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tu4four

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Posts posted by tu4four

  1. tu4 -- what is she taking now? i went to the TACA meeting this weekend where 2 of the docs said that if you give a med and see a worsening and then give charcoal and get improvement, it's likely a herx.

    did you recently start her on something new to have the charcoal produce that?

    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. 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. So today I gave her the charcoal, the klonopin.

     

    The tight space really did start to agitate her and I gave her another anxiety med then. She slept almost the whole way and woke up when we arrived. More anxiety then and I gabe her more charcoal. Does this sound crazy?

     

    In the meantime, we have a couple of days to play in the snow before our appt, and I think I can keep her balanced with this mix until then. Whew! We made it!

  3. Also, have you considered Vistaril instead of Benedryl. Both are old antihistamines. Vistaril needs an Rx, but it has wayyyy better anti-anxiety properties than Benedryl along with the normal antihistamine properties. It doesn't interfere with other meds either. Worth a check.

    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.

  4. First, will she TAKE the med.

    Second, do you know how she will react to the med? I bring these two points up only because we have had paradoxical effects to so many psych meds, and taking meds has been a HUGE issue with an upset child. Anyway you can test it out if it is a new drug? My 2 cents from experience. Dawn

    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.

  5. 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 only wear one pair of pants---thin leggings with a big hole over the knee--one or two shirts, and occasionally crocs. We are going where it will be cold!

     

    Any ideas?

  6. 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 that again. I'm going to call today and see if they have the test results before our phone consult in 2 weeks. Maybe he will go ahead and start treating if it is positive.

  7. Find a new doctor!!!!

     

     

    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 could be babesia.

     

    All 3 of these disorders can cause rages. Strep usually doesn't (although I would still followup with the rapid plus a longer culture, and even if they come back negative, I would also get a blood test for ASO and AntiDNAse B, because the strep may elsewhere. Our kids don't clear infection like other people do, because of their autoimmune conditions, so to assume that she's cleared it because of 1 shot of bicillin is absurd. My DS has been on bicillin injections weekly (just decreased to every other week) for a year, and his ASO is not completely down.

     

    Find another doctor fast! You don't need to be wasting your time on people who just don't get it.

     

    We have had her tested for myco--her igm? was really high, I've never seen stretch marks on her. We've had her tested through labcorp for babesia and bartonella--both negative, but I know that testing isn't reliable. I do think that she probably has bartonella, but i couldn't prove it.

     

    However, I did just get confirmation that she, or someone, has strep. She has been raging this evening, of course, and 20 minutes ago, she came into our room telling me she was sorry--highly unusual for her these days. And soon she was saying that she couldn't sleep upstairs, it was too scary. Couldn't sleep in a room with a window, not our room, etc., everythng was scary to the point of shrieking. Sudden OCD which has only been happening when she, or someone else has strep. Might happen with other illnesses, too. Our family just seems to love strep, so it seems like it's always around.

  8. 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 was out of the room) that she was not able to function and is having rages, he smiled and said, yeah, but not for long, right? When I told him yes and that she pulled a knife out this am, he asked what was going on at the time.

     

    I need some chocolate!

  9. 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 having to have things a certain way....a certain spoon for yogurt or spits the yogurt in the potty, etc. I know that could just be being three, but having been down this road before, and having her with an almost identical medical background to this point, I am now very concerned about her.

     

    We saw a PANDAS doc who changed my dd11's antibiotic a week ago. And we are waiting on test results. And I feel like I should know what I should be asking for her, but I don't. And I am taking dd11 to a lyme doc in early april (who I have an appt for other kids for in aug). Frankly, I can't afford to take dd3 out to see dr. L or anybody like that, knowing that I also have to fly or drive a long way to treat lyme.

     

    DD11 has had some wonderful days lately but has also had some intense rages. They are coming back more frequently and for longer...as I expected. I wonder if this is just because we have to kick lyme's behind first? Maybe we should have waited to see the PANDAS doc, but she needed to have some help ASAP. Guess I'm just thinking maybe it's only stirring the pot until we treat lyme. BUT is there something I should be asking for from our local functional med doc (who believes in PANDAS and Lyme but does not have the experience to treat adequately)? I can't see waiting until August to get any treatment for my dd3 who continues to be infected with strep.

     

    Sorry, I rambled. Tired and overwhelmed.

  10. 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 swallowing study, an ultrasound and an MRI showed nothing. Got referred to a GI doc who did an upper endoscopy. Nothing. Referred me to a specialized GI doc who couldn't figure it out. One of the GI docs prescribed something to stopped muscle spasms, and this did seem to help the 2X that I thought I felt it starting. Then, after that initial period of 4-5 months, it went away, and I have never had another episode.

     

    I think, looking back, that it might have had something to do with parasites (yuck!) which surely don't go away on their own. I never saw anything, but all those symptoms seem to say that my body was trying to get rid of something.

     

    I understand your worry about the abx. I am thinking that the kind of pain that would go with damage from them might be more constant and not relieve after he goes to the bathroom? Just speculation....

     

    Hope he is rid of these soon!

  11. 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, and I tried to be consistent in giving her activated charcoal. Raging continued. Three days after we got back, I took all kids to the pedi to check for strep. One vomited a couple of times (the little one that we can't seem to clear), but other than that, symptoms were either mild or non-existent.

     

    All four were positive and received bicillin shots. By that afternoon/evening, she was not raging. Not yet sweet, but not raging. The next day, no raging, sweet. The next day, no raging, sweet. The next day no raging and sweet early on, but irritable by late afternoon and then raging again. I did one of those no-nos. I thought maybe the bicillin was diminishing from her system, and I gave her a 500 mg amoxicillan with her omnicef during the raging. 30 minutes later, sweet girl was back. Raging over. Reading books (like she hasn't done in ages) and laughing. And smiling. I haven't seen a smile from her in AGES.

     

    Like I said, I know this is not the end-all, be-all, but I am so happy because I haven't seen her at all in weeks. If you have any thoughts, I'd love to hear them...

     

    As for now, I'm dancing into the shower. And I'm smiling, too!

  12. 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. I guess I'm trying to be a cheapskate! ;)

  13. 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, confirmed kiddo for PANDAS and Lyme. I'm afraid I'm going to send my already overwhelmed husband over the edge.

  14. 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. We didn't swab in the ofc as he was giving her a new abx that would cover it anyway. So I gave her the omnicef as we left north texas, and when we got home 5 hours later, she had been screaming to make it stop in the car for at least 30 mins. She got out of the car and couldn't touch anything. Screaming, yelling at the top of her lungs. Couldn't get in the shower, got trapped in the bathroom because I shut the door behind me, and she couldn't touch the door. Couldn't put clothes on. We don't have such strong obvious OCD on a daily basis...lots of rages every day. Last time she had such strong, obvious OCD, her younger sibs tested positive for strep.

     

    Can one herx after only one dose? We gave her 2 activated charcoal capsules, and 30 minutes later she was laying on the couch watching tv and able to answer my question about a toothbrush. And she had clothes on.???????

     

    I have to get on a plane to a Colorado dr. with this girl in three weeks. Hope this greatly improves before then!

     

    Interested to hear your thoughts.

  15. 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 bathroom to spit it out and cries. Does this mean PANDAS if the strep won't clear, and what can I do to clear it? We have amoxicillin, cefdinir and now augmentin.

    Of course, my dd11 is out of control right now, and my ds7 is, too, but I don't know if these only because of strep. My thinking is jumbled, I know. But our appt in north Texas is tomorrow!!!!!

  16. 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 CHOOSING to be so irritable or to be unable to do anything I ask (although I do think she has a little bit of learned behavior going on sometimes, I'm just not sure when).

     

    What I have no idea about is how to handle that rage. I have three other children who are often targeted once she gets to that place. I have them go upstairs and lock themselves in the oldest's room or lock themselves in our bedroom, but she continues to rage and beat doors with heavy objects, tear things off of the walls, make holes in the walls, call all of us stupid, wish we were never born she hates us, why do we have to be her family, screaming bloody murder to get away from her, leave her alone...you get the picture. Gutteral (sp?) screams that, frankly, I'm surprised have not caused our neighbors to call the police. I cannot lock her in her own room to calm down because when I did that she managed to tear the door open and damage the frame to her door. I often restrain her, which only continues the rage, or often escalates it but does hold her in one place. But I can't do that all day or evening.

     

    Right now she is in the shower after having sprayed the entire bathroom with the shower head out of anger and trying to get me. If I walk back in there, she is going to issue another string of insults and yell and scream some more. I told her that she would have to dry up the bathroom, but really....fat chance of that happening. And, as you know, no amount of, if this, then that will work to motivate her.

     

    So. How do you handle this kind of behavior?

  17. 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 same thing as when you are pregnant and all of the sudden the whole world seems to be pregnant, too, because you are so focused on your case....

  18. 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). In my daughter's class of 12 kids, 3 of them were severely affected with SOMETHING. Turns out 2 of us definitely have PANDAS/Lyme/Other stuff, and the other hasn't been tested. Her mother thinks that she has Asperger's.

    And so many people that I have found online also have kids the same age. Can't be that 10 or 11 is when it hits, because all of us that I know have had issues for a while. Wondering if kids in that age group got certain lots of vaccines, something...... Hmmmm......

     

    And on a side note, DD currently seems bright-eyed and happy a lot of the time, but can easily fly into a rage when she has to do something that requires executive functioning skills....like homework or completing a chore. Or if something is unexpected. Like yesterday, her sister cleaned her room because it was an absolute disaster, and she came unglued and destroyed our bedroom door by beating it with a heavy ride-on toy. If I just let her play all day and don't change anything, she is happy as a clam right now. Very immature, sometimes manic, but happy. At this point, her school is telling me that she is going to fail 5th grade if things continue this way. Not because she is failing the work, but because she isn't completing it in class, can't get any of it done at home and is missing days here and there due to not being able to get going or having a rage before school and not being able to get herself back together, etc.

     

    Maybe we can all fall asleep until our appt. a week from tomorrow. :o)

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