dut

Cool.. just found this site http://quizlet.com/1826547/yasko-snips-flash-cards/ Yasko SNPs flashcard

Hi - I was wondering if anyone ( LLM? ) could give me a quick answer re the 2 tests. A quick glance at 23andme shows it includes APOE which is a marker for Alzheimer's. My father had AD and this isn't something that with current available treatments I would want to know about, either for me or my kids. I personally, wouldn't want to know my susceptibility for this unless there were more concrete/effective treatments. Does Yasko's testing (as at a quick glance I believe it to) just test for methylation type SNPs? I'll go thru the individual SNPs but wondered if someone had a quick answer, save me the trouble. Do they test for the idleitis SNP

hi - if you cannot get ENT to agree to abx but feel you need to go ahead with this particular ENT and surgery, could you get another dr to rx pre and post op abx? Would this ENT agree to abx during surgery. Are abx during surgery a must if pre and post op abx are administered? I agree with beeknees, I wouldn't touch a T&A without abx but JMHO. I believe Dr T recommends Clindamycin and another abx(not sure which) as a sterilising pre-op combo. Not sure what the rec. is for during or after. There will be folks that know, Im sure....

me too, please

Hi - have you ever done a stool sample to see what bugs she has? I was wondering if this is some kind of horrible herx or maybe as the immune system is so informed by the gut if the change in gut flora is provoking an immune response in some way? dunno... just a thought also have you tried adding fermented foods in at all.. maybe she could tolerate it better if "buffered" in a food... kefir, lassi, sauerkraut etc?

Hi - my PANDAS ds has fairly constant, all over body itching. For him it seems to peek over the night and into the morning but he always itches. At times we thought he had some relief in response to abx or flucanazole (he is a yeasty child) but I dunno.. perhaps just waxing and waning. When we asked our immunologist, he felt it was just idiopathic itching.. so not very helpful. We do have angiodema in the family (sudden, normally facial swelling/anaphalaxis with no identifiable trigger), so the abberrant allergic repsonse is there in the family. We tried Cromolyn which is a mast cell stabiliser and he seemed to itch less but he was 4 at the time and you have to dose 4 times a day in a 1/2 glass of water so compliance was tough and also not easy to work out how useful it was for him. I might try it again for him now he's a bit older and we can better measure success. Good luck in sorting it out...

Hi - our dd is compound hetero with c677t and a1298c and ds homo with c677t. (I'm also compound like dd). We are all taking methylguard plus by thorne. Funnily enough, the person who gets the most from them is dh. He hasn't been tested but has vascular disease in family and must carry at least 1 c677t cos of son's double... so he gets them and has seen a real turn around in mood. Much more even keel, rebounds better emotionally, less easily aggravated, easier anger management. My dh just doesn't take rx/otc stuff but has consistently reminded me to top him up Pr40 - methylguard plus has TMG as one of its ingredients. It has been the only place that I could find it - although, I didn't do an exhaustive search.

too funny my dd, too. We did a combined test Gi , candida etc that needed some spit. She can do blood, poo in a platic hat thingy but I just couldn't get enough spit out of her to do that bit of the test.. non stop whining... now ds.. he'll just spit for the fun of it.. sometimes to the point of looking ticcy but that could just be my PANDAS rampant mind in action

LLM - is it a mouth swab or blood draw for the 23 test? If blood draw did you get a dr to sign off on the draw or could you get it drawn without? And thanks for the info re health ins and genetics. That aspect worried me also. Even though I could see getting the tests doen without a drs knowledge and thus manage no permanent record, I was concerned that if my kids had knowledge of the results and failed to inform etc etc that there may be some legal duty to inform and consequent removal of coverage or something... so thanks for the info.

cobbiemommy - would you mind letting us know what supplements you are using for mitochondrial support. Thanks.

Hi - I think that for some kids vaccine injury may be an initiating or exacerbating factor but in our experience it cannot explain all PANDAS kids. My dd is very minimally vaccinated (HIB and tetanus, just 5 shots in all). We had already decided before PANDAS raised it ugly head that we were giving no more shots as we were concerned with their safety. She developed PANDAS around age 4. My ds who developed PANDAS very early in the first year of infancy has never had any vaccinations at all. Nor will he, as I do believe that for these children, vaccinations can be troublesome. We have been told by Dr B to not vaccinate and by Dr T that we can vaccinate where we think necessary but one at a time and only when well. I won't be giving my kids any more shots unless it is deemed absolutely necessary (dd rides and lots of tetanus round horses, supposedly, so we're unsure about that one) but I suspect that for PANDAS kids there will be different immune provoking triggers that can start this process off in these susceptible kids.

aaahhh my crappy computer - I just typed a lengthy response and lost it.. the bones of it were- smarty and momwith - yep, my bad, the word smooth and PANDAS should never be used in the same sentence I should know better smarty - I will ask her to rate her day's activities as she is having trouble getting a hold of what the specific fears are. dcmom- the better managed mornign start could be a real issue for our dd. We will work on it. Also I offered up a late school start this am and it sealed the deal getting her to school today - great idea. I also threatened involving the school counsellor (she hates this idea) and removing all screen time at home for the day. Not sure if the stick idea is fair but I was desperate. She was sobbing, on her knees begging me not to send her. dcmom and momwith - ur right, bedtime has slipped for us and I need to get it back in line 'cos late nights are a killer for dd. bigmighty - we use ibuprofen and it really helps dd and ds with symptom control but we will also look inot other anti- inflammatories. We have used steroidfs twice for dd very successfully but she put on weight that she never lost and during use came to see herself as an "eater" and is concerned with weight and I am worried that any more weight gain coupled with PANDAS symptoms could tip us towards anorexia dn food withdrawal issues - I dunno maybe it shouldn't worry me. Anyways, thank you all for your great responses and ideas. She see her child psych today so we can go over this some more and discuss some of your ideas. As ever, always gratefull for this board and its members

Hi - more questions- sorry.. We've been experiencing some school refusal with dd. It has been very on and off since about Thanksgiving. She'll go and be fine for a few days or weeks and then suddenly it's too much. This comes after a weekend off normally or an unusually late night. There is no specific fear just an all encompasing fear/anxiety to where she is begging and crying to not go to school. She's only missed 6 days due to it since November and is working hard with the tools given her by the psych and we'll think we're on top of it... she's had a good day, enjoyed school etc realises that the fear is not based in reality and that it is a pure PANDAS fear but here we went again tonight after 2 days off due to stomach pain 'cos she's gotten constipated, suddenly she's back at square 1 with the fear. For others that have been there and dealt with it successfully did you get the same on off problems or was it a smoother curve once the fear could be faced? Her other PANDAS issues including the OCD ones have been steadily improving with the help of ibuprofen. This is such a sneaky b**** of a disorder. I'm dreading Sunday nights.. any ideas on keeping the streak good?

Yeh, like LLM said yeast can be terrible to get rid of. My mom has had years of yeast issues. She did a starch/yeast free diet which she followed for 4 weeks, religiously, 4 weeks of diflucan and back filled with really high quality, good range probiotics and sach b. 3 weeks after stopping the diflucan and starch free diet it all came back just as bad as before! It seems no matter what she does she just can't kick it. She's recently started supporting methylation and maybe seeing some improvement. Fingers crossed....

The idea with sach b is that it is a non pathogenic yeast and so it doesn't cause any problems. The only exception that I've seen is that it shouldn't be used in people with a central line as there have been infections in central line patients via the central line itself. The sach b competes with the candida albicans for space/food etc and thus should help battle yeast. It is also useful for c-diff where, I believe, it lowers c-diffs ability to attach to the gut somehow. The rider on that is that some PANDAS kids seem to react negatively to some probiotics. I suspect that's because the gut biome affects the immune system and that PANDAS kids can be exquisitely sensitive to immune system stimulus. Both my kids have always done well on Pharmax, Culturelle and Custom Probiotics probiotics and Florastor without any negative side effects, so far You can culture for yeast. Our ds has had it show up a couple of times on a throat swab culture. Good luck..

Hi - did they swab? I would, only because I read a study that found that something like (and this is from memory) 80% of itching in girls under 12 that is assumed to be yeast, is in fact a vaginal strep infection. I was super surprised by this number. So if it hasn't been swabbed It seems like it may be a good idea just in case.... As for the yeast... when ds was treated with diflucan we got some herx type stuff from day 3 until day 10 or so. He was tired, extra crabby, some aching flu-type symptoms. We did lots of probiotics and sach b. The florastor literature says not to take when on antifungals. I suspect cos it negates some of it but we did it anyway. Thought it couldn't hurt even if some was killed off. Hope you see some relief.

Hi - we had maybe just 2 episodes of this with dd when she was maybe 18 months or so. We also thought parotid cos my mom had had issues with that (she was getting dehydrated and that was the partial cause for her). our ped said to get her to suck a lemon. The astringency causes the saliva glands to really get going and that can shift any blockage. We finally determined it wasn't parotid and just ended up with a fairly muddy dx of angiodema. It does run in the family - my bro gets tongue and lip swelling with no identifiable trigger and ds is always itchy also with no identifiable triggers - perhaps for ds and my bro it's just aberrant mast cells. Perhaps you could try the sucking a lemon or drinking lemon juice thing to see if it does anything... Good luck, hope you get to the bottom of it.

Hi - I said no for language skills but for my ds there was a very sudden onset of stuttering at age 3 that resolved with abx. It lasted 3-4 weeks or so and is the only language processing issue I've noticed with either kids.

Hi - I would imagine you can/would because NAC is a biofilm buster. This is a link to a previous post by LLM on NAC and biofilms.... http://www.latitudes.org/forums/index.php?showtopic=15117

Hi - we've been using bioemulsion forte for a while now, 2 drops a day or so but not pulsed. Only using for vit d supplementation. Did the dr explain why it's good for viruses?

We love HCL probiotics by Pharmax. A local pharm carries them but you may need to order. We use the powder. It tastes good and we hide other supps under it on a spoon but here's a link to the caps but will tell you what strains are in it etc. That is our mainstay along with Florastor. We also try and get in fermented foods where possible. http://www.amazon.com/Pharmax-High-Potency-Capsules-vcaps/dp/B000NE9CT8

Hi - both of my kids have been helped by ibuprofen. At times it has made their symptoms almost disappear, while at other times, it may just take the edge off. It has helped tics, OCD/anxiety, hyperness, aggressiveness etc. However, there have been times for both children where it hasn't seemed to help at all, although, this isn't the norm for us. Sometimes we get relief with it from the 1st dose and at other times we need to do a few days at full dosing before we see it helping. I don't think a lack of response to ibuprofen would indicate that it's not PANDAS. Perhaps, the inbuprofen just isn't a big enough gun wrt the inflammation.

Hi - the only thing that would make me think this isn't the case is that our dd had an episode on the back of a fairly severe allergic reaction to a food. She is allergic to cashews and pistachios and had some at a school event. She hadn't had any PANDAS symptoms in the few months prior and within 12 hours of the food reaction, she was in a flare. It lasted a couple of weeks. Now I could imagine that maybe some chronic infection (maybe in the brain) coupled with this new immune provocation may cause issues, so possibly I guess. Dr T also thinks the auto-antibody theory is incorrect. He believes it is an issue that stems from an abberant fever response and protaglandins in the hypothalamus, I believe. I probably just murdered his theory but something along those lines. Maybe some chronic infection in that brain area could affect the functioning of the hypothalamus which has got its finger in many pies from appetite and behaviour to temperature regulation.

So pleased that you are seeing such great improvements

Hi - did they use nitrous oxide in addition to the midazolam. It's just that for some people that have a specific genetic polymorphism that interferes with their ability to methylate properly, nitrous oxide can be an issue. In rare cases. it may even cause death although thsi is very uncommon, I believe. I think it has to do with a precipitous drop in B12 and was wondering if this could have had an effect on ticcing in your child. Dunno just an idea. It is also possible that the ticcing could be as a result of a reaction to bacteria that could have been released during the procedure. Have you considered PANDAS/PANS? Just ideas, good luck. Hope the dental goes ok.