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Everything posted by Mayzoo

  1. We have used Emla cream (local anethestic that needs to be put on the site 30 min in advance) and Klonopin, both with good success. The drama related to blood draws is greatly reduced now to where we just use the klonopin because she has realized it is just not THAT painful, it is just scary. We also offer an uncommon treat after the appt.
  2. We have a rough time breaking the habits that are created during the bad flares. Kiddo adjusts to and begins to expect that I will get everything she "needs"/wants immediately without pause. When she begins to feel better, I start weaning her off the mommy is spelled S E R V A N T idea. Then we butt heads a bit, but she relents quicker each time and eventually starts doing things for herself again. Mine has no sibling, so I do not have that issue *whew*. Oh, maybe this will be worth a chuckle. When kiddo was younger, and I had told her to do something twice, the third time I simply said, "Mary, OBEY" Actual conversation: kiddo: mommy can I have some water? Mommy: yes, go get you some. Kiddo: Mommy will you get it for me? Mommy: No, go get it yourself sweetie. Kiddo: Mommy, help please. Mommy: No, honey, you need to do this yourself. Kiddo: Mommy obey!
  3. Sorry I missed this earlier. What we used was a tincture of 500mg per bottle, 60 ml in each bottle, so 8.33 mg per ml. I was using 10-12 drops twice a day.
  4. When my kiddo was at her worst, I was unable to be anywhere without her and I regularly bumped into her because she was always within two feet of where I was standing. We used two approaches, medicinal and CBT. Medicinal we used a benadryl and melissa lemon balm and had good results. When we added CBD oil, that helped the rest way to tolerable, but not yet back to normal. CBT wise, patience and calm reassurance are the keys. I would make up reason to send her to another room to get something. I would stand where she could see me, and see if a repeated stern voice of you can do it, I know you can was enough. If I determined she could not do it, I would walk half way towards her, and insist in a firm, reassuring voice that she must go get what I asked her to. It usually took a while, but she managed to do it, and then I lavished praise. Now that we have her viruses more under control, she runs out the front door after daddy and does not even check with me, so I may not even know she left unless I hear the door (360 fence around the property).
  5. We used it for 6-8 months and it had great effects the entire time. We stopped as a trial to see how she would do now that her viral numbers are dropping and behaviour has improved drastically. She is doing really well now even without it. We used it for anxiety, ocd, bouts of "upsets" (which I gave an extra dose for), and it is antiviral and anti-inflammatory. We started with Bluebird and switched to Cibdex without noticing a difference. I gave kiddo the Cibdex CBD oil 500mg in 60ml and gave 2 squirts under the tongue and had her hold it for a minute. We mixed the natural flavor and the peppermint flavor 1:1 to get a more neutral flavor that was not offensive. Kiddo tolerated, but did not like, the natural flavor. The peppermint full strength was too strong (like trying to hold a tic tac under your tongue for 60 seconds). The mix was the winner. I caught it "on sale" (HAHA) on amazon for 99.00 a bottle both times I bought it. Otherwise it was 160.00 a bottle, but I have not looked lately.
  6. We use 500mg in a 60ml bottle by Cibdex. Good luck if you try it.
  7. My kiddos Coxsackie A titers went from 1:160 (IGM) to negative in five months on our herbal antiviral program. We are using Steven Buhner's EBV protocol. Her HHV-6 also dropped from 10.71 to 4.54 in the same five months. Her energy level and overall behaviours have improved drastically.
  8. We have not tried berberine, but we are using three other herbal abx (sida acuta, cryptolepis, and alchornea) and 6-8 herbal antivirals with great success. We are using Buhner's protocol for EBV since our kiddo is mainly a viral kiddo. So far, it has worked awesome for moods and behaviours AND her titers are dropping as well as proof to doc that is working .
  9. I would suggest trying Japanese knotweed and/or ibuprofen and one or more of the following (depending on severity and response): benadryl, melissa lemon balm, or valerian. The first is for inflammation causing the issues, and the second is to relieve some of the stress and reduce the behaviours. Hopefully that will be enough.
  10. Is that oral or transdermal? Initially, it was oral (150mg) then I dropped it to 75mg oral, then converted to 75mg transdermal due to the interaction with minocycline.
  11. My kiddo's ticcing is worse with very low doses of mag chloride 75mg/day. She was fine on mag glycinate 300mg/day, but probably due to increased absorption of mag chloride, she is ticcing due to mag pulling toxins out of the tissues (I guess). We started at 150mg/day and the ticcing was intolerable; at 75mg it is manageable.
  12. Her doc (immunologist/PANDAS specialist) just emailed back and said topical does not carry the same interaction warning as oral. That may make life a little easier .
  13. Is your son on any treatment (pharmaceutical or herbal antibiotics)? Yes, I believe, exposure to a person who is infected can both raise his titers and cause a flare. What to do about your mother is more complicated. See if there is a treatment that will not affect her heart condition (not all abx do affect heart conditions), then see if she will take it, not because she feels ill, but because her illness is affecting her grandson's quality of life. She may need to go to your son's doctor to hear that from him in order to convince her to treat herself for your son's sake.
  14. Yeah, we talked about this several months ago. Kiddos cleared up with chlorhexidine rinse and xyliwhite toothpaste. Now, she just uses the xyliwhite toothpaste. Here is the thread I am familiar with, but after searching, it seems there are a few threads about this, not just one. http://latitudes.org/forums/index.php?showtopic=22718&hl=%2Bstrep+%2Bteeth#entry174387
  15. I am hoping the interaction does not include the transdermal . Dosing is already challenging enough around here. But, I may not get what I hope for, time will tell I hope. Until the doc responds or I find something, I will keep them separated.
  16. Yes, oral magnesium and oral cyclines is a big no no. Magnesium needs to be 2 hours before or 4 hours after minocycline. I cannot find any literature that addresses an interaction warning on topical (or injectable) magnesium and oral cyclines. I have even tried google scholar and nothing . For now, I am going to assume the oral restrictions apply just to be safe. I am hoping someone knows for sure, and I am emailing her doc to see what he says. Thanks.
  17. Not with diflucan, but definitely with biaxin. I feel like I have tin foil in my mouth for most the day/night while I am on it *bleah*. One side effect listed is: Other Senses: Taste perversion, although that is not listed on my usual site, www.drugs.com http://www.rxlist.com/diflucan-drug/side-effects-interactions.htm
  18. Does anyone know if topical magnesium interacts with oral minocycline? My gut and logic say no, google does not seem to say anything (I was using my phone, but will try later on a "real computer"), but I wanted to see if anyone had a definitive answer. I know the interaction is binding together, and they will not "really" be in the GI together to bind, but I ask because I know IM Toradol injectable (ketorolac) used to be sited for GI bleeding even though it was never "really" in the GI. Topical and IM clearly both can get into the GI, so I have to ask. Thanks.
  19. ABX for the myco P (not sure which, myco is not one of our issue), and we are having great success with Stephen Buhner's EBV herbs for HHV-6, EBV, and coxsackie. Buhner also has an herbal protocol for myco P, but I do not know how well it works. Others may be able to chime in. Good luck.
  20. My kiddo does not have bart, so I am not sure about that. Has your son been tested for viruses? My kiddo was a poster child for chronic fatigue syndrome until I started treating her viruses. Now she has a ton more energy and giggles.
  21. Why did they want to dilate in the first place? My kiddo has to have it done annually to check for early signs of retinal detachment due to a risk high ocular pressure related to her Chiari. I am just curious why they would do this in reasonably healthy children? I do not think I have ever had mine dilated.
  22. Kiddo has been taking magnesium glycinate for a while with no issues. For various reasons, we switched to ionic magnesium (magnesium chloride). I gave her 1/2 what she had been taking of the glycinate, and she had a flare type reaction. Come to find out, magnesium is used for detoxing and pulls toxins out of the tissues (if I recall correctly). So maybe your kiddo was having a toxin overload like mine did? Mine settled back down after 18 hours of no magnesium. " Magnesium Chloride Benefits Posted by Dr Sircus on December 27, 2012 | Filed under Magnesium, Medicine For purposes of cellular detoxification and tissue purification, the most effective form of magnesium is magnesium chloride, which has a strong excretory effect on toxins and stagnant energies stuck in the tissues of the body, drawing them out through the pores of the skin." http://drsircus.com/medicine/magnesium/magnesium-chloride-benefits Hope your kiddo is doing better.
  23. It has never affected my kiddo, and she has to have hers done every year. Maybe he picked up a bug at the office? Kiddo is always susceptible after an outing, but she has a compromised immune system.
  24. Yeah, my daughter never has typical physical symptoms of illness. She had no physical symptoms when I first took her to the pedi for the blood work, to see if PANDAS was the cause for her behaviours, and to see if she may have high ASOs . When the doc did a rapid strep test, she had strep throat then, with no sore throat, fever, etc....... Makes me wonder how often she was ill prior to PANDAS and I had no idea .
  25. For us, a flare is a sign of illness or exposure to illness. Our kiddo does not have physical signs of illness, only behavioural. When behaviours pop up, I know an illness is to blame. Itchy eyes and congestion could be allergies. Did it resolve after a few days of no exposure to that family? If what you are dealing with is viral, abx will only help with the inflammation, not the infection. Time, rest and lost of liquids and/or herbs are your only course of action against most viruses. Not all kids respond to steroids. I am not sure why. Someone else may pop in that has a better grasp on why some respond and others do not. I have read if a flare is helped with steroids, that child is a good candidate for IVIG helping (if symptoms are severe enough to merit IVIG).
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