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Posts posted by Mayzoo

  1. Ds, 15, has been dealing off an on with PANDAs for a long time. He was also previously diagnosed with Lyme/Bartonella and took some heavy duty antibiotics. Whether a herx, a symptom of Lyme, or a reaction to the abx, he developed tinnitus which lasted about a year. It has since resolved, but he talks EXTREMELY loudly. He is not aware how loud he is and gets very upset when we tell him to talk softly.


    Has anyone else had a similar experience? Is there anything that can be done?


    He has never had a hearing test other than the basic tests in school.


    We have the opposite problem. Our kiddo whispers since onset in 09-2011, that is when she chooses to talk. She goes through 3-4 month jags of not speaking at ALL. She is learning sign language and she writes her questions/comments down instead.

  2. To any of you who have used this--Did you tell your child?


    Our DD has complied with medications over the years, but I think she would "freak out" if she knew we were giving her this "drug". (Haven't yet, but thinking ahead.)


    Any other input on type or brand or impact for your child?

    The version we give to our child is not based on anything classified as an illicit "drug". It is CBD oil derived from HEMP, not marijuana. Hemp is not classified as a "drug" and is so low in THC it has no psychoactive properties that I am aware of.


    My daughter is very delayed and has no tangible idea what "drugs" are, so converying this to her would be meaningless.

  3. I will try to find the article in a bit, but I just read yesterday that CBD oil reduces appitite whereas THC increases appitite.




    "Cannabidiol is even known to counteract some of the effects of THC like the “munchies.” Just as THC increases our appetite, CBD suppresses it, which could be ideal for patients watching their figure. CBD just might be a key ingredient in a future weight loss drug, who knows?


    There is one exception to the theory that CBD suppresses appetite, but it is a blessing as well. Many people who have difficulty eating due to their stress or anxiety can use CBD to get rid of that sick feeling in their chest or stomach, allowing them to eat again once their anxiety subsides."



  4. We used them for the NeuroSelect Profile:


    Serotonin, GABA, Taurine, Glycine, Glutamate, Histamine, PEA, Dopamine, Norepinephrine, Epinephrine, Creatine (probably total?).


    It provided some insight into kiddos fight or flight anxiety. Her norepi, GABA, Dopamine and glutamate all were very high. Her taurine and PEA were low. We were able to make some adjustments that I believe have benefited her. The results came with a two page recommendation that we are not really using since it recommended combo brand name supplements, and her doc wanted a more specific for kiddo approach.


    If you have any specific questions, let me know and I will see if I can answer them.

  5. On 4-7-14 kiddos lab results were:


    Coxsackie A7 1:160 Neg <1:10

    Coxsackie A16 1:160 Neg <1:10

    Coxsackie A24 1:160 Neg <1:10


    HHV-6 10.54 positive > 0.99


    EBV >600 positive > 21.9



    On 9-26-14 Kiddos labs were:



    Coxsackie A7 Negative Neg <1:10

    Coxsackie A16 Negative Neg <1:10

    Coxsackie A24 Negative Neg <1:10


    HHV-6 4.71 positive > 0.99


    EBV >600 positive > 21.9



    I suspect her EBV is going down as well, but it was likely soooooo high the numbers are simply not below 600 yet.




    We have been following Steven Burner's EBV protocol alternating Isatis 30 days and then Lomatium for 30 dyas, otherwise pretty much at full doses as he recommends. She appears to have more energy and fewer episodes.


    During this time we titrated completely off zithromax and augmentin but added low doses of minocycline a few days before the blood draw.


    I wanted to pass on the great news :).

  6. Sorry, I can't edit the title The corn is not spliced with the hep b.


    Okay, it appears they are trying to create an edible corn "laced" with the Hep B vaccine and are calling it "pharmaceutical" corn. They are trying to create foods with various meds in them, but they are not being very careful about it. Wildlife is already eating the stock.



  7. If you look in my siggie you will see a list of what infections my kiddo is positive for and these are not uncommon in PANDAS/PANS kids. My kiddo has never had elevated Anti-Dnase or ASO titers either since she is immune comprimised. Those numbers are helpful for some, but not the complete picture for othes.


    Hope this helps some:



    • Dr. Steven Karashik, PsyD, MS
      Ridgefield, CT
    • Dr. Nancy O’Hara
      Pediatrician/Integrative medicine
      Wilton, CT
    • Dr. Gail Szakacs
      Internal Medicine/Integrative Medicine
      Wilton, CT
    • Dr. Roseann Capanna-Hodge, Ed.D., LPC, BCN, LLC
      Educational Psychologist and Neurofeedback Practitioner
      Ridgefield, CT
    • Dr. Tom Moorcroft, DO
      Osteopathic and Integrative Medicine
      Berlin, CT
    • Dr. James Leckman (Leading PANDAS Physician)
      Neison Harris Professor in the Yale Child Study Center Professor of Pediatrics & Psychiatry
      New Haven, CT


  8. Thanks to everyone for their responses! I hope this flare passes quickly. I picked up the steroid burst from the pharmacy today - 45 mg. for 6 days. He is only 60 lbs. Doesn't that seem like a really large dose? I still have not decided if I will give it to him - I don't want to make him worse, but I would love to make him better - I need a crystal ball! :)



    They are planning on tapering down right? Just stopping at 45mg a day is not typical.

  9. Sorry this is late in coming. My kiddo was off this for about 6 weeks partly because she was doing so well, and partly because I started forgetting it. I am putting her back on it since we have some issues coming back up as related to a variety of changes right now.


    I have only seen the positive benefits with my daughter. It does really well with her anxiety and can curb her "upsets" as well. It has never increased her tics, but rather decreases them. However, every kiddo is different as you well know :).


    We started seeing benefits within a few days I believe. My computer with her medical log is down right now, so I cannot reference it. Kiddo is still on the cibdex brand.

  10. Sharknado sounds most unpleasant from the wikipedia description. If a kiddo with OCD latches onto the visuals in that type of movie, then remunerates on those, I can see why they would want to sleep with their parents for long periods of time. Kiddo had horrid nightmares and the worst she had seen at that time was Scooby Doo. You may need to watch the movie by yourself and see if you can talk through the worst of her worries with her.


    My kiddos ASO or Anti-Dnase have never been elevated, even 5-6 weeks into a 60 day strep infection. BUT, her immuno function was determined to be compromised, so she would not respond in the same manner as a non-compromised kiddo. So, these tests are not the end of the subject of PANDAS if they are low.


    My kiddo has every symptom you mention, plus a few more in heightened flares. My siggie lists everything I am aware of that she has.


    Have you tried an antibiotic trial with her yet?

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