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Everything posted by Mayzoo

  1. My daughter sees a PANDAS specialist. She has actually very low ASOs and Anti-dnase even in the middle of a 60 day bout of confirmed strep. Her immuno tested her IGG, IGA, IGE, and IGM and found she is deficient in two areas and he says that expains her low titers. Her body is not responding to infection like it should. The titers are nice to have, but they are not the everything when it comes to this disorder. You will likely have to see a specialist in PANDAS to receive proper diagnosis, treatment and tests for other co-infections. My signature shows the other infections my kiddo struggled with.
  2. I usually break it down for family that asks (we home school): At grade level for reading Below grade level for math Penmanship--dismal but working on it (no grade level for this since they do not teach it anymore ) etc..... Maybe that would help the evaluator out?
  3. What symptoms are you needing relief from? Here are some common otc meds used for some common issues: Omega-3s (inflammation) Bio-enhanced curcumin (inflammation/yeast) Ibuprofen (inflammation) Lemon Balm (anxiety/ocd) Some benefit from these prescriptions: Mobic (inflammation) very low dose SSRIs (anxiety/ocd) antivirals (if viruses are involved) anti-fungals (if yeast is involved)
  4. Glad you found your culprit. Here is to continued healing and good health.
  5. Message sent, grab a cup of coffee first...I am long winded sometimes
  6. I have been debating this one. My kiddo has both ASD and PANDAS, so I would guess we do not have a lot to lose . Our doc had a paper on the one study done so far. It was a small sampling, but who knows. We may try it when we get over this tiny bump in the road. ETA: The paper I am reading states only one study has been done with 40 participants, BUT the supplement they received is not available over-the-counter, and Paul Wang noted that the testing and safety data for otc is less rigorous. They also do not state what doses where given to the participants Is it possible your study is different than the one I am reading? Either way, it can't hurt to try it, but watch liver enzymes during trial if your kiddo is susceptible to elevations.
  7. Within 36-48 hours our kiddo is almost back to 85% + . Her tics, agitation, upsets, anorexia, lethargy, etc...are gone. Every kid is different since all these kids have different combinations of infections, different levels of immune response, different biological chemistries/metabolisms etc......
  8. It was a small piece of the puzzle I now know my kiddo is. It was not a huge revelation or a huge help, but every little bit helps some. We only had a few minor to moderate offs though, so if there is a major or numerous moderate deficiency, then it may a bigger piece of the puzzle. She was Vit d, Vit C, co-q 10, b-2 and one or two others deficient. Yeah, I get the tired part. I am willing to look up the individual tests as they are about 18 inches away and flipping through some pages, but my tireds is what made me ask if you wanted me to tonight . Usually, I just do stuff like that without asking, but----*yawn*-----not tonight . I will be happy to look it up tomorrow if it will in any way help your journey. I know I needed a lot of help when I began my journey, and I still need help here and there, so I am trying to help anyone and everyone I can along the way. Paying it both backwards and forwards so to speak .
  9. We had some tested through blood work (labcorp) but most through the OAT test. I can go over the old lab results and get you a list if that would help you.
  10. Some use it for autism and CFS. You can try a search on these forums and you may find more information that crosses over from autism/cfs to PANDAS: http://www.autismweb.com/forum/viewforum.php?f=4&sid=1e1da048c64c676e50dc250d3aa8435d http://forums.phoenixrising.me/index.php?forums/antivirals-antibiotics-and-immune-modulators.4/
  11. We are not using any pharmaceutical antivirals, only herbs. I was also told nothing touches coxsackie. However, on this protocol, her coxsackie numbers went from 1:160 (positive is anything over 1:10) to negative and her HHV-6 went from 10.71 to 4.54 in 5 months. The doc and I believe, based on her behaviours, that her EBV is going down as well, but it was so high, it has not begun to register as going lower yet, The way they measure EBV is over 22 is positive but the scale goes to 600. Kiddos was >600, so if it was in fact 2000, it will take a while to show on the blood work, since it has to get below 600 to start showing it is going down. I am not certain you can "cure" a virus. I believe they remain dormant in your body after exposure. However, the goal is to treat until the behaviours and/or titers indicate that the virus is no longer causing symptoms--which means the immune system is keeping it in check. In my kiddos case, she has been a couch potato for 18 months with crushing fatigue. Within the last 6-7 weeks she has become more active, moving about the house and in the last 2-3 weeks she has begun to regularly ask to go outside to help us work, play or just walk around. We tested her immune system and she is IGG deficient. We also tested her titers to vaccines she received a decade ago. All her vaccine titers were insanely high, indicating a messed up immune system. My goal is to get the viruses under control, so her overall body inflammation can reduce, and this will allow her immune system to recover at least some on its own. I suspect we will be on this herbal protocol for up to another year, then continue on immune modulating herbs for years after that. My hopes is that she can heal and have a properly functioning immune system.
  12. My daughter's first noticeable flare was strep related. Since then, we have been fighting numerous viruses that are the primary cause of her problems (see the list at the bottom of my post). We also see Dr. Rao. Kiddo's viral titers are coming down, and her moods/sleep/behaviours all are improving greatly. We are using Steven Buhner's EBV protocol (http://www.buhnerhealinglyme.com/symptoms/treating-ebv-and-mitochondria-damage/ and http://www.amazon.com/Herbal-Antivirals-Remedies-Resistant-Infections-ebook/dp/B00EEM7WDS/ref=sr_1_2?s=books&ie=UTF8&qid=1415739427&sr=1-2&keywords=steven+buhner) and it has helped reduce all her viral titers. Her Coxsackie titers are now negative and her HHV-6 is half what it was. Kiddo is on several other supps as well. If you have any questions, feel free to ask and I will see if I can help. Tics, both vocal and motor can be triggered by any of the following: stress, fatigue, illness, fever, anxiety, exposure to someone else who is ill etc... It is very possible your son's tic exacerbation is PANDAS/PANS related only worsens or appears under specific conditions. We did the OAT test, the neurotransmitter test, gluten/celiac tests, and a host of blood work the first visit. I feel all the tests were very helpful in piecing together the puzzle that is my child. Maybe if you print out some success stories your 16 year old could start to see that there is hope and light at the end of the tunnel and he would be more willing to try treatment? He may be resistant to treatment due to the enormity of his feelings that it is all hopeless at this point. He may feel it is easier to surrender and accept things as they are than it is to continue to fight with little to no hope of success. He would also see he is not alone and others have these issues. This may make him less likely to say he is the one causing the tics and movements. My child was greatly distressed by her vocal tic, and I used to wonder why it bothered her so much (no social reason, we home school). Then I began to realize how disconcerting it would be if my body started doing anything that I had NO control over. I would almost feel as if I were possessed and someone else was in control. Not a good feeling I can imagine now. Who wants to admit they are not in control of their own bodily actions?
  13. I would go and also get the blood work done that they may suggest. If nothing else, the blood work will be a good baseline in case you have future issues, and it may well give you a good starting point in treatment.
  14. My kiddo, of course, has to be odd man out here. She is much worse with a fever than without. Any infection has caused a tail spin here in the past. Usually fever brings out vocal and some motor tics, plus short patience and increase likelihood of "upsets." However, we just got over a short bout with a fever of 100.5 with no other medical symptoms, and she did not have + or - behavioural reactions to it. That is another notable improvement for her in my book. She was just extra tired.
  15. I have the paperback version of the 2nd edition of the Herbal Antibiotics. Do you have the first edition? If so, would it be worth my money for the protocols to buy the first edition as well? I had read somewhere that the first edition was written more in lay terms and easier for most to understand. I have no problem with the terminology in the 2nd book, but I have read many are put off by the heavy terminology.
  16. We are trying to go mostly herbal or natural here. Kiddo also showed zero on her OAT test. What I am about to try is pine needle tincture as a vitamin C substitute and anti-microbial. We live in the country and have no shortage of pine needles . Here is an excerpt from an article about benefits of pine needles: "That's because pine needles are rich in vitamin C. Hundreds of years ago many people died of lack of vitamin C, not directly, but indirectly, from opportune infections that thrived because their immune system lacked critical vitamins. Pine needles still provide vitamin C to help us stay healthy in the cold season. They can be chewed, brewed into a tea, or, my favorite, prepared as a vinegar." http://www.susunweed.com/Article_Pine-Keeps-You-Fine.htm http://selfreliantnetwork11.blogspot.com/2012/04/harvesting-medicinals-from-pine-trees.html
  17. Steven Buhner's Herbal Antibiotics and Herbal Antiviral books can be obtained as a kindle edition (can be read on any android or IOS Phone, tablet or even your computer) for $2.99 each. Sign up for a free 30 day kindle unlimited membership (cancel in 30 days to avoid the monthly charges) and get his books for less than 3 bucks a piece. I have the paperback versions, but there has been numerous times I wanted the kindle version for my android tablet, but did not want to spend another 20 ish a piece for them. Now I have them, at much less, and based on kiddos labs and how she feels, I swear by this stuff now. Hope this helps someone .
  18. Our kiddo had a great deal of fatigue. I attribute it to all her viruses. As her titers are dropping, her energy is improving.
  19. I do not think "arguing" with her will help much, BUT she is almost or over 16 right? Dependent on her mental health/ability right now, maybe it is time she sits down with you for a few non-confrontational life skill lessons. She could sit with you and help you pay the bills you have and balance your checkbook for a few months. She could also learn to actively help with grocery shopping ie keeping it in budget and cooking with what you have. All these are skills she must have to be independent regardless of her income, and the effect that has on her attitude will likely be more impactful than an argument or just stating facts she does not see in actual life. She may not truly "get" how expensive living is. The best you can hope for is to instill in her the real cost of living through non-confrontational, hopefully low stress examples.
  20. We did not use luvox, but buspar alone (w/ lemon balm, 5-htp, l-taurine etc...). We did not see positive results or negative results, but we keep it at a fairly low dose.
  21. We are using a Samsung Galaxy 3 tab for kids (roughly 200.00). I have downloaded all kinds of school stuff on it, most free. What we are using a lot right now is MobyMax. It is a k-8 program that is free for homeschooling parents. It is a bit difficult to set up and get going (parent job) but once set up, it seems pretty good so far (my kiddo is delayed and learns uniquely). It can be loaded on Apple products as well. We use it on an android. If you have either tablet already, you can load it from google play or itunes, and here is some info on it: http://www.mobymax.com/ If you do not have a tablet, MobyMax offers a basic one with the program loaded on it (you can load others too) for 69.00: http://www.mobymax.com/Tablet It is a fairly cheap way to explore and see if she can learn from a tablet (if you do not already know). If you have any questions you think I can help with, let me know. I also recently received a tablet that is now selling for 69.00 that has higher stats than the mobymax tablet. It is an 8gb 1.5 dual processor Click n kids tablet from Walmart. Since kiddo has the Samsung, I am using the click n kids under the adult funtcions, and it working out pretty well for me.
  22. Kiddo does not have a hatred of sounds, but she is VERY sound sensitive. She has been pretty much her whole life, long before PANDAS or OCD.
  23. I know with Labcorp, people in all 50 states can receive their lab work straight off the Labcorp website without petitioning your doctor first (https://www.labcorp.com/wps/portal/patient/results) Igenex may have different policies, but since it is clearly legal for the results to go directly to the patient, it would not hurt to check into if they would give you the results directly. Our doc knows I get the results off the website, so he does not even call me with the results any more. If I have questions or concerns, he knows I will email him .
  24. In reading your recent posts, you are on the really bad side of the ride right now with the mag, zinc and now this. Maybe all meds unrelated. But, I still wanted to say, we have been there on the long term way downs with only minor (or no) ups--and I am sorry you are going through this. It really creates a self-doubting and makes me feel defeated in all I have done when we are in those modes. Keep your head up is all I can offer. I try to go over any small progresses we have had when we are in "the dumps". I pray things look up for you all soon and I feel for you!!
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