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Hi - just a thought but if ur worrried about using singulair you could discuss using cromolyn which is a mast cell stabiliser with ur DAN dr.... it has been overtaken by drugs like singulair, in part, cos of dosing and compliance (cromolyn has to be taken 4 times a day) but it has a excellent safety record and possibly not some of the sensitivity issues for PANDAS kids such as singulair.....

Hi - I also saw someone post recently that either Dr L or Dr M (can't remember which) said that those with MTHFR polymorphisms that impact the methylation pathway, aren't showing a rise in titers...

Yeh, I agree that the article was disappointing in that respect but if someone more literate than I can get some good comments in there, it gets such a wide distribution. It's a shame tho' that the topic got hi-jacked. Really pleasing to see how mainstream this is becoming even if the articles aren't all we might hope they would be.....

Hi - only one I've tried is imitrex tablets. I don't like the feel of them.. I seem to get the laundry list of side effects.. from tight throat to neck pain, tight band on head, just feeling odd etc, so only take when got a real doozy but it does work. I find I need to take some ibuprofen about 2 hours after the imitrex to really kick it into touch. It is supposed to only work for true migraines and when taken early on (or so dr said ) but I can also take it for headaches that come from bad neck (whiplash yrs ago) and even if they've been brewing for a couple of days.

Hi - some drs believe that the B cells, that should stop pumping out the antibodies once the threat is over, instead keeping making antibodies in some of these kids... what has me stumped tho is this.. we have seen the three week half-life of antibodies very obviously in action when our dd had a serum sickness reaction to augmentin. As predicted, her reaction stopped at 20/21 days, the half-life of the antibody that was combining with the antigen and causing deposition of immune complexes in her skin and joints. When our dd has taken steroids (2 times)to quell flares that looked to be getting really bad, she had at least a 70% response within 12 hours of the first dose. If the culprit is autoreactive antibodies attacking the basal ganglia and the effect of steroids is to decrease inflammation and to maybe help the integrity of the BBB, I'm surprised that with the half-life of the antibodies still hanging around in the brain being 20 odd days that her response has been so fast and so nearly complete (full, lasting remission with 5 day burst within 4-5 days the 1st time and 90% remission again within 4-5 days the second time). I can see how the anti-inflammatory effect could do this but would it last the 3 weeks that the antibodies should last even if no more are able to get thru the BBB... dunno.. ...

Hi - yeh, Dr Garth Nicholson (the dr that's associated mycoplasmas with gulf war syndrome and done lots of work on m. pneumoniae and other variants of myco) has said that you can't fight myco without adequate selenium.... 1 brazil nut, supposedly, has enough selenium in it for daily intake not sure if it has all four types mind you but an easy fix if a child can and will eat nuts....

Hi - another thing u might want to consider is a mast cell stabiliser such as cromolyn. Mast cells behaving badly can cause a plethora of GI symptoms. Something like cromolyn is expensive but has a great safety record. It has been overtaken by newer drugs for most issues 'cos of ease of dosing mainly - you have to take cromolyn 4 times a day in water but it is colorless, odorless and tasteless. It can take up to 2-3 weeks for full efficacy, I believe. It has to be rxd. Don't know if it will help but maybe something to consider....

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Hi - I posted a while ago about an article that I read but have since not been able to find, that stated that H1 antihistamines (benedryl etc the classic anti hive type stuff) caused the BBB to be less efficient, while H2 antihistamines (the ones used for lowering stomach acid production) increased the integrity of the BBB. If this article was right then it could possibly explain the beneficial effects that people see. If true it would also contraindicate H1s for PANDAS kids.... I'll try and find the article again.

Hi - You could see a flare form infection released into the bloodstream. It could also be vascular changes impacting the blood brain barrier from general anesthesia and allowing any circulating autoantibodies present access to the brain. It could also be the nitrous oxide, if your child has a MTHFR polymorphism that impacts the methylation cycle. Nitrous oxide can be issue for these kids as it lowers B12 to possibly drastic levels for some kids with these genetic mutations. In very rare instances it has been fatal. I imagine for some kids that the sudden lowering of B12 could maybe induce a flare. Nitrous oxide also interferes with methionine synthesis and, consequently, incresases homocysteine. High homocysteine levels can negatively impact the integrity of the blood brain barrier. This could also be of increased importance if your child has a MTHFR polymorphism. Here's a quick link to a paper looking at this but there was a great article that someone posted on here re: using anesthesia in, specifically, autistic kids but I am sure the principles apply elsewhere too. I'll see if I can find it again.... http://www.ncbi.nlm.nih.gov/pubmed/21680854

Hello - no info on the center but just wanted to say how sorry I am that your son and your family are in this position and that I hope things get better for you all. Thinking of you.....

Hi - don't know the efficacy but have read interesting stuff about using honey from your locale.. gotta be within like 10 miles or so of where you live. The idea is you use it all year long, exposing yourself to small amounts of the allergens in your area and when next year comes around you are less reactive, like allergy shots.... dunno but maybe worth researching. Can see how this probably may not be useful with grasses but for other seasonal allergies may be worth a look......

Hven't had a good look at this site but seems to contain lots of info.. http://www.nutritionalmagnesium.org/ and here's an excerpt from one of the drs on the site re ca/mag balance Typically, less than half of calcium intake is absorbed in the gut(2), the rest either being excreted or potentially forming kidney stones or being transported to soft tissues where it can harden (calcify). Adequate levels of magnesium are essential for the absorption and metabolism of calcium and vitamin D. Magnesium converts vitamin D into its active form so that it can aid calcium absorption. Magnesium also stimulates the hormone calcitonin, which helps to preserve bone structure and draws calcium out of the blood and soft tissues back into the bones, lowering the likelihood of osteoporosis, some forms of arthritis, heart attack and kidney stones. There is a growing amount of scientific evidence pointing to high calcium - low magnesium intake leading to calcification, or hardening, of arteries (atherosclerosis - the number one cause of death in the U.S.), osteoporosis and osteoporotic bone fractures(3, 4). Recommendations for calcium intake vary greatly. In the U.S., adults are told to take 1,000 mg per day and women over 50 are told to take up to 1,500 mg. In the United Kingdom, the RDA is 700 mg daily, while the World Health Organization recommends only 400-500 mg. Often supplementation is taken without consideration for the amount of calcium in the diet both from food sources and from water. Many people, especially those consuming dairy products, have high-calcium diets. This can lead to a greater amount of unabsorbed calcium. "Most people - and most MDs - do not understand the importance of calcium-magnesium balance at a cellular level. The effectiveness and benefits of calcium with respect to bone health and the prevention of osteoporosis are enormously impaired in the absence of adequate levels of magnesium in the body," Dr. Dean states. "If we consume too much calcium without sufficient magnesium," according to Dean, "not only will we create stress within the body but the excess calcium won't be utilized correctly and may become toxic. Magnesium keeps calcium dissolved in the blood. Too much calcium and too little magnesium can cause some forms of arthritis, kidney stones, osteoporosis and calcification of the arteries, leading to heart attack and cardiovascular disease(5). "The commonly agreed-upon ratio of 2:1 calcium to magnesium found in many supplements traces back to French scientist Jean Durlach(6)," explains Dean, "who stipulated the 2:1 ratio as an outermost not-to-be-exceeded level when considering calcium intake from all sources (food, water and supplements). This has been largely misunderstood and is taken as a recommendation of a 2:1 calcium-to-magnesium imbalance. "The fact that most people do not get their minimum daily requirement of magnesium exacerbates the situation. The high calcium - low magnesium diet of most Americans when coupled with calcium supplementation can give a Ca to Mg imbalance of 4: or 5:1, which constitutes a walking time bomb of impaired bone health and heart disease." Dr. Dean recommends monitoring calcium intake, supplementing with vitamin D, getting the minimum daily requirement of magnesium, "and going for a 1:2 or at the very least a 1:1 calcium-magnesium balance."

here's a link to the spray 1.5mg I think.... http://www.healthdesigns.com/source-naturals?form=213&gclid=CKrUsIyHnq8CFQaFhwoduk6kcA

Hi - there is a spray that is time release. I know it sounds counter-intuitive but the droplets are nano coated or some such. Our local Wholefoods carries it and it is by Source Naturals, I believe. It won't keep my kids asleep but no amount of melatonin will but I believe other folks have good success with it..... It does contain a preservative I think which the tablets won't have, if that is an issue......

thanks

sorry - last question - LLM that avon product is deet free. Is deet a necessary for ticks? Don't like the idea of putting deet on the kids but might hate the idea of ticks more... thanks again..

excellent - thank you both

Hi - sorry if this a daft post/question but we're off on hoilday june/july to central oregon. Beautiful spot but rental house has proud photos of deer in the backyard and I nearly didn't book it but talked myself down, booked it but now would like to know how to avoid getting ticked. Is this a reasonable concern? (background 2 pandas kids, no known lyme component) Thanks.

Hi - you can test for titers for the dtap and your ped may be wrong about individual vacs as we managed to get our dd a tetanus vac (before pandas) without the pertussis part but maybe the pertussis doesn't come as stand alone. Not sure about the polio vaccine tho re titers etc. Dr B told us not to vaccinate. Do you see a big name pandas dr too.. could they do you a medical exemption? good luck...

Hi - not sure about other PANDAS drs but our ped who is our local expert - she has maybe 90 or so PANDAS kids, I believe, from all over our region, is testing this as part of her PANDAS testing in general and is seeing many kids with this single nucleotide polymorphism (SNP) and is also seeing improvement with many of these kids when supplementing for MTHFR. Our dd8, hasn't been baseline for over 2 years now, running about 95-97% but nor has she had any flare that's taken her below maybe 90% at worst since we've been supplementing for MTHFR and that includes a known exposure to her strep +ve brother. She is compound heterozygour for C677T and A1298C. Her brother is homozygous C677T. Trouble is you can think 'oh, we've only got one' eg hetero but more reading you do, the more you realise that there are not only other SNPs that effect nmethylation but even more on the MTHFR itself that don't get tested for as a rule but can really impact you're methylation. Not sure it's the magic bullet but can be a big part of the picture for some. We're still umming and ahhing over doing the full Yasko genetic test for both kids... cost is $500 per child.... would be interesting to see what else may be feeding into this.....

Yep our test said mthfr dna and looked for both.. also thought I'd mention cos I saw it buried in another recent post (can't remember who ) but i believe they said that either Dr L or Dr M beleive that it's the MTHFR SNP kids that don't show a rise in strep titers.... can anyone confirm this is what either Dr said.. thanks...

Isn't it also used to treat biofilms because of the mucus thinning property? Could it be getting to some chronic biofilm bugs and her immune system/any abx she may be on is getting them while out in the open and causing some die off reaction? dunno just a thought....

Hi - we've done 60mg for 5 days and had great results each time. 100% sustained remission first time, with improvement within 12 hours of the first dose and about 90% remission the second time, again, with noticeable improvements within 12 hours. good luck...

Hi - only bribes, and expensive ones! Blood draws are super costly in our house but it has worked for us but I can see that some kids may be way beyond bribery... good luck..