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Everything posted by colleenrn

  1. Kim, My daughter (PANDAS) allergic to sulfonamides, which do contain sulfur. Does that have anything to do with your theory on sulfur metabolism? She was give a sulfonamide for an ear infection when she was about 1 1/2 and broke out in head to hives. Just wondering when I read these posts. Thanks, Colleen
  2. Sorry! I forgot to put the link. Here it is. https://www.oprah.com/plugger/templates/BeO...lugId=315500001
  3. The Oprah show is considering doing a show on OCD. I just sent the producers an email explaining PANDAS and asking them to include it in the show. I think that it would be a great way to make people aware that it exists, especially physicians who still don't know about it, so more children can be helped. Here is the link in case anyone is interested in emailing them Thanks, Colleen
  4. My daughter is having a palatal expander placed in two days to expand her palate in preparation for braces. The orthodontist said she would have to wear it (continuously) for 6-8 months. I am SO afraid that it is going to be a "safe haven" for strep. I was wondering if anyone had any suggestions as to how she can cleanse it everyday to keep it from holding onto any strep. I have read that xylitol kills strep and I have a bag of it. Does anyone know if I can dissolve the xylitol (it looks just like sugar) in water and have her gargle with it? Would gargling once a day with grapefruit seed extract dissolved in water kill strep? Any ideas would be so appreciated. Thanks!Colleen
  5. My daughter's OCD and tics began when she turned five and she was diagnosed with PANDAS about 6 months later (we did not even know she had strep for 3 months). After recurrent strtep, we decided to do a tonsillectomy and adenoidectomy. It turned out her tonsils and adenoids were enormous and so full of holes, the ENT said that antibiotics could never get rid of all of the strep. After having the T and A she was strep-free and OCD/tic free for 1 1/2 years. After the 1 1/2 years, she began to get strep again, but never as frequently as before. My 7 yr. old son had a T and A when he was 5 b/c he began to get frequent strep and his tonsils/adenoids were so large it was causing sleep apnea. He has gotten strep much less frequently since the T and A. My 5 yr. old has not had a T and A, but he has huge tonsils and whenever he is sick he snores very loudly and has a very occasional sleep apnea. At this point I am just keeping an eye on him.
  6. Emma, Have you tried a cephalosporin antibiotic? My daughter seems to do well on both Zithromax and Keflex (cephalosporin), but I recently read that some strep is becoming resistant to macrolides (zithromax being one of them). Just a thought. Colleen
  7. I had to call around to different pharmacies and ask if they had white Zithromax tabs. I finally found one that did and they said they got it from a certain manufacturer. It costs the same as the ones with red dye.
  8. I just watched the video and it made me furious. I wonder how he would explain to me how my perfectly healthy, "normal" 5 yr. old woke up one morning with OCD and tics which disappeared with antibiotics (until the next strep infection). It is SO unfortunate and I feel negligent that he doesn't "believe" in PANDAS. HOW MANY children does he send away from his practice with untreated strep while their parents watch them get worse and worse? I intend on contacting him about this. I don't know what good it will do except to make me feel better and to continue in my attempt to educate doctors who are clueless about PANDAS. The thing that I don't understand is that there are NO doctors who don't believe in rheumatic fever. PANDAS is the same process, just instead of the strep antibodies atttacking the heart, they attack the brain. Here is his contact info if anyone is interested. Steven Pavlakis, MD in Brooklyn, NY. His website is drpavlakis.com
  9. The following is from the book Clinical Management of Streptococcal Pharyngitis by Michael Pichichero, MD related to strep carriage. Group A streptococcal (GAS) carriage is likely when a aptient has a positive GAS throat culture but shows neither symptoms nor a demonstrative rise in streptococcal titers. Patients experiencing a relapse with the same strain of GAS soon after primary infection often have milder and fewer symptoms of GAS infection, which may not be remembered, even though such patients have been shown to demonstrate an antibody rise, thus identifying them as susceptible to acute rheumatic fever (ARF). Treated or untreated, symptoms of acute infection with GAS resolve, but ongoing carriage of the organism may persist. Patients are contagious to others in the early stages of this carrier state. After a period of time(1 to 2 months), the carrier has diminished numbers of GAS organisms in the tonsillopharynx, and transmissibility to others diminishes. High rates of GAS carriage may account for increased penicillin failures in a semiclosed community. Asymptomatic GAS carriage may persist despite intensive antibiotic treatment. Eradication of the GAS carrier state is infrequently achievable with penicillin; clindamycin; penicillin plus rifampin or cefprozil is more effective. After treatment for 10 days, patients more often become carriers if treated with penicillin compared with cephalosporins or macrolides. The following passage is talking about failure rates of penicillin and amoxicillin for strep: The failure rate with penicillin and more recently amoxicillin has been rising over the years. A projected bacterial eradication failure rate in excess of 15% is considered by the Food and Drug Administration as unacceptable for a first-line therapy of GAS tonsillopharygitis, and penicillin has not met that criterion standard for well over a decade. Hope this is helpful to some people. Colleen
  10. The info on strep carriers I got from the book written by an MD who sees a lot of PANDAS kids in his practice. It is called The Clinical Management of Streptococcal Pharyngitis by Michael Pichichero. I would be glad to post what info he gives, but it will be later in the day after I get my kids off to school. He also talks about how they are seeing an increase in kids being strep carriers after being on Penicillin to treat an active strep infection, which I found very interesting. I will post it as soon as I can. Colleen
  11. My daughter is 11, got the varicella vaccine at age 1, and then shingles at age ten. Yes, you can still get chicken pox even if you are vaccinated. It seems to break out every year at our elementary school and the majority of the kids are vaccinated. They say if you are vaccinated and get chicken pox it is milder, but I don't know that firsthand. My plan is to let my three boys get chicken pox and my daughter will get her "booster" from being around them. I am just nervous that if her immune system at the time is messed up that she could get shingles again. Any of us can get shingles, but is is mostly seen in the elderly, so we would most likely not get it until we grow older, God willing. When my daughter got shingles there was a boy in her class with chicken pox. She was not sick at the time, so we assumed it was b/c of her immune system being "off" from PANDAS. I had a lot of bloodwork done on her at the time to make sure there was not something else going on that caused her to get shingles at such a young age.
  12. CP, This is the religious exemption form I used. http://www.vaclib.org/pdf/va.txt
  13. CP, I am Catholic also, but the form I filled out did not have a place to specify relgion. If you can get a medical exemption, that would probably be best, BUT you have the right to a religious exemption and you do not have to justify it to anyone. Here is a link that explains it. Colleen http://www.vaclib.org/legal/yourrights.htm
  14. I live in Virginia and we only have medical and religious exemptions. I did the religious exemption for my youngest three children and had to have it notarized (at library). Two of my children that are in school recently had pertussis and I held my breath waiting for major fall out b/c they were not vaccinated. Not one person said anything to me about them not being vaccinated. You can do a religious exemption (if your state has one) no matter what religion you practice. Good luck. Colleen
  15. Your body can fight strep and you become symptom free without antibiotics, but you usually become a carrier which means you could infect others or reinfect your daughter.
  16. I emailed both Oprah and Dr. Phil years ago explaining PANDAS b/c if more people are educated maybe we would get more answers and better care. Neither show responded. I try to educate whoever I can about PANDAS b/c I think it is ridiculous to step foot in ANY pediatrician, family practice, or neurologist office and have them not know about PANDAS. It has been in ALL of the literature for the past 20 years and when I meet a physician who gives direct care to children and they are not aware that PANDAS exists, I immediately know they are not current on their continuing education or on current literature. I find that unnacceptable.
  17. Kim, My daughter shows and increase in neuro symptoms with any illness, but I remember thinking that she did not have a big increase in neuro symptoms, maybe just slightly increased. When my sons contract chicken pox I am nervous that with her "messed up" immune system, she could have a reoccurence of shingles. Colleen
  18. Faith, Pertussis (whooping cough) usually starts with a cold, sneezing, mild cough, then within 1-2 weeks the cough worsens. None of my children got the "typical"whooping sound. It started with my 7 yr. old and I took him in the early stages to be tested after the school nurse said they had one confirmed case. The nurse practioner I took him to is very respectful of a parent's right to decide about vaccines and was not negative towards us in any way. She tested him b/c I insisted as she did not believe he had pertussis b/c the cough had not worsened at that point. B/c we tested him so early, we began antibiotics with myself and my other children before they had symptoms, so the course of the illness was less serious and shorter. Colleen
  19. I have posted before about my daughter's reaction to the varicella vaccine. She received it at age one, had a high fever and rash the following week. When she turned 10 she had a full blown, horrible case of shingles. Now if the vaccine was supposed to keep her from getting chicken pox, then how did she get shingles? Shingles is a reactivation of varicella in someone who has HAD chickenpox. I feel that the varicella vaccine is one of the most dangerous ones out there. I just registered my third child for kindergarten and was very upset to see that the CDC is now recommending the first varicella vaccine at age one and ANOTHER DOSE of VARICELLA VACCINE between the ages of 4-6, pre-K. The thing that horrified me the most is that they are saying it is perfectly safe to give the first at age one and the second as few as 4-8 weeks later. I feel this will devastate many, many children, to be injected with varicella twice and so close together. I did not, nor will I, vaccinate my other three children. On the note of non vaccinated children, and this is ONLY my experience, I am not suggesting it is right for others, BUT my vaccinated 11 year old and my unvaccinated 7, 5, and 1 1/2 year old recently had pertussis and made it through perfectly fine. It was one of the diseases I most dreaded and feared when we decided not to vaccinate the younger three children. They were all over it within less than two weeks and now they should be covered for life.
  20. Tracy, My daughter was diagnosed with PANDAS 6 1/2 years ago. I always give her antibiotics when she has a flareup, even if the swab comes back negative and she responds to the antibiotics. Her swabs used to come back positive each time she had a flareup in the first few years, but a lot of times they are neg. now, but I know she has strep b/c of her huge change in behaviors ( anxiety, tics). Another thing I have found and I don't know if others have had this experience, is that her quick strep swabs are always negative and she is physically asymptomatic (no fever, red throat, sore throat). I would recommend doing a course of antibiotics and making sure they are effective. We had to change antibiotics several times over the years as the ones that had previously worked no longer did. Colleen
  21. I just went through this with my children. Three of my four children were diagnosed with pertussis last week and all of us had to go on Zithromax. The compounding pharmacy I was going to use so that they did not have to take the Zithromax liquid with red dye said it would cost me over $100 to have it compounded. What we did instead was to crush the Zithromax white tablets and mix it in applesauce or anything you can get your child to take. It tastes bad, but they dealt with it. Most Zithromax comes in pink caplets, but this pharmacy gets it from a manufacturer that does not make it with coloring. The pharmacist said that was perfectly fine to crush the pills. I did this for my sons ages 1, 5, and 7. I have also opened Keflex capsules and dumped the powder in juice, which the pharmacist said was fine. You can do that with a lot of meds if you just check with the pharmacist first. Good luck.
  22. Evie, Does your son still have his tonsils and adenoids? In my daughter's case, each antibiotic stopped working until we had her tonsils and adenoids removed. Hers were also very large and caused slight apnea as well as very frequent strep throat. Our ENT said her tonsils were so cryptic (full of holes) that the antibiotics were not getting rid of the strep. Just thought I would mention that in case that is a possibility.
  23. I bought the management of strep book by Michael Pichichero off Amazon yesterday and would be more than happy to scan the chapter about PANDAS and post it. I am not sure how to post it once it is scanned though. Colleen
  24. I have two port wine stains that I have had since birth (I am 37) and I believe all four of my children do also. My 2nd child has several cafe late marks and a strange raised are (flesh colored with bumps) that he has had since close to birth. I have showed it to several doctors, including dermatologists who all have no idea what it is. My daughter has some weird moles/marks. All of my children freckle extremely esily once they pass their 4th birthday. I am really curious how this could be linked, but I also don't understand the link in the articles you posted. Thanks, Colleen
  25. My daughters tics and OCD used to go away while on antibiotics, but would return within 1-3 days after finishing the course. This continued for about eight months, at which time, she had her tonsils and adenoids removed. The ENT said that the reason her symptoms would return after finishing the antibiotic was because her tonsils were so cryptic (full of many holes) that the course of antibiotics would work well enough to kill the strep, but b/c of all the holes in hert tonsils the antibiotic would never completely erradicate the strep and it would recolonize, causing the symptoms to return. Once her tonsils and adenoids were out, she was strep free and symptom free for 1 1/2 years, at which time she began to get strep again. I am not suggesting that anyone have their child's tonsils removed, but in my daughter's case she had so many cases of strep and her tonsils and adenoids were large enough that it was causing some obstruction at night, especially whenever she was sick. Looking back, she began snoring at night at a very early age (before 2) and most likely always had large tonsils. My son has his removed when he was 5 b/c he had sleep apne they were so large. My third child has been snoring a lot the past year and has started to have a few seconds of apnea, only when he is sick and I guess his tonsils are a little enlarged. The ENT has seen a lot of kids with PANDAS and has seen this pattern of the tics/OCD coming back time and time again when the child is not on antibiotics.
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