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a peaceful Holiday and a New Year full of healing.

Thinking along the mast cell line, would a trial of something like Cromolyn, the mast cell stabilizer, be any worth?

Hello. For my kids each flare can be different and have different things that can set them off and so as others have said, it's the PANDAS and not the situation doing the triggering, I believe. Your dd may be having separation anxiety. We see a lot of it with our kids' flares. Our dd often doesn't want to separate from home and can have school refusal. We see a therapist and got the same advice as offered by LLM and airial. You've got to be tough. I have had our dd on her knees sobbing and begging me to keep her home. At first I did but it just made it worse. We were advised to offer something that would allow her to calm down without avoiding her anxiety triggering situation. Our therapist explained it as not backing off from the anxiety but rather getting her out of the fight/flight mode and 'thinking' again. E.g. for school, if she were totally overwhelmed, I could offer to let her go in 1/2 hour late. Not letting the PANDAS make the decision but recognizing that her anxiety is so high, that I, as the parent, am giving her some room to organize herself and then get on with what needs to be done. It has really helped. That small window where she can decompress and knowing she's got to plan on how to deal with her anxiety has been what's kept us moving forward instead of getting completely stuck during a number of flares. Good luck...

thanks for the links. I'll go read

rowingmom - it would seem to be the melatonin itself as within minutes (15 or so) of taking it his tics ramped down by 70%+. I've often seen a lessening in behaviors with ds when given melatonin for bed but just thought he got too sleepy to play up but as this time it was tics it was more evident that it was something else. Maybe it was just coincidence, we'll see what happens tonight. I haven't ever noticed melatonin have a similar effect for dd who has a more classic tics/OCD presentation than ds. I'll be watching both more closely after melatonin from now on..

Hello. Quick background - DS 6 has had PANS since very young. His usual symptoms are hyperactivity, impulsiveness, not listening, defiant etc. We use melatonin regularly during flares and at other times and I've always felt that his symptoms diminish once his melatonin's in him but assumed it was due to him getting sleepy. Well this flare around he's been hyper etc but also has developed a sniffing tic.. maybe going on 2 weeks or so. The last couple of days his tics have increased and today he's been hopping and hand clapping in time to his sniffing. Within 20 minutes of my giving him some melatonin tonight (1mg) all the hops and hand claps stopped and the sniffing has ramped back down to minimal. We've been using ibuprofen at full dose as that seems to really help his self control and keeps a lid on his symptoms but this was such a sudden decrease and appears temporally associated with the melatonin. Could this be possible? We'll see if we can reproduce it tomorrow night... Any ideas? Thanks.

While I agree totally that OCD can present subtly and variedly, I also think you can have PANDAS without any OCD. I've got 2 kids with PANDAS and while one has a classic presentation with tics and OCD, my other child will show minor OCD or anxiety symptoms only rarely during flares. During the majority of his flares, he will present with hyper/aggressive/impulsive symptoms. For him, it looks as if someone has switched a motor on inside him. If we had him evaluated during a flare, he would probably be dxd ADHD. At these times I've hunted for the underlying OCD or anxiety that might be driving these behaviors but during many of his flares they just aren't there and he can truly have non OCD or tic exacerbations. If it weren't for his sister, I suspect we'd never have suspected PANDAS in the first place but he responds well to abx, ibuprofen and, when necessary, steroids.

Hi I was wondering if anyone has gone the food acquired probiotic route rather than supplements and if they have any info to offer with regards this discussion ? I'm thinking fermented veggies etc.

I love this article http://thewalrus.ca/a-feverish-debate/ iIt doesn't speak directly to what school needs to do but I think it's a great look at what it is really like for kids/parents, it's realistic and addresses some of the medical side. Also, it isn't afraid to address the 'controversial' aspect of PANDAS. We used that for the 'feel' and the NIMH PANS page for the big-name-institute back up stuff.

Could c-diff be in the picture.. seems it can provoke PANS symptoms in some and I believe clindamycin can be a troublesome abx for those susceptible to c.diff. I always go overboard when ds has had clindamycin but he's had c.diff previously. No diarrhea just stomach pain but he came back positive for c.diff...just a thought... edit.. sorry just realized nicklemama has already mentioned c.diff

Hi - you've probably thought of these ideas but can you get away with it in food for your dd? We use it as the oil in pancake mix, cook the pancakes in loads of oil (the bubbles seem to soak it up really well when cooking) and on the pancakes instead of butter. My ds won't have it on top as well tho' but dd will. They think they're getting treated My mom also swears by pastry made with coconut oil and says she can't taste that it is any different from normal , for both savory and sweet

Our knowledgeable pharmacist told me that you need to take it with food to aid absorption. If you use the bio-emulsion type you can take it without food as it's suspended in oil/fat. We use Biotics Bio - D- Forte. I drop gives 2000 IUs. It does taste greasy but is so small my kids take it ok and it would super easy to hide in something else as it's only a drop or so that you need depending on how much you want to supplement. They also do a lower dose one at 400 IUs per drop, I think.

Our thoughts are with you.

I don't want to get in to a back and forth, honest and totally agree with dcmom that you should look for underlying OCD but I know that for my kids we do get stand alone, PANDAS behaviors that are not OCD driven. Many are anxiety driven which is probably the same continuum but we also get what feel like pure and simple base emotion changes, especially the combative, oppositional behaviors that my kids express. We could discuss and delve until kingdom come but we couldn't find anything/voice any "idea" as it's foundation. I'm not saying OCD doesn't drive many PANDAS symptoms, it does for my kids too and we've found a great ERP CBT lady that has helped immensely but for my kids it's feel as though we have central cores of 'defined thinking' type symptoms and then this amorphous/nebulous emotion-driven surrounding that feels way more limbic. It's like moods that, instead of being driven by thoughts, are just plain, atavistic emotion. I could be wrong and for my ds I may well be as he has trouble voicing and wishing to voice his thinking/emotions (he's 5 and male). But my dd has always been able to talk openly and clearly express her feelings and thoughts... Sorry bit of a rant but .. the good thing is that for us, when we medically treat the PANDAS, the behaviors recede.

I would agree with the above posts that for us if there are behavioral issues they are Pandas related too. However, we can have issues without an OCD basis. We do see OCD for both PANDAS kids, dd much more so, but we also get issues that aren't rooted in OCD. My ds presents very differently than dd and although we have some OCD flickers, he is very behavioral - impulsivity, aggression, rage at times, very physical, sensory, oppositional, hyper and it all disappears and a typical 5 year old emerges when he is truly PANDAS free. My dd can be combative and just plain annoyed for most of the day when she is flaring and again it all disappears when well. Dd is far more OCDy and anxious and some of her behavioral issues are rooted in OCD but many aren't.. just the myriad of symptoms that PANDAS can cause IMO.

Hello Just a quick thought are you dealing with joint pain at all? My dd had serum sickness that started as vasculitis that looked like hives and then had some full face and body swelling and then after a few days she had polyarthritis. It lasted 3 weeks in total and is a type 3 delayed hyper sensitivity. It started on day 8 of augmentin and she can no longer take penicillin. Probably not this but just a thought. oh and at about 24 or so hours in (maybe more) she had red hot swollen knees and elbows. Hope you sort it out...

thanks so much, what an excellent article for handing out... been looking for something that really covers the gamut for school etc and this is it, enough lay science and the personal side too and the bit on evolving RF is great. Thanks

http://www.childmind.org/en/press/brainstorm/pandas-ocd-and-bomb-plot

Hi - I spoke to him on the phone about 4-5 years ago when our dd was first dx'd. He was kind enough to talk to me for well over an hour (no billing). He was patient in his explanations and seemed to be one of those rare doctors who is both great at what they do and humble. He was genuinely interested in our story and appeared to be more concerned with getting kids well than his own prestige/career. Can you tell I really liked him?!

My ds sems to react fairly instantly and negatively to sugar. I used to think it was yeast (he is yeasty) but felt it was too quick.... I'm now wondering if it could be something along these lines, made worse by an inefficient insulin response.. dunno.. thought it was interesting tho.... "But over the last 20 years, we've come up with a whole bunch of different ways to sneak around the Blood Brain Barrier, and deliver drugs into the brain. One method involves squirting way too much sugar into the blood stream. Any excess of sugar will normally be mopped up pretty rapidly by the body's insulin system. But in the meantime, the sugar sucks water out of the endothelial cells, and makes them shrivel. And so, in the brain, the tight junctions between the flat endothelial cells that make up the blood vessels will open up - but only for about 20 minutes. It's not a long time, but this allows you to increase the amount of drugs that get across the Blood Brain Barrier by ten or even 100 times" from this article http://www.abc.net.au/science/articles/2003/12/11/996860.htm

My only issue would be (and this is probably hair splitting but) the PANDAS/PANS forum is, by definition but not by real world IMO, Pediatric whereas the Lyme forum was for all ages if mainly frequented by parents. Just wondering if some prospective members or guests may be put off reading/contributing 'cos of the Pediatric label? dunno....

I believe that our ds5 had his first episode of PANDAS/PANS at 7-8 months of age when his sister, dd9, was experiencing her first recognised PANDAS/PANS episode at age 4, although she may have had mini episodes before that - sock issues, clothing sensitivity.

couldn't find it.... editted - ok.. sorry, just seen it's been subsumed within PANS

Hello. Has anyone got a really good understanding of the different yeast tests (stool, spit, blood, urine?) and what they may show/mean? Thanks for any info.

excellent .. thanks