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Dean1065

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Everything posted by Dean1065

  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.
  10. I guess if you are reordering it means you were satisfied with them?
  11. I remember a thread a few weaks ago in which there was some discussion about purchasing rapid strep test kits over the internet. I was wondering if anyone had done so and if they had a recommendation as to which test to get?
  12. Hello, We are new to PANDAS with my daughter being diagnosed in December 2011 so I am still in the process of learning everything I can. I have only posted a few times on the PANDAS board and never here. Our problem appears to be strep only as far as we can tell, with OCD being the main symptom (no tics). I read most of the posts on the PANDAS board and can't help but notice that Lyme is a major topic in many of the threads. My question is whether there is believed to be a connection for many kids between PANDAS/PANS and Lyme, or if it is a case in which some/many the symptoms and disease progression of PANDAS and Lyme are similar. I have also noticed that some have said that the symptoms that people have listed in their threads remind other posters of a Lyme related illness instead of strep triggers. I was hoping someone could help me understand this, along with some of the differences and similarities of the Lyme and PANDAS ilnesses and how they respond differently to treatment. Regards-Dean
  13. Florastor makes a kids version that comes in a packet which tastes ok. It's a little more expensive than the regular kind.
  14. I was wondering if you could tell me if the exacerbation was less severe while on the ABX dose or if you started over from scratch at that point? Thanks-Dean
  15. Our last visit is at the 6 month mark. After that the follow up continues, but by phone.
  16. We are currently on 5mg/kg. I'm sure we will discuss this more in depth on the return visit.
  17. My understanding is that we will be on a daily prophylactic dose until the completion of the testing portion of the study which will be a total of 6 months. I'm sure we will know more after our next visit. Our first one was pretty much a whirlwind. After that it will be up to us to work with a local doc on continuing the antibiotics.
  18. They put us on once daily Azithromycin.
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