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cara615

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cara615 last won the day on June 3 2016

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  1. We did an OAT test to determine the level of bad bacteria and yeast in DS's gut. Once we started him on BRAVO probiotic and his gut cleared up (we retested with the OAT) all his vocal tics went away. We are not dealing with any other PANS symptoms at this point in time.
  2. No herxing at all. I give it right before Breakfast and right before Dinner. You can order from iherb.com - the brand name is called HISTAME
  3. Its been a bit since I have posted on here but wanted to give an update. Last I posted we were experimenting with a steroid burst which was highly effective but not sustainable. Recently I heard of something called DAO. Its Diamine Oxidase and is an enzyme that helps the body process histamine. My son has always shown increased tics after eating, going outside, exercise, stress, excitement and infection (of course). We have been infection free for a while now. Titres for all the major infectious triggers are all normal for him. His gut dysbiosis is now in check. But we still struggled with
  4. For us the steroid starts working within hours and the effects last for over two weeks (without a daily anti-inflammatory). This most recent burst (we only did a 2 day burst) we added in daily Mobic and we are approaching 2 weeks with 95% reduction in tics and maintaining. Each day it seems to get better and the only spikes in tics i see are after i give him his abx (which is concerning to me).
  5. Thank you all for our very insightful replies. I know allergies are a part of the picture for DS and as such he is on twice daily Allegra. I know its helping but I will inquire with his doctor about something more effective. Right now, the steroid is still effective and the daily Mobic plus CBD oil is keeping inflammation low. He still has tics but he is back to 90% baseline I would say. Let's see if we can keep him like this for a while. Am I right in assuming that if I quiet the glial cells in his brain it will give them time to heal?
  6. I totally understand that. We do plan to test for those soon. Didn't want to take blood from ds on Monday because we didn't want to stress him out too badly. But if he had active infections of any kind wouldn't the steroid make it worse?
  7. We tested negative for Lyme (no IND bands either ) but on Lapcorps Western blot. However, I would think that if he had Lyme then the steroids would have made things worse.
  8. We checked titres for strep, myco P, EBV, coxackie, and H. Pylori. I realize that he could still have another type of infection albeit bacterial or viral but its like looking for a needle in a haystack and putting him back on daily zithro made things worse! I wonder why that was?
  9. What could be the cause of my son's inflammation if he does not have an active infection? Last we tested, all his titres were back to normal. His gut health was much improved and clostridia was gone. He takes Allegra for allergies but yet still has so much inflammation. The steroid I gave him this weekend proved it was inflammation because it reduced his tics by 95%. If he had an underlying infection I would think that the steroid would have had the opposite effect. Will we ever get to the bottom of it and be able to quiet his immune system? Does it just take time or will we need IVIG.
  10. I am in no way an expert on this but i thought I'd offer my basic knowledge since I just gave ds steroids this weekend. From what I was told and have researched, if there is an underlying infection then the steroids could make things worse because they lower the immune system and allow the infection to take a greater hold. So before giving steroids and also during, the patient should be clear of infection or at least on abx. It looks like your son has been and continues to be on abx so that is good but does he still have an active infection? If so, then the steroids may not make things better.
  11. Ok here is an update. I gave DS 16mgs of prednisolone on Sat and another 14mgs on Sunday. Today is Monday and his tics are the lowest I have seen them in 2 years. I won't say tic free because there is a tic here and there but I will take it. We saw Bradstreet today and he feels we can manage ds with Mobic daily to keep inflammation at bay and if tics do break through, give him another dose of the prednisolone. He is not against having to use the steroid every 2 weeks if we have to. I am hoping we can keep him under control for longer than that with the Mobic. We will see. If this plan does
  12. Do you think I should continue the daily abx? Was it a herx that made his tics go crazy?
  13. So if you read my last post, ds has been flaring for 3 weeks now and I started him back on daily abx (he was on prof abx). Within 2 days his tics got severe. He couldn't stop nodding his head and blinking. It was constant. No time in between. I remembered that I had some prednisolone in the house unused from when he had the croup. I gave him 16mgs. Over the past couple of hours all his tics are resolving. Its slow going but it keeps getting better as the hours go by. What does this tell me? That it totally is inflammation? I'm thinking of just going back to the abx on a profylacti
  14. I think he is beginning to respond to the abx. Fingers crossed!!!
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