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Also, how many people can recognise OCD or mild versions of it? Many children and adults hide their OCD or internalise it. It is also difficult to recognise in younger children. I feel convinced my DS4 has been showing signs from 7 months old, the same time his sister came down with her first recognised episode but it is only now, nearly 4 years later, that we are seeing what I would call classic OCD signs and those are mild, recognised by a hyper or maybe over:) vigilant mother. If it weren't for DD his OCD as it stands would go completely under the radar I am also disappointed in the name's move away from the immune system component. I understand the need to move away from the individual triggers and even from infectious triggers (my dd will trigger to allergies as do others) but feel the name is now too expansive and, I fear, will do nothing to further the cause and may just dilute the message that these changes in our children are based in biology. Maybe I'm being too harsh... I just felt disappointed. I was expecting the White Paper to be a clear, loud and resounding validation for the immune triggered neuropsychiatric changes seen in these children and I feel it wasn't .

Hi - just had a super quick read, so I may well have got it wrong but it looks as though the criteria stipulate OCD as having to be present. It seems as though there is no longer a tic component for the 1st criterion. Under the second criterion movement issues are covered but, if I'm understanding right, it is no longer "OCD and/OR tics" just OCD with associated movement. Am I reading this right and if so does this exclude those kids for whom OCD is not a component, whereas PANDAS would include them? thanks....

Hi - I was wondering if this issue tends to get seen in a constallation of other issues? Specifically, stomach/GI issues such as pain/cramping and with skins problems like itching, hives and angiodema. Sorry just another rabbit hole for me to get lost down DS gets very itchy for no reason and immuno says it's a mast cell issue similar to but not as bad as mastocytosis. Aberrant mast cell behavioiur can, amongst other things, cause symptoms similar to insterstitial cystitis. We're using cromolyn with some success for ds' itching. Thanks

Hoping all goes well and that you some answers

Hi - our dd had an armn tremor during her first episode. Dr B said it was due to excess dopamine... hers appeared to resolve and we haven't seen it since....

Hi - both my PANS kids react to many different triggers. Our proph abx, zith, didn't appear to make any difference in how many infections or flares they got. DD got serum sickness a couple of years back and it frightened dh so much that he wanted us to try no proph abx. I was ready to give it a go anyway and with ds having had c diff and also being a yeasty kid it wasn't too much of a leap of faith for me. Dd is doing better but that's due to many factors (mainly methylation support we think) and ds is rollling along with many ups and downs but we're coping ok We do abx for obviously bacterial flares but we don't abx all of them eg colds/viral. I feel for us it was the right decision and seems to be panning out ok so far.... hard decision, though.... good luck..

I'm not usually a conspiracy theorist but this is starting to sound really fishy to me rather than simply a case of ineptitude on the part of the drs so far. How could Swedo agree with dx.. has she seen the girls... just seems way odd if it is true. lets hope this report got the drs confused.

Hi - yeh our dd and I have been positive for group B strep on a throat culture and a beta hemo NOT group A. D4 has had a few that came back positive for candida when we weren't looking for it/expecting it and he had no outward symptoms.

thenmama - what an excellent letter you really manage to get across the important stuff without coming over as a crazy germaphobe. I like and (although it wasn't me that asked) will keep a copy for future use.. thanks for that

So excellent.. thanks...

AmySLP - Amen

Hi - when I got tested for h pylori, I was told to drink a fluid, then 10 or so mins later, I had to breath into a bag and the bag got tested.. sorry not sure what for but I imagine it's a bit like a rapid that will look for actual bacteria or maybe toxins produced by h pylori. It may be a better test (I'm guessing here) for those who don't mount a good antibody response....

Thanks for the info Momwith - did you see any benefit re PANDAS type behaviours with the H2? thanks

Thanks for the info. LLM - It's for me actually not dd or ds. Don't ask If it's successful, I'll report. If not, I won't. I'm happy to tell by pm if anyone is interested.. very cloak and dagger but painfully dull and boring actually

Hi - I didn't know if folks would find this interesting or not but here it is in case. It's only the abstract, I'm afraid. http://www.nature.com/nrmicro/journal/v10/n2/abs/nrmicro2714.html?lang=en?WT.ec_id=NRMICRO-201202

Hi I was wondering what dose people are using? Is the dose for that would be used to treat trich. different to that for normal supplementation? I foiund a paper discussing it's use for hairpulling etc but could find no dosing schedule. Thanks

Hi - I was just wondering if anyone uses this on their kids? Here's a wikipedia link http://en.wikipedia.org/wiki/Cromoglicic_acid DS4 has a lot of itching, especially at night, probably due to high histamine which we are trying to deal with via methylation support but are interested in a quick fix too. Our immunologist has suggested Allegra (H1). As I've read that H1 antihistamines can be detrimental to BBB integrity, we and our ped are considering Cromolyn use. It is a mast cell stabiliser. It seems to have a great safety profile but requires 4x daily dosing and thus was overtaken by easier to dose alternatives. Any info gladly received

Yes - I believe so. Our ped has just ordered it for our ds4 but he is homozygous for the C677T MTHFR polymorphism which puts him at heightened risk for increased homocyteine.

Hi - I also wonder if it could be a double whammy effect if for your child methylation could be an issue. If you are an under methylator you run the risk of increased homocysteine. High levels of homocysteine can compromise the BBB. I've read that B2 is used to help lower high levels of homocysteine, possibly helping the integrity of the BBB? edited - I went to see if I could find the reference re B2 and Hcy but couldn't. I did find others that discuss it in general with other B vitamins and one site, that didn't cite its source, that says B2 lowers Hcy by 20%-40% in those affected by the MTHFR genetic polymorphism. Sounds impressive but a quick search on google couldn't verify it in any way....

Hi - ds4 had a stutter at 2. It was a proper getting stuck on the hard consonants type. For him abx made it go away and Dr T felt, as did I, that it was part of PANS. It only lasted 3 or so weeks and abx kicked it into touch in 5 days for us....

thanks folks.. that gives me some things to think about. We see our great PANS ped tomorrow, so I'll raise further testing. Our insurance changes next year too so I mighht milk our currently great cow for all it's worth.. I've wondered about KPU in the past... thanks again

Hi - just our experience... dd8 was what I would consider classic sudden onset. Went to bed Sunday night normal, woke up Monday with the whole laundry list of major and minor PANDAS symptoms. She has never tested with raised titers but has responded well to abx and steroids. With hindsight, she had some vomitting worries following a couple of GI infections. They did stand out at the time 'cos she didn't get concerned with what had made her ill until a couple of weeks after it stopped. The time lag seemed unusual. She also had minor sensory issues round ages 2/3 but we just thought quirky - loving to rip clothes off when home/sock problems etc. Ds is a very different but still PANS story. He would, to non PANS folk, seem like a normal 4 year old boy who now and again goes off the rails, behaviour wise. I imagine at these times he'd easy make a ADHD dx, sensory dx, maybe ODD dx. He has had all the minor PANS symptoms and it is only now as he gets older and can verbalise more that I am seeing the OCD stuff creep in. He also had a 3 week tic that abx stopped. He has never had a raised titer but has swabbed positive during a flare of symptoms (no normal strep throat symptoms) and responded well to abx. He has not been sudden onset as I think most people woiuld see it. We believe and have had that agreed with by a couple of PANS big gun drs, that he probably started when he was 7 months old, the same time his sis had her first recognised episode. It took me, with an already PANS child in the house, until he was 2 to realise that he too has PANS. Whne he was 7 months he had an overnight onset of extreme separeation anxiety. This is not uncommon at this age but the severity was. We and everyone round us said age and we also assumed the added emotional aspect of having a sick sister and distracted parents. This was followed by regressions in behaviour and sleep at severe illnesses. It was like he got sickness behaviours like all little kids but his didn't go away for week or months. I have absolutely no doubt in my mind that had his sister not got the sudden variant, I would never have put 2 and 2 together. Maybe as he got older, his behavioural regression/personality changes do fairly clearly follow illness but not just strep, we might have worked it out but I doubt it. Both kids did the Cunningham test and tested high middle PANS range. For me, the constellation of symptonms says way more than onset, especially if this has been happening since a very young age. good luck

Hi - Sorry to ask the kind of question with an answer possibly as long as a piece of string but for those of you who started out on the PANDAS/PANS route, with hindsight or at the time, did you notice a differing pattern of symptoms to what is thought of as classic PANS? Was it a lack of response to PANS treatments that made you go further? My dd has had western blot doen but nothing more for BB. She did get a panel of co-infections done under Dr B that all came back negative but that was a couple of years ago and his breadth of testing may have changed (I'm aware there are more than 1 strain eg of certain types). Ds has had nothing tested in this area. It's just that we're in a good place for both kids at the moment and I'm wondering if I should make use of the lull and the extra energy I've got to further pursue underlying causes? Thanks...

eljomom - Hi. Currently dd is taking something called Methylguard by Thorne. It's got 20.4 mg B6 as pyridoxyl 5 phosphate 1.2 mg folate as 5 methyltetrahydrofolate 1.2 mg methyl B12 1.8 mg trimethylglycine (TMG) She also gets methyl B12 three other times a day 'cos when you give it orally it is only available for a few hours and I've been told you want as smooth a curve of availability as possible. When we started out we did it all separately. We started the folate first at 1/4 that amount for one week and added a 1/4 each week. We then added in B6 at about 1/2 amount for a week then full amount and finally added in B12 at full amount. The TMG only got added when we changed to the Methylguard on our ped's rec 'cos it contained the TMG which uses a different pathway altogether to methylate. Just another layer of support. In the interests of full disclosure she also gets Vit C, Vitamin A and Vitamin D emulsions, probiotics and melatonin. It was an integrative dr that ordered our MTHFR test but it can be ordered by any dr. We got it done at Quest and on the lab req. it was called MTHFR DNA Analysis, I believe. We are about to get myself tested and possibly dh if I can get him to do it. Genetic counselling is recommended for all family members if one comes back homozygous like ds did but we'd have done it on the back of dd's compound heterozygote result, anyway. Depending on what you read it appears that different combinations of the known polymorphisms affect different things, causing different symptom sets. I'm afraid it's still as clear as mud to me. Now that ds is back to himself again, I'm hoping that I can focus out a bit and really try to understand it a little more......

Hi - we've been told that shots are best 'cos if you take it orally it only is available for 4 hours or so. If you do shots you get a smoother curve of availability. We get round that by doing it 4 times a day. There is no way that dd or ds would go for shots and they wake at the slightest touch or sound when asleep so we couldn't sneak it in either. We use a good quality sublingual 16000% of daily but I don't worry about quantity 'cos so much doesn't get absorbed and what does, that is too much, is flushed out when they pee. DD gets a squirt in the am, when she gets home from school, dinner time and before bed. Our ped says she's found one that claims availability for 12 hours but it's hydroxy and for now we're going with methyl but may change when we research more......