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Everything posted by Mayzoo

  1. Google search shows these: https://www.google.com/search?newwindow=1&site=&source=hp&q=%22we+have+followed+several+patients+in+whom+the+initial+antibiotic+treatment+resulted%22&btnG=Search
  2. I would say you need to befriend your local compounding pharmacy and see what they can make into a cream or transdermal patch for anxiety/OCD (rx or OTC). Then take that back to your prescribing physician and see if you can get your son the next level of help that way.
  3. Okkkaaaaayyyy, Preface.....I have neither read these nor do advocate this, but in doing a quick google search here is what I found that matches your criteria: http://www.gwern.net/docs/nicotine/2003-salinpascual.pdf Transdermal Nicotene patches used for OCD and Anxiety in non-smoking patients. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2446482/ Transdermal nicotene for ADHD/depression and anxiety. I would read this, but we are on our way out of town tomorrow am and I just popped in for a short check up here. I will try to read this article later when I can.
  4. Your son could compare his tics to the other person blinking or breathing: "You do not control or think about blinking or breathing, and I do not control or think about it when I clear my throat." He could expand more if he is comfortable with it, or just leave it at this explanation. Factual, to the point, and hopefully resolves questions. Of course, biologically these are not the "same" thing, but it still may resolve the questions.
  5. I tested kiddos teeth (after reading about it here) and despite a few years of prophy abx, her teeth were positive for strep even though her throat was not. So were my teeth . I have also read of folks finding strep in the kidneys, nasal cavity, and joints. If you started out with high ASO titers, I suspect lower ASO titers would mean improvement. In kiddos case, her ASO is never elevated even 30 + days into a 60 day bout of positive throat rapid tests.
  6. If you do not already have home rapid strep tests, you may want to consider getting them to help you decide your next move. You can also test everyone in the family (at first sign of issues) much cheaper this way. I buy mine from Amazon.
  7. Steve Buhner (herbalist) has stated somewhere that herbal ABX do not need to be spaced apart from probiotics, but we still try to just to be safer. Here is a few URLs for his comments: http://buhnerhealinglyme.com/basics/antibiotic-herbs/ http://buhnerhealinglyme.com/basics/cryptolepis-dosage/
  8. Many of the success stories are titled with the word "update" in them. So, when you search, use that word or even "success" as your search terms. We are in a much better place, but not a success story yet. If we can ever get kiddo to speak again AND in a normal voice, I would consider us almost there . Right now, kiddo is not speaking at all (learning sign language and writing requests), and when she was speaking post PANDAS, she was whispering.
  9. I have bought Pain-RX from both Amazon and E-bay. It runs about 11-15 a bottle, 90 pills in the bottle, and you can take 2 tabs up to three times a day. I take two first thing in the am, and two more if I need them later in the day. I have knee, and back pain as well as headaches (I have TMJ as well). It seems to be helping all of those for the time being. I was taking huge amounts of IBU (4 tabs 4 times a day) which is now down to almost none. I have begun exercising and stretching again, and that both helps and hurts some. I ran a search on the forum last night for celebrex and came up with several hits, but have not read them all yet.
  10. We have been taking it for a while in the morning. It has helped kiddo and I both with mood and patience. Just to be on the safe side, I had kiddos lithium level tested (blood test) after she had been taking it for about 6 weeks. She still tested quite low, so I added a capsule at 3pm.
  11. Has anyone tried pharmaceutical (Celebrex) or herbal (ie Pain RX) COX-2 Inhibitors for overall inflammation? I started Pain RX for my achy joints, and it is helping me. So, I was wondering if it would help with PANDAS style inflammation, which I believe is mainly neuro, and brain inflammation. Thanks
  12. You may find some great reading here: http://scholar.google.com/scholar?as_vis=1&q=bactrim+%2B+lyme&hl=en&as_sdt=0,44 Such as: "After completing a course of intravenous antibiotics, the patient should then be placed on antibiotics by mouth for as long as it is necessary. They can be given Amoxil, Suprax, a combination of Suprax, ERYC. Some physicians are now even considering the use of Bactrim, combining Bactrim and ERYC. There are a number of medications used, either singly or in combination, that help some patients some of the time. The decision may be made on the basis of the patient's clinical response and how well they tolerate the medication." https://sites.google.com/site/marylandlyme/children/neurological-manifestations
  13. I have not found any herbal/natural products that help with autism or socialization. The oxytocin was the last thing I am willing to try, and we really tried it for anxiety related to PANDAS. Please keep in mind our kiddo is "mild" when it comes to Autism, yet she will likely never be truly independent (severe math learning disability leads to severe money issues, which leads to lack of independence). With that in mind: We are not going to try any more herbal/natural stuff for autism, and I will not go with pharmaceuticals unless she is a danger to herself or others (which I cannot foresee at this time). If you are interested in the bio-med aspect of treating of autism, have you been on this site yet? http://www.autismweb.com/forum/viewforum.php?f=4&sid=1e1da048c64c676e50dc250d3aa8435d. It has been informative, and I will still hang out there some We have never tried ABA per se. We did do ST and OT for years through a private company. We home school and as such seem to not be eligible for any therapies through school. We are going to go back to stuff like floortime and behavioral approaches and I am reading a book (Unlocking the Social Potential in Autism) on how to socialize her better. I am not far enough into it to know if it is any good or not. We do special Olympics, a special T-ball team, and I am trying to get her in girl scouts, but cannot seem to hook up with the leader. Good luck on your journey. We had a pretty good handle on the autism aspect until PANDAS. Now, it is unlikely she will ever be able to live alone.
  14. We tried the oxytocin for a about 5 weeks. I never took her up to the max dose (2 sprays in am, 2 sprays in pm) since I never saw benefits at 2 sprays in am and 1 in pm. If you ask my kiddos doc, he would say I did not see benefits because we had the spray compounded locally for 25.00 rather then going through a mail in pharmacy he recommended that wanted almost 100.00 per bottle (25.00-40.00 for overnight shipping and 60 + per bottle made). We have not tried the Respen-A.
  15. Yeah, kiddo "knows" that if she breaks it through throwing then I will not replace it, but I am not sure she fully understands this. Kinda of like snakes and spiders (we live in the country). When quizzed she "knows" if she is bitten she could become quite ill, yet she still grabs them if given the opportunity . I always chalked the snakes, and spiders to impulse control issues. Maybe the throwing is much like this. She has intense bursts of emotion/frustration, then due to a lack of impulse control, throws what is handy. For now, as soon as she shows first signs of "the upsets", I put away the electronics. I tell her she can have them back when she is calmer. So far, it is working to some degree. I discuss with her the importance of not throwing electronics and offer alternatives, but I am not sure if she is learning anything from this approach. I can hope and time will tell.
  16. My kiddo has vocal tics from viruses. Though we started on this journey with positive strep, her biggest hurdle, IMO, has been all the viruses. My siggie shows the ones she has. We also tested for mycoplasma, lyme, CMV, and a few others she did not have. Sadly, she is positive for more than she was negative for. We have been on Buhner's since 05-05 and we have been at full doses since about 06-10. She seems to be doing better on the whole, and she overcame a sinus infection with only a little regression.
  17. Traditional Pharmacueticals my kiddo has been on: Mebendazole (first--two rounds two weeks apart) Albendazole (Second--two rounds two weeks apart. Herbals: Black Walnut complex by Nature's Answer She is currently on Buhner's EBV protocol and that some cross over for anti-parasitics in it.
  18. I do not notice positive or negative effects from them or Sacc B. We use Healthy Origins Probiotic 8 strain 30 Billion CFU.
  19. She has not ever been in rage, or physically aggressive with herself or us, yet. She gets upset and quietly cries, and has a vocal tic, then seemingly out of the blue (which we can predict more or less now), she grabs something and throws it, or hits the couch or stomps and it is over as quick as it started. However, it does not happen every time she gets upset and the throwing would be the only aspect of her behaviour that could be labeled aggressive. We are VERY fortunate in that regard. Since we can usually see this issue coming now, we try to remove electronic items from her reach. We remind her when the upsets start, to not throw electronic and what is appropriate behaviour. I will prompt her to get up and stomp and I stomp with her. We also remove the ipad and nintendo, and tell her she can have them as soon as she is not upset. We have also discussed this with her when she is not upset, and she agrees she should not have the electronics when she is upset. I think finding soft items to throw is a good idea. She does occasionally throw hand towels, and she does not get in trouble for that either. I guess we need to come up with other soft things to keep nearby. I think we get some scrap paper and encourage her to tear it up. We have the protection plan on the ipad. If she breaks by throwing it, it will be a hard sell to get daddy to let her have the replacement. We are just fumbling our way through this trying to decide if this is within her control or not. I flip flop back and forth.........geez, clear knowledge, without having to guess, now and then would be refreshing. Thanks for the responses!
  20. My kiddo is doing fairly well most the time right now. However, we do have short bouts of "upsets" now and again in which her vocal tic returns and she has a body tic (twitch) that looks like she has hiccups. During these bouts, she tends to throw one object (usually i-pad or nintendo but sometimes food or remotes...whatever is most handy). After she throws an object, she usually seems to feel better and sometimes the upsets go away completely. We have offered numerous acceptable ways to release her frustration (stomping, hitting the couch, writing, etc...). We have been punishing for throwing the ipad and nintendo by taking them away for two days but, I am beginning to wonder. Throwing seems to offer some type of release that allows her calm back down. She really loves her ipad and her nintendo, so she really tries, under normal conditions, to not loose them. I am beginning to wonder if this is a compulsion or just a typical kid fit during a time of intense frustration. If only I had all the answers . What are you folks votes? Compulsion, tantrum or other?
  21. I have OCD and I use humor about it since no one really wants to hear the truth anyway. I would never out right tell anyone in my family that I have intrusive, violent thoughts that I cannot get rid of or that my anxiety is high and my thoughts scatter if my house is cluttered. Nor would I tell them I have to take medication to control those issues. So instead, I tell them of the positive side that my house is usually clean, and I rarely loose items since I know where stuff is, then I chuckle about it. Maybe this is their approach as well or maybe not. Maybe they are just callous or forgetful. Most the time is just a matter of they do not think things through since they CANNOT put themselves in our position. Honestly, most people do not want the real or whole truth about much of anything now days. They do not really want to hear the truth about what any of us go through on a day to day basis with our kids, how it is affecting our own health, our jobs, or our marriages. They do not want to know kiddo screamed for hours until she fell asleep and then hubby and I, frazzled and on edge, got into a huge fight because of all this. Me, being rather private as well, I would never tell them even if they wanted to know . I learned to only give a cursory answer to most, which does not include specific symptoms kiddo has. It mostly is "yeah, kiddo is doing pretty well," "heck, she has a sinus infection and no one likes those," or "she just got over a sinus infection and things are looking up," ETC..... I almost always focus on the most positive developments, ie she has been sleeping great lately, school is going pretty well, etc...... Personally, I have learned to just keep outgoing information to a VERY BARE minimum. I can process any response I get this way without complications, hurt feelings, or anger.
  22. I will read them when I can. Thanks for posting them. My life is kinda hectic right now. Kiddo and hubby have sinus infections, I have gallbladder issues, and our AC broke (105 every day right now). Kiddo has many super high (10 times + ) virus load for the listed viruses in my siggie. Our Immuno rarely tests IGM, but he does test IGGs and he treats high IGGs. Right now, we are trying Buhner's herbal EBV antiviral program for kiddo.
  23. I give kiddo milk thistle three times a day right now. Normally I give it only once a day, but we are in sort of a med flux right now, so extra support seemed good.
  24. I used a fake name for my child, I had a relative use their credit card to pay for it, and had it shipped to a friends address. I have no idea what they will be doing with this information in the future. I know it is fairly "safe" now, but I have no idea what the laws will be during my child's entire life, so I wanted to be extra safe if possible.
  25. Here is the father's blog covering the child's story: http://gizmodo.com/5914305/hunting-down-my-sons-killer
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