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tu4four

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Everything posted by tu4four

  1. 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....
  2. 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
  3. 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
  4. 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.
  5. 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
  6. 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
  7. 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.
  8. 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
  9. 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
  10. 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?
  11. 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
  12. 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
  13. I have asked you all for advice so much lately that I really hate to ask again. But you all the ones who know..... I really don't even know if I am asking for encouragement or advice.....I just know that I have been trying to avoid the freight train coming down the track, and despite several glimpses of it, tonight it has pulled into the station full force. Poor baby girl. You might remember that when tested for strep several weeks ago.....based on her hand being warm in mine and new and sudden fears of being alone in a room, etc, her culture was positive for pennicillin-resistant
  14. Anyone have experice with these kinds of results? Dd12 had a high opening pressure on lumbar puncture. Pretty normal results except for that and very high glutamine, low aspartate. More bloodwork showed high bun and high bun/creatinine level. Then ALERT level lactic acid and high pyruvic acid. Tested tpo in October. It was high, but all other thyroid levels are well within normal range. Test rests back today on dd4 show high tpo/ low cd4/lymph. We are doing an EEG today on dd12. Although our neuro is "convincable" of PANDAS in our case, he has mentioned mitocho
  15. Thanks. She is definitely not herself. I am going to get her Re-checked.
  16. Thanks for that info. Think I will check that out given her recent staph infection in her throat.
  17. Please pardon me if I am asking a repetitive question. I think I read this somewhere about a pANDAS child or two but couldn't find it here. My 4yo dd who has had a staph infection in her throat within the past month i(and has had stmptoms of fear/clinginess/whininess) is scooting around on the floor constantly and barking/neighing, etc. I have been thinking this was just her being four and into pretend life. But over the past couple of days we went out of town to see my mom who basically asked me what was going on with her--she said it seems like she has a motor going inside her a
  18. Dd4 has a staph infection. Rapid strep was negative, but I managed to get a functional med doc (who is familiar with PANDAS) to give me three weeks of zithro. Advil was calming her fears, clinginess, all symptoms. Zithro kept it at bay. Then I got a letter from the clinic several days later saying dd had staph. After several days of trying to get an appropriate abx for staph (penicillin resistant), we were given clindamycin. So she has now been off of zithro for several days but on clindamycin. Now she is showing big time fear, separation anxiety again. Her little hand feels
  19. Mayzoo---don't want to hijack the post. Can you tell me how the arachnoid cyst business plays in? (I cannot clear my message box until I can get home and have some time to play with the computer at home). Dd12 has a couple, found by our neuro, who also dismissed them as no big deal...even a cyst on her pineal gland. I would have thought that might be important, but....
  20. Powpow.... My inbox is full, and I cannot seem to empty it until I get time to get on my computer....I really think this is probably a big part of my daighter's issue....she had a lumbar puncture in nov last year, and the neuro was very concerned about her high pressure, but after we saw the pedi opthamologist, and he said her eyes were fine, the neuro wrote us off. I kept trying to get results for viral bacterial testing, but I suspect they didn't even do that because it was like pulling teeth to get the 3 separate piece of info I got, and she kept telling me those were the only results she
  21. Yes. We had the opposite effect. It was like poison of dd13z. However, dd12 is low in taurine. Hmmmmm....
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