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coco

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  1. When we first did ivig with dr k in Chicago three years ago he urged us to wait to do another so quickly. He and other wise moms before me coached me and said it can take A YEAR for the brain to heal. Not what I wanted to hear. In the absence of a stair step recovery and flares of unbearable behavior I pushed for more ivig. In hindsight I cannot say that was the answer. It was only until we did our last one 15 months ago that I see holding improvements. For us, TIME was our friend. And back then I was convinced it was my enemy and it was a very tough road indeed. There's nothing worse than when your child is spiraling and you are grasping for more help. Sometimes more is not better, and continuing to support their immune systems, gut healing, detoxing, etc can further contribute to their healing. I know each situation is different, but when you're inthe eye of the storm it is never clear what to do next. Best wishes.
  2. Nancy, just said a prayer for you. For what it's worth, my neuro who treated my Lyme said that doxy could cause suicidal thoughts, and I know your daughter has had quite a bit of it in the recent weeks. Best of luck. The despair is excruciating.
  3. Nancy, what did your doctor say about trying the iv lexafloxicin?? That is used for critical brain inflammation, I know there is a slight risk of use to young kids, but it might be worth another look for your dd. good luck.
  4. White plains/westchester ny is the closest and easiest by far, but not every carrier offers service. Worth a check.
  5. As I was getting dressed this morning I heard a snippet on the news about vaccines...something like, "new information reveals that childhood vaccines are not doing what they intended...". Didn't catch the piece. If anyone else did, I am anxious to hear (probably what we have already hypothesized!) but maybe it's the start of something.
  6. LLM and MomOCD, Soooooo well written and mirrors my sentiments exactly. I have yet to speak to ANY doctor with regards to Pandas, Lyme, co-infections, vaccinations, supplementation, viruses, etc., who have got it all figured out for each and every patient. And these are good people. The nuances and complexities of these children's journey of healing is individual, and it does take a tremendous amount of research, thesis-style, to try to spin the straw into gold. And although we are patient enough to be safe, we are fully aware of the ticking clock of childhood and of some aperture closing...so we are bold, because we feel we have no other choice.
  7. Nancy, regarding pandas kids having "too much dopamine" I think I remember Dr K(?) a while back telling us that is was "dysregulated" dopamine that was the problem. Perhaps that is why SSRI's are most difficult.
  8. Nancy, thank you for your updates. When you were talking about your daughter feeling "strong" I could hear YOU being strong as well and it felt so good to read that and feel that strength and empowerment in your voice. Healing is so hard, and you reminded me of Scarlett O'Hara when she declared to God and to herself, "I will never be hungry again!" I am deflated to read the IV had to be stopped. But she made it close to the finish line. She has a lot of very strong medicine in her, her body has taken a beating. Perhaps she she is herxing on it in addition to Luvox back and forth? I know you will be victorious, Nancy!
  9. Yay Nancy! Great news! May I ask the dosage of IV doxy? How long does the infusion take...30 minutes start to finish?
  10. Nancy, this is fantastic! So great great great to hear this! And such a quickly noticeable difference! Please keep us posted as you progress! Right behind ya, lady! ☺
  11. Crying for you!! Tears of happiness! LOVE IT!!👯👯👯👯👯 happy dance!
  12. I was talking about IV Levafloxicin, as was used in the study. I think it depends on if it is determined to be non-severe, severe, and pseudomonas risk. Now, where "chronic Asymptomatic other than neurological" falls I do not have a clue. Especially as it refers to pandas. I would think you go up the chain of strength until relief is seen?? But try to save the biggest guns for life-threatening circumstances. But if neurological is involved it must cross the BBB, IMO.
  13. Ptcgirl, what were your dds IGM/IGG mycop numbers? You need to watch the trend with IGG. IGM should drop as IGG rises, indicating that your child recently had mycop. Over several months the IGG titer will rise and then should fall. Chronic mycop IGG titers rise, fall slightly, rise again, type of pattern. The child can be Asymptomatic other than neurological. For those children it has been postulated that macrolides abx are not strong enough to reach the cerebrospinal fluid and the brain. That is perhaps why even long-term biaxin or augmentin is not effective. That is the case with my dd. I like the idea of the right abx given via IV, bypassing metabolization in the gut over a couple of weeks. IV comes with its own set of concerns, etc, but I would be willing to do if that is what can destroy this SOB. I am concerned about levofloxacin potential side effects, but I am even more concerned about not ever treating this right. I wish the answers were more definitive. Nancy, please let us know your doctor's thoughts.
  14. Nancy, go back and read a thread a few pages back entitled "mycoplasma chronically high IGG" from two weeks ago. Talks about a very recent research paper which discusses the use of it for mycoplasma in children, two weeks, via IV.
  15. Oh, forgot to ask if you are doing it at home or in doc's office?
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