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forjpj

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Everything posted by forjpj

  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!!
  13. Sorry to do this last minute but lets push the meeting back to 1/29 at 11:30 at Potomac Mills Olive Garden. My daughter is sick and my husband is out of town. She says a lot of people in her class have had the flu so I'm guessing she might not be better by Sat. I want to make sure I'm there so no one is left sitting at Olive Garden by themselves ( the time alone could be dangerous)!! I'll contact you guys directly too!!
  14. Yeah, the 22nd is what I was thinking. Ok, decision time....let's say the 1/22, keep it at Olive Garden since we know exactly where that is, at 11:30. That way nobody has to drive home late.
  15. We went to Disney a few years ago, before pandas diagnosis, before things were bad, when we just thought things were sensory integration disorder. After we got there, and I learned about those passes, I joked and said I bet we could get one. I sure do wish we had. Like I said, things weren't even bad then and we could have benefited. I totally underestimated the sensory overload when we went. My husband and I would have had a much better time if we didn't have to "control" in the lines and stuff. I say use as many dxes as you can. Don't feel guilty at all, it will make your experience better!!! And Disney, especially, is so customer-oriented, they want you to have a good time and get the most out of the experience. That was Walt's dream!! And if it makes you feel better, you don't have to use it all the time!! Have fun!!
  16. When my ds got sick, my mom and I put our memories together. From what we remember, it looks like I probably had at least one pandas episode as a child, but then nothing else of significance. Putting more pieces together, I feel like my two sisters probably had it, but not my two brothers. One sister was anorexic, and one has some undefined autoimmune condition to this day that nobody can quite pinpoint. I also find it interesting that my father has alzheimers which is the result of protein getting through the blood brain barrier. And since pandas is the result of antibodies getting through the bbb, I feel like the pandas has probably come down from my father. LaraM...you also mentioned your dad having Alz. I often wonder how many other families are affected by both. Feeling like this goes with what seems like more and more people are getting alz and, potentially, pandas. What are we doing as a society to the blood brain barrier to weaken it?
  17. Great minds think alike!! I was getting ready to send out an email...figuring next weekend. Now, you guys know how worried I am about making sure the area is convenient for everyone, and we have been doing Potomac Mills. Any other suggestions? Sarah
  18. I don't post much, but let me say..."I LOVE YOU GUYS!!!" This is what I have been focusing on a lot lately, and it just p***es me off!!! Not all of it is in meanness, but that doesn't help, it just frustrates me. Do they think this is fun, do they think I'm so stupid that I whatever I read I believe, don't they know me at all or value my judgment? And I'm talking about some pretty close spectators here too!! If our children had cancer nobody would question anything we did. "You say you are enrolling your child in experimental study where you have to go to the deepest, darkest rainforest to drink the saliva from an ant while they sweat in a steam bath that come from an underwater spring in the ground..awesome...its cancer...you do what you have to do!! I'm so happy you have a possible solution." But tell them about pandas and abx, and ivig, and pex, and it becomes... are you sure you aren't just worrying too much?. (And this does not mean I want me kid to have cancer...just comparing...just got to put that out into the cosmic universe so I don't jinx us) Ugh...I'm getting worked up, but doesn't take much these days!! Thanks for letting me vent!!Glad to know I'm not in this alone!! Sarah
  19. So sorry...had to do the same thing about a month ago!! It is heartbreaking!! About a week after our visit, and a few days in a treatment center, we figured out the problem was yeast. No signs except the raging...even though the er doc said in a boy a yeast infection would be very obvious. My ds was on high-dose augmentin, and after playing around with different things, diet, etc.,it seems the augmentin in particular is much more likely to cause the yeast build-up in my ds. And I agree a pandas specialist sounds like the best plan!! Good Luck and Prayers!!
  20. I hope you guys are doing okay!! Thinking about you!!
  21. My ds 10 had scarlet fever when he was 2. His rash was mostly over the torso and he was treated with antibiotics. PANDAS symptoms probably presented when he was 3. I was pregnant with my dd 8 when my son had scarlet fever. Her condition is much less severe, and I wouldn't be surprised if that had something to do with it. I was only able to identify her because I knew what to look for...otherwise she would have just kept her (under my breath) nickname of pissy prissy for the rest of her life!!
  22. I'm so sorry!! Been going through the same stuff lately...no way to live. We even ended up in a "treatment center" for a few days. My elderly mother also helps me which scares me to no end!! While at her house, trying to cool off after the treatment center and because he does so much better there, a homeopathic doctor fell into our path. She put him on a yeast free diet and gave us some kind of herbal alkalizer to help balance out his ph levels. Within 18-24 hours he was like a different child...not perfect by all means, but at least bearable. I think between the high-dose antibiotics, not enough probiotics, food compulsions which cause too much sugar in his diet (which feeds the yeast), and Halloween candy he went over the edge. I'm not doing the diet strictly because...well, I have a kid with compulsions capable of raging...so we are doing it as much as we can. It got easier after the first few days when the craving for sugar goes away. Of course, I took him off the antibiotics temporarily, just to get a handle on the situation. I started thinking about his diet and he really doesn't crave foods with yeast in them so I figured it must be the antibiotics. Now the other day I gave him one antibiotic and by the end of the day he started raging again, so I'm not really sure what to do. I have another antibiotic now, but I guess we still need time to get over the yeast so I'm slightly scared to give it to him. Anyway, I got off subject with my concern...sorry!! Just wanted to put this info out there!! I know the desperation cause I'm in it too!! I would never forgive myself if I didn't pass the info on!! At least we aren't scared to be around him at the moment!! I will say prayers for you!! All I know is it sucks to be too scared to put up the Christmas decorations because they will be destroyed and that is how I feel!!
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