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justkeeptrying

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justkeeptrying last won the day on February 14 2016

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  1. Sirena or philamom, Would you mind sharing with me your experience with Rothman (or any other PANDAS doctor in the area)? We will be relocating to the Sarasota area over the summer and the idea of not finding a competent doctor for my daughter is daunting! I am not looking for an IOP. I am looking to get established with a doctor that is able to handle PANDAS (and help us navigate the flares). Thanks so much!
  2. I appreciate your post bws, and have a few questions for you. What else are you doing in conjunction with the cream? You mentioned that your DD had been taking vitamins and herbs for the past year or so. Are they still taking those? Also you mentioned you saw some tics in your son at the beg. of treatment, do you recall how long they lingered around? My daughter is having pretty bad tics (motor and vocals). She tested + for babesia, myco p, and her strep titers have been ridiculously high for almost 2 years despite treatment with multiple antibiotics, herbs, heavy supplementation, diet and the kitchen's sink. We are so exhausted, and feel so isolated! Are you planning on retesting your kids for Lyme and also their titers at some point to see if their #'s are matching their symptoms (or lack thereof)? I'm glad this is working for your family, and would appreciate any more information you can give me. Thanks!
  3. Vik or Sheila, Who is Dr. N in CT? Dr. Nancy O' Hara? If not, would you mind sharing this doctor's info with me? My daughter is back with a vocal tic that is keeping her away from school again. Sadly, we didn't see much progress with Dr. B, and I am looking for experienced doctors in the area. It is so tiring, and frustrating when almost every single doctor's visit leads to a dead-end!
  4. mge_1, When we took DD to the neuro, she didn't want to prescribe anything unless the tics were to a point of disrupting DD's normal life (which by they way, they were back in December). The dr. was very clear with us. She said, "medication may or may not help. We will have to try and find the "right one" at the "right dose" to see if there is any improvement on her tics". I didn't want to go that route at the moment because there was a lot of trial and error involved. So, I am sorry I can't be of any help regarding medication and tics. What I do know is that DD's naturopathic dr. contacted Mater Technologies to find out more information about the patches because he wanted to make sure the patches were safe for my daughter, and he is on board! There are no side effects other than a little skin irritation on the area, but you can move them around a little bit (they will explain everything to you). DD's tics were so bad that she rather have a little irritation on her skin than tics. Our ND said it was okay to keep her on the herbs and supplements plus the patches at the same time. You can contact them and ask them if they have had an experience with a kid wearing patches while taking medication. I am not a doctor, but I don't see why you should not at least try them. You will know fairly quickly if they will help your son. Just to update: The minor head jerking my daughter was presenting went away after her classroom was clear from the virus that was going around. I was expecting another tic to emerge after the head jerking, as it was usually the case with her. So far, so good. She is still doing very well (knocking on wood!).
  5. The company sent me a 3 day sample. During those 3 days, the difference we noticed in her tics was dramatic and more than enough to move me to place an order. Since it was around Christmas time, there was a delay in the shipment, so her usage was interrupted for a few days, and we did see the tics increasing during those days. On December 31st, we received the order, and by December 3rd we were able to go out with her again after being stuck in the house for over a month due to her loud tics. To be honest, we have noticed some head jerking coming back (starting Tuesday). DD is allergic to dust/dust mite and she was exposed to it on Monday. There are other viruses going on at school as well. I am not sure but that might be the reason some tics are coming back. It is worth noting that they are less intense than they were before wearing the patches. All in all, we are very happy with the results we have seen with the patches, but still keeping our fingers crossed around here. Hope this helps!
  6. I have been lurking around these forums for about 10 months now. I just signed up now because I wanted to report our experience using Repreeve. I guess my story is no different from anybody else's here. To summarize it is a story of misery, desperation, helplessness, worry, but also determination and perseverance, driven by the deepest love for my DD (who just turned 10). She started having very mild tics when she was in kindergarten. I was sent home multiple times by many, many doctors. She started getting worse in April (2015) when she was 9. She had different tics that continually changed from one to another (head bobbing, abdominal contractions, eye blinking and rolling, neck stretching, and seizure-like tics that were very scary, etc.). We tried diet intervention according to what she tested sensitive to, heavy supplementation, and almost everything else in between, which could be material for a whole book! In November, her tics had changed from motor to vocal ones. She could no longer be under the radar at school. They were constant and SUPER loud. We were so desperate. She had to be kept home from school for an entire month, and she was starting to feel very sad and isolated. Since I have been on "research mode" for the past 10 months, I came across Sheila Rogers' post on those new patches (thank you so, so much Sheila!), and out of desperation I decided to order a sample (which by the way was free). I am very happy to report that even though my daughter's tics are not 100% gone, she is finally doing much better, and has been able to return to school. I am sharing this story to encourage you guys to ask for, and use their sample. Who knows? It might bring some relief for your child, and you have absolutely nothing to lose.I really didn't expect the patches to work for my daughter because she is a PANDAS/PANS child (by the way 9 mos. on antibiotics never made the tics go away either). I also started DD on the Feingold diet on Dec 31 which I know is also helping, but the tics started to diminish while wearing the sample of the patches (5 days before starting the diet). Since she is a PANDAS/PANS kid, the patches are not obviously the only thing we are using around here. So, I do not know if the tics were meant to diminish on their own, but for me, it is too much of a coincidence the almost immediate relief my daughter enjoyed after 9 months of being completely annoyed by her tics. She says the patches are diminishing her urges to tic. I just hope this post can at least help one child and his/her family out there. Good luck everyone!
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