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Everything posted by landamom

  1. Chances are what you are talking about is pin worms, a very common childhood ailment. They are little worms that hang out around the rectum and itch like crazy! They usually are treated very quickly with a prescription. Most kids get them from getting dirt under their nails and then ingesting the tiny eggs. They aren't a big deal, but ironically I know a pandas child whose parents thought he had a rectal tic... Turned out it was pin worms
  2. I've of course seen many a post on using Motrin to decrease pandas flares and issues. If it doesn't seem to do anything, does that mean it isn't really PANDAS? And honestly, I can't remember if we ever tried Motrin specifically, my husband keeps buying children's Advil! I'm not sure if there would be a difference. I always see everyone specifically mention Motrin, not ibuprofen. Thank you!
  3. Thank you for everyone's response! I'm sure that probiotics are not solely responsible for her tics... They have been the main symptom since the beginning, but they see to get worse from taking certain things. IDK. I feel Ike I am guessing at most of this. Nicklemama - do you think the Sachs b.contributed to the yeast sensitivity? I hope he is doing well now!
  4. Hello, my dd8 is on two abx daily - Augmentin and Zithromax. I am convinced that probiotics are making her tics worse, even thought they are strep-free, so we have stopped them the past few days. I don't like the idea of her being on so much abx without something beneficial... Has anyone tried using Florastor/Sachs B on a regular basis for gut health? Are there any other alternatives to lab made probiotics that would be helpful (fermented foods, etc?) that you've seen results with? Thanks in advance!
  5. Thanks Missmom! I have a stool kit sitting here... Maybe it's worth taking a sample anyway! I hope the Flagyl works for you... I have heard about good results from it.
  6. I was wondering if anyone has purchased this book and if it is worth it? I am starting to feel like it is hopeless. Would love any feedback- thank you!
  7. I'm bumping this in hopes of finding that out too... Is it possible to have c diff without all the diarrhea? My daughters tics have ramped up and I'm at a loss. Thanks-
  8. Nancy, this does sound amazing... Almost too good to be true! I wish you and your daughter the best. Please keep us posted. I was wondering... You said 'good bye vocal tics'. Have you been told that it specifically can help with that? My daughter has vocal tics and lately they have been so bad. I am not sure what to do at this point. Also, how can you tell if the donor has a healthy gut? Are there tests for it? Thanks!
  9. Thank you all of you - you've given me lots to consider and try! I really appreciate the time you all took to give your suggestions. As always, you guys are so helpful and generous with your time. Thanks
  10. Thanks! That's interesting... So what is the idea behind Pepcid working? I thought it was an antacid? I get benydryl, I'm assuming that it just makes them subdued? Also is something like Xanax an SSRI?
  11. Hello all. My dd8 is on daily Zithromax and Augmentin. Her main symptoms are vocal and motor tics, but lately she has been having a lot of anxiety. She is saying things like she can't stop worrying about dieing. I don't know what to do for her. We are awaiting preapproval for IVIG but who knows when/if we will get that and even when we do, Dr. Bs office is already booking in February. Do any of you use any anti anxiety meds, along with the abx to help with this? I am not the kind to "cover up" symptoms... I want to treat whatever we can, but I am at a loss and hate to know that she is feeling
  12. Hayley, I'm happy to hear that IvIg went well and that your dd seems to be having an improvement... An improvement so soon after IvIg seems to be a good sign, I would think. I feel like from what ive read that a lot of kids take a while to show any improvement at all after IvIg. I was wondering if your dr. had been able to explain to you why the "turning back of pages" even occurs? I asked about this very issue today when we had a call with Dr. Bs office and they basically couldn't answer it. I am going to start a new thread about this because I think it's an important issue and it seems that
  13. Hey Laura, I found this product and was wondering if it sounds good to you? I saw that you use a liquid 5-MTHFR and the pill form of b12. My dd is so picky and won't take anything dissolved from a capsule so I thought this combo liquid might work? Thanks for your thoughts! http://www.seekinghealth.com/liposomal-b12.html
  14. This is good information. My dd is also compound hetero for those two mutations. My problem is that she will not take pills. Do any of you have suggestions for supplements that are liquid? I have a methylb12 that is liquid but my understanding is that should not be taken alone? Thank you.
  15. Thanks, Kathy. My daughter is not on any immunosuppressants because she has had Lyme. She's just on abx, an antiviral, and probiotics. Although I would imagine some of the kids on the board may be on both steroids and Florastor. They are both pretty popular treatments.
  16. Thanks for updating! Glad to hear you've had such improvement! Just started on Acyclovir today. We're also still on Zithromax and amox but she has plateaued or gotten worse again so I feel they are no longer working. I'm willing to give an antiviral a go at this point event though we can't tell if the Coxsackie is old or new. I was wondering what dosage your son is on? We are supposed to do two tsp. 2x day. Thanks-
  17. Ok thanks! How often do you do the bath and how long does she stay in?
  18. My dd had been having pretty bad diarrhea for several days. As she has been on two different abx for the past four months, I have been concerned about c diff or some other gut issue. I decided to start her on Florastor Sachs. B and within a few days her diarrhea has stopped and its gone back to normal, if not a little harder. Could this actually be from the Florastor helping things? Or am I nuts
  19. Hello, I'm trying to begin some detox ideas for my dd. Do any of you use Epsom salt baths for your kids? And if so are their any risks? My daughter is 8. Thanks!
  20. Hello, I was bumping this post in hopes of getting updates from those using Valtrex or Acyclovir. How are the kids doing so far? We are considering starting acyclovir for Coxsackie. Thanks!
  21. If its PR you will find out for sure as its quite distinctive... It's also referred to as a Christmas tree rash because of the shape it takes. Good luck today!
  22. I picked up some liquid mb12 for my dd8 yesterday and have not started her on it yet. I was wondering if there is any advice for how to start ... low dosage, anything to look for etc? She is PANS but also has compound hetero MTHFR gene mutation. Thank you!
  23. Hi all, I wanted to try giving my daughter OLE. I got this brand at the Vitamin Shoppe because it was the only liquid... My 8 yo daughter can't take capsules/pills and getting her to take any powder mixed in anything is so exhausting. So I always try to find a liquid option. Being that I am new to OLE, I wasn't sure if this is ok to use as it seems to have other things in it and not just olive leaf extract. My dd's main issues are tics and I worry that introducing extra stuff will set her off. Would love to hear if others have tried this kind? Thank you!
  24. At least making the appointment won't cost you anything and then it buys you some time to see what happens on the job front. They don't ask for a deposit the way our first LLMD did. (That should have been the first sign for us but that's another story...) I think we all understand what it's like with the money situation so don't beat yourself up over it! You're doing the right thing-
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