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Everything posted by PANDASmcnuggetsw/fry/coke

  1. We might be doing IVIG with Dr K after we finally get dd's infection cleared up. We have only had the phone consult so far, so he has not met dd. My question for those families that work with Dr k is about that initial meeting that he has with your child. I have been made aware that it is a bit unconventional. I'm not asking what he does, I got that, but what is the rationale, if you know. Feel free to pm me. With the cost of IVIG likely out of pocket, flying and hotel stays, AND the delicate state of dd, I'd like to understand more before this initial meeting. Thanks so much, PAN
  2. Does anyone know if Dr. B will treat someone from afar while working with the patient's local immunologist who is seeing the patient? We have a local immunologist on board in Michigan, and are unable to make the trips to Conneticut. I have called Dr. B's office for an answer to this question, but they said it might be a day or more to get back to me. :-( Thanks so much! PANDAS McNuggets w/fry/coke
  3. Thanks so much everyone. I'm starting to think there is not an area that is NOT affected by PANDAS. In the past there were warm spots on her body and now she has cool spots.......:-( Vision, chest, memory, OCD, phlegm, joint pain, emotional lability. This is a pretty all encompassing illness.
  4. Thanks everybody! Does Dr T do tapered burst and the 5 day type? PANDAS McNuggets w/fry/coke
  5. Hi friends, We are needing to add another specialist to our team before we go down the road of IVIG and while we are fortunate enough to have one specialist on our side already, we need more info on what the others do and don't do before adding another to our team. The areas we need info on are IVIG or PEX, ABX and steroid burts, beyond the 5-day diagnostic tool. It is my understanding that Dr L ONLY does pex. I know Dr B does IVIG. Does he do pex too? and Dr K? Dr T? Who does and does NOT do ABX (and I mean before IVIG/PEX as a line of treatment itself)? Steriod bursts? Plea
  6. My dd 12, is also saying her vision is doing wierd things. She says the objects she looks at seem to be blinking, light and dark, in a rapid fire fashion and it is fuzzy. She also describes that when she looks at light or objects near light, they pulsate and get bigger and smaller in a SLOW fashion. She JUST got a new pair of glasses a few weeks ago, and then as a regular doctor check up, one eye tested at 20/70 WITH her brand new glasses on. I thought the pulsating or blinking sounded like the throbbing of a headache, but she has no headaches at the time and says the blinking is err
  7. Thanks everyone! She gets shortness of breath too, which also started in May. Here I think her tic exposure was when she was a toddler and we lived in the U.P. of Michigan. I remember two being pulled off of her. Possibly the lyme lay dormant until the vaccine exposure in late April. Anyway, I can't WAIT to see the lyme results. We have an appt. with a lyme doctor set up too if neccesary. PANDAS McNuggets w/fry/coke
  8. Our dd 12, has off and on complained of chest pain, not too sharp, but not dull and it is not near her heart. This, as with the joint pain and all the other symptoms has only existed since the sudden onset in May. Do any of your children have this? Is it a PANDAS thing or a lyme thing? We are waiting on our lyme results now. I've mentioned it to a couple of the doctors and they don't even seem interested in this. Thank you... PANDAS McNuggets w/fry/coke
  9. Hi friends, Today we recieved dd's (age 12)Cam KII results. It is 168 with 98 being normal. She was not in an exacerbation at the time of the blood draw, but what I guess you would call just a chronic state. Kathy Alverez said it was ok to draw the blood at this time, but just her number would be lower b/c she was not in an exacerbated state. Well, I don't see alot of folks posting their exact results, but that seems pretty high to me and Dr k said in a quick email that it was in the "abnormal territory." She just started azith at 250mg (seems low to me) a few days ago and we are w
  10. Thanks Vickie. Does it matter whether its Motrin, Advil or generic ibprofen? Is there any difference? PANDAS McNuggets w/fry/coke
  11. How long can a child take ibprofen/Motrin etc. without risking liver damage? I have heard some parents go long term with it and some nervous about a few days. Are we talking about the standard dosage also? As in 200mg 2x a day? Thank you! PANDAS McNuggets w/fry/coke
  12. I have also posted somewhere on the board here about our experience with a live vaccine. If it were not for the Hep A shot my daughter had in anticipation of her twin adopted brothers coming home from Ethiopia in April, we would not be here now. Dr K also said it was a trigger for something dormant (wish it stayed dormant :-() and he said no more vaccines for her, now that she has active PANDAS. PANDAS McNuggets w/fry/coke
  13. I was just reminded about the recent NIH post and thought it would be nice for everyone to have access to that at the useful threads column if possible. Can someone post it there before it gets buried further? Thanks! PANDAS McNuggets w/fry/coke
  14. We will be testing on Monday and I have been told it takes 2 weeks for the results. Are the results so complicated that you need an LLMD to interpret them or can an allergist/immunologist do the job as well? Many thanks! PANDAS McNuggets w/fry/coke
  15. Kimballot~ may I ask what type of steroid burst helped? Was it 5 days or something more? Worried Dad! Yes it IS a small world, but glad to know you are there for support in beautiful Michigan! Fixit~I'm not sure if you were asking me this, but no she has not. And thanks everybody for all of your answers. I'm going to ask for a higher dosage. :-) PANDAS McNuggets w/fry/coke
  16. Is it correct that with the 4090 AND the 6050, neither test the urine? This is what I understood from a phone call to Igenex. I wondered why they don't test urine for the initial panels. I'd hate to have her go off abx again if we need to do further lyme testing. Thanks so much, PANDAS McNuggests w/fry/coke
  17. Thanks everyone. I'm starting to think her myco was a remote infection and that chronic sinusitus is the current one. We'll see what the newer test says. Maybe one led to the other...?
  18. After her lyme test next Monday, I will have in hand her filled rx for azith. It is 250 mg, 2 x for the first day, then 1 x for 4 days and repeats 2 more cycles. So it's 5 days on, 5 days off for a total of three cycles. (15 days and 18 pills total) Does this sound like enough for her???? She is 115 pounds and 5'5'', 12 years old. It seems puny. Thanks for your help! PANDAS McNuggets w/fry/coke
  19. My dd has had chronic phlegm or sinusitus since her excerabation in May. The abx amoxicillan and augmentim help lessen it but not KILL it. She just went off augmentim to clear her system for the Igenex lyme test and the phelgm/sinusitus is REALLY coming back strong. Remember I posted Dr K said she will have this as long as she has PANDAS.... My question is for those who have dealt with chronic sinusitus, which abx have worked for you and at what dosgae? Is there any other treatment for sinusitus? We are also waiting on second myco test to see if that number has gone down. Thank yo
  20. So it sounds like the reliability is more where the test is sent vs. WHICH test. Thanks Wendy. Does anyone else know if there is more than one type of myco test? Thanks so much! PANDAS McNuggets w/fry/coke
  21. Someone, I forget who, recently mentioned that not all mycoplasma testing is accurate and I would like to know what are the available tests for myco. My daughter tested high for it and was retested today, so we should find out the results next week when they come back from Mayo. I believe her test was called MPA IgG & IgM,S. What other tests cover myco? Thank you! PANDAS McNuggets w/fry/coke
  22. Thanks Karen, Our local cosmetic dentist says once a day with baking soda is ok, but I wonder if that is too much. There is also a good toothpaste that is gentle called Rembrandt...pricey though~! PANDAS McNuggets w/fry/coke
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