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Posts posted by Mayzoo

  1. Some abx should not be taken within two hours of magnesium. Similarly, nothing should be taken within two hours of charcoal.


    The abx my kiddo is on (biaxin and augmentin) are fine with magnesium. Doxy, minocycline and several others are bound to magnesium and thus not absorbed properly. Check on drugs.com or post what abx your kiddo is on and someone will let you know if they are okay with magnesium or not.

  2. I wish I had an answer. Mine just turned 13 as well, and has autism, but it is affected by PANDAS and autism very differently. I wish I had better advice or any real advice.


    Have you three been to family counseling? She sounds very angry, but I have no idea from what or if I am even right.


    If it is medical, I suppose the overwhelming interest in sex and porn could be an expression of OCD. The anger could be a psycho/medcial symptom of PANDAS.

  3. I can only answer for my kiddo. She refuses showers or baths right now. For her, it is a sensory issue. She says the shower is way to loud, but also will not take a bath or wear ear plugs. That is likely a sensory thing about water and it surrounding her.


    Rather than unnecessarily upsetting kiddo, I use a soapy wash cloth to keep her clean right now, and medicate her for anxiety prior to washing her hair in the kitchen sink. It works for us anyway.

  4. That is great news. We just had bloodwork done (before insurance, $2,200+ worth! gulp).


    I will call tomorrow.


    Thanks for the heads up!


    I believe you can get the results directly from the lab in all 50 states (https://www.federalregister.gov/articles/2014/02/06/2014-02280/clia-program-and-hipaa-privacy-rule-patients-access-to-test-reports). It is possible not all labs allow online access, but you should be able to go to the lab and get them yourselves. You do not have to wait on the doc to get back to you. You may not understand all the results and need the docs help with some of them, but I find it less frustrating to just get them from the lab. We use labcorp here, and I can log on to their site and get the results the same day they are done (I receive an email from labcorp saying they are done).

  5. There is also mercury in old thermometers (if they break and have skin contact or if the mercury evaporates) and there is mercury in the "new" light bulbs (http://en.wikipedia.org/wiki/Fluorescent_lamp). Liquid mercury is absorbed though the skin rapidly and upon evaporating, it can be inhaled. ( https://health.state.tn.us/Downloads/mercury.pdf)



    Here is an article excerpt on mercury as well:


    Another source of mercury exposure comes from coal-burning power plants. This mercury pollution is distributed in the air, and is deposited in the ocean, where of course it bioaccumulates in fish. So indirectly, it's still a major source of exposure.


    "The one paper that has shed some light on coal-burning was the Palmer paper coming out of Texas, where they found higher rates of autism with proximity to coal-burning power plants. But that's the only [study] that's done that," Dr. Shade says. "From all the data that I have looked at, from all the people that we have measured... fish and amalgam dominated everything. People who don't have any fish consumption and don't have any amalgam exposure, we very rarely see any significant amounts of mercury in."


    and another article: http://www.epa.gov/mercury/exposure.htm


    Ironic, they remove mercury from vaccines, and include it in the "new" light bulbs :(

  6. The general, simplistically explanation, as best as I can state it, is this:


    1. Infection causes antibody production.


    2. Antibodies that are supposed to attack the infection instead attack the basal ganglia in the brain.


    3. That attack causes the inflammation of the basal ganglia.


    4. When the basal ganglia becomes inflamed, we see a myriad of symptoms that we call a flare.



    Mitigate the inflammation in the basal ganglia and you mitigate the flare symptoms. In most cases, as far as I am aware. there is not really an infection in the brain.


    The ibuprofen working, even if the tests up to now are negative, simply means you have not run the right test yet IMO (have not found the infection).

  7. My kiddo does not rage, but has high stress/anxiety resulting in a vocal tic, crying, and tremors. For stress/anxiety (which some believe is an underlying cause of the rage) we use Melissa Lemon Balm, CBD oil, and ionic magnesium regularly. Intermittently we use one of these: Ex-Stress, Sleep Relax, benadryl, or Klonopin. Kiddo is in a minor flare right now, so we just started her back on zoloft 12.5mg daily to hopefully take the edge off the anxiety.


    I also just bought some essential oils to try by Young Living called Stress Away in hopes it will help with her tic and remaining anxiety. I would love to not have to react to a bout of what kiddo calls "the upsets". I would much rather get them under regular control with medication and herbs instead.

  8. I remember the disappointment of realizing this is not over, and then the realization that it may well never be "over". Now my goal is management and slow healing to obtain a long term remission and reduced symptoms related to new infections. This new attitude makes management and coping with a new flare much easier for me and kiddo.


    Yes, the tics could be related to the discontinuation of the inhaler. The flare may pass with the virus, or some time after recovery from the virus. I have noticed it takes a little longer for the flare to pass after each infection kiddo has.

  9. I was unaware of this, but if you itemize, this may help you:


    Special Diets

    Many people do not realize that the additional costs of following a specifically prepared medical diet such as the gluten-free, casein-free diet can also be considered medical expenses. On March 24, 2011, the office of the Chief Counsel of the IRS issued a letter clarifying this issue.

    “Specifically, the excess cost of specially prepared foods designed to treat a medical condition over the cost of ordinary foods which would have been consumed but for the condition is an expense for medical care…. Therefore, if a taxpayer can establish the medical purpose of the diet, such as through a physician’s diagnosis, then to the extent the cost of the food for the special diet exceeds the cost of the food that satisfies a taxpayer’s normal nutritional needs if the special diet were not required, the excess cost is an expense for medical care under section 213(d).”

    Here is an example of a GFCF Diet Deductible Worksheet. You can also claim mileage expense for the trip to the health food store and postal costs on gluten-free products ordered by mail. Specific products used only for a gluten-free diet such as xanthan gum are 100% deductible. You should save all cash register tapes, credit card receipts, and canceled checks to substantiate your gluten-free and or casein-free purchases. You will need to prepare a list of typical foods at typical grocery store prices to arrive at the differences in costs. You need not submit your documentation or computations with your return, but do retain them with your other tax records.



  10. We have never tried the cinnamon. Since PANDAS onset, kiddo will not eat anything "spicy" and I am afraid cinnamon fits that description.


    The vanilla in my opinion is the most tolerable of the three flavors. Yes, 500mg (total) per 2 oz bottle. With Cibdex, it is in a squirt bottle. We use 2 squirts under her tongue twice a day right now, with a dose in between if she has "the upsets." With bluebird, we used 15 drops twice a day.

  11. My kiddos titers are through the roof for everything but one. She had one varicella shot at about 1 yr. Her titer for that is 1113 with a positive of over 165. She is actually being treated to lower her out of control titers. However, my kiddo is IGG deficient.

  12. My kiddo has been on this for quite a while (18+ months). It has always been a "00" capsule with a white powder in it. The last bottle I bought was a "0" capsule with a more tan/brown powder in it. I thought maybe it was just a different batch, but now I wonder. I just received my newest bottle today and it back to "00" white powder.


    My kiddo has been in an unexplained flare for the last 5 weeks. She has likely taken 75 days worth of this powder. Now I am wondering if there is something else in this bottle I have besides Sacc B. The lot of the tan powder is # 5 ( or G?) 1525H14.


    Has anyone else received a bottle with the tan/brown powder and smaller capsules, and if so, how has your kiddo (s) been doing since being on it?

  13. My kiddo and a few others I have heard of are affected through their speech as well as other symptoms. My daughter has had selective mutism or simply whispered since onset (3 + years).


    Another patient I met at kiddo's doctor's office (female, 17)abruptly began uncontrollably speaking in a high pitched, unintelligible, baby like voice. She had to write to communicate. Kiddo's doc says he has a handful of patients whose speech is affected.

  14. WOW! Thanks everyone. Another question... my son has corn, rice and wheat issues per his food testing. Can you do a tincture without any of those items in the alcohol? I'm guessing not... but curious if you had any knowledge in this area. If not, I may need to stick to boiling water. He's 7, so that will be a hard pill to swallow for him. Thanks!



    Tinctures can be made in apple cider vinegar or glycerin as well. I am not well versed in the glycerin method, but the vinegar is the same as the alcohol method.


    Once I have made our tinctures, I give them to kiddo in "000" capsules. Not sure if your kiddo can swallow capsules yet.

  15. PANDAS and PANS diagnoses are based upon defined clinical characteristics. The Cunningham Panel™ tests for autoantibodies directed against specific neurologic antigens and receptors, and measures the state of the stimulated immune system against HUMAN neuronal cell lines at a single point in time. The results from the Cunningham Panel™ are provided to the physician as an aid in their diagnosis of PANDAS or PANS. There are treatments that are known to affect the test values of this panel, which include: recent treatment by intravenous immunoglobulin (IVIG), plasmapheresis or plasma exchange, and steroid treatment.



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