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Everything posted by landamom

  1. Hi, I was wondering if anyone uses Nystain while on long term abx? I believe it is for yeast overgrowth mainly but wasn't sure if it can be used to try and prevent C. Diff also. Has anyone experienced side effect on Nystain in PANDAS kids? Thanks!
  2. Well really it should be spaced 12 hours apart but if that means having to wake the child up, then I wouldn't do that. But if you can do say 8 am and 8 pm then you should. Yes, probiotics no less then two hours away from abx. Did they actually mix a 14 day does for you? Because that would be silly of them... augmentin has a 10 day shelf life even in the fridge. Same with the Zithromax. When we get our ten day supplies of Zithromax, I always have them give me the last two bottles unmixed otherwise you run the risk of it going bad. Just keep watch, if you see improvement in the next few day and
  3. We have been doing the combo of Augmentin and Zithromax... Augmentin for us took about 10 days or so to start seeing improvement. But thank God, this has been the first thing that has made a difference since we started this process. Hang in there and make sure to be consistent with the dosages... Augmentin has short half life so it's important to space the doses out properly. Also make sure to be giving probiotics with them best wishes!!
  4. Please try to get a phone consult with Dr. k or Dr T ASAP! That way you can get blood work and additional abx as needed. I'm so sorry you are having to deal with this...
  5. Thanks to both of you for responding. Was wondering if either of you saw any side effects while your children were on their anti virals?
  6. Hello, I was wondering if anyone has tried an antiviral during pandas treatment, and if so did it seem to work? My dd has very high Coxsackie titers and Dr. T suggested adding Acyclovir to her abx treatment. He said that in many cases when a child is on an antiviral the titers come down, especially when used for Coxsackie, even though it isn't clear if it's a current or past infection. I'm more wondering if there is a reduction in PANDAs symptoms along with the titer change. I don't want to add it just for the sake of decreasing the numbers, but if it means the virus can actually be causing s
  7. Our DD also had frequent urination when this all started... That is much better now but it is a very commonly reported symptom among the PANDAS kids. We also apply lidocaine cream on her arm 1 hour or so before any lab work as she is very nervous about needles. It's so sadly ironic that our anxious kids have to get so many blood tests! Hang in there - you're on the right path!!!
  8. I was wondering this same thing this morning! Our dd has been slightly off the past two days and our bottle is technically past it's date. I guess you do have to be vigilant about shaking etc. and the date actually does matter
  9. This is so upsetting. Imagine trying to take a child away from their home because their parents want to get them help. And then what? They go into foster care with a family they don't know ... And this is going to be beneficial to the child's mental health??? Good Lord.
  10. I would second the phone consult with Dr. T. At the very least he can switch your abx if they don't seem to be working anymore. My understanding of IvIg is that it will not be completely effective if there is still an underlying infection that has not been treated enough. If you have seen improvements in the past with abx then you already know they can help - it sounds like you may need a different one at this point. Plus he will send you for a ton of other blood work which will be very helpful. Best luck!
  11. First, let me just say that were it not for this forum, I would be a nut case with how long it takes to get answers from the doctors!! So thank you in advance! I just got my DDs most recent blood work results that were ordered by Dr. T. He did a ton of different tests ( I think most of his patients get this list done when they first start working with him). One of the tests was the IgG subclasses. She is very low on IgG 1 and 2 and low for the overall IgG. IgM, IgE, IgA were all normal. I'm wondering what this means and have any of you dealt with this before? Does it automatically mean
  12. Thanks everyone for the great responses! - we had no issues with zinc. She does take a multi but nothing with excess zinc other then that - these tests were done through another doc, not our pediatrician so she was looking at someone else's order, so I can't blame her for not knowing what it meant - the dr. that ordered the tests I will never take my DD back to because he is a monster - Dr. T just did a bunch of labs and he did tested for ceruloplasmin which was normal We have an aptmt. with Dr. B next week so I will also ask them and get back to you all with what they report!!
  13. Hi all, My DD had some blood work done that showed (among other things) that her copper level was very low. Have any of you seen this before and do you know what that can mean? We went over the labs with our pediatrician and she didn't know what it meant. From googling I can see that Copper can relate to brain function, just not really sure how or what it can cause when it's low. Thanks!
  14. Btw the ingredient to look for is: S thermophilus
  15. Did you check the probiotics for Strep?? Many probiotics with multiple strains contain strep in them!! We had the same issue until Dr. T asked what probiotic we were using and told us what to look for. Had no idea that strep was in many of them, but it was in the one we were using. It was a very expensive one with 100 plus billion strains per dose. You'll have to get a probiotic with much less strains in it but Whole Foods has two good children's probiotics that are strep free. Best of luck!!
  16. EmilyK - yes diet is definitely one way to go... We follow an almost identical diet to what you are speaking of. our biggest and most recent change has been to go gluten free and dairy free with our DD. I can't say I've seen much of a change in the past month, but I know from personal experience it can't hurt! LLM - thanks for your list! I knew you'd have a bunch of suggestion! I have yet to go the Motrin route, so I am considering it, just worried about the liver enzymes. Any idea if doing resveratrol and Motrin at the same time is a bad idea? We may need to try the steroid burst to s
  17. Hello, We obviously talk a lot about symptoms on this forum and abx treatment and if we see improvement or not... But my head keeps going in circles trying to figure out how to approach recovery for my DD. Please bear with me as I think out loud but I need to know if I'm seeing all of this correctly! In very simple terms, PANDAS/PITAND has a trigger, some kind of infection, that ultimately causes the autoimmune/inflammatory response. I thought it was interesting to listen to Dr. T on strep monster say that most cases there have been signs in the past of PANDAS but that he "big episode
  18. I don't know of this helps at all, but one motor tic that our DD (also 7) has sounds very similar... She will suck in her stomach and then let it out. It looks like she is arching her back but if you see her doing it without clothes on, it's really her stomach that's moving. We talked to Dr. T recently and mentioned it and he said that's actually a VERY common tic among PANDAS kids ... Best of luck on Friday!
  19. The OP also referred to the Dr. as He (his) so it sounds like the other Dr. l that's been brought up.
  20. Hi! I was wondering what the abx trial is?
  21. that's great news! All the best for continued healing-
  22. Hello everyone, OK I am in a very frustrating spot right now... And could really use some words of wisdom! My DD has been on zithromax for the past month-currently the infection we know she has and have been trying to fight is mycoplasma. We had an appointment with Dr. T 10 days ago and he said he wanted to do additional bloodwork to check for various things - coxsackie, low strep responder among others. He also wanted to see about changing her abx or continuing her on the zithromax. Well, as I said it's been 10 days and we have heard NOTHING from Dr. T. We have called and emailed and we
  23. We also spoke to Dr. T recently and he mentioned that coxsackie is a trigger for PANS. He also talked about it briefly on his recent PPN call in blog. So, I know HE believes that it is, but not sure if anyone else does. I hope you get replies from other experienced parents!!
  24. Thanks for the replies! Philamom, yes 4 points out of range - her level was 44. Obviously, your DD was much more elevated... Glad to hear they are back to normal!
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