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Everything posted by tu4four

  1. Yes, that is my thinking, too. We have seen this happen when we started cefdinir. However, she was off of all meds....makes me think that there is something like yeast constantly producing toxins that the charcoal can mop up . And yeast has always been an issue for her.
  2. Anybody treat for this? My daughter had low levels, and I read that enough of this aids in detoxing heavy metals. Not ready for heavy metal detox, but wondering if her low level is responsible for a build-up.
  3. Thank you for all of your suggestions. You all really helped calm my worries and gave me an action plan. I ended up asking for vistaril from our pandas doc but there was some confusion, apparently and they never did call it in. I looked for burbur at our health food store but I will have to order that. I did end up getting a valerian root mix and 5htp. I think both of those calmed her somewhat but not really enough. What did actually help her a lot was 2 activated charcoal caps. She was like Jekyll and Hyde and this was like the magic potion that would bring her back. Short-lived.
  4. I haven't heard of Vistaril but will see if I can get her PANDAS doc to write an rx for this. We definitely need the way better anti-anxiety stuff. I am also planning on using this for bedtime as I have not been able to get her to go to bed, and when we went to the PANDAS doc, she could not handle the evening and raged until 2 a.m. We use melatonin, but at this point, it doesn't seem to be working anymore.
  5. Good points. She is very oppositional, but I have been able to get her to take it. We have tried it 3 times now to get the dose right, and it does seem to work, but it is short-lived.
  6. Our Lyme appt is coming up in a few days, and we'll be getting on a plane. However, my dd11 is raging constantly and cannot stand anyone touching her or being confined in tight spaces. Perfect conditions for a plane ride! I have an anti-anxiety med that I am planning to give her about 15 mins before we go through security. Then the flight is 4 hours with 1 stop (arghhhhh!). Her med is fairly short-lived, and I am bringing some Benadryl for any break-through irritability. However, I feel like I might need another back-up....and I welcome any other ideas!!! In addition, she can now
  7. We are in Texas. We are seeing a Lyme dr. in Colorado in early April. He's not one that I see mentioned here, but my friend who has a daughter with identical symptoms saw him and has had a lot of success. I'm hoping that I can get her on the plane and manage her until we get there....and then back again. No, mycoP is not being treated. We found that high number a couple of years ago with her pedi who said she couldn't tell if that was an old infection or a current one and wouldn't treat because of that. We just saw a doc in northern Texas almost 2 weeks ago, and he tested for all of
  8. Ditto, ditto! What an arrogant ****! Also, if your daughter is raging, I would be also testing for mycoplasma pneumonia, bartonella and babesia. Keep in mind, though that bart and babesia, like lyme, have a very high rate of false negatives, so you may need an LLMD if you suspect it. Does she have a dry cough, chest pain, or salty tasting sputum (all symptoms of mycoP). Does she have a rash that looks like reddish/purple stretch marks (or cat scratches) on her torso, arms chest, back or legs? This could be bartonella. Does he have elevated liver enzymes, enlarged spleen? This cou
  9. Is this true? Today the dr told me he wouldn't do the rapid strep again on my kiddos because they just had the bicollin shot a week ago today, and something about a biochemical reaction could cause a false positive. I have never heard of this. I have four kids who cannot seem to clear strep and at least one who is definitely PANDAS. We don't have the usual symptoms and are sometimes completely without symptoms, which is why I wanted a rapid strep test. My diagnosed PANDAS daughter is raging and super-irritable again, and I want to make sure this is gone. When I told the dr (dd wa
  10. Hi, everyone! I do not know what I would do without your wisdom and presence as we continue to struggle day by day. My dd11 is our mainly affected child, and we have been putting all of our time and energy into getting her well right now as my other three children have seemed to be going along fine (for the most part). However, my 3 year old, who has now had strep for 9 weeks (at least) that will not completely clear after 4 antibiotics, is suddenly super-clingy...a la separation anxiety. She is super whiny and difficult to motivate to do anything. I believe I have seen OCD in her in havi
  11. A couple of years ago before I knew anything about PANDAS or Lyme being part of our picture, I started developing these horrible stomach aches. It felt like a fist was pushing as hard as it could right under my sternum. I think it was the most intense pain that I have ever felt. Then I would have a big bout of diarrhea (sorry, TMI!) and then I would start vomiting. Every time. The same order. Once the stomach ache came on, I knew the sequence. It was so bad that I had to go to the ER every time. Doctors were baffled. Thought it was my gall bladder, but all tests, including a swall
  12. I didn't know that! A happy accident!
  13. @Pandasphilly--no, we don't have plans to continue the shots. Not really sure where we'll go from here, but we have an appt with a Lyme doc in early April.
  14. @eamom---absolutely to clearing this siblings! The dr didn't really want to recheck them, but we have to.
  15. Just wanted to let you know what was happening with my girl who has been raging every day almost constantly. Right now.....SHE'S NOT!!!!! I am sure that this will change as we've only just begun treatment, but any day around my house where my girl is actually SWEET again???? That day is a happy, dancing day!!! This is what happened. We came back from seeing the doc in North Texas a week ago. Raging was at a fever pitch. Doc switched her to omnicef from azithromycin...saw an almost immediate flare of OCD---raging continued. Every day. OCD flare only lasted that first day,
  16. No, they don't want to retest her; I have to push to test. They'll keep telling me that she is on or has just finished an antibiotic, and/or she doesn't look like strep. The last time they told me that, I took her to another doc the next day, and sure enough she was positive. At this point, I think they may continue to test if I ask given strange or absent symptoms. However, I am now thinking that she really needs to se an immunologist...maybe the one we have in common! Or maybe I need to just try to treat Lyme first. I was trying to wait until I could get a good feel about our Lyme doc.
  17. Here we are again with my dd3 (not diagnosed w PANDAS but suspect) having her 4th positive rapid strep in 8 weeks. Broke the bank and took my other 3 kids in as well. All positive. They all got a bicullin shot. We just came back from a PANDAS doc in north Texas with my dd11 who does have PANDAS. We all have Lyme, too, and I am taking her to a Lyme doc in early April. I think I'm just feeling overwhelmed with the expense of it all. It seems like we have really deficient immune systems, and I cannot imagine the expense of treating us all. Right now we are just treating our raging, conf
  18. We made it home from our appt in north Texas!!! Dr. spent a lot of time with us, did not rush us and looked at the whole picture. DD kicked, screamed and put on quite a show during the blood draw (we had to hold her down), but they were not ruffled. I love them! So here's my question today....can one herx after 1 dose of a new abx? I expected to see something a week or so out. However, we got an rx for omnicef and filled it before we got on the road to come home. DD was already complaining of a stomach ache and had a warm head, and I suspected strep since litte dd has it right now.
  19. Oops...sorry...I didn't proofread my subject. Embarrassing.... :/
  20. This feels like a silly question and one that I should know the answer to, but I want to make sure. My dd11 is the severely affected one out of my four children,but I suspect that at least 3 out of 4 have PANDAS. 4 out of 4 have Lyme. So here's the thing. My dd3 has had strep 3 times in the past 6 weeks. Or perhaps, it has just never cleared. This is what I think because she has continued to have a low-grade fever off and on whether on abx or not. I have seen what I believe to be OCD--wants to eat from a certai. Spoon. And if I convince her to take a bite off of another, she runs to the
  21. It's me, again. Muddling through another rage. I have the Explosive Child and have read through that, although it has been a little while and maybe I am forgetting something. But how do you handle raging behavior when it is aggressive and targeted? It's not like we can just stay out of her way. And it's really not like we can avoid behaviors that send her into a rage. As I mentioned earlier, asking dd to do anything from homework to a shower brings on a pretty wild and horrid, but predictable, rage. I get that she cannot wrap her mind around transition right now and that she is not CHOO
  22. Oh, my heart aches for our kids. So many people don't get it. And even though I get it, I am often at a loss as to how to handle the behaviors. I know that my girl is in agony at times. Yes, our issues started much earlier. She was quirky when she was younger, had huge separation anxiety and what I sometimes thought might be OCD, but she was just so stinkin' smart and loving--I just thought quirky went with that. Most of the people I have know who had kids with issues that were the same age....their issues started between 3 and 5 as well. It's just....odd. But maybe it's just the
  23. This may just be a shot in the dark or me grasping at straws as we wait for our appt. in Plano and my daughter continues daily rages and tearing our house down, but.....it seems like there are a LOT of PANDAS kids my dd's age. She just turned 11. I know that there are kids of all ages affected by this, and I have 3 other children that are positive for Lyme, and I suspect PANDAS in at least 2 of them. BUT.....DD11 is by far the most severely affected. And I guess I am just wondering if any of you have found that to be the case (or perhaps I am truly just desperate, which is a possibility).
  24. Hmmmm. Thanks. Another piece of the puzzle to think about.
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