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PANDASmcnuggetsw/fry/coke

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Everything posted by PANDASmcnuggetsw/fry/coke

  1. Has anyone here had IVIG on the diagnosis of A.D.E.M.? After reading about it at Dr K's site and elsewhere it sounds more akin to my daughter's situation with the timing and vacinne involvment. If so, did you have an MRI first? Thanks so much, PANDAS McNuggets w/fry/coke
  2. On the phone, our carrier, which starts with a B and rhymes with SUE, said they would not even tell us the guidelines for ivig coverage unless we told them the procedure and diagnostic codes first. Now I have the codes and after reading some of the posts here, I'm not even sure if I should call them, but rather let the hospital handle it. I'm afraid they are going to to hold us to these codes even if doctor changes them. What do y'all think? Thanks, PANDAS McNuggets w/fry/coke
  3. Saidie and everybody, Thank you so much for your input! Every bit helps. :-)
  4. Blue Cross/Blue Shield is saying maybe....that does not tell me anything though! Thanks and best wishes!
  5. Has anyone had any succesful coverage with BC/BS? Does anyone know their guidelines for coverage~ if any? Thanks, PANDAS McNuggets w/fry/coke
  6. Is there a test for yeast? How do you know if it is even a problem? Thanks! PANDAS McNuggets w/fry/coke
  7. I forgot to mention that we have ruled out lyme. Three doctors, including the head one at Igenex said no. And Lynn2, I am totally unfamiliear with "yeasty" issues. What would that look like? Thanks so much!
  8. I think we have done most of everything on Buster's flowchart in pretty short time. (thanks Buster!) This all started in May of this year and now we are looking at IVIG possibly in a matter of a few weeks. We eliminated we think her sinusitus infection and there may be an underlying myco infection. She has been on high dose Biaxin, 2000 mg a day, and we are not getting better. In some ways, worse. Is it neccesary to make sure the mycoplasma is killed before IVIG? Dr K seems to say it does not matter and I think Dr T is saying you want to find and kill that infection first. How can I
  9. She has been on Biaxin 500mg 2 x day. Our doc is now going to double the dose, so that will be 2,000 mg a day. He wants to see how she is doing in 14 days, saying the mycoplasma is hard to kill. He also is contemplating another steroid taper, but a more gradual one. I don't understand how for some folks, the steroid taper can be almost a curing thing while for others, the child bounces back to the old symptoms as the steroid tapers down. Why would a second one be worthwhile? I'm not sure. So far has your first IVIG seemed to have restored your child's health? Thanks for any help!
  10. We have not posted a while about our precious daughter 12, as we were trying our doctor's reccomendation of 30 days Biaxin and 30 day prednisone taper. We had a good first week there, but now at the end of the 30 days, the wheels are falling off again. Intrusive thoughts are becoming worse and more debilitating. Some new tics are popping up at night and she previously didn't have much in the tic dept. Dr K of course says head to IVIG but we are wondering if we need to make sure her myco is killed first. Her sinusitus is gone we think, but Dr K does not seem to think it matters if the un
  11. With our daughter, both myco igg and igm were elevated and when we did a retest a few weeks later, just the igg was elevated. I think the pale face is steroid related b/c I saw it on the 5 day burst too and at no other time. I'll keep an eye on her and consider calling doc. She woke up noticably happier and now is sliding down......but no pale face yet. Also, steroid brochure says no NAISDs and tell your doctor if child is on a microlide!! Well the same doc prescribed both and said do at the same time! I don't see how I can stop the steroid since she started it yesterday. It
  12. Thanks Tired Mom. Do you remember why they may not be a good mix? I've been searching and have not found anyhting, saying why steroids msy not be good with myco.
  13. Yesterday we ruled out lyme and today moved forward with the beginning of a 30 day steroid taper and Biaxin 500 mg, 2 x a day. She has mycoplasma and chronic sinusitus. She has had only one of the Biaxin doses for the day so far and one dosage of the prednisone, and she is obviously worse than before. High OCD, gray color in her face, body is sore, falling apart!!! Can this be herxing or does she have a problem with the steroid? I remember she had big valleys on the a 5 day burst we did a while back, but there were a few good days in the observation period too, which lead Dr K to say
  14. Ok my columns got scrambled when I posted so I'll try it this way..... IGG 41 ++ (double positive) 58 + IGM 31 indeterminate (IND) 41 + 83-93 IND So they are not the same...what does that say then? THANKS!
  15. Yikes. It was tomorrow and I just canceled it b/c I thought we were negative. Ok here is what I have: IGG IGM 41 ++ (double positive) 31 indeterminate (IND) 58 + 41 + 83-93 IND What does this mean? Thanks!!!
  16. I don't know if IGG and IGM are the same b/c hubby has it at his office. It was just faxed over finally. Why is this significant? I'm waiting for him to call me to tell me. In the meantime, someone posted on the lyme board..... Both of those positive bands can be indicative of lyme. However, they are not incredibly specific for just lyme, as compared to some other bands, such as bands 31, 34, and 39. Band 41 is the least specific out there, indicating something with a flagella (tail). I read band 58 indicates "heat shock protein", but do not know what that means. It does indicate s
  17. Also, now she can do a tapered burst and I don't have to worry that it's harming her more if she had lymes!
  18. P.Mom, Thank you soo much. Another piece of the puzzle eliminated! :-)
  19. She was positve for 58, not 59. Does that change anything? Or maybe you hit a typo and meant 58? Tahnks so much!
  20. We just received our results for dd 12. She is DOUBLE positive for band 41 kDa and positive for 58 kDa~ both Western Blot. Can anyone tell me what this means? Thanks! PANDAS McNuggets w/fry/coke
  21. Martin Luther (as in the Protestant Reformation) was thought to possibly have the scrupolsity form of OCD. Also, Leonardo Da Vinci, one of the greatest minds ever, left many writings. One of which was a journal with the same sentance writtten over and over. It sadly went something like this: Tell me if anything I did was worth doing. Tell me if anyhting I did was worth doing. Amazing, given all of his contributions to art and science.
  22. I can totally picture him being warm and kind and funny later, and that is good, but did any of you give a little head's up to your kids? My impression is that he is totally serious when he is doing it and that would freak her out. Given she is already uncomfortable with male doctors and her type of OCD, it's hard for me to feel like a co-conspirator to her further distress when she has already suffered so much. PANDAS McNuggets w/fry/coke
  23. Thanks everyone for your input. I think my dd would definetly feel threatened by the situation to the point that I don't know if she would relax and trust him over the course of the IVIG. I think she would also question her father and me as to why we would put her through this, given her OCD issues. I guess scruplosity might be it, but it is larger than that. You just don't do ANYTHING that is in her mind morally questionable. It is to the point that the ladies pictures painted on WW2 bomber planes are immodest and need to be covered up in books. Boys and girls have separate roles and bo
  24. Thanks P. Mom. Did you give your child the heads up in any way....like "don't be surprised if he is wacky or jokes around?" Or did you keep mum? It is hard being the mama bear that I am not to give some type of heads up (while at the same time not blowing an experiment). DD is so fragile right now I just can't see pushing her buttons and being complicit. kwim? Thanks, PANDAS McNugetts w/fry/coke
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