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Everything posted by Mayzoo

  1. We see one of the "leading PANDAS" docs (sorry, not in your area) and he files insurance; however, he does not take our particular insurance, BUT he does take many others.
  2. I have other sources, so I will not watch her decline. I fear this is the wave of the future for many. Insurance companies have been nixing therapies that were not deemed medically necessary now they are venturing into pharmaceutical and nixing anything that is not "an FDA approved indication" for that med.
  3. Scary part is we are not on an HMO. I steered clear of HMO for many reasons.
  4. I was already planning a switch to herbal abx, but was hoping for a bit more gradual switch. I will work this out one way or the other, since I will not watch kiddo suffer. Thanks
  5. Our insurance (new group in April, same company) has decided in their infinate ignorance that my child may not have more than 60 tabs of an abx in a 5 month period. The doc tried an override for encephalitis, but insurance still denies as med not approved for that dx. She has been on this paticular abx for 2.5 years. I am sure they will deny her other abx when I call it in soon. Anyone else having this issue?
  6. My kiddo had a high pitched barking going on for about 9 months several years prior to a PANDAS dx. Retrospectively it was a vocal tic. I took her to her normal neuro who of course did nothing and recommended nothing at that time. I was not familiar with the concept of vocal tics and I thought she stop if she wanted to, but again, retrospectively, I do not believe she could.
  7. So far, kiddo is negative for all tick borne inf. However, she is positive for numerous viruses. We are trying an herbal approach right now based on Steven Buhner's book. I am not ready to give Valcyte, with all its side effects, to a 12 yr old girl without trying other approaches first.
  8. My daughter's ASO and anti-Dnase have always been very low, even in the midst and after 60 straight days of positive rapid strep tests. Her immune system is wacky, so it does not respond properly to infection. Also, there is the possibility of it being PANS, which is much like PANDAS, but it is brought on by something other than strep. Read some of the signatures around here. Many have lists of viruses or bacterial infection our children are challenged with.
  9. A bit OT, but my daughter's Rubella and Varicella titers were 10 times higher than they should be, most likely because her immune system is wacky. She had one MMR shot at 15mo, and one Varicella at 12 mo. I cannot imagine how bad her titers would have been had I done the second MMR shot. Actually, all her titers are high, but most are only 2-3 times "normal". Her immuno treated for a year with amantadine to get her Rubella down to almost normal. I am using an herbal antiviral protocol to get the Varicella down. At least I am hoping it will get the Varicella, EBV, HHV-6 and Coxsackie titers down.
  10. Occasionally, kiddo bangs/scrapes her spoon on whatever flatware she has as if trying to get the last drop. I have found taking her metal spoon, but giving her a plastic spoon for these occasions helps to keep us both sane. I can only tackle so many battles at one time, and this one is low on my list of priorities.
  11. Looks like Bartonella is linked to OCD: https://www.google.com/#q=bartonella+%2B+ocd I wish you the best of luck as you try to fit the puzzle pieces together.
  12. Congrats, mine stopped eating for a few weeks as well. I get thrilled now when I have to tell kiddo to turn the TV down LOL. How many parents grin ear to ear to hear a TV on to loud HAHAHA.
  13. Are his titers rising or falling? If his titers are falling, you can try dropping the abx and retest his titers again later. If they are rising, then I would suspect the infection is somewhere besides his throat. Strep can be in many different parts of the body, and it is hard to culture for them all. Sinuses can be cultured. I have also heard of strep in joints, kidneys (Urine analysis), teeth (rapid strep test on teeth only), and other places as well.
  14. So far, so good and only minimal herxing that is controlled with the knotweed, CBD oil combos. She has been at her weight max dose on everything but lomatium and rhodiola for about 6 days. I just added the lomatium in a lose dose on today. Will see how that goes for a few days before deciding to go up, down or stay here for a bit. Yeah, when I see progress, I tend to go too fast, so I am trying VERY VERY hard to control myself and go steady, not fast. Because we do not seem to have lyme et al, I was not planning on using houttuynia. That is good information to have on it though should I ever decide to try it, so thanks. We are going to try cyrptolepis and alchornea instead. Kiddo complains of leg pain, and actually all over body pain that I would love to see go away too. Here is hoping.
  15. Sorry to hear about the set back. This journey is most definitely full of them.
  16. IDK.....full dose clindamycin, 1/2 dose zith, several doses of probiotics throughout the day?
  17. As with all of us, my goal is to wean kiddo off ABX. I am trying an all herbal antiviral protocol since 5-5 and it seems to be going well so far. We are at full dose on everything but two herbs. When I get those to full dose, and kiddo is stable (no herxing) again for a week or two, I am going to introduce two herbal ABX, one at a time. When I get one to full dose, I hope to start weaning her off zithromax by 1/4 tab per week while introducing the other herbal ABX. When zithromax is weaned and both herbal ABXs are at full dose, I plan to attempt to wean off augmentin very slowly. Best laid plans of mice and men, but I have to have a plan, even if it has to be modified a million times . Now to the questions for those who have to wean off or down of abx: 1. When any of you successfully weaned off/down abx, how long did you see sx before they resolved without giving in to bumping abx up again? 2. If you were unsuccessful in weaning off/down, how long did you ride out the sx? 3. Was anyone successful without seeing any sx at all? Thanks for the all the support and answers to everyone.
  18. I just stumbled upon this: Sativex (Sativex® has now been launched in 11 countries (including the UK, Spain, Italy and Germany) and approved in a further 13 (map below) by prescription only I believe: http://www.gwpharm.com/Sativex.aspx 2. Qualitative and quantitative composition Each 100 microlitre spray contains: 2.7 mg delta-9-tetrahydrocannabinol (THC) and 2.5 mg cannabidiol (CBD). Each ml contains: 38-44 mg and 35-42 mg of two extracts (as soft extracts) from Cannabis sativa L., folium cum flore (Cannabis leaf and flower) corresponding to 27 mg delta-9-tetrahydrocannabinol and 25 mg cannabidiol. 4.1 Therapeutic indications Sativex is indicated as treatment for symptom improvement in adult patients with moderate to severe spasticity due to multiple sclerosis (MS) who have not responded adequately to other anti-spasticity medication and who demonstrate clinically significant improvement in spasticity related symptoms during an initial trial of therapy. http://www.medicines.org.uk/emc/medicine/23262/SPC/Sativex+Oromucosal+Spray/ Just in case anyone else is interested.
  19. I want to try NAC for kiddo but she is +/- for two CBS and SUOX unknown. I tried NAC and it made me verbally aggressive/agitated (my DNA status is unknown).
  20. No issues here; however, I intentionally dose it in the morning and at 3pm. I do not give close to bedtime, so we are less likely to have sleep disturbances.
  21. I would say if you suspect he may have Lyme, then pursue the testing when you are able and ready to treat. In our case, I must prioritize what I treat. Kiddo is positive for EBV, HHV-6, almost all the Coxsackies, high varicella titers and low immune functioning. She may have lyme or a co-infection, but I am not sure. I cannot put her through treatment for everything all at one time. Her liver and her system cannot handle that. So I am going after the above viruses first, and trying to modulate the immune system along the way and will continue immune system therapy for a long time. When we get the viruses under control, then I will consider extensive testing for lyme et al and treating if needed. I do not believe she has many symptoms of lyme et al, but she is riddled with symptoms related to these viruses.
  22. The acid in your stomach is also what kills the majority of strep bacteria before it can take hold in your system, throat excluded of course, (posted the article a while ago and now cannot find it). If you stop the acid, you raise the risk of strep infections. I will go look for the article again, and if I find it, I will do an ETA. Okay, super tired right now and gotta get kiddo ready for bed. It is one of these articles: https://www.google.com/#q=stomach+acid+kills+strep+a
  23. Ah, the ol' chocolate syrup. How could I forget to mention that one LOL. I bet you will have to keep an arsenal of options in your cupboard if your kiddo is anything like mine. Meds are not usually a problem here, but I home school her, and teaching methods almost MUST change daily, to every other day or they simply stop working . My kiddo is complicated when it comes to schooling since she has some developmental delays and autism added into the mix.
  24. I just finished reading, dissecting and note taking of Buhner's Antiviral book. Hoorrraaayyy....... Upon looking in the mirror, I think my head tipping a little to right from all the new knowledge rattling around in there. And, I do believe there is an eye twitch that was not there before all the heavy reading . Boy, I am soooooo very grateful I already had a medical background jump on this!!! The silver lining idiom is at least sometimes true. I would not have had the time to read this book had I not injured my shoulder and now need it immobilized 85% of the day. This allows me to sit, read, absorb and take notes while kiddo is busy playing something else. Kiddo is now almost all the way to a full EBV protocol from this book. We are waiting on two ingredients to arrive, and we will be there. Too soon to know if this will help, but I am hopeful. I think she has a little more energy, when she is not herxing. She is now engaging in several entertainment activities she has neglected for over a year. I am committed to a 4-6 months go at this just to see how we do. I hope to see results before this, but kiddo has been ill since Sept 2011. Recovery will not happen with the snap of my fingers. This is going to be a long trial period, and a longer haul if it works. I bought bulk herbs for all the ones I can and am putting them in capsules myself in an attempt to save money and reduce the number of capsules she has to take. Also, IMO, no fillers/binders has got to be a better route to go. Instead of fillers, I can piggy two active powders into one capsule this way . (Just an FYI, I used to work in a compounding pharmacy for 12 years, so no worries folks). Now, I only have to begin and finish the herbal ABX book. But, I am more motivated now that I have finished and taken notes through the whole antiviral book . Then, I suspect it will be a re-read of the important stuff to better grasp it all.
  25. In that case, I would suspect you either never completely cleared the infection or, less likely, J got a back to back case of strep. I do not believe a PANS child will react to residual antibodies in another child IF that child is not actively infected. But again, I am not an expert by any means yet. Do you have home rapid strep tests? I buy them off amazon, and you may find them to be invaluable in managing multiple kids around your PANS son.
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