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tu4four

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tu4four last won the day on November 9 2013

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  1. Hello,

    Just saw that you saw a doctor in Colorado.  We're having a hard time finding anyone in Colorado who will take PANDAS seriously.

    Many thanks,

    Sarah

  2. PS. I often think viral illnesses trigger him. So I don't have a good plan for treating that. Have used virographis, oregano capsules, olive leaf extract and an oil....
  3. Thank you for your response. i read back over my letter, and I know it sounds....horrible . It is, but I guess I have periods where I can hold my head above water and dog-paddle and periods where I feel the shore-line is so close, but I just can't touch it. Yes, my dd15 and ds11 have both been diagnosed with pandas. They have both been given abx, and IVIG was recommended. But, you know....insurance. We have pursued yeast; we did a detox diet and nystatin/diflucan and saw some improvement. We need to do that again. Both my dd15 and ds11 have several viral issues that we have
  4. Hello, mamas (and dads, and grandparents, etc!). I haven't posted anything for a long time, possibly because I haven't seen any new hope, any doctor that is willing to help, and our funds to travel to our doc have run out. Our most profoundly affected child (15) has continued to be super irritable and moody. She has been officially diagnosed with bipolar, asperger's (asd) conduct disorder at best, borderline personality disorder at worst. She has been out of the psychiatric hospital for 2 days, and as if that wasn't enough, my ds11 has now been in a flare for at least 2 months with 4 weeks
  5. Thank you so much for your response and wonderful ideas. Dd is actually taking lamictal now (200 mg am and pm) She also takes a low dose of ability and had been taking vyvansw (for attention and focus), but I have stopped giving her the vyvanse since I fear it may have been a cause of mania.
  6. This is a strange and awkward topic title because I am not sure that there will ever be acceptance of this in my heart. I love my daughter. She has a heart for little kids.and special needs people. But there must be functionality in life, in our home. Three years ago I was on this board a lot. We saw doctors (llmds) in Missouri and Colorado, immunologists in Plano and Colorado, neurologists in Houston, and, of course psychiatrists where we live as well as a functional med doctor where We live. We had terribly expensive phone consults with doctors in New Jersey and Illinois. She has
  7. It has been a long time since I have posted anything here. My dd13 was diagnosed with PANDAS.../it appeared to start intensely around the age of 5. Her most significant issue has been intense rage, and then around age10 or 11, she started lying when the truth would fit better. I mean, lying about everything. Even though I know she has this serious medical issue, after years of trying to treat it (even including almost every mood stabilizer or anti-psychotic), we have had no success in healing the underlying issue. We have treated for Lyme as well. we have not done i ig because insur
  8. I guess it depends on the open-minded mess of the dr. These are the terms that I actually used with our neurologists (I learned from our pediatrician that pANDAS wasn't going to go anywhere.
  9. In our experiences within the past 6 months, TX Children's has not changed its stance. Our pediatrician told us she spoke with the top immunologist for TX Children's and was told that TX Children's does not believe in PANDAS. Our most recent neurologist is with TX Children's (as well as the previous one). He does not believe in PANDAS and seems to be one of the more open-minded docs there. He was compassionate, did a lot of testing, but just won't go there. Oddly enough, a TX Children's pediatrican was the first one to mention PANDAS to me. Of course, now she knows nothing about it. So
  10. We have not had any bloodwork done recently. Things sort of ground to a halt with the second neuro doing an EEG (normal) and tons of bloodwork. He said she looked like asperger's to him, which I have always fought. But we are kind of at the end of the road here. My husband is working two jobs to pay off our bills. we traveled to Colorado several times to see a doctor whom I love. We saw two out-of -town immunologists, two neurologists, two llmds, a couple of chiropractors, a functional medicine doctor, several psychiatrists, several thrapists, including occupational therapy twice had
  11. We did treat bartonella, but maybe not long enough. I am going to go back and look at what we used and how she was behaving then. Does the complete disregard of any rules go with Bart, too?
  12. I have 't been on in a long time. I have four children, one severely affected PANDAS kid and two others who wax and wane to different, but frequently manageable, degrees and another who I often wonder about. My most severelt affected daughter just turned 13. We have see a great dr in Colorado..., .she seemed a little better for a little while, but not nearly complete. Her OCD appears to be gone and has been for a couple of years. But she is seriously oppositional and irritable. She spent four solid years on psych meds--no e of which maintained a good place for her. She had her to
  13. Dd12 has had years of struggles, and while she has been in a pretty steady place lately, she is still pretty negative. Lying, taking things that belong to others in the house, calling us all (me, included) morons, losers and such. She cannot stand to be touched and still often can't stand to hear anyone breathing. I would say she is maybe 75%. Still very hard to live with and causing a lot of chaos within the family. She had a lumbar puncture a year ago and had a very high opening pressure, which can be indicative of encephalitis as well as other things. She had a mildly high tpo test
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