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JPdad

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Everything posted by JPdad

  1. As someone above mentioned, as soon as you go the steroids rout one time, you are ineligible for this study. Also, I seem to recall from my conversations with them that they require you to stay there for a number of days and come back for repeat IVIG numerous times. Even though there wasn't an expense involved with it, the whole thing seemed like a massive time commitment to me that would have been impossible to meet with 2 working parents in the house.
  2. On a related note, I just read an article about a new "Smart Bomb" mouthwash that kills Strep. mutans and is supposed to prevent cavities. I think this would be a very beneficial thing for PANDAS kids. Now, if I only knew where to buy it. Smart Bomb mouthwash kills streptococcus mutans
  3. Does anyone have experience with this vitamin? It caught my eye at the store today. DS6 has struggled for a year with ear infections. They have been his biggest trigger. This vitamin claims: "This irresistibly delicious natural cherry flavored chewable brings the power of K12 probiotics to the inner ear and throat; right where children need it most! Billions of live probiotic cells maintain a balanced ecology in the inner ear, mouth and throat. Reinforced with the cooling, calming, soothing activity of chamomile and mullein extracts, Inner Ear Support supplement offers complete probiotic support for maximum inner ear health." The active probiotics are: L. acidophilus (2 billion viable cells) S. salivarius K12 (1 billion viable cells) Nature Plus Vitamins Anyone have any opinions or experiences with these probiotics? I'm cautious to try it because some probiotics we've used in the past sparked a flare.
  4. Funny, we are going through this right now. DS6 just lost a tooth tonight. He has been pushing at it constantly for the last 2 weeks and had some tics return last week. It's a guessing game to figure out what causes the tics sometime, but losing teeth does seem to coincide with tic increases.
  5. We just went through this as well. Our ENT said he doesn't typically prescribe ABX before surgery, but gave up amoxicillin after. Dr T gave us a prescription for 10 days of Augmentin before. On the day of the surgery we requested the anestheologist do the IV ABX and that was no problem for them. Our son was not in a flare before the surgery and now 3 weeks post op he has been 100% fine.
  6. I don't believe it can cause PANDAS in a child who has never had an episode before, but who knows. As far as ABX goes, try speaking to the surgeon about it. It was standard practice in the past to provide abx before and after a T&A removal. Nowadays they seem to try to avoid abx wherever possible, but you can simply ask for IV abx on the day of the surgery and the anesthesologist should accommodate you.
  7. We are 10 days post T&A for our son today. He wasn't in a flare before the T&A and has remained baseline after it thus far. We did 10 days of abx pre and post surgery with IV abx during. Although the ENT doc didn't think his tonsils were that large upon initial examination, he discovered they were deeply pitted and had white spots on them once he did the surgery. We chose to go the T&A route because after the initial episode which was triggered by strep, he had a bunch of flares caused by ear infections (practically one a month for a year). We are hopeful that the prevention of ear infections plus proph. abx will keep him symptom free for long stretches, but I don't think there is any evidence that it is a 100% cure all.
  8. Yes, we do seem to have similar situations. The first time he got strep, he was so sick and miserable he would not even move around. He just laid on the couch for 3 or 4 days, but had no PANDAS symptoms. The second time he got strep, there was no visible illness at all until the tics and OCD came out of nowhere, which prompted a trip to the doctor who thankfully did a strep test. It all makes me think a certain strain of strep is responsible for this.
  9. Our son recently had a really bad exacerbation with a Coxsackie viral infection. The funny thing is, he had a coxsackie infection before PANDAS and was fine with it. He had strep once before as well with no reaction to it. For whatever reason, the strep infection he got last year set him off somehow and he's struggled with any infections since then.
  10. Dr. T is the one who put us on the Augmentin. DS is currently healthy and not flaring, but has had chronic ear infections for a year. Our ENT doc decided to do the T&A removal in addition to putting tubes in his ears. Hopefully this gets us on the right track.
  11. Our doctor finally decided to perform a T&A removal after 8+ recent ear infections and chronically swollen tonsils. Any advice from others who have had a PANDAS kid go through this procedure? Right now we got a script for 10 days of Augmentin before surgery and 10 days after, plus they are going to do IV abx during the surgery. Are we missing anything? Any other advice or recommendations for the recovery?
  12. The only thing that helps us is getting rid of the infection. Ibuprofin and Predisone help a little, but it's not a big difference and just temporary.
  13. Mom and Dad both allergic to penicillin, nothing else.
  14. Mom was 29, Dad 30 for us. No history of any OCD, tourettes, etc.. in either side of the family. Dad had a bunch of ear infections as a kid, Mom had tonsilitis and tonsils removed when she was young. Mom's side of family did have some history of autoimmune diseases. (Chron's, rhum. arthritis, one nephew with Aspergers). Thus far neither of DS's two sisters (3 & 15) have any PANS symptoms.
  15. The pediatrician was questioning why the PANDAS doc prescribed zith, and why it is being given only twice a week. She feels this isn't going to protect against infections. I know a number of us here get a similar script for prophylactics. Does anyone have supporting documentation that this is an appropriate treatment?
  16. I just got a thorough tongue lashing from my pediatrician today about the course of treatments and lack of communications coming from the PANDAS Doc we consult with. Has anyone else had a similar difficulty? They basically questioned the prophylactic dose of antibiotic we are on, the lack of credentials of our expert, the validity of his practice, and the general lack of communication from him to them. I basically left the appointment feeling they wanted me to chose either them or the PANDAS doctor. Have any of you experienced this, and how did you handle it?
  17. I can only speak from experience, but my son had pink eye 2 or 3 times, and it was one of the few illnesses that did not cause a flare in him. Ear infections, viral infections, strep, pneumonia all do, but pink eye did not.
  18. I'm curious to hear what Dr. T. had to say. All I can really add is that my son didn't have typical coxsackie symptoms either I suppose. He seemed to have a minor cold, then the PANDAS symptoms showed up. When he was negative for strep and ear infections, we ran blood tests and found the coxsackie. He's 8 weeks in right now and still recovering. The acyclovir helped, but it took the full 20 days to bring most of his symptoms down.
  19. Sounds like you got the same dose as we did. For whatever reason, my son's symptoms were way worse, more frequent, and longer lasting with with coxsackie infection than they ever were in the past with strep or ear infections. We're about 8 weeks in at this point, and though he has improved quite a bit, he still isn't fully better yet.
  20. We got to about 80-85% better with 10 days of acyclovir, so the doc gave us 10 more days of it. I believe a 20 day course is a typical treatment for this medicine. Unfortunately we got an ear infection on top of the Coxsackie, so now we have both augmentin and acyclovir going at the same time.
  21. I sent him my story about our dealings with the "PANDAS Clinic" at C.H.O.P. The worst medical experience I've ever encountered.
  22. Maybe ask about getting on a prophylactic abx like zithromax once she is better to try and head off future episodes.
  23. We got a 10 day script for Acyclovir. After 6 weeks of trying Augmentin, Zithromax, Predisone, and Ibuprofin, we are finally seeing his symptoms greatly reduce. We're currently on day 7 of 10 with the acyclovir. They say coxsackie B virus is self limiting and usually goes away on it's own in 10 days, but I think with our kids compromised immune systems it can hang around much longer.
  24. Can you tell us how B12 is supposed to help? I know it is not water soluble, unlike other vitamins, and remains in the body 3-5 years which makes deficiency rare. It is in most meats, so unless you are vegetarian, you should be getting enough in your diet. I'd like to hear more about how/why this helps???
  25. I'm curious as to what you all have seen over time with the length of exacerbations. Do they get longer/worse over time? What was the longest you have encountered? For us, as soon as the infection was treated we saw a 90% improvement in the first 10 days, then were back to baseline shortly after that. Currently we are almost 6 weeks in, with no reduction in symptoms yet. Is it normal for each episode to get worse? Do symptoms sometimes linger long after the infection has passed?
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