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becjonz

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Everything posted by becjonz

  1. I wrote the above. I was going to respond about Dr. Kiessling, whom we are still impressed with but appreciate that someone pasted this here. I will say that my son has only been treated with abx and there has been no discussion of IVIG. This is even with a possible allergy to penicillin and zythromax which has prevented him being treated with abx for the past several months. Instead he has had increased psych meds (which I'm weaning him off of now that school is out) and we are seeing an allergist to resolve the allergy question. Thankfully my ds' PANDAS is at a manageable level, not as i
  2. I had planned to continue to log in to vote for them. We couldn't have made it without them so we need to pay that back.
  3. And then the camera pans to a very large group of kids with PANDAS all cheering and jumping up and down. The commentator then talks to a doctor over satellite connection and says "now I thought you said that PANDAS was a rare disorder..." and the doctor is left sputtering, having nothing to say.
  4. Well, I wasn't checking until I read your post and now I can't help myself, LOL. I'm going to have to just go to bed and hope we hold strong for the next 2.5 or so hours. Susan Lol,I won't go to bed until it is official. It is forcing me to work on my preparing for my yardsale while I wait to see final results.
  5. I keep trying to do other things but keep finding myself opening up the PANDAS Pepsi Refresh page in order to be sure we are still safe. Logically I may know that we aren't going to drop that much but I can't help checking. I'm starting to relate some of our kids with OCD.
  6. I posted earlier in the week about the quick decision to take my DS' tonsils and adenoids out. We did go through with it this morning. The doctor felt on Monday that his throat looked real good but said prophylacticly it was a good decision as a way to reduce PANDAS exacerbations. After surgery dr. said that while they had not appeared to be swollen prior to surgery they actually were rather large just oriented strangely so you couldn't tell. Also the whole back side of them were covered in pus pockets filled with infection. I'm so glad that we decided to go through with it. He
  7. I didn't do anythng to prepare other than send out press release that Beth Maloney had sent out. The reporter took our story but as far as medical info they really can't take that from us, they have to speak to a dr. for that so I would say just tell your DS' story. The reporter that interviewed us contacted the specialist my son sees and also contacted Beth Maloney since it the interview mentioned watching Mystery DIagnosis. It was a thorough article because of this. Maybe you could just have some links available to give him/her and your doctor's number.
  8. He has not been tested but has strep multiple times per year as well as is on antibiotics quite often. Hmmm...I'll have to think about this. I've wanted all of us to get tested....Also it doesn't seem as though as he is as sick now that he no longer lives with us and between the kids and myself being a teacher that could have been a factor. I guess this is one more reason to push for the family being tested.
  9. That's awesome. Not a strange measure...so many of us know it is the little things that only we would know but are milestones for our kids.
  10. I'm not but would be curious where in CT. I am in RI and I'd have to guess this is probably more western CT but if south eastern I'd be very interested.
  11. This was my thought exactly...PANDAS with an expectation of out growing it to a lifelong sentence of bipolar. Hard thought to adjust to. Hopefully PANDAS will be the extent of it for our kids.
  12. I don't know how it works where you are but the tests are always done by a lab affiliated with our local hospital so I wait the week that it usually takes for the AntiDNAse B to come in and then go and fill out a records request at the medical information office of the hospital. As his parent they need to provide me with with a copy of his medical records. It costs me a quarter a sheet but is totally worth it to me to have all the lab work in my binder. (it is a good thing too as I have not been called by either of his doctors with lab results any time that he has had them done.)
  13. I too was brought to tears upon reading your post. First of all, you are an amazing 15yo! I wish you had the support that you so deserve. As a parent I know I don't always do this PANDAS thing right. I still get frustrated some days with my DS' behavior towards his brother and I've lost my patience. I also really cringe when I think back to some of the things that I said or did before I ever knew it was PANDAS. I can't change any of that but I can try to remember and try harder in the future. Hopefully your mom will realize that she let her frustration or anxiety over money get the bett
  14. Thank you for all the feedback. I really needed that support tonight. LLM- Your post is what makes this board so amazing. For some reason I am still surprised and awed by posts such as yours that show the wonderful caring and support this board provides. Yes, we are the ones that have the T&A on Friday, So you are right I need to focus there on getting him through that and moving on safely from that. I am going to call the ENT tomorrow regarding what abx he can safely take following the T&A. Also my son's specialist who dx the PANDAS is a pretty no nonsense woman so I gues
  15. My son's therapist just called and I had sent her the charts that I was using on my son. I had been trying to make sense of the ups and downs that I was seeing. He would be totally hyper one day and then the next low. Well therapist just questioned if those real high days of activity are really PANDAS, instead she is going to call dr. to consider bipolar. My heart is crushed right now. My soon to be ex is bipolar and it has been so hard for him to successfully manage it. Right now it is making PANDAS look like a fabulous diagnosis, can't I just keep that one. THis probably is incohe
  16. Thank you to everyone for your input. I think what had my head spinning last night was to have a.)a doctor who didn't need me to educate him on PANDAS and b.) recommended treatment to help him. Sad that I have come to expect so little from doctors and instead feel I need to go into battle with each new person. But many of you have helped me see it a different way too--- DS has never been the sick kid in my house, my younger one? Geez he has had it all and used to spend from Oct. to April with one infection after another, snoring, always tired so for him I took him to the ENT seeking the
  17. BTW his tonsils and throat looked fine today. Also DS10 is doing lots of I told you so's since he has been asking for this surgery since he felt one would help reduce his chances of strep. lol Maybe someday he will grow up to do research about PANDAS.
  18. Went to allergist 2 weeks ago, he didn't believe in PANDAS but he did say I should take son to ENT to take a look at his tonsills. Went to ENT today, he knew of PANDAS and said it is best for PANDAS kids to have tonsils and adenoids taken out to help reduce infection. AND he had time in his surgery schedule on Friday! I still feel hesitant about this. I just don't like the idea of doing unnecessary surgery. He kept saying that was wrong, it is prophylactic and I get that but prophylactic abx is one thing, surgery is another. Also as some may remember my son has had possible allergic
  19. Someone else mentioned using home strep tests as a kind of quick check when you know of exposure before calling the doctor. That of course sent me on a bit of a search. The original poster said she had entered her medical lic. # to order them but thought other sites might not require that and as it turned out Amazon has them! So I went ahead and ordered and figure they are good to keep on hand. There are many options available but for me this seemed to be a good economical one to try. http://www.amazon.com/gp/product/B001DD04SQ/ref=oss_product
  20. I know! I was so excited It is looking soooo hopeful
  21. I thought the episode was good. I think it accomplished the goal of bringing awareness about PANDAS but it did that in the framework of Mystery Diagnosis. This show's purpose is to showcase an individual's medical mystery and make it as dramatic as possible in about 20 minutes worth of time. Yes, they do also bring awareness to little known medical conditions but it is not the primary focus to educate on all aspects of the medical disorders or diseases. I'm happy that this episode has and will continue to act as a catalyst to bring awareness to the uninformed and understanding to our fam
  22. This is on Discovery Health not just regular Discovery so that may be impacting everyone's ability to find it on their tv listing. I do plan on having DS10 watch it. If I said no he would probably be much more upset. He has told everyone to watch, he has been eager to see it and set the DVR himself. I read Saving Sammy and while I'd never allow him to read that because I wouldn't want him to feel anxious or worried about the impact on the family, he did read the opening letter to the doctor that chronicles Sammy's behavior. He has a good handle on the idea that Sammy had a severe ca
  23. I'm having to copy and paste the article rather than link it since my newspaper only has it online in the pay version. This is taken from The Westerly Sun in RI. My son is so thrilled! They put the article on the front page, above the fold! Family pushes for awareness of strep-induced disorder ■ Discovery Health to feature a special program on PANDAS. By NANCY BURNS-FUSARO Sun Staff Writer A S A BRADFORD SCHOOL Special education teacher, Rebecca Jones is used to observing the behaviors of young people. So it was no surprise that she was able to identify symptoms of mild At
  24. Where did you get the press release? I got it from a mailing that Beth Maloney sent out. A mom in Texas that works in media made it up as a way for those of us who don't know what they are doing to have a leg up when contacting the media. It worked because I had tried last month on my own in order to help with the Pepsi Refresh voting and got no repsonse from the same newspaper. If you PM me your email I can send it to you when I get home this afternoon.
  25. I was interviewed this evening re: PANDAS by a local reporter. I had used the sample press release that Beth Maloney sent out and sent it to a soft hearted local reporter. SHe called tonight and DS will be having his picture taken tomorrow. He has been all for spreading the word to others and so as soon as I told him who had just called he said "I love you" No matter what sh&t my ex gives me for doing this will be worth it to make ds happy. This comes after an appt. earlier today with a doctor who basically told us he doesn't believe PANDAS exists. I was well behaved- smiled an
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