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peglem

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Everything posted by peglem

  1. How cool!
  2. I'd keep the appointment and a month before, decide if this is something that could help at that time. You have no way of knowing what you'll need a year from now. How ridiculous...making kids with developmental problems wait a whole year for the help of a specialist! A year in the life of a child is a very long time w/ lots of changes...I bet they seldom see new patients that still have the same problem they were referred for.
  3. My daughter's T&A produced her worse exacerbation, ever. But we didn't know we were dealing w/ PANDAS yet and didn't know the strep was intracelllar. She was on antibiotics prior (the wrong one, I think) and had a standard treatment course of amoxicillan afterward...but no abx treatment for several months after. So, I would recommend from our experience that you do as much as you can to eradicate the strep before hand and be sure to follow up with good abx after.
  4. I would definitely pursue PANDAS here. BTW my child always has PANDAS flairs with dental work! This flowchart may help in figuring it out: http://www.latitudes.org/forums/index.php?showtopic=6688 Also, take a look at the pinned "helpful threads" post at the top of the forum. Its a lot of info, but should give you a better idea if you are dealing with PANDAS or not. And, of, course, we will respond to any questions you have along the way!
  5. It looks like those we are supporting are moving up, while we stay the same. Hmmm. As long as we stay in top 10, I guess it doesn't matter.
  6. So nice that your son found his smile and can share those moments again. I think with the health worries and more severe symptoms we frequently don't notice when these things are gone- But we notice when they come back.
  7. I think you need more than an explanation. Whatever the reason for the rages, they are going to want to make sure you can keep your kids safe. You need a plan you can show them- to reassure them that the situation can and will be handled. This has not happened to me so far, but I have been afraid of it happening since Allie was younger.
  8. Allie has never cultured positive, but the only times anything has been sent for culture is when the rapid is neg. She's had tons of positive rapids!
  9. Somebody should put the stuff in gel caps, for crying out loud!
  10. Except for Saturday w/ cramps- Sunday was pretty good and Monday has been great!
  11. We're doing another 1.5mg/kg this thurday and friday...
  12. We saw a down turn on Saturday...kinda horrible episodes of (tics?) smashing her elbows into her hips. Of course, I was scared that it was all coming back again! That evening she started her monthly though. And no matter what I gave her for sleep- she just COULD NOT sleep- kept moving just as she'd start to drift off- and she was so exhausted and frustrated that she couldn't sleep. I wasn't too happy myself! Finally, I held her still and she fell asleep at 2:30 in the morning. Sunday, I kept her on ibuprofen all day, and some valium, occasionally. She would start her fixation-on-object-that-is-throwing-me-into-a-panic thing, but I was able to talk her through it every time, and get her to redirect herself. Today- not a single problem! Only 1 dose of ibuprofen this morning and no valium all day! So, probably cramps with a PANDAS twist- but I can deal with that once a month for a day or two!
  13. i did the exact same thing!!! Something I want to take a look at more when I have time.
  14. I'd try either zithromax or augmentin- treatment dosage. You said he has ups and downs...when he has the downs, try prednisone. But, if you see improvement with abx, that's a clue that bacteria is playing a part. When you do get to see Dr.L, response to abx and steroids would be good info to have for her.
  15. Yes, those are the antibodies. But, it isn't known yet what else may raise Camk activity. Risperdal does affect dopamine- though what effect it has on the cunningham tests, I wouldn't know. I know that Allie still had BAD exacerbations while she was taking risperdal. She was not on risperdal when we did Cunningham tests- D2 was elevated at 16,000, the others were w/in normal range. Please note, this is all my understanding only...I keep hoping somebody will come along and correct me or confirm.
  16. My daughter's inflammation markers are always normal too, but she had a very high CamK activity level (242). There's probably a good Buster explanation of the Cunningham test here somewhere, but I can't find it, so let me just try to explain as best I can. CamKII is found inside nerve cells (and other cells in the body). When certain cell receptors are activated, CamKII facilitates the response inside the cell to pass the impulse on to the next nerve cell. What Cunningham found is that there are certain strep antibodies (not ASO or AntiDnase) that activate receptors on nerve cells and cause CamK to be overactive. So the cunningham test looks for those strep antibodies in the serum and measures how much CamK activity the serum produces. Simply (over simply probably), The CamK test measures disregulation of dopamine.
  17. or let them visit me since I am a teacher and exposed to it all. lol I was a kindergarten teacher throughout most of Allie's childhood. I quit teaching 5 years ago so I could take care of Allie.
  18. Thank you, Betty! I'm not one of those who wrote the lot numbers down- but I will now. I wonder now-Allie took such a dive after her April low dose IVIG we are getting gammagard), but has improved since her May high dose. We're doing another high dose this Th & Fri, so I'll check w/ the nurses to see if she got one of the recalled lots.
  19. CamKII seems unrelated to ASO and AntiDnase. I believe CamK levels fluctuate w/ symptom severity...those who have tested both during exacerbation and remission have found higher levels during exacerbation. Some children never get rises in ASO and AntiDnase titers, despite multiple positive strep cultures. Really, the information gained from those titer levels is very limited...and those antibodies are not the ones that cause symptoms.
  20. She took a valerian root pill tonight. She didn't like the smell/taste but I told her she must take it for a wile to see if there is an effect. If you don't have much of an effect with one capsule, try 2. My 100 lb daughter does well with 2 450mg capsules. If it works for her, I'll bet she'll take them voluntarily. The relief from symptoms can be pretty dramatic.
  21. I believe the "pediatric" means pediatric onset. Sorry. But, in adulthood exposure to strep, theoretically, is greatly reduced (don't let your children become school teachers!). Also, though, the immune system matures throughout childhood, according to what I've read in the literature. On the other hand, PANDAS seems to screw up the immune system, so who knows?
  22. Well, My daughter's pediatrician and I believe that her rather severe autism was caused by PANDAS.
  23. And now #9!
  24. I believe the donor IgG lasts about 4 weeks.
  25. Isabel, How are you guys doing today?
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