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norcalmom

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  1. Like
    norcalmom got a reaction from T_Mom in Pandas Physicians Network website - who knew?   
    The site is awesome. Its copyrighted 2014 - its pretty new. Its kind of exciting....heretofore all the sites have been parent patient initiated or single doctor (with just a page...) the site is very polished, easy to navigate...
     
    The list of its members its great...although I don't see Agalliu on there...hmmm they are asking for funding for him on one of there pages, they should get his name on there too...
     
    Thanks so much for posting and finding!
  2. Like
    norcalmom got a reaction from EAMom in Conference   
    Did Dr Agaliu say anything about when he may publish something? Or Cunningham? The past several conferences (several years worth)) they were in the verge if publishing - and it's been so long. It's so frustrating. Dr A has only been working pandas for 2(?) years or so-about .but Dr C has had thousands of blood samples from years of research.
    I am the biggest fan if those two- the raw science and data is what will ultimately lead to acceptance and the best, most targeted, treatments, but they need to get it out there to the medical community.
  3. Like
    norcalmom reacted to norcalmom in Rx Circumin vs. OTC Turmeric   
    We've used Minerva-it's a liposodal curcummin. I think the research indicates your need massive amounts if turmeric to make a difference.
     
    I've cooked with my neighbor from India(awesome food) they buy bags of turmeric-(like 5lbs!) and they cook with handfuls. Everyday. That's what you need if you want benefits using turmeric- not a tiny pill of it.
     
    I can't remember the cost, but you can google it. We didn't use religiously, I used it during flares instead of, or along with Advil, but when we started we did almost everyday for a while.
  4. Like
    norcalmom got a reaction from EAMom in Does Buster read here anymore? Look at this!   
    Great find Peglam!
    Thanks for posting. It's a very small study, and very specific to strep, and Turkey, but exciting to see they are looking at this in our kids. I guess Turkey has a lot of untreated strep, (according to the article) and maybe a genetic variation in their population (my interpretation if the data- since only done on Turks).
    Go to the SNPepedia page LLM references above (thanks LLM!)- having the AA allele is associated with a number of risk factors, as well as even some benefits(lowered risk if MS)
    And- if you read the psoriasis summary- if you have the AA allele and you're polish you have increases risk, but if you have the allele and you're Irish, decreased risk.
    My pandas son does not have the AA allele. Our whole family is GG.
    Having the gene may put you at higher risk for getting pandas ( especially if you are Turkish, and have strep as trigger) - but it's just a risk factor. This looks like somewhat common. It isn't one of those gene mutations that mean you definitely have or will get a disease, for those of you reading that haven't done any genetic testing/research.
    Great find. We're getting there!
  5. Like
    norcalmom got a reaction from LaurenK in Mycoplasma article   
    Not a bad review of mycoplasma and it's extra-plumonary complications and autoimmune implications. Use of steroids, immunotherapies, etc reviewed.
    http://onlinelibrary.wiley.com/doi/10.1111/j.1469-0691.2007.01834.x/full
  6. Like
    norcalmom reacted to norcalmom in Anti-Lysoganglioside research   
    In autistic children
  7. Like
    norcalmom got a reaction from EAMom in Have you done or would you do the Cunningham Panel?   
    They don't talk about SC in the results any more. They mention SC in a 3 page document explaining the disorder, but not the fact that the SC sera was found to be much higher.
    They have a green( unlikely) yellow(likely ) and Red ( highly likely) bar chart - hard to see where the actual cut offs even are. But- for Cam K looked like 120-185 puts you in the likely zone, and above 185 in the highly likely- however- then there is a separate bar that has a combined "likely hood"- that combines all the anti neuronals and cam k- cam k is HIGHLy weighted. But for example, my son had one anti n at the high end of norm, and others elevated but closer to norm. Only his cam k was really high- and in the combined scale, he was still in the "highly likely" range. It looks like adjusted his ck down 5points or so.
  8. Like
    norcalmom reacted to LNN in Probiotics produce neurotransmitters   
    This was a really interesting article, courtesy of EAMom on FB -
     
    Lactobacillus and Bifidobacterium species are known to produce GABA. Escherichia, Bacillus, and Saccharomyces produce norepinephrine. Candida, Streptococcus, Escherichia, and Enterococcus produce serotonin. Bacillus and Serratia produce dopamine, and Lactobacillus species produce acetylcholine. That's pretty much the entire hit parade of major neurotransmitters (there's histamine and glutamate and a few others - and histamine is known to be produced by some bacteria that infect shellfish, for example, causing food poisoning).
     
    The most interesting case here is GABA, the major inhibitory neurotransmitter in the nervous system (it chills things out)--and there are whopping amounts made by the bacteria in fermented foods, and is also found in yogurt and typical probiotic capsules. GABA also turns out to be anti-inflammatory in the gut itself, decreasing the release of inflammatory cytokines. Thus there is a plausible mechanism by which certain probiotics could decrease inflammation and aid symptoms of conditions such as irritable bowel syndrome, and, considering the vagus nerve and all it's tendrils in the gut, have direct communication via the neurotransmitter GABA to the brain.
     
    The full article is here http://www.psychologytoday.com/blog/evolutionary-psychiatry/201206/groovy-probiotics and the author has a number of interesting articles on similar topics. She has a really interesting article on the role of the Vagus nerve in helping the gut communicate with the brain.
     
    What's interesting to me is that Saccharomyces produces norepinephrine. This stuff makes is in novocaine and makes me feel really speedy and agitated. So my DDS now uses a novacaine without it and it's way better. Wondering if this is one reason Sacc B makes my DS angry and aggressive. There's apparently an "ideal" ratio between probiotics and our LLMD feels we may sometimes have too much Lacto and not enough Bifido. Doing a stool test right now to test for yeast and fungus and one question will be - are we using the right blend of probiotics to have balanced flora.
     
    Thanks EAMom!
  9. Like
    norcalmom reacted to momofadult in Have you done or would you do the Cunningham Panel?   
    I, too, find myself thankful for the things that are better but still wish for it ALL to better. Hopefully the next round of IVIG will get him closer to his baseline. The test seems to not only have been helpful with diagnosis but helpful in objectively monitoring treatment response. The test may become the kind of measure that can eventually lead to the development of treatment protocols and make insurance reimbursement easier. BTW, we found glutamate modulating supplements and meds helpful with the irritability, OCD, and anxiety symptoms. The symptoms are improved, though not gone, so we are still working on them.
  10. Like
    norcalmom got a reaction from EAMom in 7 weeks post ivig   
    In Brain on Fire, a book about a young woman with NMDA encephalitis ( where rouge antibodies to a specific receptor on neuronal tissue get through the BBB and attack the brain- usually after an illness and sometimes assiciared with ovarian cancer) the doctor and author describe "getting better in reverse order if symptoms".
     
    I like Dr Ks - turning back the pages annalogy better!
    And- this disorder is also treated with IVIG. Many similarities to pandas.
  11. Like
    norcalmom got a reaction from EAMom in Have you done or would you do the Cunningham Panel?   
    We just did this test again. This was the 3rd time. First time, cam k 176, very high Lysoganglioside.(5x median), boarder line but normal D1 and D2. That was 3 years ago- and what I needed to see for me to be comfortable with flying halfway cross country to do IVIG. Second time, 4 mos post IVIG, camK 130, so very close to normal, most issues had resolved. 9 mos after that a couple of more severeve symptoms had returned, so we did another IVIG. Helpful, but not as impact full as first IVIG. No Cunningham's tests done then- I think lab was closed.
    Fast toward a couple years, finding MycoP after 2nd IVIG possible Lyme and lots of antibiotics for that. His symptoms have changed a lot in the past year. No longer tics- prior to first IViG he looked like Tourette's. and he no longer has extreme exacerbation a with every sniffle(he would add 5 or 6 categories if symptoms bed wetting,,new OCD stuff, insomnia, nightmares, age regressions,etc) does not do that anymore.
    BUT his major OCD thing and general irritability are just getting progressively worse. Some worsening with illness and stress, but nothing like before. So- I now need to ask myself if this is what we are left with after years if it, or is some immune issue- is he still making antibodies to his own brain, in which case I want him to have another IVIG. And if not- we might go to Florida for 3 week intensive CBT program- which I am dreading the pain that would cause entire family, but we are willing to try anything that might work.
    Cam K was 215. Lysoganglioside -now normal ( and that is the antineronal linked to Tics, which makes sense) and D 1 was on the line for high, the exact cut off number. Other two in normal range. So I'm glad I did the test (and not the CBT- because I don't think it would work, and would have been very painful for him- and me since I am his trigger).
    We are now pursuing another IVIG. This time will do the 2.0 dose, his previous 2 were at 1.5, and will do steroids for few days before/after due to extreme side effects he had last 2 times.
     
    It looks like his mycoP is moving in the right direction. So wish us luck. I really hope that he's finally in a place where it will "stick", and he's also now been doing a much of immune regulating supplements based upon MTHFR mutations, really low D, and a couple other things, I hope will support him better.
    Ideally I would have liked more time to see of the methylation stuff, immune regulation supplements, Vit d and just being MycoP free would be enough to turn it around, but I don't feel we have the luxury to wait and see.
     
    But as far as this test goes- I think it's invaluable. If I could get results in a few days rather than 6 weeks, I would wait, to see if it was trending downward- same way I tracked his MycoP titer. Hopefully someday they will get to that point. For now, I'm just so glad it exists to help guide us. I think when Dr C publishes her next round if papers associated with these tests, more docs and more if us will be able to look at the numbers and see the value in the tests. The biggest fault they have at the moment is that her original studies had very small groups. But after years and thousands of tests later she opened the lab- so I'm betting her next papers will put an end to any arguments about these tests. I don't think she would open a lab if her years if data didn't support it.
  12. Like
    norcalmom got a reaction from EAMom in Have you done or would you do the Cunningham Panel?   
    It's a new test. At some point I can see all the doctors and patients that are considering IVIG requiring it. Dr K devised his own test- give your kids steroids to see if they react to halting the immune response. I'd much rather give them a test to se if their immune system is creating high amounts of autoantibodies, then giving them a powerful drug.
     
    Not everybody has PANS and pandas that have the symptoms, and strep is so incredibly common, it's found in a very high percentage of normal, non sick, non pandas kids when studies have been done of large communities. A strep titer is not a very specific measure of anything. Something like 20 percent of the kids in any classroom will throat culture positive for strep in the winter months.
     
    The test can tell you if your child will very likely respond to IVIG (and steroids). And possibly other immune modulating treatments. It also like a screening test for infection. If your child is high, and has not had strep- start looking, because they probably have another infection and or low immune response, and than needs to be addressed, in addition to any pandas treatment.
     
    Even if your child had strep- strep s SOOO common- it does not mean they don't also have an underlying infection or immune issue. I'm of the opinion that they probably do. We need to move beyond looking at just strep. Look at the immune system, like all the other autoimmune diseases.
  13. Like
    norcalmom got a reaction from Kathy4Him in Lesson on Stress -   
    I had a bad night last night, riddled with doubt and self-blame, and post traumatic stress. I don't want to rant about it, because we all have those nights, and just knowing that all of you out there have had them and know what I'm going through is comfort enough. Its the stuff that seems to never end that gets to me. The progress is so slow, and it seems so easy to slip backwards.
     
    I woke to find this in my inbox- and I know everyone on this board will appreciate the message. We all need to give ourselves permission to put the glass down every now and then.
     
     
     
     
    Subject: A Great Lesson on Stress A young lady confidently walked around the room while leading and explaining stress management to an audience with a raised glass of water. Everyone knew she was going to ask the ultimate question, 'half empty or half full?'... She fooled them all .... "How heavy is this glass of water?" she inquired with a smile.
    Answers called out ranged from 8 oz. To 20 oz.
    She replied , "The absolute weight doesn't matter. It depends on how long I hold it.
    If I hold it for a minute, that's not a problem. If I hold it for an hour, I'll have an ache in my right arm.
    If I hold it for a day, you'll have to call an
    Ambulance. In each case it's the same weight, but the longer I hold it, the heavier it becomes." She continued, "and that's the way it is with stress. If we carry our burdens all the time, sooner or later, as the burden becomes increasingly heavy, we won't be able to carry on."
    "As with the glass of water, you have to put it down for a while and rest before holding it again. When we're refreshed, we can carry on with the burden - holding stress longer and better each time practiced.
    So, as early in the evening as you can, put all your burdens down. Don't carry them through the evening and into the night... Pick them up tomorrow. 1 * Accept the fact that some days you're the pigeon, and some days you're the statue!
    2 * Always keep your words soft and sweet, just in case you have to eat them.
    3 * Always read stuff that will make you look good if you die in the middle of it.
    4 * Drive carefully... It's not only cars that can be recalled by their Maker.
    5 * If you can't be kind, at least have the decency to be vague.
    6 * If you lend someone $20 and never see that person again, it was probably worth it.
    7 * It may be that your sole purpose in life is simply to serve as a warning to others.
    8 * Never buy a car you can't push.
    9 * Never put both feet in your mouth at the same time, because then you won't have a leg to stand on.
    10 * Nobody cares if you can't dance well. Just get up and dance.
    11 * Since it's the early worm that gets eaten by the bird, sleep late.
    12 * The second mouse gets the cheese.
    13 * When everything's coming your way, you're in the wrong lane.
    14 * Birthdays are good for you. The more you have, the longer you live.
    16 * Some mistakes are too much fun to make only once.
    17 * We could learn a lot from crayons. Some are sharp, some are pretty and some are dull. Some have weird names and all are different colors, but they all have to live in the same box.
    18 * A truly happy person is one who can enjoy the scenery on a detour.
    19 * Have an awesome day and know that someone has thought about you today.
    AND MOST IMPORTANTLY
    20 *Save the earth..... It's the only planet with chocolate!* I THINK !!!!
    Today someone asked me if I liked you. I laughed, and I said, "Ha! That's funny!! I absolutely LOVE that woman!! She's funny, caring, crazy as heck, sweet, beautiful, she's reading this email right now & I love her!!"
    Be the kind of woman that when your feet hit the floor each morning the devil says~~ "Oh Crap, She's up!"
  14. Like
    norcalmom got a reaction from mama2alex in Lesson on Stress -   
    I had a bad night last night, riddled with doubt and self-blame, and post traumatic stress. I don't want to rant about it, because we all have those nights, and just knowing that all of you out there have had them and know what I'm going through is comfort enough. Its the stuff that seems to never end that gets to me. The progress is so slow, and it seems so easy to slip backwards.
     
    I woke to find this in my inbox- and I know everyone on this board will appreciate the message. We all need to give ourselves permission to put the glass down every now and then.
     
     
     
     
    Subject: A Great Lesson on Stress A young lady confidently walked around the room while leading and explaining stress management to an audience with a raised glass of water. Everyone knew she was going to ask the ultimate question, 'half empty or half full?'... She fooled them all .... "How heavy is this glass of water?" she inquired with a smile.
    Answers called out ranged from 8 oz. To 20 oz.
    She replied , "The absolute weight doesn't matter. It depends on how long I hold it.
    If I hold it for a minute, that's not a problem. If I hold it for an hour, I'll have an ache in my right arm.
    If I hold it for a day, you'll have to call an
    Ambulance. In each case it's the same weight, but the longer I hold it, the heavier it becomes." She continued, "and that's the way it is with stress. If we carry our burdens all the time, sooner or later, as the burden becomes increasingly heavy, we won't be able to carry on."
    "As with the glass of water, you have to put it down for a while and rest before holding it again. When we're refreshed, we can carry on with the burden - holding stress longer and better each time practiced.
    So, as early in the evening as you can, put all your burdens down. Don't carry them through the evening and into the night... Pick them up tomorrow. 1 * Accept the fact that some days you're the pigeon, and some days you're the statue!
    2 * Always keep your words soft and sweet, just in case you have to eat them.
    3 * Always read stuff that will make you look good if you die in the middle of it.
    4 * Drive carefully... It's not only cars that can be recalled by their Maker.
    5 * If you can't be kind, at least have the decency to be vague.
    6 * If you lend someone $20 and never see that person again, it was probably worth it.
    7 * It may be that your sole purpose in life is simply to serve as a warning to others.
    8 * Never buy a car you can't push.
    9 * Never put both feet in your mouth at the same time, because then you won't have a leg to stand on.
    10 * Nobody cares if you can't dance well. Just get up and dance.
    11 * Since it's the early worm that gets eaten by the bird, sleep late.
    12 * The second mouse gets the cheese.
    13 * When everything's coming your way, you're in the wrong lane.
    14 * Birthdays are good for you. The more you have, the longer you live.
    16 * Some mistakes are too much fun to make only once.
    17 * We could learn a lot from crayons. Some are sharp, some are pretty and some are dull. Some have weird names and all are different colors, but they all have to live in the same box.
    18 * A truly happy person is one who can enjoy the scenery on a detour.
    19 * Have an awesome day and know that someone has thought about you today.
    AND MOST IMPORTANTLY
    20 *Save the earth..... It's the only planet with chocolate!* I THINK !!!!
    Today someone asked me if I liked you. I laughed, and I said, "Ha! That's funny!! I absolutely LOVE that woman!! She's funny, caring, crazy as heck, sweet, beautiful, she's reading this email right now & I love her!!"
    Be the kind of woman that when your feet hit the floor each morning the devil says~~ "Oh Crap, She's up!"
  15. Like
    norcalmom got a reaction from JuliaFaith in Lesson on Stress -   
    I had a bad night last night, riddled with doubt and self-blame, and post traumatic stress. I don't want to rant about it, because we all have those nights, and just knowing that all of you out there have had them and know what I'm going through is comfort enough. Its the stuff that seems to never end that gets to me. The progress is so slow, and it seems so easy to slip backwards.
     
    I woke to find this in my inbox- and I know everyone on this board will appreciate the message. We all need to give ourselves permission to put the glass down every now and then.
     
     
     
     
    Subject: A Great Lesson on Stress A young lady confidently walked around the room while leading and explaining stress management to an audience with a raised glass of water. Everyone knew she was going to ask the ultimate question, 'half empty or half full?'... She fooled them all .... "How heavy is this glass of water?" she inquired with a smile.
    Answers called out ranged from 8 oz. To 20 oz.
    She replied , "The absolute weight doesn't matter. It depends on how long I hold it.
    If I hold it for a minute, that's not a problem. If I hold it for an hour, I'll have an ache in my right arm.
    If I hold it for a day, you'll have to call an
    Ambulance. In each case it's the same weight, but the longer I hold it, the heavier it becomes." She continued, "and that's the way it is with stress. If we carry our burdens all the time, sooner or later, as the burden becomes increasingly heavy, we won't be able to carry on."
    "As with the glass of water, you have to put it down for a while and rest before holding it again. When we're refreshed, we can carry on with the burden - holding stress longer and better each time practiced.
    So, as early in the evening as you can, put all your burdens down. Don't carry them through the evening and into the night... Pick them up tomorrow. 1 * Accept the fact that some days you're the pigeon, and some days you're the statue!
    2 * Always keep your words soft and sweet, just in case you have to eat them.
    3 * Always read stuff that will make you look good if you die in the middle of it.
    4 * Drive carefully... It's not only cars that can be recalled by their Maker.
    5 * If you can't be kind, at least have the decency to be vague.
    6 * If you lend someone $20 and never see that person again, it was probably worth it.
    7 * It may be that your sole purpose in life is simply to serve as a warning to others.
    8 * Never buy a car you can't push.
    9 * Never put both feet in your mouth at the same time, because then you won't have a leg to stand on.
    10 * Nobody cares if you can't dance well. Just get up and dance.
    11 * Since it's the early worm that gets eaten by the bird, sleep late.
    12 * The second mouse gets the cheese.
    13 * When everything's coming your way, you're in the wrong lane.
    14 * Birthdays are good for you. The more you have, the longer you live.
    16 * Some mistakes are too much fun to make only once.
    17 * We could learn a lot from crayons. Some are sharp, some are pretty and some are dull. Some have weird names and all are different colors, but they all have to live in the same box.
    18 * A truly happy person is one who can enjoy the scenery on a detour.
    19 * Have an awesome day and know that someone has thought about you today.
    AND MOST IMPORTANTLY
    20 *Save the earth..... It's the only planet with chocolate!* I THINK !!!!
    Today someone asked me if I liked you. I laughed, and I said, "Ha! That's funny!! I absolutely LOVE that woman!! She's funny, caring, crazy as heck, sweet, beautiful, she's reading this email right now & I love her!!"
    Be the kind of woman that when your feet hit the floor each morning the devil says~~ "Oh Crap, She's up!"
  16. Like
    norcalmom got a reaction from cobbiemommy in Lesson on Stress -   
    I had a bad night last night, riddled with doubt and self-blame, and post traumatic stress. I don't want to rant about it, because we all have those nights, and just knowing that all of you out there have had them and know what I'm going through is comfort enough. Its the stuff that seems to never end that gets to me. The progress is so slow, and it seems so easy to slip backwards.
     
    I woke to find this in my inbox- and I know everyone on this board will appreciate the message. We all need to give ourselves permission to put the glass down every now and then.
     
     
     
     
    Subject: A Great Lesson on Stress A young lady confidently walked around the room while leading and explaining stress management to an audience with a raised glass of water. Everyone knew she was going to ask the ultimate question, 'half empty or half full?'... She fooled them all .... "How heavy is this glass of water?" she inquired with a smile.
    Answers called out ranged from 8 oz. To 20 oz.
    She replied , "The absolute weight doesn't matter. It depends on how long I hold it.
    If I hold it for a minute, that's not a problem. If I hold it for an hour, I'll have an ache in my right arm.
    If I hold it for a day, you'll have to call an
    Ambulance. In each case it's the same weight, but the longer I hold it, the heavier it becomes." She continued, "and that's the way it is with stress. If we carry our burdens all the time, sooner or later, as the burden becomes increasingly heavy, we won't be able to carry on."
    "As with the glass of water, you have to put it down for a while and rest before holding it again. When we're refreshed, we can carry on with the burden - holding stress longer and better each time practiced.
    So, as early in the evening as you can, put all your burdens down. Don't carry them through the evening and into the night... Pick them up tomorrow. 1 * Accept the fact that some days you're the pigeon, and some days you're the statue!
    2 * Always keep your words soft and sweet, just in case you have to eat them.
    3 * Always read stuff that will make you look good if you die in the middle of it.
    4 * Drive carefully... It's not only cars that can be recalled by their Maker.
    5 * If you can't be kind, at least have the decency to be vague.
    6 * If you lend someone $20 and never see that person again, it was probably worth it.
    7 * It may be that your sole purpose in life is simply to serve as a warning to others.
    8 * Never buy a car you can't push.
    9 * Never put both feet in your mouth at the same time, because then you won't have a leg to stand on.
    10 * Nobody cares if you can't dance well. Just get up and dance.
    11 * Since it's the early worm that gets eaten by the bird, sleep late.
    12 * The second mouse gets the cheese.
    13 * When everything's coming your way, you're in the wrong lane.
    14 * Birthdays are good for you. The more you have, the longer you live.
    16 * Some mistakes are too much fun to make only once.
    17 * We could learn a lot from crayons. Some are sharp, some are pretty and some are dull. Some have weird names and all are different colors, but they all have to live in the same box.
    18 * A truly happy person is one who can enjoy the scenery on a detour.
    19 * Have an awesome day and know that someone has thought about you today.
    AND MOST IMPORTANTLY
    20 *Save the earth..... It's the only planet with chocolate!* I THINK !!!!
    Today someone asked me if I liked you. I laughed, and I said, "Ha! That's funny!! I absolutely LOVE that woman!! She's funny, caring, crazy as heck, sweet, beautiful, she's reading this email right now & I love her!!"
    Be the kind of woman that when your feet hit the floor each morning the devil says~~ "Oh Crap, She's up!"
  17. Like
    norcalmom got a reaction from EmilyK in Lesson on Stress -   
    I had a bad night last night, riddled with doubt and self-blame, and post traumatic stress. I don't want to rant about it, because we all have those nights, and just knowing that all of you out there have had them and know what I'm going through is comfort enough. Its the stuff that seems to never end that gets to me. The progress is so slow, and it seems so easy to slip backwards.
     
    I woke to find this in my inbox- and I know everyone on this board will appreciate the message. We all need to give ourselves permission to put the glass down every now and then.
     
     
     
     
    Subject: A Great Lesson on Stress A young lady confidently walked around the room while leading and explaining stress management to an audience with a raised glass of water. Everyone knew she was going to ask the ultimate question, 'half empty or half full?'... She fooled them all .... "How heavy is this glass of water?" she inquired with a smile.
    Answers called out ranged from 8 oz. To 20 oz.
    She replied , "The absolute weight doesn't matter. It depends on how long I hold it.
    If I hold it for a minute, that's not a problem. If I hold it for an hour, I'll have an ache in my right arm.
    If I hold it for a day, you'll have to call an
    Ambulance. In each case it's the same weight, but the longer I hold it, the heavier it becomes." She continued, "and that's the way it is with stress. If we carry our burdens all the time, sooner or later, as the burden becomes increasingly heavy, we won't be able to carry on."
    "As with the glass of water, you have to put it down for a while and rest before holding it again. When we're refreshed, we can carry on with the burden - holding stress longer and better each time practiced.
    So, as early in the evening as you can, put all your burdens down. Don't carry them through the evening and into the night... Pick them up tomorrow. 1 * Accept the fact that some days you're the pigeon, and some days you're the statue!
    2 * Always keep your words soft and sweet, just in case you have to eat them.
    3 * Always read stuff that will make you look good if you die in the middle of it.
    4 * Drive carefully... It's not only cars that can be recalled by their Maker.
    5 * If you can't be kind, at least have the decency to be vague.
    6 * If you lend someone $20 and never see that person again, it was probably worth it.
    7 * It may be that your sole purpose in life is simply to serve as a warning to others.
    8 * Never buy a car you can't push.
    9 * Never put both feet in your mouth at the same time, because then you won't have a leg to stand on.
    10 * Nobody cares if you can't dance well. Just get up and dance.
    11 * Since it's the early worm that gets eaten by the bird, sleep late.
    12 * The second mouse gets the cheese.
    13 * When everything's coming your way, you're in the wrong lane.
    14 * Birthdays are good for you. The more you have, the longer you live.
    16 * Some mistakes are too much fun to make only once.
    17 * We could learn a lot from crayons. Some are sharp, some are pretty and some are dull. Some have weird names and all are different colors, but they all have to live in the same box.
    18 * A truly happy person is one who can enjoy the scenery on a detour.
    19 * Have an awesome day and know that someone has thought about you today.
    AND MOST IMPORTANTLY
    20 *Save the earth..... It's the only planet with chocolate!* I THINK !!!!
    Today someone asked me if I liked you. I laughed, and I said, "Ha! That's funny!! I absolutely LOVE that woman!! She's funny, caring, crazy as heck, sweet, beautiful, she's reading this email right now & I love her!!"
    Be the kind of woman that when your feet hit the floor each morning the devil says~~ "Oh Crap, She's up!"
  18. Like
    norcalmom got a reaction from Kathy4Him in new article on PANDAS (from Canada)   
    THAT was a GREAT article. Great overview of the theory, the history, the debate. I also learned a couple things. One is that Swedo is doing TWO rounds of IVIG in this study (looks like 8 weeks apart?)
     
    And the other -
     
    "IVIG is an approved treatment for PANS in Canada". Roadtrip anyone?
     
    thanks for posting EAMom!
  19. Like
    norcalmom got a reaction from SSS in Cunningham Blood Tests   
    PANS/PANDAS is not unlike many (if not most) other autoimmune diseases in that it is believed to be triggered by an infection. MS, RA, Lupus, even NMDAr encephalitis - if you read about them, almost all the literature says they are believed to be triggered by an infection preceding the onset. They don't tend to stay too focued on what kind of infection (and we in the pandas world should move on as well - once we have tested for a number of common infections that can become chronic in our kids of course)
     
    Strep is not the cause. It may be the trigger and other infections are as well. The cause is more complex.
     
    Cunningham's tests seem to be the thing that can finally identify immunologic aberrations in our kids- proof that immune modulating therapies like Steroids and IVIG are justified in order to treat the disorder.
     
    What we don't know is what other disorders or infections - like NMDA and MS, may have high Cam K activity. She has already said that a strep infection - in a healthy, normal individual raises the Cam K, but it does not got very high - but still raises it 10-30% (? can remember exactly) for the period of infection, and then goes down.
     
    While there are still questions about testing, Cunningham has thousands of samples. She says that more than 50% of them are not strep related. And although she has not published any papers on her years of research (she has said she has several papers int he works), I don't believe she would open a lab based upon what she knows if her years of research does not support this being a very good screening test for anti-neuronal activity. Test that support the concept that this is disease that involves the immune system, and suffers will most likely benefit from Immune therapies.
     
    It may also be of benefit in tracking the disease. I'm waiting my states approval so I can test my some again. He previously had very high numbers, that came down after IVIG. But now, things have changed so much I'm not sure we are still dealing with pans - or if he has learned behaviors or other problems that have resulted from pans for 4 years. I'll get another IVIG if I see his Cam K and antineuronals are high, but if not, we will pursue CBT/exposure therapy.
  20. Like
    norcalmom reacted to LNN in B12 with folic acid - is this bad for a 677T single cpy?   
    Those with MTHFR C677T mutations can't convert folic acid into methylfolate well. Estimated that when you're +/- you can convert about 40-60% and if you're +/+ you can convert about 10%. The rest puddles up into a folate block, which can cause issues. You can try it, but it makes my DD emotional and angry. We avoid it now. I also limit the amount of fortified cereal to avoid folic acid.
  21. Like
    norcalmom reacted to EAMom in new article on PANDAS (from Canada)   
    Really good read!
     
    http://thewalrus.ca/a-feverish-debate/
  22. Like
    norcalmom got a reaction from cobbiemommy in Mycoplasma treatment question   
    Doxy great for mycoP, probbaly the best antibiotic for it is you can tolerate it. Keep an eye on sun sensitivity. Most people become highly sun sensitive - where even a couple minutes in the the sun, even with sunscreen, will cause a tingling sensation and burning. I have taken my DS off it in the summer because he is fair, and plays baseball.
     
    . Keep up the probiotics! Researcher Garth Nicohlson says mycoP takes a minimum of 9 months to treat chronic mycoplasma, with high does Doxy (or Doryx - which is easier on the gut). His treatment looks like this -3 months on, and then 2 weeks off, then alternate 2 weeks off and 6 weeks on for remainder of the 9months.
     
    Good news is that the doxy works on some aspects of lyme as well.
     
    good luck. I hope you are onto something.
  23. Like
    norcalmom got a reaction from EAMom in Cunningham Blood Tests   
    PANS/PANDAS is not unlike many (if not most) other autoimmune diseases in that it is believed to be triggered by an infection. MS, RA, Lupus, even NMDAr encephalitis - if you read about them, almost all the literature says they are believed to be triggered by an infection preceding the onset. They don't tend to stay too focued on what kind of infection (and we in the pandas world should move on as well - once we have tested for a number of common infections that can become chronic in our kids of course)
     
    Strep is not the cause. It may be the trigger and other infections are as well. The cause is more complex.
     
    Cunningham's tests seem to be the thing that can finally identify immunologic aberrations in our kids- proof that immune modulating therapies like Steroids and IVIG are justified in order to treat the disorder.
     
    What we don't know is what other disorders or infections - like NMDA and MS, may have high Cam K activity. She has already said that a strep infection - in a healthy, normal individual raises the Cam K, but it does not got very high - but still raises it 10-30% (? can remember exactly) for the period of infection, and then goes down.
     
    While there are still questions about testing, Cunningham has thousands of samples. She says that more than 50% of them are not strep related. And although she has not published any papers on her years of research (she has said she has several papers int he works), I don't believe she would open a lab based upon what she knows if her years of research does not support this being a very good screening test for anti-neuronal activity. Test that support the concept that this is disease that involves the immune system, and suffers will most likely benefit from Immune therapies.
     
    It may also be of benefit in tracking the disease. I'm waiting my states approval so I can test my some again. He previously had very high numbers, that came down after IVIG. But now, things have changed so much I'm not sure we are still dealing with pans - or if he has learned behaviors or other problems that have resulted from pans for 4 years. I'll get another IVIG if I see his Cam K and antineuronals are high, but if not, we will pursue CBT/exposure therapy.
  24. Like
    norcalmom got a reaction from lovemylittleguy in Slower onset with re infection?   
    They change. From my research, and contrary to popular belief, the initial onset is not "overnight" Most parents miss the initial onset, and even the first episode. Not until the third or so do all the symptoms align and show up almost overnight. As the disease progresses, the "exacerbation" comes closer and closer to the time of infection, to the point where in some kids (those with vigilant parents, or, those with easy to recognize symptoms) you can tell by your child's behavior that they will, with in a day or two, contract an illness. Theory is that as the immune system matures it gets better at sending out the antibodies that protect it - faster. Its how you develop immunity to illnesses. In our kids case, its sends out the auto-antibodies along with the regular antibodies, which is what causes the odd behaviors tic, etc.
     
    In my son't case I could see when he was about to head into an exacerbation and a cold or other illness when he wet his bed. For some reason, it was usually his first symptom, followed by a host of other within a 24-48 hour period. Could be that the the others are harder to observe, and there's no arguing with a wet bed. He's also have tic very close to the illness as well.
     
    Most times his exacerbations followed a course of worsening for approx. 1-2 weeks, peak symptoms for about 2 weeks, and then about 2 more weeks where he got a little better. Its hard to see this pattern at first, because they get sick in waves and better in waves. After about a 6 week period he was back to baseline - or a new baseline, that may include a new or slightly different symptom that the last time. There were a couple exceptions to his - when he had loose teeth - much short - maybe only 5-10 days, that seemed to go awasy within a couple days of the tooth falling out, and he had a stomach bug - a 24 hour thing - and he only exacerbated for about 2-3 days with that.
     
    Its not always (or even usually) strep that will cause an exacerbation. Many, if not most, kids will exacerbate with other illnesses. Strep is theorized to be a primary trigger (along with a couple others) to the condition. But, not necessary for subsequent exacerbations.
     
    If this is only your child's second exacerbation, and you know the first time was caused by strep - you may want to consider being part of Swedo's study. They only need one or two more kids, so don't delay if you are considering it. They really only want kids that had strep,and it is either their first or second exacerbation. I wish we had caught it that early and gotten IVIG sooner rather than later! In addition they do a host of testing and screening. Maybe worth a phone call to find out if you might be interested and are eligible.
     
    http://clinicaltrials.gov/show/nct01281969
     
    Best of luck in nipping it in the bud.
  25. Like
    norcalmom got a reaction from T_Mom in new genetic study   
    I have over the years seen a very small number of taking both statins and beta blockers for psych problems. I found a number of articles on both when I googled them. (ggole beta blockers and bipolar if interested. I think I've seen posts on the board here on it too. Not that I'm suggesting that for anyone.
     
    Thanks LLM for the link to actual study, and for the info on the 3 and me. I've been on the fence about the 23 and me testing. I'll probably get it done, but I'm weighing it against the more complete genetic testing, not that I don't think its valuable - but I might want more than that small window.
     
    It blows my mind how everything is connected. I'd like to know if those calcium channel genes are related to autoimmune disease as well - its probably not new enough to make a press release on since I think it is accepted that autoimmune disease has a common genetic component.
     
    Possibilities of cause and effect seem endless. A saw George Chandy present, what appeared to be a miracle drug, last September in Irvine. His initial human studies for it were for treating MS, but he said that, it has potential to treat many different autoimmune diseases, they just picked MS as a start. Its a "partial" Potassium Channel Blocker - but I recall him talking about the calcium channel in his preso too - again - all related. They have completed the first round of human testing and are moving on to next phase. It appears that they moved quickly through testing and reported that they were happy with results. It isn't a "correct the cause" treatment, but would be much better than conventional treatments currently available for MS and RA (and others apparently). The pandas folks in the room asked if he would test some pandas sera- he has a method/test to identify if the functions of the channel ions are out of whack (which he had identified in several autoimmune diseases) and would thereby potentially benefit from his drug. He said he would, but who knows what the outcome of it was (or if it was ever done...). From what I recall, his tests showed cells function in MS and RA (and maybe Lupus - can't remember but there were 3 or so diseases) and the cell function was 100's of time whatever the normal measurement was supposed to be. If pandas cells behave similarly, it would go a long way in proving that we are dealing with an autoimmune disease.
     
    http://www.kinetabio.com/autoimmune.html
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