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Everything posted by Mayzoo

  1. Also, should you be faced with a relapse (here is hoping he does not) you may consider herbal antibiotics. Our daughter is doing very well on those after titrating down off traditional abx. A good read is Buhner's Herbal Antibiotics book.
  2. I give them at the same time with no visable side effects or problems.
  3. 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.
  4. 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.
  5. I noticed ACN Latitudes was not listed under parent resources. How can we get that fixed ?
  6. I will try to find the article in a bit, but I just read yesterday that CBD oil reduces appitite whereas THC increases appitite. ETA: "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." http://www.medicaljane.com/2012/12/20/cannabidiol-cbd-medicine-of-the-future/#
  7. 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.
  8. Oh yeah, I have seen cara615(sp?) is using bravo with what she feels is great results. She has some threads on here if you search "bravo". It is a type of super potent yogurt I believe.
  9. Sorry I did not read all three pages, so this may have been posted already: "Whistleblower Says CDC Knew in 2003 of Higher Autism.." http://www.autismweb.com/forum/viewtopic.php?f=4&t=32620 There are links to numerous articles on that thread as well.
  10. We were using bluebird 500mg at 15 drops twice a day. Then I bought Cibex 500mg and we used 2 squirts twice a day. They seemed comparable in effects to me, but I was not using it. Kiddo is verbally delayed, so hard to get clear answers on that level.
  11. Kiddo is on CBD oil and bio-enhanced curcumin for yeast. Some of her herbal AVs & abxs cross over to yeast I believe, but I would have to look that up again. I also give one diflucan once a week to be safe.
  12. 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 .
  13. 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. https://www.google.com/search?newwindow=1&site=&source=hp&q=GMO+corn+with+HEP+B+vaccine&oq=GMO+corn+with+HEP+B+vaccine&gs_l=hp.3...4054.10943.0.11112.
  14. I started kiddo on one cap in the morning and it made a fairly big difference in her anxiety. I had her lithium level tested after a few months and it was still very low so I bumped her to on in the am and one at noon. I started on it too, and it helps me as well.
  15. 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: CONNECTICUT Dr. Steven Karashik, PsyD, MS Psychologist 203-633-4666 Ridgefield, CTDr. Nancy O’Hara Pediatrician/Integrative medicine 203-834-2813 Wilton, CTDr. Gail Szakacs Internal Medicine/Integrative Medicine 203-834-2813 Wilton, CTDr. Roseann Capanna-Hodge, Ed.D., LPC, BCN, LLC Educational Psychologist and Neurofeedback Practitioner 203-438-4848 Ridgefield, CTDr. Tom Moorcroft, DO Osteopathic and Integrative Medicine 860-438-7096 Berlin, CTDr. James Leckman (Leading PANDAS Physician) Neison Harris Professor in the Yale Child Study Center Professor of Pediatrics & Psychiatry 203-785-5880 New Haven, CThttp://pandasnetwork.org/resources/providers/provider-list/#CONNECTICUT
  16. Is anyone using Minocycline made by Activist? They are an Indian company, so I wanted to know if anyone is using or has used it and what the scoop is. Thanks.
  17. They are planning on tapering down right? Just stopping at 45mg a day is not typical.
  18. Kiddo takes this for a tremor unrelated to pandas. So far, so good (6 months). We had somnolence to start with, but as we titrated up she adjusted and no issues now.
  19. In our case, a flare while on treatment doses usually means an infection of some kind (viral or bacterial) has risen it's naughty head. We treat that infection (or wait it out) and then we start coasting clearly again.
  20. See if any of these will work for your needs: http://www.amazon.com/s/ref=nb_sb_ss_c_0_22?url=search-alias%3Dhpc&field-keywords=pill%20organizer%204%20times%20a%20day&sprefix=pill+organizer+4+times%2Caps%2C317
  21. Anxiety, stress, fatigue, and illness ALL trigger tics in my daughter. When none of those are present, we do not have tics either.
  22. I have never heard of her, but here is a google hit with information: Ann F Corson LLC: Corson Ann F MDhttps://plus.google.com/115472808947994309578/about?gl=us&hl... Google+ page · Be the first to review 731 Street Rd # 1, Cochranville, PA 19330 (610) 869-0270
  23. 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.
  24. 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?
  25. My daughter was positive for strep for almost 60 days. She took 10 days amox then 10 days augmentin. Then 40 days Zithromax before her rapid test was negative.
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