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GatsMom

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Everything posted by GatsMom

  1. Great blog and I'm with you on the anti-inflammatory piece. Have you tried the omegabrites that momto2pandas really likes because of their 7:1 EPA/DHA ratio. We switched to the a few weeks ago and have seen some nice gains. At the time it was the only new thing we'd added having taken away abx and antifungals because of the state of his stomach. Enhansa was added yesterday at a very low dose. Your approach makes sense to me and I'm sure sorry for the rough time you've had lately. Hang in there!
  2. We just added organic tumeric to DS13's supplement regimen about 10 days ago, and so far, so good. He's taking so many supplements in addition to the abx, it is difficult sometimes to acknowledge any particular effect as being tied to any particular addition, but he's definitely feeling better and behaving better! Thanks for the blog! Yesterday was our first day of Enhansa (enhansed curcumin supp). I'm starting slow at 75mg once per day. According to Lee Silsby's diagnosing schedule it should be 150mg once daily for the first week but I'm cautious about die off in a kid who already ha
  3. Wow, Michael, I had no clue prevacid had an antifungal quality to it! Gat does well as long as we don't skip probiotics and prevacid. I should mention in keeping with the topic that Dr. T brought up a few days ago, the only time we have reflux/yeast/gut issues is when he's in a PANDAS/PITAND exacerbation. Chicken or the egg?
  4. momto2, I would definitely give a trial to L-lysine given what you wrote above! It gets some good press in the fibromyalgia world where EBV is prevalent. I always have it in my house and at the first sign of anything viral, I ramp it up. I have a 94 year old client who says as a child she and her siblings were made to take it all winter long. btw, thanks a million for the lead on omegabrite! We started on 2/21 after a horrific backslide that forced us to give up Biaxin for myco p. Some days are still way less than optimal but he's tolerating the omegabrites (3 per day) well and I beli
  5. My son will sometimes wake with a brown tongue that can be anywhere from just the back of his tongue to covering it. He reports a bad taste and can tell me its brown before I even look. It always coincides with the symptoms we call acid reflux but that our DAN! doc used to call yeast overgrowth. In my son's current state, if we miss one day of probiotics or prevacid 20mg before bed he'll wake up with it. It's interesting to think that he was dealing with it last weekend and many times during his middle school experience and in neither of those cases were abx being used. In my kid, it's a good
  6. Excellent job on the epsom salt bath! Count that as a score for you. Wow, you're up all night? If sleep is a big issue right now, maybe there is a better time for the probiotics. I was thinking about you today and wondered, since the probiotics have been tough on you in the past that maybe even starting with a very small child or baby's dose. Any is better than none and you can work up from there as your body gets accustomed to it. Keep up the good work!
  7. I'm all about the reward system but there was a point at the tail end of my son's middle school exacerbation where all of the reward in the world couldn't help him to focus of keep from being impulsive. Our DAN! suggested using P5P and L-tyrosine and we also added pycnogenol. All naturals and they worked pretty well for him taking the edge of the impulsivity that really causing trouble in the classroom. We used a blend of the reward system that was geared exactly toward what he was capable of achieving in combination with the naturals and got through 8th grade. Hope that helps.
  8. In the world of oncology, a multidisciplinary think tank like you describe above happens all the time in the hospital I'm affiliated with. It's called a tumor board and all new cases are brought before the board for all to review and comment upon. I happen to be that massage therapist that you also mention who works on patients and families in a tiny oasis inside the hospital. There is every reason to believe that cases like our kids will someday soon be reviewed in such a way, approaching treatment from a variety of angles. There are docs like T & K and the technology exists. We need a fe
  9. Wow. Has to at least have you thinking about Chemar's quote by Pasteur that indicates its less about the microbe and more about the terrain. I have said for 4 years that 99% of what I do for my son is in an effort to "level the playing field" so that his body can right itself.
  10. thank you for posting were you on a high enough dose for your weight? i believe aug wouldn't help at all...zith might, but i not sure if you were on biaxin long enough,depending on how long you had this and your current age.. from what i understand looking at the one study...they did 2 months of abx...and some say 6 months or longer and you may want to rotate other abxs i also understand you may now have some other underlying issues... keep in touch And add LOTS of high test probiotics far away from antibiotic dosing. Have you tried epsom salt baths for pain and anxiet
  11. Hang in there. My dd had one bad day a few days ago and then is back to her new and improved state, over all. A little difficulty here and there but much improved over all. Angela We're having the same experiences as Angela. I know for both my ds16 and I, those backslide days that come after a string of good days are PARTICULARLY difficult. Do your best to hang in there. Her body is doing its best to recover itself and she will forget about today likely far more quickly than you will. So sorry about what you are going through! Been there and tomorrow could be a much improved day
  12. Dr. T, During his middle school exacerbation, Gat failed to have a solid BM for over a year. It coincided precisely with his PANDAS (or, in retrospect, likely PITAND) episode. He was never diagnosed as Crohn's, the DAN! doc attributed it to leaky gut, yeast and inflammation. As he healed, emotionally, his gut healed right along with him. During his 18 month reprieve before this exacerbation, he had no gut or bowel issues at all. The beginning of our current exacerbation brought about the same gut and bowel issues again though they, like everything else, have stabilized in the past couple w
  13. Within 3 days for us and Gat is IgM and IgG positive. I view the cough he was having as a die off or herx to the biaxin but the stomach stuff was really unlike what I'd expect to see in an abx driven die off unless it was treating an infection of the gut. We couldn't have carried on any longer at that particular time even if it was die off without some sort of mood stabilizing meds and serious pain meds for the gut (which would have brought about another whole set of probs). As I've said, I would LOVE to see him give it 7-10 more days on the biaxin XL but I can shove them down his th
  14. I saw that, too, Vickie and Gat would normally be not be considered immune compromised but I will say that when, now and historically, we've done things some small moves to strengthen his immune system he doesn't show any worse for the experience. So far, we've had no negative backlash from the echinacea and OLE (except the occasional burp back taste) but we're only on day 4 of it. OLE started a few days before.
  15. thank you for posting were you on a high enough dose for your weight? i believe aug wouldn't help at all...zith might, but i not sure if you were on biaxin long enough,depending on how long you had this and your current age.. from what i understand looking at the one study...they did 2 months of abx...and some say 6 months or longer and you may want to rotate other abxs i also understand you may now have some other underlying issues... keep in touch And add LOTS of high test probiotics far away from antibiotic dosing. Have you tried epsom salt baths for pain and anxiet
  16. Within 3 days for us and Gat is IgM and IgG positive.
  17. My ds16 was on 7 days of Biaxin 500mg twice daily. This came immediately on the heels of a couple weeks of Azith and 16 days of Augmentin 1000mg XR twice daily. We had to abandon the Biaxin on 2/18. His stomach was a train wreck. Dr. T. promptly called in Biaxin XL at the same dose which is supposed to be easier on the gut buy my son, who has never refused medicine, absolutely refuses to take it. I can tell you that while we were taking it, we started to see good changes in all areas where he struggles by the 3rd day. I was so happy about that but his gut continued to deteriorate. One thing I
  18. So interesting. Gat has long, historically, has long, healthy remissions of more than a year at a time during which he has absolutely no stomach issues at all. The only time he has stomach pain is when he's in a backslide and then the stomach pain is every bit as life limiting as the anxiety. Thank you so much for your continued work and offering hope to these worn out kids and their parents!
  19. My ds16 was on 7 days of Biaxin 500mg twice daily. This came immediately on the heels of a couple weeks of Azith and 16 days of Augmentin 1000mg XR twice daily. We had to abandon the Biaxin on 2/18. His stomach was a train wreck. Dr. T. promptly called in Biaxin XL at the same dose which is supposed to be easier on the gut buy my son, who has never refused medicine, absolutely refuses to take it. I can tell you that while we were taking it, we started to see good changes in all areas where he struggles by the 3rd day. I was so happy about that but his gut continued to deteriorate. One thing I
  20. That's a great report, Angela! Good for you and your family.
  21. My ds16 was on 7 days of Biaxin 500mg twice daily. This came immediately on the heels of a couple weeks of Azith and 16 days of Augmentin 1000mg XR twice daily. We had to abandon the Biaxin on 2/18. His stomach was a train wreck. Dr. T. promptly called in Biaxin XL at the same dose which is supposed to be easier on the gut buy my son, who has never refused medicine, absolutely refuses to take it. I can tell you that while we were taking it, we started to see good changes in all areas where he struggles by the 3rd day. I was so happy about that but his gut continued to deteriorate. One thing I
  22. I certainly don't have the answer to this, but I wanted you to know you are far from alone. The frustration to anger to rage meltdown cycle is one I know all too well. He flies off at any suggestion I make but I am also not allowed to be absent from it eihter. I pace or sit and gently rock. I have several 3X5 cards with everything from Bible passages to quotes from other inspirational texts, all of which speak of maintaining hope and love. I read them over and over again to myself while he goes through what he goes through and look for any shred that I can grab hold of to get me through that m
  23. Angela, Can't wait to hear how she does. Due to stomach upset from regular Biaxin, Dr. T switched Gat to Biaxin XL yesterday. We picked up the Rx today, gave him another full day today of no abx and fighting yeast to try and get a foothold on it. Tomorrow we start XL. My fingers couldn't be crossed any tighter. My son is also a very good responder to Advil.
  24. Yes, there was a cough in our case! Also some occasional chest pain. Also eye pain can be a symptom of mycoplasma. And on it goes, like a club within a club.
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