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aba

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Everything posted by aba

  1. I'm curious about this too, as our dr. recommended this one for DD's mycoplasma: https://www.researchednutritionals.com/store/item.cfm?code=CRN116
  2. DD also does not have any tics. However, I hear a lot of sensory-related issues in what your daughter is saying, in addition to the obvious obsessiveness of it. The licking, kicking, wiping and scratching, rubbing -- that's all sensory stuff. Sensory issues are a big part of DD's overall picture. During a flare, our DD says a lot of the same wierd things that yours is saying. Like she has to "confess" everything that enters her head. And correct herself when she mispronounces, etc. Just thoughts that she obviously cannot control. I would definitely get bw done as soon as you can. It's very good that you are on top of this early. That's really in your favor.
  3. Laurensmom - Yes, what you said, about the social isolation, is one of the most difficult aspects to deal with. Other, more "outward" disorders get far more sympathy and compassion from everyone, even strangers, than the child whose illness is manifest by appearing to be an undisciplined brat. What I **try** to take away from all this is that I have REALLY learned compassion and patience with other people, especially other children. I used to have a real opinion about children's behavior (the same way that some people now have toward my own ). But we are learning that there is often SO MUCH more going on behind the scenes (in the brain) that we can't see. You never know when someone is truly suffering. How much better to offer a word of support and kindness. I tell DD that her "issues" as we call them, will help her to one day be a more compassionate individual too.
  4. beerae22 -- Thanks for the encouragement. All the success stories on this board give me hope that one day these horrid days will be just a very bad memory. surfmom -- I have used the exact term "parallel universe" to describe this. And it really is -- people who don't deal with it have no idea is even exists! And we have also considered the dog thing -- dogs are animals after all and they all have their limit and we would hate for something bad to happen. We are glad the dog "takes the high road" and knows when to leave her alone. And it's so sweet to see them together again after the storm passes. Even she seems glad to have her back .
  5. Thanks . Sad thing is, each time this happens, the dog does try to comfort her (because normally they are buddies ) but when she is raging, she pushes the dog away and yells at her :(. Which, by the way, she basically does to us as well.
  6. I'm not in any way making light of the situation, because we have been in tears for much of the past few months as DD's symptoms seem to intensify. But it struck me as sickly humorous when I noticed that our dog will go hide when she gets really bad with the raging, screaming, etc... An ANIMAL even notices that this behavior is not normal and is scared of a little girl :( . Sometimes you laugh to keep from crying (and totally losing it!).... Anyone else have anecdotes that only parents here would understand??
  7. Someone here mentioned that "we were never 100% normal..." or something like that. It seems as if there is a subset of children, due to genetics or whatever, that will be susceptible to things like PANDAS, PANS, autism, vaccine damage, aspergers, etc. DD was always high needs, a horrible sleeper, from day 1, had a bad reaction to her 8 week vax (which she appeared to recover from), and was always sensitive to light. But we still considered her within the boundaries of "normal" until that one day when she flipped. So, in essence, a perfect storm was brewing. So it seems that, for those kids, getting "recovered" may not ever mean that they are like that "perfectly" neurotypical child, but that they are back to the point where they were before they fell off the cliff, maybe more high needs and requiring more attention, but definitely manageable and not interfering with a "normal" life.
  8. Thanks. I did run them both on drugs.com just to see exactly what they were.
  9. On top of everything, she has puberty thrown in the mix now. I wasn't a PANS kid, but for me, age 12-16 was rough, even for my mom to deal with me. Especially with the fixations you mentioned, it sounds like maybe the hormones are playing a part? Maybe as she gets older, that aspect will level out some. I hope so, anyway...
  10. Okay thanks, she will be on clindamycin and rifampin. Very high mycoplasma numbers.
  11. Anxiety (separation anxiety) is pretty big too. As well as borderline depression for a small child.
  12. How do you use the oils? In a carrier oil? Do you have a link for the fb page? Her symptoms have always been mainly rage (often diagnosed as ODD) and very bad sensory issues. All senses are heightened often to the point of pain for her.
  13. Hi, DD's titers for mycoplasma are: IgG @ 2.25 and IgM @ 4181. Her dr. says it's the second highest he has ever seen :(. She has been dealing with these issues since Nov. 2009, and this is her first bw, so we don't have a pattern for those numbers yet, but I'm trying not to freak out with how high they are. He is treating with clindamycin and rifampin. He also suggested the supplement Transfer Factor PlasMyc. I am currently researching the following supplements to possibly add or alternate with the abx. I have anecdotally noted that she seems to calm down when she has lots of garlic (she loves garlic!), so I am looking at a pill form....again, I'm just at the beginning stages of examining all this stuff I have pulled from various forums/sites: colloidal silver diatomaceous earth garlic supplement oil of oregano olive leaf
  14. Thanks! I read something in passing that minerals can affect absorption of antibiotics, and should be avoided? Anyone else come across this?
  15. I've been reading that you really need to support detox during antibiotic treatment in order to hopefully avoid a herx reaction, but also just to help flush the system and allow the abx to work. Drinking lots of water, clay baths, epsom salt baths, etc. What else?
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