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Everything posted by lfran

  1. That's wonderful. We have had symptoms shut off suddenly two times. Once after a major blood draw and once, surprisingly, in the middle of a Chinese restaurant. The latter was really odd, because DS8 had been at a very high level for weeks and weeks and was very high level walking into the restaurant. Then, mid-meal, gone and stayed gone for a few weeks (no meds, no treatment, so hopefully yours will last much longer. == lfran
  2. This is so very sad. I have never met her, but I have read so many positive comments about her from others on this forum. What a tragedy. OMG, it is a horrible thing. My heart goes out to her. She's been through so much already. Susan
  3. Hi all. DS8, PANDAS, has now been on 250 azith for 8 days. I see no improvement -- in fact, I think things are getting worse. Is this part of the sawtooth. or should I be reassessing. We have a 30 day rx. However, just got back first-ever strep titres on non-PANDAS DS6, and they were quite elevated. So, there could be strep in the house that countering the antibiotics? Any thoughts? We have a referral to an infectious disease doc coming through -- hopefully that can help us clear the strep. We are using probiotics with the azith and see no signs of intestinal problems.
  4. Hi all. I was just given oral prednisone for myself (not for PANDAS) and I am having side effects that I don't like -- insomnia and increased thirst and frequent urination. Since I know a lot of people here have had PANDAS kids put on prednisone as a steroid burst, I am just curious what the dosage and time frame and ramp up/down is for the pre-IVIG protocol -- just want to compare it to what I've been taking, since I'm not real happy with my current dosage. I'm probably going back to the doc tomorrow, for clarification, but thought someone here might not mind sharing. Also,
  5. Thanks! I will look into it. What I am hoping is that an adult with PANDAS (or tourettes) or someone with an older child/teen would want to donate blood and then report on whether the blood donation decreases the symoptoms? I'm wondering...could the decrease in blood volume also decrease the level of circulating antibodies and thus depress the symptoms for a time? Anyone think this is possible...or willing to donate blood and report back?
  6. My DS6 is also under 45 pounds (small, but I wouldn't say very tiny) and they took several tubes of blood from him last week with no concern. He handled it just fine. -- lfran
  7. Hi all. Just got some more test results back. My younger son (DS6 - non PANDAS) tested at 343 for ASO and 680 DNASE. He has always been asymptomatic for strep (several negative throat cultures) and PANDAS. DS8 (PANDAS) is currently on a zithromax trial (250 mg per day for a month). Any thoughts on what to do about his brother? Does this sound like a carrier situation? My husband and I will get our blood drawn for DNASE and ASO in a couple of days. Thanks for any advice. -- lfran
  8. Wow -- I never heard of a weight limit for a blood draw. In point of fact, at one point my son had a ton of blood drawn (tubes and tubes and tubes) and he weighed around 67 pounds. BUT, I noticed an immediate and total reduction in tics right after the blood draw that lasted for a week or two. I thought (and continue to think) that the blood draw might have been responsible -- maybe by lowering the total antibody load? Anyone have any thoughts on this? -- lfran
  9. Thank you so much for sharing. It seems to me that you are doing wonderfully for your son, and also for those of us you are sharing with. I have been trying to see if what you posted might apply to my DS8. I recently noticed bony "spurs" or protuberances on the both sides of his nose, right at the top, next to where his eyes are. You can even see them, and they are hard and bony to the touch. Each is about the size of a pea -- maybe a little smaller. Is this related to what you are reporting? Our pediatrician and orthopedist were not too concerned, but also admitted that they really
  10. I'm sure this has been done, but have the other Latitudes Boards been asked/reminded to vote? The "regular" TS board is quite active, I know.
  11. If you can show your doctors the protocol flowchart that Dr. Trifiletti developed (THANK YOU, DR. T!)-- http://pandasdad.home.comcast.net/~pandasd...itand_diag2.pdf -- it may help him/her see what to do and help your doc realize that prescribing antibiotics is part of a protocol. Also, if you can establish PANDAS via the Cunningham test, that may also help. I think this flowchart is an amazing tool.
  12. I'm voting and still recruiting. BUT...the first couple of days I did it, I made a mistake that might be common. I clicked on the VOTE button and then had to log in. Then, once I was logged in, it turned out I had to vote again --- that first "vote" didn't count because I wasn't logged in yet. Anyone else have this problem? I will try it from Facebook tomorrow. Thanks.
  13. When I talked to Kathy about getting my DS8's blood drawn, she said that you don't actually need to use their vials -- as long as the lab you are using has the right kind. Can you get it drawn and ship it overnight with ice packs? That's what we did. Are there any overnight international services? Also, we ended up doing the test when my son was actually at a pretty low level -- simply because we were doing a draw for other reasons and I got tired of waiting. And he was still squarely in the PANDAS camp. So, it might serve as a baseline for you -- but of course, then it's more expen
  14. This flowchart is amazing. It really helped me to see it. Can it be pinned to the top of the forum? Is that something that I can do, or only the list owner? Thanks. Here's also a link to OCD as witness by PANDAS parents... http://www.latitudes.org/forums/index.php?...ic=6153&hl= So, my first question, again, is if he is on antibiotics, which one and for how long now? Also, you can try Ibuprofen. That eases symptoms for some kids.
  15. We're actually not switching. This is our first attempt at antibiotics. I am sooo keeping my fingers crossed that this will be helpful. It seems to me that it's pretty split as to whether zith or Augmentin helps better, so we decided to try zith first. Right now he is on both Augmentin XR (twice daily) and Zithromax (once daily). Strep keeps going around our circle of friends and I'm not taking any chances! Even though I don't like the idea of taking such high dose abxs, it is what works for him. How long? I have no clue. I guess if we have a good 3 or 4 months without a relapse,
  16. That's a good point -- although we are actually doing two weeks of testing, so it's quite a long wait. Still, we've waited 2 years to get to this point, so I guess 2 more weeks won't be so bad. Fortunately, his current tics don't seem to be getting in the way of writing or concentrating, and he's well prepared for the tests, so I'd hate to throw that off. Thanks!
  17. Thanks -- I hate to wait longer -- we've waited so long to get to this point. Is your son on 250 zithromax daily or some other schedule? How long does he/will he stay on it? 30 days or longer or shorter? We were on Augmentin before going to Zithromax (for a break), and I noticed him sliding back. My son is 80 lbs. I felt 250mg was not strong enough (compared to 2000 mg of Augmentin XR). On top of that my other kids caught strep the following week, so I ended up going back to Augmentin, as it was what worked best for him. Now, everyone is different/has a different str
  18. Hi all. I am picking up a prescription for zithromax today -- 250 mg per day for 30 days for my DS8, 70 pounds. Is this about what most of you have tried, especially by weight? Also, how many of your kids have seen an initial exacerbation when starting zithromax? My son starts his state testing next week -- is it likely he's going to get worse before he gets better? Any info would be appreciated. Thanks!
  19. Thanks! I checked out the Got Strep site, but didn't see a contact for Dr. Murphy. Do you have one? And does she tend to be willing to talk to doctors? I have an appointment next Monday. Thanks!
  20. Greetings. Just wondering if there is a treatment protocol for treating PANDAS with antibiotics. I would like to have information to give to my pediatrician about dosage and length of time for zithromax and/or Augmentin. Thank you.
  21. Greetings. I am hoping someone can point me to clinical guidelines that I can show our ped so she will start tx for PANDAS. For instance, azith vs. augmentin, and at what dosage? And what monitoring is needed along with that? DS8 has high DNASE levels (680 highest, 340 lowest) since we started tracking in Jan. 2008. He had positive strep test in July 06, and first tics in 2005. (So pos strep was very likely not first time). Just found out cam Kinase levels are 139. His ASOs have always been below 200. He weighs 71 pounds. I don't know if he fits classic PANDAS, as he has had
  22. Make it four ways. We sent ours in two weeks ago, and were told to wait about two weeks. -- Liane
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