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Everything posted by Worried_Dad

  1. Hi, y'all: We decided not to try the MaxGXL on our son yet. He's currently in the midst of his worst PANDAS flare-up ever, we're trying (per doc advice) prednisone and zithromax, and we're just afraid to throw another variable into the mix. We're now scheduled for IVIG treatment in 3 weeks, so we're praying that will make a difference. I'm using myself as a guinea pig for the MaxGXL right now. After IVIG, we may try this for our son. If so, I'll definitely share the results here. Sorry!
  2. I LOVE your idea of listing what works and what doesn't in one topic thread! When we get through this, and our son's doing better, we plan to look back and try to figure out what we can recommend to others with a clear conscience. Right now, the prednisone steroid burst clearly helped more than any other one med, supplement, or therapy so far. We finally got a prescription for another round of this, starting tomorrow morning. I'll let everyone know how it goes. We're scheduled for IVIG on Oct 3 and 4 in Chicago. We're pinning all of our hopes on that right now, to be honest. BTW, throughout our son's long months of insomnia and sleep problems, melatonin along with desyrel were the only things that seemed to really help. That combo finally stabilized his sleep cycle after 6-7 months of terrible, long nights and all-nighters. And in case any docs are giving you grief about the "reality" of PANDAS, thought I'd share this: my son was accepted into a PET scan study back in March. Even though his symptoms were waning at that time, the scan showed inflammation in his right basal ganglia. Seems pretty "real" to us! Best of luck to everyone. All our kids deserve a break!!!
  3. Yep, we've tried SAMe along with about 2 dozen other supplements. Our main doc is very into complementary medicine, and we were happy to give everything a shot to help our son. Nothing has made a noticeable difference so far... but hey, it's got to be good for his overall health, and the anorexia issues make malnutrition a real possibility. Our main doc just suggested MaxGXL, so I ordered some of that. Don't want to introduce it right now, with the prednisone and augmentin, though; too many variables. We did ask Dr. K about an extended "tapered" dose of prednisone and he said it's worth a try, so we're working on that with our local doc. After 3 days of major improvement on the prednisone, our son's symptoms regressed a bit, which is why we wanted to try it a little longer. (I have Crohn's disease, and I remember what a big help prednisone was to me during major flare-ups.) We're scheduled for IVIG with Dr. K first week of October. Man, are we praying that that does the trick! I'll keep posting updates as things progress. Thanks, everybody!
  4. Hi, EAMom: Thanks for asking about our son's condition. It's been an emotionally exhausting couple of weeks, but we are seeing signs for hope. We had our phone consult with Dr. K last Wednesday, and he recommended we switch from the zithromax to augmentin (500 mg twice a day for 2 weeks, then 500 mg daily after that). He also recommended a 5-day "steroid burst" with prednisone (30 mg each morning). So we started that last Thursday. In the first 2 days, our son's improvement on the steroid burst amazed us. He's still not out of the woods - still paces constantly and has pretty serious OCD contamination issues - but he's much improved from a week ago. Dr. K said noticeable improvement with the steroid burst would "double-confirm" the diagnosis of PANDAS, so I'd say there's no doubt now. And yes, we were on prophylactic amoxil until a couple of months ago, when our local doctors advised us to discontinue the antibiotic because there was "no demonstrated benefit" for PANDAS. So a month and a half after stopping the amoxil, he seems to have gotten reinfected, and the symptoms flared worse than ever. How I wish I could go back in time and change that decision!!! We're still hoping that the continued augmentin use will further reduce his OCD symptoms... but, for now, we're just relieved at the improvement. He laughs, jokes, and talks with us again, and that's major progress! We're planning to move forward with IVIG treatment, as Dr. K (and others) have told us this is our son's best shot at avoiding future infections and further damage from the brain inflammation. Insurance probably won't cover it, but we feel like we have to try it. We'll keep everybody posted as things progress. In any event, the prednisone seemed to reduce the inflammation and make a big difference in our son's symptom severity. Take care!
  5. Hi, EAMom: Please accept my apologies - didn't mean to imply that this disease is any less traumatic for younger kids and their families. I'd just read some articles that said younger kids seem to heal faster and more thoroughly (on average) from the brain injury. I guess what's really breaking my heart the most right now with this latest flare-up is how our son clearly recognizes that his OCD thoughts and behaviors are completely irrational, but he can't overcome them. He breaks down in tears and apologizes over and over... which just rips me up. We are SO desperate for some positive signs right now, and really clinging to the hope that the zithro will help. We'll definitely try the Advil, too. Makes perfect sense that this might help with the brain inflammation; it's an NSAID, right? We'll let everybody know how it's going as we get further along with the zithro. Thanks for the advice, everybody. These online forums are sanity savers!!!
  6. Our son's primary doc (who's very into complementary medicine) recently suggested that MaxGXL might be a valuable supplement for PANDAS kids. It's supposed to help the body stimulate production of glutathione (GSH). Some healthcare testimonials on the site mention using it to help heal brain injuries (like the basal ganglia damage PANDAS causes). I actually ordered a one-month supply today. Figured it's worth a try, at least. Has anyone else tried this? Any positive results?
  7. Hi, CP: This latest flare-up is terrifying me. He was very emotionally unstable and oppositional a year+ ago when he first go sick, but that had improved dramatically until the past week's flare-up. Right now, he knows that his brain is betraying him - he recognizes that his thoughts are totally irrational - and it's completely demoralizing him. I don't think he believes he'll ever get better, and in the past few days (for the first time ever) he's said on a number of occasions that he "can't live like this" and "wants to die." My wife and I are really scared - took to hiding some of the meds just as a precaution. He hasn't really copped too much teenage attitude yet, but he argues with us often and "no" or "I can't" are common phrases from him. We're more concerned about the depression. I could be completely off base, but it seems to me that kids who are stricken with this when they're older face a tougher time because they understand that something is very, very wrong with their brains. Our son's brain was always a source of strength for him (did well in school... wants to be a physicist!) and now it's completely turned on him, and he knows it. I feel utterly helpless: other than trying to stay positive and reassure him that we'll find a way to get him better, I can't do anything to reduce his misery! Hope you have better luck soon. Take care!
  8. Hi, y'all: Pudgeo, our 12-year-old son got sick at almost the exact same time as yours - in March of 07 after a high fever. He was originally diagnosed with acute rheumatic fever with Sydenham's chorea, and we were told that his brain would heal on its own eventually. We'd see steady (up and down) improvement for months, then suddenly the symptoms would resurge for no apparent reason. He missed the whole last school year and did homebound schooling, but even that didn't work very well. As you said with your son, our son is a completely different person now. A week ago, he went to bed doing quite well and woke up the next morning in a total emotional meltdown with OCD symptoms far worse than ever before. We're heartbroken as well, and searching for any way to help him. Found this forum and have been reading posts voraciously to learn about others' experiences. Based on the posts here, we convinced our primary doc to write a prescription for 4 weeks of zithromax, which we started a few days ago. We're praying that this will help (no improvement yet). Also thanks to info on this forum, we set up a phone consult with Dr. K from Chicago for this coming Wednesday. Nobody in our area really seems to know much about PANDAS... and, of course, a number of docs dismiss it outright as "bunk." (MAN, that infuriates us!!!) I'll post to share our experience as we get further into the zithro course and after we talk with Dr. K. I've already found more useful info on this forum than from all of the docs we've seen so far, so thanks to everybody who's shared here! Indigo, we share your family's pain and hope you find the right treatment to help your daughter. Hang in there, and best of luck!
  9. I downloaded the presentation - very enlightening and educational. Thanks for sharing this! It's amazing how many doctors - despite what our kids are going through - still refuse to acknowledge that PANDAS even exists. It's nice to be armed with solid information!
  10. Wow - thanks, everybody. We appreciate all the positive comments and good info. My wife and I are already poring over some of the threads about protocols and what's worked for others. We're really hoping Dr. K can put us on the right path, too. Thank you very much for all of the help!!!
  11. I'm new to this forum, but have already found it very helpful. (Been hanging out on the wemove.org Sydenham's chorea forum, because our son was originally diagnosed with SC. Great folks there, very helpful, but PANDAS seems to be the prevailing diagnosis for our son now.) My 12-year-old son was diagnosed with acute rheumatic fever with Sydenham's last summer (2007). The violent seizure-like twitching episodes and tics have subsided, but the OCD-type symptoms seem to be getting worse. Our psychiatrist started him on Zyprexa about a month ago, certain that it would significantly reduce his obsessive thought patterns. We were willing to try it, hoping to stabilize his condition before school starts this Fall. (He missed all of last year homebound.) This morning, he had his worst OCD moments yet, washing and sanitizing his hands for about an hour straight. When we tried to get him to stop and eat something (he's been almost anorexic for a couple of months), he broke down in tears, saying he couldn't stop and couldn't help it. We feel pretty helpless. Has anyone else had experience with Zyprexa? The doc who originally diagnosed our son's condition is more focused on complementary medicine, and we've been rigorous with lots of supplements (B-complex, B-12, D, SAMe, various minerals and multi-vitamins, etc.) for a year now. We always hoped to avoid the psych meds, but at this point we just want to find something that helps him feel better! We're very grateful for any advice. P.S.: Thanks to the wonderful info on this forum, we're setting up a telephone consult with Dr. K. Maybe he can steer us in the right direction!
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