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tu4four

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Everything posted by tu4four

  1. I posted last week about my 4 year old being sick--negative strep test but warm to me, suddenly afraid to go into another room alone, clingy whiny, 2 pandas sibs. So I got a letter in the mail yesterday telling me the results of the culture. She has a staph infection. I have looked around a little bit, and there seems to be a question about whether or not staph could trigger PANDAS flares. But I thought I had read that it could before. And I have no doubt that it can as dd; had clear PANDAS symptoms just like when her sister (12) was this age. The nurse practitioner we saw was
  2. It is hard for my kids to get rid of strep. And they don't always have symptoms. I don't know if we are more susceptible to certain kinds that don't respond to the most commonly used abx, but at one point my dd3 ran through amox il, augmentin, zithro, and finally cleared after a bicillin shot. Hmmmm
  3. Thanks for that info. Yes, I am very interested in buhner and would love to hear more. I am glad to hear that your kiddo is doing better. I have wondered about you; I haven't been on here much lately. I am having a bit of a time getting her to take liquid Advil, so I don't think would hold an herbal tincture in her mouth for a long time or let it dribble down her throat. Oddly enough, her throat doesn't appear to be that red. I am assuming that it is somewhere else....not so easily testable....because I know that she has had t in the past and been unable to get clear of it.
  4. I have been on this forum in a panic many times over my dd12 who has been diagnosed with PANDAS, had 4 years of psych meds, treatment for Lyme, rec for IVIG, but denied by insurance. Her siblings all have some symptoms of the same, though none nearly as bad as dd12. The good news....dd12 is doing much better right now. Not perfect, but on a very low dose of psych med and lots of fish oil, etc. When we last saw our doc, he gave us new things to help rebuild her gut, etc. And she has the c677 gene defect. I am now considering supplementing her with the important stuff through many, man
  5. Wow. Amazing. At this point, a year later, I am wondering if the garlic stirred up a parasite issue in our girl. Hmmmmm.
  6. Just have to add in my 2 cents....I hate, hate, hate psych drugs---and we have used a boatload of them--but at times, it has been the only thing to give my family some relief. Risperdal was rough on my girl and actually ramped up her OCD.....we took her off of this ASAP, but abilify has been a lifesaver for us at times. Without abx or other apps to trear the underlying issue, we always ended up having to increase the med and/or add other heavy meds. So not treating the real issue is not an option, but psych meds have certainly helped us through some dark times.
  7. Just have to add in my 2 cents....I hate, hate, hate psych drugs---and we have used a boatload of them--but at times, it has been the only thing to give my family some relief. Risperdal was rough on my girl and actually ramped up her OCD.....we took her off of this ASAP, but abilify has been a lifesaver for us at times. Without abx or other apps to trear the underlying issue, we always ended up having to increase the med and/or add other heavy meds. So not treating the real issue is not an option, but psych meds have certainly helped us through some dark times.
  8. Good idea about the supplements. Why did I not think that? She was prescribed vyvanse 70 mg. yes, she is still taking it.
  9. It's been a while since I have been on here. I thought we might be seeing a little light, and I had ignored my other children and homeschooling due to constant research and putting out fires all day long, so I had to take a break. But here we still are. We have a long story, I apologize--i know a lot of you have read it. i tried to write what he bottom l e was, but that's the real million dollar quesstion, isn't it? if we knew what he bottom line was, maybe we'd have a better ahot at fixing it. My dd12 started with symptoms at 4. She had lots of strep, and we have a PANDAS dia
  10. Yes, I have read of a connection between OCD and zinc deficiency.
  11. I always hear flow powerful a-Bart and a-bab are---but I have never seen any kind of reaction. No herx, no improvement---she took 15 drops am and 15 drops pm for a couple of months.....any thoughts?
  12. I know a lot of people have had bad experiences with abilify, but for us it has been a life saver at times....but not in conjunction with other psych drugs....we've tried so hard to be off of all of those kinds of meds, but after almost a year off of most of it, we had to go back for a low dose. And I have to say that our dd11 does not always respond the same way....I think it's because this gunk that's really causing all of this is constantly changing. We have also recently discovered that vyvanse, an ADHD med, totally improves her state and allows her to actually function, do schoolwork an
  13. My ds8 has had some ups and downs over the past 6 months. I am having him evaluated today for dyslexia. And in my mind there is no need to have him evaluated for ADHD (as in, he can't focus or remember to save his life and is constantly interrupting, etc) Wondering if you have seen a fairly swift improvement in dyslexic and/or ADHD behaviors with treatment for lyme/babesia/Bart I am sure that he got all of this in utero as his siblings, dad and I are all positive for lyme. And he started out coloring upside down and looking at books that way. It hasn't been a sudden onset of this
  14. My ds8 has had some ups and downs over the past 6 months. I am having him evaluated today for dyslexia. And in my mind there is no need to have him evaluated for ADHD (as in, he can't focus or remember to save his life and is constantly interrupting, etc) Wondering if you have seen a fairly swift improvement in dyslexic and/or ADHD behaviors with treatment for lyme/babesia/Bart I am sure that he got all of this in utero as his siblings, dad and I are all positive for lyme. And he started out coloring upside down and looking at books that way. It hasn't been a sudden onset of this
  15. I think I have ruined another doc relationship today. I came in to see her for a pain in my side, and I really did plan to be very tight-lipped and not mention lyme (I am positive, too) or PANDAS. But apparently a couple of years ago i mentioned Lyme and my irregular, wacky heartbeat to her partner so it was right there on the record and she asked me about it. She asked me if I was treating it, like she believed me, and I just couldn't help myself. I told her about my kids and PANDAS (which she said she had heard of) and I ended up telling her all about our shameful (although I didn't
  16. So sorry. My daughter has been on many, many psych meds over the course of four years. Most of them were horrible,, especially the antidepressant. The one thing that did help quite a bit at times and at other times not so much (and she is back on a 7.5 mg / day) was Abilify. Clonipin did absolutely nothing for her. I will say that my son, who has some of the same issues but has just recently gotten almost to her level of rage and irritability, has taken 12 drops of grapefruit seed extract morning and night with some significant improvement at times. Right now it 's not working as w
  17. I don't have any experience with that med. I read a little about it on the web just now, but with no experience of my own? I know that Diflucan is one of the big kickers for yeast in terms of Rx meds. But it can be hard on the liver, so it's a good idea to use milk thistle or some other liver support at the same time. Also, I often use 2 stool softeners in the a.m, 1 in the pm for my kids and at the same time, I give them up to 1000 mg mag citrate a.m and p.m. So maybe you could try increasing your mag a little and adding a stool softener or two. Good luck!
  18. Wow, from reading your tagline, our girls look so similar. I hear great things about GSE and Oil of Oregano. We have used Oil of Oregano topically for pain, but I understand that it is really good and really potent....We have used GSE recently with my ds8....10-12 drops in a.m. and same in p.m. For a while there, I saw a significant difference in him. Maybe I wasn't as consistent as I should have been...were were very busy, and things started to slip. I don't know if GSE was helping a yeast issue, which we all battle in my family, or if it was working as an anti-viral, etc.....If it w
  19. We' be had this issue quite a bit--even to the point of er visits and a couple of hospital admissions. I think yeast has been a big player for us---maybe you could Ty something g to kill yeast as well as putting the good bacteria back. We have used nystatin and diflucan with good success, but I understand that grapefruit seed extract works really well to kill yeast--we ha used it for something else. I think another big player related to constipation in our family has also been parasites. My daughter took para-a for a while....I'm not certain that I have the best anti-parasitic protocol
  20. We have a nephew or two with sensory issues and attention, rage issues like my daughter. Also on that side a late 20'a niece who had overnight onset of bipolar-like symptoms.
  21. Apparently it's not a standard, but it can be done. Our neuro said the results of that part will be back a month after the test.
  22. Are lumbar punctures only ordered by neuros? We have worked with a couple of PANDAS immunologists, but the mainstream neuro ordered our lumbar puncture. I need to find somebody who will specifically look for O bands. My daughter has to have another LP done in 3 months anyway. We live in Texas. Thanks
  23. I agree that something is off. Especially since every time I talked to anyone....the nurses, the doctor who was to do the LP, the neuro, the scheduling people, I told them that I wanted to be sure that we were testing for this. This is the initial report, but the only other two parts that he is waiting for are the neurotransmitter levels and testing for NMDA. The good part of this, I guess, is that she HAS to have another LP in three months, and I might as well take her to a PANDAS neuro.....guess I was wrong about that when I said that a mainstream neuro couldn't argue with the
  24. MRI was fine, clear. Lumbar puncture showed clear fluid, nothing remarkable. Protein, glucose, etc all within normal limits. I had repeatedly asked him and everyone I came into contact with to test for o bands, autoimmune markers. Neurologist said today that they only check I bands, etc when protein is high. I am concerned about that. BUT...he said that her pressure was VERY high... The opening pressure of spinal fluid. It should have been, according to him. 20, 22 tops, and hers was 38. He said this can really cause vision loss, and they are trying to get us in to see a neuro-optho
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