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Dean1065

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  1. I was wondering if someone knew of other lab abnormalities that were associated with this mutation? I guess I'm wondering if there are other markers that may show up on routine labs that would point to a need for this test?
  2. Glad to hear this. The study description itself is pretty informative.
  3. We saw dramatic improvement with IVIg although it took about 3 weeks. We are now 3 1/2 months post IVIg. Our daughters symptoms were OCD, emotional lability, separation anxiety, and horrible intrusive thoughts.
  4. For those that have been battling this for a while I was hoping for some insight on what we might expect in the coming months/years. My DD9 is 3 1/2 months post IVIg and is doing quite well. We are new to PANDAS having had her first identifiable episode 5 months ago. We are currently on prophylactic Azithromycin. What I am wondering is whether or not the kids flare with every illness, how severe the flares are, and the normal duration? Obviously we hope that we never see another one, but are trying to be realistic and have an idea of what to expect.
  5. I was wondering if those that were told not to have any cleanings if it was due to individual circumstances or if it was issued a general advice to all PANDAS kids? We have a cleaning appt in a few weeks and am wondering if I need to rethink it? My daughter doesn't seem to have issues with loose teeth, not sure if that matters. Do prophylactic ABX help with dental procedures?
  6. Thanks to all for the input. We are Costco members. I'll call them and ask the best way to have it prescribed to keep the costs down.
  7. This will definitely be a change from what we're used to. The easiest way to describe it is that it's like we have no insurance at all until we reach a family deductible of $4000 and then everything is covered 100%.
  8. We Weill no longer be with a PPO so we have to pay the entire cost of the prescriptions until the deductible is met. Just trying to figure out how to ask for it to be prescribed. If they will fill 60 at a time we may have to try that and work on swallowing pills.
  9. We are switching to United Healthcare in a couple months but it is a high deductible major medical policy. We are currently with a Cigna PPO which charges only a copay for long term Azithromycin. When we switch over we will be on the hook for the entire cost of the prescriptions until the deductible is met. My question is how to get long term Azithromycin prescribed and filled in a situation like this. Can you get longer prescriptions than a few days at a time? We are currently using a suspension.
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