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Everything posted by deby

  1. Did you see Dr Mullan? I would like to know your opinion, I'm trying to find a PANDAS Dr That is open to a natural approach too.
  2. Hi Pam, I am in the same dilemma as you. In that I don't know which way to go. I prefer natural means, but when we got the pandas diagnosis it was by a conventional pandas doctor so we started the antibiotics that day. My daughter is 12. She is severe. She also would not be able to attend school. Fortunately we homeschool. You are lucky that you have an integrative doctor that knows pandas. Our naturopath and integrative MD are only vaguely familiar with it. Both advise to stay the course (with antibiotics) and even support steriod burst (though we are not likely...reserving that as a last resort) We are doing natural remedies along with antibiotics. Fortunately, our pandas doctor is natural remedy friendly and feels our daughter is on good supplements. You do not have to be restricted to the doctors in your area. There are people on the board who drive out of state to see a pandas doctor. Did you check the list of pandas doctors? The author of saving sammy also has a list of doctors. Dr. Nancy Mullan of Burbank, CA does natural remedies she told me that the success rate is better than conventional medications. I sent her an e-mail and she called me. She said that she would start with gut work. That is what we are doing. I always say go with your gut, though, in this situation I feel my intuition is affected by my fear... Anyway, I wanted to let you know that you are not restricted to natural verses conventional and that you are not restricted to the doctors in your area. (None of the pandas doctors in our area accept insurance anyway.) May Hi Parent4eyes, did you treat your child with Dr. Nancy Mullan ?what is your opinion of her? We live in Woodland Hills and I'm trying to find a PANDAS Dr. that also is open to check other connections as allergies/environmental that could affect the immune system. Thanks.
  3. I highly agree and be sure to leave a significant amount of time in between. I do not feel that supplements are a complete waste. Even if it turns out that, for example, the omega-3s didn't help with the pandas, it certainly is very good for your child. Many people with no health issues see these benefits and take omega-3s, probiotics, antioxidants, vitamins, etc. A Pandas doctor, Dr. Nancy Mullan, in Burbank CA would respectfully disagree with the doctor who states that supplements will not help with PANDAS. She feels strongly that natural remedies are far more effective. A lot of theories and opinions... leaves us in the middle without any studies to show us the way. Good luck. Hi! we also live in L.A, did you find a good PANDAS Dr. to treat your child? thanks!
  4. prednisone or prednisolone I don't have experience with Dr. K's 5 day protocol...so I don't know the doses. My daughter took pred for a month--twice. The first time she was approx 42lbs and her highest dose (1st week) was 20mg broken into (2) 10mg in the am & pm. The second time she was about 50lbs and her highest dose (1st week) was 30mg broken into (2) 15mg in the am & pm. The tapering was a little different each time...but generally after each of the next three weeks the dose gets cut in half and/or every other day the last week or so... I hope this is helpful. Thank you Karen, very much for your response. I was reading your posts, because I was wondering what was the treatment for your daughter, since it is the first time that I see that someone gets more steroid than 5 days. We are currently been treated by Dr T. that he's not so responsive lately, and we don't know how to proceed. It makes very sense to me to do the steroid for more than 5 days, and see if there are improvements, before rushing to IVIG.
  5. Which medicine & amount it is recommended for steroid burst? My Ds8 is 55 lb. Thanks!
  6. My Ds8 started with tics 2 months ago, we brought a new dog to our house around 6 months ago. I tested him for allergy (RAST) test for dog hair and it came negative. Still, how can I be sure that he is not allergic to dogs saliva/urine/other? Any possible treatment , besides giving the dog away ?
  7. Lynn, As mentioned before there are some kids that food coloring and corn syrup really aggravate the tics, but I wanted mention another thing. It is regarding the therapy, are you with him during the session? do you know if they talked yesterday about the tics? What happen with our son, is that when we open the subject, and we started talking about tics, also the therapist talked about that, then tics came to his conscious, and then became really bad. We decided (and we got this advise from the neurologist) not to talk anymore about the tics and to ignore them completely. Continue whatever we are doing at that moment. I don't know if that is your case. but I just wanted to pointed it up.
  8. What you wrote is exactly my feeling, I don't have an answer for your question, I'm pretty new at this (my son started with the tics 2 months ago). I know that my son has allergies, and I know (by the titers) he had an infection. Right now is on abx, but the question till when? he is not 100% yet. What is affecting his tics right now? the allergies/the infection/both? The problem as you said, that I couldn't find a doctor that keeps trying, that is open to different things. I took my DS8 to an allergist, and she doesn't believe that allergies can cause tics. Still there are so many doctors that don't open their eyes to other possibilities. Very frustrating.
  9. I was wondering if anyone treat their kids in the Drake Institute and what are the results. drake institute link Thanks!
  10. Dear Buster, I read your reply to Dr. T and I saw that you talked about "kids who seem to react to others in house who have culturable strep (i.e., seems like more an allergic reaction - elevated IgE or Eosinophils)" I am interested to know if this is a common case, since this is exactly our case. My husband and other non pandas son were tested positive for strep. My pandas son has extremely high titers, elevated Eosinophils, IGe on the upper limit.IGg sub 4 elevated. Do you know how to interpret this combination of indicators and how to treat this. My son is on abx (zytromax) for ~40 days. There is some improvement but very far yet to be 100%. Thank you!
  11. perennial allergic rhinoconjunctivitis can cause tics very similar as TS and PANDAS, does anyone knows about this? Please read this link: PARC
  12. Hi Wendy, Looks like there are no co-infections in the case of my son (only very elevated ASO, anti DNASE and streptozyme titers)in this case, with your experience in this forum, which abx is the best? I am giving him only Azithromycin. Is Omnicef usually prescribed for strep only too? Thanks!
  13. I went to see Dr. Stiehm around 3 weeks ago, he treated some kids with Pandas ( not many) and did some IVIG to some of those kids. He is not an aggressive doctor, means that if your kid show signs of pandas (high titers + ocd/tics that appear suddenly) he will give abx for a short period of time, then he will prescribe some prophilactic abx for some time (around 4 months) and then if nothing help maybe he will start talking about IVIG. He will not go fast to that approach. He complained a lot about the insurances giving him hard time and a lot of bureaucracy to approve and IVIG. I can not say that I was really happy with him, also because his social skills specially with the kids are not the best. He also recommended some medications for the tics (Neurotin) something most of the people are against, proven that it doesn't really help, and there a re a lot of side effects for taht. In the other hand, I don't have other option that I know here in around LA. I wonder if any one knows a good integrative physician, somebody who can guide me in nutrition, supplements etc.
  14. Thank you all for your advises, tomorrow I'm taking my DS8 to an allergist, we will start with the skin test and then probably the blood test. I know that it could show no allergies, but if it shows at least I have a direction . I'm also starting to suspect that he has candida/yeast so maybe I'll ask the allergist to perform some OAT tests. Will see tomorrow, thank you!!! Rchan, yes, Magnesium seems to help tics (at least this is what lots of people in this forum say, we didn't see improvement just by giving Magensium), we are giving Natural calm and epson salts baths.
  15. Phyl, Could you tell me who was your son's DAN doctor? did she recommended the Great plains tests? I'm starting to think that my son has the same problems. Thank you!
  16. Hi Cheri, How did you know your son had yeast overgrowth? did you do any Great plains test? I'm suspecting my son has something, his tummy is kind of big (inflate, like the babies) and he is a skinny boy. Besides he has a lot of gas and complains of tummy ache. I started with a good probiotic around 10 days ago, but he still takes antibiotic and he used to take a lot of antibiotic when he was a toddler. Which type of doctor recommended all these supplements?Is it a nutritionist/allergist? how did you decided what things give your son? Thanks!
  17. To see improvement maybe 10 days, to be cured completely, who knows? My son is already 30 days on abs, and still not 100%.
  18. He is doing better, he is on abs (already 30 days), we discovered high titers and strep in some members of our family. I'm starting to suspect candida or yeast, I think the mayor improvement started to happen when I added pretty high doses of a good probiotic. I think I'm going to do some of the tests that Great Plains offer. We also trying to avoid artificial food/buying organic/ we do epson salts/multi vitamins/fish oil. We removed the carpets from his room too. From all these things I think(but it is hard to tell) what helped the most in this order: antibiotic, probiotic, taking out all stress, then the rest.
  19. EAmom, when you say "she is 80-90% better", do you still continue to give her antibiotics? I am in that state right now, my son is also ~80 better, and I'm not sure if I should continue or start giving him the prophylactic dose (twice a week). For how long we need to continue giving them the abs? In one hand i don't want to stop in the other, I know that giving abs for so long it is not a good thing.
  20. My DS8 is on Azithromycin for 1 month, and we saw a great improvement, I can say he is 85%. But he is around 85% for 1 week, and I don't see that he continues to improve. For how long he should get the abs if we don't see real improvement anymore? Are there other alternatives other that IVIG?
  21. My son took 10 days of Augmentin and now he is on his 20th day of azithromycin, we started seeing improvement after 15 days.
  22. My pediatrician said that my son needs to do the the TB (tuberculosis) skin test. Now that my son has pandas and I heard that vaccines might aggravate the situation, I'm afraid of doing that. Any input? is it safe? does any one did it for your PANDAS kids? Thank you!
  23. He took Augmentin (high dose, I think 1800mg a day) for 10 days. Then the Dr. switched to Azitromach (I don't know how to spell that). But it depends of what type of infection they find, some abs are better for strep and some are better for other infections.You need to consult a doctor. Total, looks like he will taking the regular dose for 1 month (ending in 5 days), and if he continues to improve, switch to a prophylactic dose (twice a week) for prevention.
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