Hi - we had stuttering as a symptom in our then ds2. He had already had some word/beginning of sentence repeating (more OCDish) and not the usual age appropriate sort. He then started with full on consonant stuttering at the beginning of a word. It lasted for 3 weeks and ended abruptly on day 3 of a course of abx. Stuttering is also quoted as a PANDAS symptom in this recent review article. http://www.njcts.org/docs/ImmunobiologyofTDandPANDAS.pdf Good luck...

Hi - just thought it worth a quick mention - there is an autoimmune pancreatitis. It isn't usually acute but our kids aren't 'usual' :-) It normally presents chronically but good news is that unlike the usual pancreatitis it is more treatable and responds well to steroids. Not saying this is what your son is dealing with but thought it was worth throwing out there, in case you hadn't heard of it/considered it. :-)

Hi - it was the serum sickness that sent us (for now) abx free. My dh just balked at more and although I would have gone back to zith (it was augmentin that caused her reaction)I'm trying our dd without abx, using using olive leaf complex instead. I'm scared and wouldn't advocate people go abx free but so far, so good for us. For the first time in many months she's had colds (3 now) that haven't set off a PANDAS episode. We never completely exited the last bad one.. we still have lingering night time fears and she's in bed with me but I can live with that for now. With recent posts on gut permeability and autoimmune, I'm willing to give it a go and see how we do. I'm sure I'll regret it the next time she tanks, mind you. If you want to stay on abx, I would check for viral infection. From my limited understanding, it's usually a viral infection that confounds the issue and makes the body see the abx as an attack and thus form antibodies. You'll never be able to use the abx that kicked off the reactions so far (according to Dr B it will always see them as antigen) but you may be able to stop future reactions, possibly, if you can find and eradicate the infection that is causing the confusion, usually EBV according to our local immonu, but not always.. Good luck. I know how bad and scary serum sickness can be.. we ended up in ER in an ambulance 'cos her pain was so bad and we couldn't physically move her without her screaming in pain... mind you by the time she got to hospital and her anti histamines had kicked in and pain meds that we'd given her earlier, she was asking for cake. There's me looking sheepish with the phrase "tax payers dollars" amblazoned across my forehead!

Tantrums - you may want to discuss the serum sickness thing with your immuno.. bruising is common with it due to vasculitis - it may change the way they watn to treat if they think it may be that.. we didn't do steroids but we could have but we did do max dose on benadryl and piggy backed double dose zyrtec on top of it and it kept it bearable for her (in addition to max dose of ibuprofen for joint pain).

Tantrums - hi not saying you are dealing with this but thought it worth a mention. Our dd had a severe serum sickness-like reaction to Augmentin (most docs just call it serum sickness). It started with hives, then swelling and when they went away we had migratory arthritis for a couple of weeks. Instead of a type I anaphalaxis type reaction, it is a delayed type III hypersensitivity that happens when the body's antibodies to the antigen (the abx) combine together with the antigen and form immune complexes that deposit in skin - hives and swelling, joints - arthritis and sometimes but more rarely, the kidneys, liver and possibly heart but we were told and experience confirmed for us, that it is usually just skin and joints. It keeps going, despite coming off abx, for a few days to weeks 'cos of the 20-ish day half-life of the antibodies. Our dd was in a lot of pain with her joints and couldn't walk at some points but did fully heal at just about the 20 day mark. We were told by Dr B and our local immunologist to never take penicillins again. An allergy test would be useless as it would probably come back ok 'cos the skin prick test, intradermal and oral challenge can only show immediate IgE reactions and this type is delayed IgG. The previous year she also got the 'amoxy rash' - got the full allergy test, came back fine and then wham! I believe that for her the 'amoxy rash' was the forerunner to this and from what her local immuno said it seems as though the same mechanism is at work.. abx, A.N. other infection (probably viral EBV?) and a confused immune system both lead to the fairly common 'amoxy rash' and this much less common reaction. Perhaps your immune system needs to be even more over-stimulated for the serum sickness one.. hers certainly was at the time, we believe.

Hi - what I got from the article wasn't so much that gluten per se causes autoimmune but rather a leaky gut, possibly due to, perhaps genetically, overactive zonulin (or haptoglobulin 2 precursor http://www.news-medical.net/news/20090908/Scientists-solve-the-mystery-of-zonulins-identity.aspx) is the cause or prerequisite of autoimmune. The big molecules get through that shouldn't and set of the aberrant stimulation of the immune system. I thought it interesting that in PANDAS you need the double whammy of autoimmune trigger and BBB breach. Overactive zonulin weakens the tight junctions everywhere. Not just at the gut epithelium but also the BBB, if I'm understanding correctly. Could our kids' predispositions not be to OCD or tics or even to PANDAS but to crappy tight junctions thanks to something like zonulin? In either the original posted article or the one I just linked, Fasano stated that inflammaion arising from all sorts of different factors can influence zonulin levels..stress (perhaps that's where the Leckman et al work looking at psychosocial stress as co-precipitating factor with infection comes into play), illness allergies etc. Familyof5 - perhaps your toxic air somehow upped your inflammation, upped your zonulin and thus created a leaky gut, letting the gluten proteins through and precipitating gluten sensitivity. Perhaps that's why so many kids do well on anti-inflammatory diets? I'll shut up now.. get the feeling I'm flailing around looking for a that single unifying theory to make all of this easy? One answer please and one treatment.. and then she woke up....

Wow - what an excellent article.. thanks for posting.

Hi - the only name that I have been able to come up with for the UK (we are from UK but living in the USA and when we thought we may be moving back we hunted around for a PANDAS dr) is this chap at Barts in London... http://www.bartsandthelondon.nhs.uk/forgps/handbook/consultant.asp?cid=454&tt=2&sid=32&pid=7687 others may be able to give you names or you could try a Lyme Literate Medical Doctor (LLMD) aa an alternative. A LLMD should take you seriously and not blow you off and they don't just deal with Lyme. There's a good one in Hemel Hempstead that is recommended by the organistation ILADS. I'll see if I can find it and PM you their info. Good luck...

Thanks for the responses, everyone. We are going to go with 5010, the initial panel that does IgG, IgM and pcr. We've been off abx for a while now, so this is a good time. Juliafaith - how did the time release melatonin spray work out? Ds is doing really well at night until about 2-3 ish and then it's many wakes until morning. Where did you get the spray from.. I might give it a try. And are you seing any changes yet in your son or is it too early into tx? thanks again everyone...

Hello. I'm just trying to get my financial ducks in a row for more testing for dd and ds (and possibly me too)..... Does anyone know how much Igenex testing costs? I did mail the co but no repsonse so far. We were thinking of doing the western blot IgG and IgM, co-infections (western) and possibly the PCR (sp?). Thanks for any info

http://www.ualberta.ca/~medlabsc/courses/475/Th17lymphocytesbbb.pdf

Yeh - I would ring and see if they can do the testing now and still keep appointment for fri. Then if you feel you must, you could go back on the abx as soon as the blood is drawn? good luck

Hi - she may be healing from this episode. My dd7 has had 2 major all **** breaking loose episodes and 5 more minor ones. With the exception of the last episode from which we are still seeing some end of day/nighttime separation anxiety and fears, she has always gotten better eventually. Sometimes aided by abx or steroids but even when neither of these have worked, she has fully remitted with time and only gotten worse with a new infection. Forgive my memory but is strep or another bacterial infection her trigger? Are you using treatment dose or prophylactic abx? I hope she keeps it up....:-)

Hi - I thought this was an interesting article http://www.nature.com/nri/journal/v10/n11/full/nri2876.html in light of the association of Th17 in response to GABHS infections http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2851870/ although, I'm not sure how many other infections illicit the same Th17 response.....

thanks :-)

Hi - I have a dd7 and ds3, both with a PANDAS dx. Dd started around 4, possibly 3 and I believe, ds started at 7 months old, same time as his sister had her first recognised episode. My dd is very classic with acute onsets with OCD, tics and a raft of behavioural stuff. My ds sounds much like yours. His presentation is all behavioural with ODD, aggression (actually a very sweet natured,loving child) tantrums, difficult, sensory etc. It's tough with very young children because people will tell you it's all age/developmentally appropriate etc but you know your own child. My ds tanks with most illnesses and takes a long while before he calms down again. Abx can help sometimes but sometimes not depending on triggering illness. Time has, so far, always healed although he is more difficult at baseline than my dd but to some extent we may never have seen his true baseline 'cos he had it so early..... good luck.. maybe you could consult with one of the experts and they could guide with your ped? Most are happy to talk to local drs....

Hi - I voted based on our dd7. I put almost complete remission because 4 months after her last episode, she is still sleeping with me and getting fears etc but low level. However, she has had 2 major and 4, maybe 5, minor episodes and until this last one, she completely remitted each time.

Our dd7 has had a PANDAS dx for 2 1/2 years (with reactions to some bacterial, some viral and acute allergies). Dr B told us, for our situation and our dd, to not do any vaccines whatsoever.

Hi - my kids both have a PANDAS dx and we are about to explore Lyme for them with an igenex test. I have started up with some rheumatoid arthritis type stuff but somewhat wierdly and want to explore lyme for me too. If the basic test from my pcp comes back negative, I will do the igenex anyway but if I can get my pcp to order the run of the mill quest lab type tests and they come back +ve I can save myself some dollars. What should I be asking my pcp to run.. western blot? others? I think he will happily do these and we can go from there.... thanks...

http://www.journal-inflammation.com/content/6/1/26 only just read about RIAAs and their use for inflammation anyone using these? any good?

Hello again... Dr Trifiletti yes. The form is from Igenex and it's their requisition form For my ds, Dr T checked off - Complete Lyme Panels (western blot IgG and IgM, Lyme IgG/IgA/IgM screen, Lyme PCR serum, Lyme PCR-W blood) 6050 Western Regional Co-infection Panel (babesia duncani (WA-1) IgG anmd IgM, Babesia FISH, HME IgG and IgM, HGE IgG and IgM, Bartonella IgG and IgM) 5080 that was it... hope this helps.. ( not sure what babesia FISh is?)

hi - dr t sent me an igenex order form for our ds which we haven't filled for variousa reasons but intend to do so soon for ds and dd. It has, what dr t said are, west coast specific bits. I've got a clingy sick 3 yr old and my dd just came home sick from school (hooray) so won't dig it out right now but will find it this afternoon and will post what he checked for us on the test, sometime later today..

Graceunderpressure - I haven't tried the time release to date 'cos I had assumed that it was in pill form and so far neither of my kids can swallow pills but would love to give it a go when they are willing to do so. It may be worth trying.. my ds3 is the really bad sleeper. How young can kids be taught to swallow pills whole? thanks..