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forjpj

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  1. They approved my ds' ivig fairly easy...much easier than the pex. But get the Office of Personal Management phone number into you contacts list just in case!! They were extremely helpful...especially with speeding things up!! Good luck!!
  2. bump for those reading after the dinner hour And I will definitely post a link!!
  3. Channel 4 NBC news will be doing a PANDAS story that is scheduled to be aired on February 7 at 11:00 pm with Doreen Gentzler. Yay!!
  4. Thanks Peglem...got to double check all that...I also want to check on the long term care insurance premiums. Just reviewing it some more...it ISN'T meals and lodging, but it IS transportation and admission to conferences. But there are deductions for meals, lodging, transportation (including trains, taxis, etc.) on hospital stays. Wish I'd kept receipts too...I've been working the commuter train, metro, and taxis in D.C. for the past six months going to Georgetown. Going to be digging out credit card records for the next three months.
  5. Here is the link for medical tax deductions which I'm sure a lot of us could use. My link Interesting...you can include in deductions fees for medical conferences including food and travel. So for those of you who went to the ocd conference or the texas a&m conference that is great news...wish I'd known that last year. Also, I didn't realize you can actually deduct the insurance premiums...but this is not my thing at all, so I'm probably just the last to know. Happy Filing!!
  6. When BC/BS Federal denied our first pex, I wrote a letter of appeal. Basically, my son was totally incapacitated at the time. Having dealt with years of occupational therapy and my sick elderly father, I remembered that somewhere in that black hole of insurance rules that they are required to see that the patient be able to achieve all the normal daily activities of living...Eating, Bathing, Toileting, Walking/Movement, Sleeping, Dressing. These can vary depending on what you look at, but basically these are it. Most often they are used with elderly patients, but I figured why not with my son...he couldn't do any of these. So I took each activity and explained to the insurance company how he couldn't do them or how difficult they were. Basically, I said this is what's wrong, and by using the daily activities of living I left the ball in their court. We got approval, but it was rather strange how it happened. The same doctor who denied before denied it again. Then a few days later I got a call saying it was approved from one department as well as our doctor's office. About 20 minutes later the bad doctor's secretary called me saying it was denied (i had left an interesting voice mail for him earlier that day I informed them I was just told it had been approved and she had no idea what I was talking about. Good thing I was taking names!! It was funny in 1 hour's time I got 3 calls from 3 different area codes discussing this issue!! Anyway, I think we lucked out with a very sweet nurse, Donna - I'll never forget the name, who took the letter to the right desk and got it improved. Ugh...I probably haven't helped you! Basically, it was luck, but I do think the letter helped lay it out clearly for the insurance company. And that using the "normal daily activities of living" gave them more responsibility. I know you said your son was doing better, so maybe you could go back and state you don't want to go backwards or something, and that prevention is the normal standard of care for autoimmune diseases. We didn't find out about the patient advocate until after either. Funny how that stuff isn't made clear. Well good luck and my best!!
  7. Pharmacist told us the same thing...one when wake up, one at bed, and fit the others in during the day...mine kids are taking 150mg 4x/day right now. And I am just cramming probiotics in (or yogurt) whenever I can in between...hoping there isn't such a thing as too much. Luckily, the school is giving my daughter one of her doses so that helps. Isn't there a liquid...would that help your daughter? Keeping my fingers crossed it helps our kids!!!
  8. No, only some of the symptoms started reappearing, and they would only encompass a small part of his day. We at least got to work up to the all-encompassing stuff gradually. It helped us reacquaint to the process !!
  9. No, they came back slowly. I did get to see that sudden-onset a little bit that I never had. That was interesting!! One minute he was fine, and the next he was screaming. I also thought of something else...in those 3-4 months he was better, he grew tremendously. He hadn't grown a pants size in a couple of years, and I had always been able to see his ribs...even before pandas dx. He just never seemed to grow like other kids. Shortly, after the pex, once his body stopped fighting itself, all that energy went into growing. One day I looked at him at I couldn't see his ribs. I was so excited!! Over that short period, he grew 3-4 inches, and gained 15 lbs. And I really don't think it was a normal growth spurt...the timing was too perfect. Good Luck!!
  10. My ds has had pex twice. Within 3-4 weeks after the first one we started seeing huge improvements, and he was 95% back to his old self within 6 weeks. That held us for about 3 beautiful months until another illness...mycoplasma pneum. It was totally worth it though...just to see him normal again. And it made me feel better to know I wasn't crazy, and in the end, helped me deal with symptoms when they came back. I was really able to separate the boy from the pandas. We are about 6 weeks from the second pex, and so far not much. Unfortunately, we have had smaller illnesses come through the house so that isn't helping matters. Still waiting patiently...
  11. NVAmom can attest to this....At our first pandas support group meeting in July, 4 of us met...we all had one pandas child. When the same four moms met a couple of weeks ago, we all had 2 pandas children. In just six months we doubled. And like NVAmom's kids...mine also present totally different.
  12. Yep!! Will be there!! It might just be us three, but that is okay by me!!
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