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Hi - we did dairy free for 3 years with no problems (dd's allergy).. IMO that's the easy part.. lots of different options and not so hard to exclude when you get used to it.. gluten free has been another issue. I've also got a saboteur in the house, an adult one, but that's another story. I find dinners are easy if you stick to the meat and two veg type dish or casseroles etc and shouldn't cost any more than normal dinners. You can get decent quinoa/corn pastas and some not so bad pizza bases (Udi's do good ones) but are pricier than normal. Breakfast is okay, you can get buckwheat pancakes and waffles at Trader Joe's that come in cheap and the usual eggs and stuff is ok.. bacon may need to be checked.. some hams have gluten so check the bacon.. not sure. My difficult one is luunches and packed lunches for school. Getting decent sliced bread. Again Udi's do a good one for toast but IMO nothing is nice as a sandwich bread that is gluten free but there are work arounds. For us the sticking point is eating out/any fast food. Dairy is fairly easy to avoid when out but not so easy the gluten. I think it is definitely worth a try. I've been told you need to go at least a few months for gluten as it can take 6 months for the antibodies to leave the body.. dairy is much quicker I believe. We only managed 3 weeks gf but are going to go for it again when school starts and really give it a go. Our almost definite PANDAS ds (dd has a dx) is a very physicl boy .. with lots of heavy handed play and some biting and inability to control impulses. When we cut out gluten and eggs (he had an elevated egg IgG) almost all of it disappeared within a week and has returned since we've been more slack. Not sure if it's gf or eggs but something was helping... I think you really need everyone in the house on board. Good luck...

So very pleased for you that it went well...

SFMom - IMHO, please keep posting.. I do understand peoples' frustration - you think you've got IT on the run and then someone throws another spanner in the works.. myco, allergies, Lyme.. but if it weren't for those spanner throwers, all of our kids would be suffering in silence or relegated to SSRI's. I'm happy with vocal parents, I don't need to believe or blindly follow all advice that I'm given, I can choose to sift through and take only that advice that I feel applies to my situation. I also get the issue of newbies being sent on wild goose chases but there's the excellent pinned threads for the basics and these more involved discussions can only add to the knowledge base.. nobody, not even the experts have the answers, so until somebody does, I'm happy to hear all comers.....

I'm really, really happy for your family

hi - quick question - we only did the western blot for lyme but also did IgG, IgM (I believe) for Erlichia (sp), Babesia and Bartonella. All came back negative. Is that a negative for survey purposes. We only tested our dd not our ds yet. With all the continuied Lyme talk I'm wondering if we should do the igenex.. so it's not a resounding negative for me. how should I complete the survey?

I agree with the socialisation bit. When our dd had her 1st recognised episode at 4, her OCD symptoms were, in addition to contamination fears, fears that surrounded any safety message we had ever given. At first I thought I had "made" her neurotic but realised our messages had been the normal ones but her OCD had ramped them into monsters. E.g. don't play with plastric bags became her refusing to touch anything plastic to her mouth or even close to her face in case it stopped her breathing. Literally, 4 years of safety messages became OCD obsessions. I'm also wondering with the more subtle issues such as anger and mood, if parents are more sensitive to those kind of changes in a girl but more "forgiving" of it or maybe notice it less in boys due to the expectations of 'boys being boys'.

Thanks for posting this Vickie, great to wake up to, I've got tears in my eyes - finally some mainstream acceptance and hopefully the beginning of a paradigm shift for mental health

exactly! maybe even a few PANDAS...

These drs should come to some of our houses, we could give them a headstart, maybe save them some research money "Hate fish? Can't eat veg? Doctors study picky eaters" http://www.bbc.co.uk/news/world-us-canada-10959879

thanks.. that's a good site. I did some googling myself but just couldn't find much re drs.. even the uk's lyme action site had no references that I could see. I suspect he'll just have to go through the normal routes.. coming from the uk I know how unsatisfactory that can be, especially with unconventional diseases such as PANDAS or lyme.. I was hoping someone might know an inside track....

Hello I was wondering if anybody knows of any good lyme literate drs in the UK? Re-reading all the lyme stuff again, makes me wonder about my brother-in-law to be. He had acute brachial neuritis a few years ago that has never resolved and he still has use of only 1 arm. This was followed a year or so later by central retinal vein occlusion. He has also suffered low energy. They live in the woods with lots of deer and he is always outside. Thanks for any ideas.. I imagine getting good dx, tx will be harder in the uk. Is it possible to do an Igenex test from there.. does the sample degrade, I'm assuming it does. Is there an equivalently, trustworthy lab in the uk? Sorry, I know this isn't a PANDAS question but there's been so much lyme talk recently.. forgive me.. thanks..

glad everything is ok. Is Danny still seeing the flashing lights?

that was a good read - thanks for posting..

just a quick thought pixiesmommy - have you tried knocking out nightshade plants such as tomatoes and potatoes.. there are others not sure what they are. Some people can't deal with the solanine in them. It may not be the root cause of the problem (although I think for some it can be) but it may help. my mom gets R arthritis and when she knocks out potatoes it really helps her..

vickie, suzan - the things we do.. when my dd was little... say from 12-20 months or so, it would take her 1 to 1 1/2 hours to go to sleep (can't believe I hadn't discovered melatonin ). She was a heavy baby, I've got a crap neck/back 'cos of rather daftly falling off a pedal bike but I would have to rock her on my lap for the whole time, sat crossed legged on the bed and singing "twinkle, twinkle little star". When she would finally fall asleep I had to count to 200 slowly 'cos if I put her down too quickly it would all start again. Oh the joys!! I only ever told those closest to me, thinking most would think I was both crazy and a slave to my child but, at the time, it was the only way to get her to sleep. Now was that early PANDAS? I think all parents can relate to needing that me-time, however we have to/chose to spend it (with pc on bedroom floor ) just for some it is harder won. My poor cat, I'd come out of that bedroom and the cat would want to get some lap action.. no way, I was done.. my dh didn't fare much better

hi - will do.. we see her on 27th aug, I'll make sure I take them with me. Just let me know if that is too late and i can always drop them earlier, we go past fairly regularly.

vickie, smartyjones - thanks for the ideas. I initially tried to get her to sleep on the floor/offered to bring another mattress in, thinking it would be easier to crack that nut when the time came but she was scared there were ants crawling all over the floor but as the episode is losing steam, I may well try it again. I'll try the slumber party angle. As for sneaking out of bed to a bed of my own --ahhhh angels singing --- what a glorious idea. I don't reckon my ds2 would go for it at all but I'm smiling just thinking about it. I love my kids but the thought of not being woken god knows how many times a night and not being constantly jabbed with feet etc.... I'm in a reverie just thinking about it

hi - don't want to scare you and absolutely not saying this is what is going on but just a thought.. flashing lights is a sign of retinal detachment that can be brought on by build up of fluid behind the retina. After I had a c-section with my ds, I had an massive increase in floaters that was put down to increased body fluid due to IV fluids during the c-s. Just wondered if they gave lots of fluids during the ivig and if it's putting pressure on the retina? Sure it's not this but if you feel it could be, you may want to get it checked by an opthamologist...

peglem - yeh that's wot I reckoned.. just so desperate for sleep.. as for ds2.. he's our highly probable PANDAS child. Before my dd came in bed he has recently been waking me about 5-6 times a night. Doesn't stay awake, no issues just up/comfort/sleep. He's got mucked up adrenals too that may be impacting but so far the supps for that aren't helping.. (only thing that has got him to sleep was a steroid burst!!) so not much I can do there. He's on abx and has just done another burst but this one didn't have the same sleep effect of the first but we have seen much less hyper/aggressive behaviour and stuttering... Oh well, just got to hunker down and get on with it. I know (I hope) my dd will get over this one.. I just see fall looming and other illnesses on the horizon and worry that we'll come out of this one and straight into another.. for the last couple of years we've had almost virtually episode-free springs and summers, returning to baseline. Her immune system already feels so poked that I worry even colds will produce exacerbations.... thanks for your thoughts..

hi - you see dr keller? (sorry if I'm mixed up) if so, we did some really comprehensive testing with Dr B via tel consult for our dd7. If you would like I can pm you the tests or drop them with dr Keller when we see her in a couple of weeks time.. (only thinking of dropping 'cos there are LOTS and my typing ain't so quick and I don't have a scanner) thanks...

Hi - this is more a question and advice seeking re anxiety and nightime... my dd7 has had three back to back exacerbations since march. We had a 4 day one in response to an acute allergic reaction to a food, then a couple of weeks minor flare in response to a flu and then a bigger one in response to a cold. We fully remitted in between the 1st 2 quite quickly but I feel this 3rd one is bad 'cos off the cumulative effect of each episode, each one putting her immune system on higher alert. Anyways.. this 3rd episode has included nightwaking, being frightened and wanting to come into bed with me. She hasn't wanted to be in bed with me since she was 4. She was so scared and none of us were getting any sleep so I let her come in bed. So, now there's me, my ds2 and my dd7 all in a bed and although the sleep is better than before I let her come in, it's still pretty crap as my dd wakes my ds with moving around in bed etc, he wakes me and on it goes all night. Sleep-deprived-me thinks I should be easing her back into her own bed but not sure how to do it without many sleepless nights and loads of crying. My unselfish side thinks I should wait, it will resolve when this exacerbation resolves (they always have done in the passed for us with steroids, abx and time.. although, we are 2 months in and though things are getting better we are still seeing oppositional behaviour, emotional lability, fear of the dark and this seperation anxiety). So my questions are - Is this a separation anxiety issue that can be tackled head on like other anxieties or is separation anxiety a different creature, more like age regression, that has to be dealt with differently? Should I attempt to deal with it now or will it hassle her so much (she goes to bed in her bed but wakes in the night really frightened and has to come in then) that it will just prolong this epsiode? Should I just wait it out and deal with it when I know she's really out of the woods with this episode? Thanks for any ideas, advice.. sorry to hijack..

wish I could understand it but others on here might "Mammalian Toll-like Receptors: to immunity and beyond" http://journals2005.pasteur.ac.ir/CEI/140(3).pdf