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mom love

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  1. Stephanie, which brand OLE are you using again? I started my dd on Seagate while on an antibiotic and her tic became much worse so I stopped it. Some day I would like to get to the point where we can try it again, perhaps the brand you are using.
  2. really really great Stephanie! All my best!
  3. PhillyPA, checking this forum over and over is a symptom of overwhelming love for your child syndrome. And a symptom of smart and determined parent syndrome. ok, our doctor ordered lots of bloodwork for us,and said the lyme western blot was a spinal fluid test. I said I was told it was a blood test. She ordered the lyme elisa and the lyme western blot igg and igm for blood work. I did not get a report back with bands. It just said Lyme ab negative. Is the lyme western blot a blood test?
  4. Not knowing much about the lyme part of the pitands puzzle, it seemes to me that the ILADS lyme specialists could become the pitands specialists in our country? What type of doctors are the ilads doctors? ID's, immunologists? from the last post, it seems they have the big picture of the often times complex nature of infection triggered autoimmunity.
  5. Ashlynsmom, who ordered the abx (shot and omnicef) for during and after the surgery? Why did they discontinue the zith? I've heard you can take both. Did they just want her on one at a time? thanks
  6. laure, I have read somewhere about hearing issues being a problem sometimes with zithromax. I thought it was long term usage but I'm not sure. That is a tough position to be in with 80% improvement. Did you say you are tapering now on the steroid? How much longer do you have on it? Did you read about the side effects in the paper work?
  7. Thanks for your thoughts Stephanie. I wish I could contribute to your issues. You're in it way over my understanding. You remind me of the hard core protocol I read about in Jenny McCarthy's book that she and others she learned from went through. Fixit, what is this electric pulse thing you are talking about? Thanks for all those gross details too... needed to read that right after dinner. JK
  8. I need help with something and I don't even know what. It could be yeast? die off? not really sure what any of it looks like. dd is on zithromax and improved dramatically but still has the tic. I decided to try OLE Seagate brand because of amount of research done on it and has many good parts of the olive leaf, not just olepurin sp? Anyway, only gave her one capsule a day started last Sunday and initially I thought her tic was much better, even the next day. Then it started to get worse and her emotions started ramping up and angry outbursts, crying etc. She was also acting a little silly and goofy, nothing dramatic, joyful actually, just different than the normal level of silly and happy. So after 4 days of it I stopped it. Do you think it was helping or hurting? Now we are left with the tic much worse today. I thought from Stephanie's post that OLE causes yeast to ramp up but everything I read about OLE says it fights yeast. Could it have been things get worse before they get better? Or could it have compromised the antibiotic? (gave it of course many hours apart). Logically I didn't think it would counteract the abx because it is supposed to help shed tenacious viruses and bacteria and that should help the abx do their job.
  9. Hi Stephanie, I will tell you that it is absolutely mind boggling to me that a school system would organize this kind of mass vaccination within the walls of a school. This is a nasal spray that can obviously be spread and shed immediately after. The children wipe their noses immediately after the spray and walk along touching every surface in the school. School is no place for vaccinations. That said, last year they did this at my daughter's school on a Wednesday. I kept her home from wed til the following Monday. There were other families who did the same because they too realized the danger of it. I think my daughter did fine and didn't get the flu. I will say that I saw a definite increase in illness soon after the mass vaccination. Our very conventional dentist said she saw the same thing in her pediatric practice and she never gives the flu vaccine to her children because she always sees more illness after them. I have a friend whose son received the flu mist at school, came down with the flu and soon after developed juvenile RA. The doctors told her it was probably h1n1 that triggered it. My mind immediately went to the vaccine.
  10. kimw, I am so sorry for what you have been going through. You and your family are in my prayers. First of all, is that a prophylactic dose he is on now? There is a good chance he needs full dose for a long time. Read Saving Sammy if you haven't yet. I agree with posts about amox. Although many on here see good results on it, it does have a high failure rate compared to others like augmentin and zithro and omnicef. If titers are still high, full dose should not be controversial. In my very humble opinion, I would stick with the immunologist since he believes in pandas. Give whatever doctor you work with a copy of Saving Sammy to keep. Figure out how soon you can do the T&A. Be careful of all psychiatric meds. Stick with motrin and abx at first if you can until you consult with a pandas doc. Contact a pandas specialist. Did they not do myco p igm? Where do you live?
  11. I know of "sensitivities testing" where they can test any sample of bacteria to see which antibiotic it is "sensitive" to meaning will fight it.
  12. Colleen, what did the ENT say? I am curious about your situation because ours is the same. We have a scheduled T&A and are on zithro too. I know two antibiotics can be given at the same time when needed as well. Our ENT said he does not do antibiotics before, during or after. I believe I will have to have an expert send him a letter. Let us know what happens.
  13. Michelle - Call Dr. B's office to find out about the phone consults. Imkimi - My dd 55 lbs is on 7.5 ml of zithromax (strep dose for a normal 5 day course) every day for 30 days. It is the liquid from the 200mg bottle. It comes out to be a 300mg dose I think. You will have to either keep going back to the pharmacy to have them fill the bottles with water for you, or you can take the bottles home with the powder medicine in them and fill them with distilled water yourself and shake it really well. I chose to take the bottles home so I don't have to keep going back. It brought my dd back to 90 % by day 5 and we continue to waffle between 80 and 90% on it.
  14. One time when my dd had strep with symptoms (pre treating PANDAS woth prophy) her doctor put her on amoxicillan and for that 10 days my dd was confessing lots of things. She confessed that she had watched the neighbor girl pee in her back yard, that she had but boogers on the couch, very innocent things that nonetheless had been stored guiltily in her brain somewhere. The amox ended up failing, with fever returning at end of 10 days and she was put on omnicef and all that confessing went away. We figured out later that PANDAS was showing its ugly head with that confessing. I learned later, when we finally put all the PANDAS pieces together that confessing is a well known form of OCD. If it doesn't get better for your son, perhaps you could consider a different antibiotic and/or longer course? And then possibly prophylactic if he is not on it already?
  15. That's great Stephanie! Praying is lasts and keeps getting better! I thought I'd add a link to an OLE nose spray that I thought was interesting http://www.seagateproducts.com/olive-leaf-nasal-spray.html
  16. One thing to keep in mind with a CT scan is the dose of radiation they program it for. When you are in the scan room with your child, ask the person by the computer if they have checked to make sure it is calibrated for the pediatric (state weight of your child) scan.
  17. Stephanie, I found it without alchol at the vitamin shoppe in the vitamin shoppe brand. Is that not a good brand? I'd really like a liquid so I can sneak it in their juice. How's the verbal language today?
  18. my mother with lung issues had pseudomonas (tested from a speutum sample) and pulmonologist said drug of choice was cipro. was told it is often acquired in the hospital when you have a procedure where you need to have a breathing tube.
  19. Great news Stephanie. I pray it keeps getting better. How do you give your kids that OLE capsule? Do they swallow or do you put it in something. Have you ever used the liquid?
  20. Thanks everyone for your thoughts. I will cut back on the florastor and think I will get a better probiotic like the custom probiotics many here use.
  21. Dd is on zithromax and is now constipated. We give florastor and culturelle for kids and lots of fiber and water. Did someone post that constipation on abx could be yeast? Any ideas on what is causing the constipation and what we can do to help? Thanks. dd does not swallow pills yet.
  22. Did I read somewhere that constipation while on antibiotics could be yeast? I can't find that post again. What can help with constipation presumably from the antibiotic (besides the normal: increase fluids, high fiber which we are doing)
  23. I've seen posts here and there about how allergies can trigger or exacerbate tics. I have seen some using quercitin and other things. I'm wondering if allergies aren't contributing/triggering to my dd's tic and would like to try something allergy related to try to help her. Any contributions would be appreciated. dd is 55 pounds and cannot swallow pills yet. Dosing amounts would be helpful as well. Her nose is itchy (not sure how much is allergy and how much is tic) so anything for nose could help too. Thanks
  24. Really interesting stuff. I hope more people reply about OLE. Stephanie, do your children swallow the 500 mg pill or do you use the liquid tincture, and if the liquid, where do you get it. Good luck, good luck. I'm sending an energetic life float for you after jumping ship. And, most importantly, saying prayers. Nancy, do you and your husband take 500 3 times a day? Would you say you caught more illness before starting it? Do you notice any other changes?
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