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caring mom

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  1. Hi Everyone, My dd7 has not been doing well since the end of January when she got sick (a simple cold). She was at 99% before that and since being sick she has starting ticcing again. She has been on Azith since last July and Vancomycin (for the second time) for 1 month. I put her on Vanco again thinking that the clostridia returned (she had been off Vanco for 5 weeks) and that's why her ticcing came back. The Vanco is at the same amount she was taking last time when it worked so well but she's not getting any better. I had never tried Motrin before and decided to give it a try to see
  2. Hi All, Without going into a long history, my dd7 had been at 99% since December. She was diagnosed with PANDAS and clostridia back in July. Things were going great until she got sick at the end of January with what seemed to be a simple cold. When she got over her cold she started to ever so slightly tic again (she has vocal tic). I called her dr and asked to be put back on Vancomycin again (she had taken it for 8 weeks in November and December. Then when the prescription ran out I didn't refill it because I didn't realize the dr wanted her to continue on it anymore). Altogether she
  3. Oh Peglem, I'm so sorry!! You have unbelievable inner strength to be able to deal with this situation in the way you have!! I can't imagine what it must feel like to watch your child literally undo hours of work right before your eyes, have to maintain your composure, and then clean it up and start all over again! I would be in a loony bin in by now and I shudder to think of what I would want to do to my dd. I also think your doctor needs to know what you are dealing with before Tuesday - you've given this medication more than a fair amount of time to work and it's just not cutting it! Ple
  4. Hi All, I have been meaning to update on my dd but have been so busy. To refresh your memory - my daughter was diagnosed with Tourettes 2 years ago and recently (2 months ago) with PANDAS (based on history and blood work). She was put on azith 2x/day and still remains on it. For yeast she was given Diflucan and now switched over to a natural product called Enhansa. Her labs also came back with VERY elevated clostridia markers for which she was put on 2 rounds of Flagyl. We got off the Flagyl 11 days ago and she is doing phenomenal! Folks, thanks to the Flagyl her tics are 99% gone!!
  5. My dd was on Flagyl for the first time for 2 weeks and within 2-3 days after we started I noticed a decrease in her vocals. Her motor tics which were always very slight and not noticeable seemed to increase a bit as the vocals decreased, but I wasn't concerned because they still weren't noticeable unless you completely stared at her for a while. By the time 2 weeks had gone by she was down to maybe 5 vocal sounds a day (this was after her ticcing every 3-5 seconds all day long). Within one week after stopping the Flagyl her vocal tics started coming back (25-30 a day) so her DAN put her on
  6. My dd was on Flagyl for the first time for 2 weeks and within 2-3 days after we started I noticed a decrease in her vocals. Her motor tics which were always very slight and not noticeable seemed to increase a bit as the vocals decreased, but I wasn't concerned because they still weren't noticeable unless you completely stared at her for a while. By the time 2 weeks had gone by she was down to maybe 5 vocal sounds a day (this was after her ticcing every 3-5 seconds all day long). Within one week after stopping the Flagyl her vocal tics started coming back (25-30 a day) so her DAN put her on
  7. Hi Faith, This is my first post although I have been reading the Tourettes/PANDAS boards for quite some time. I always promised myself that I would write in and tell my story when I finally had something valuable to share with others that worked. Unfortunately, until very recently NOTHING has. To make a long story short, my dd6 was diagnosed with Tourettes 1 1/2 years ago and finally with PANDAS 1 month ago. Like your son, her biggest/only major problem is a vocal tic (sounds like a cross between a loud hiccup and a cough). When she's waxing she does it every 3-5 seconds (the sound dr
  8. Hi Matthews Mom, Just wanted to let you know I am in OC too (Rancho Santa Margarita) and thanks to some recommendations from people on this forum I too went to see Dr. Lin in Irvine. He diagnosed my daughter with PANDAS after I spent almost 2 years of thinking she had Tourettes. He has been very helpful and my daughter has improved greatly under his care. We are also at the beginning of our journey with PANDAS so I don't know what lays ahead but I feel very comfortable recommending him to you. I can definitely say he aggressive with his treatment and feels PANDAS is nothing to mess aro
  9. KMom, What about Kefir? I see that it doesn't contain s. thermophilus but has other probiotics in it (mine has s. diacetylactis and s. florentinus). Do you know if it's just s. thermophilus or anything with an S.? Do you do cheese? Caring Mom
  10. Hi Nancy, I'm so totally there with you! While my friends took their summer vacations to Hawaii, New York, and Florida, I spent the summer in the doctor's office and the pharmacy paying thousands of dollars out of pocket to find answers for my child. I had no summer vacation and with all the money we're spending each month on medicine and supplements I can't imagine that I'll be getting a vacation anytime soon. The way I see it, all of the hard work, self-sacrifice, money, time and energy that I put forth to help my child would be completely worth it if I knew that in the end that I was
  11. JT's Mom, Thank you so much for responding! My daughter is on both antibiotics twice a day and it would be a big help to give her both at the same time. I keep remembering a post I read quite a while back that was talking about the importance of not giving antibiotics 2 hours before or 2 hours after any other medicine. Waiting that amount of time is what's killing me. Giving her the Flagyl and Azith together will allow me to fit in the charcoal in the afternoon 2 1/2 hours after the antibiotics and 2 1/2 hours before her probiotics and anti-yeast med. I will check with her DAN to make
  12. Hello PhillyPA, I'm now going to show all of you how computer unsavvy I am. The way I found that thread on Dr T's advice on s. thermophilus was by typing in the word "yogurt" in the search bar at the top of the page. Then scroll down to tygertoo's post labeled Strep Thermophilus info from Dr. T.
  13. I'm going to take the plunge and see what happens. I'm glad to hear it doesn't seem to affect your son Vickie. I'll pray for the same on our end - this would make my life sooooo much easier!! Thanks everyone!
  14. Thanks for the responses everyone - I appreciate you trying to help me out. Vickie, what kind of yogurt and cheese do you use? I don't think my daughter will go much for milk either but I'm sure she'll want cheese and yogurt. I'm starting to think I might just have to try it out with the strep strain and see what happens. I was really hoping to find a yogurt that is organic with no additives or artificial flavors that doesn't contain the strep strain. I went to Mother's Market and every yogurt I picked up had it. If anyone finds a good quality yogurt or cheese that doesn't have the strai
  15. Sorry for bringing up a topic that have already been discussed at length but I was curious about where you all stand on this issue currently. My dd's DAN has told me to reintroduce dairy into her diet after running an ELISA allergy blood panel and finding out she supposedly has no issue with dairy. She hasn't had any dairy in almost 2 years now. I have been reading previous posts about this issue and keep coming back to Dr. T's warning about cheese and yogurt products containing s. thermophilus. I was so looking forward to putting a container of yogurt or a cheese stick in her lunchbox but
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