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ibcdbwc last won the day on October 12 2016

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About ibcdbwc

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  1. Very helpful! Thank you very much for putting into words my exact thoughts. I was not able to articulate the issues at hand and you were! Appreciate your time and all you do to support parents on this board! I think ACT is a very important concept and I will talk to our psych soon about these issues.
  2. Hi All, I have a 16 year old who had done very well for over a year until October of this year. He had a major flare (despite prophylaxis). Came out after 2 weeks and after 1 week re -entered another flare. That lasted 2 more long weeks. He has again been out a week and we look to be headed back in soon. He's getting more and more nervous as he fears the flare. I should add the flare is awful. The weeks where he is "out of the flare" were still full of more mild anxiety - but he could function and he could think. Helooks sick physically and mentally. I need help with ERP suggestions
  3. Okay. I am also hooked. What happens next? Of course we are all hoping for some grand, magical happy ending.
  4. FWIW my DS15 does get headaches with flares. But he also gets sinus infections each time as well. Hard to tell what is sinus related, what is migraine and what is pure inflammation. We have thought migraine because he has sort of an aura prior to the onset of a flare - he also gets more light sensitive such that sunlight hurts and "screens" cause discomfort (and of course he normally he loves his screens). Back in our early days, he did not complain of headache but he has always been sensitive to things like rides at a fair or a trampoline. Flare or no flare, these things make his he
  5. There is a test called Gene sight that you might look into. I honestly don't know much about it as I haven't done the research. But i was willing to buy into the idea to eliminate some of the trial and error mess. We were prescribed zoloft at age 8. It was horrible. Sent him into a frenzy and we took him off after a week. This was pre-pandas diagnosis of course and we didn't start the dose "obscenely low." The pill also has dye - which we later found out causes hyperactivity in my son. So it could have been other things that caused his negative reaction. Fast forward to age 12 when we
  6. Thank you for all of your helpful comments! I appreciate your advice. Sirens - what do you mean by full set? His test did include coin factions.
  7. Thanks so much! I agree. It's probably best to wait for the Igenex. Yes he's been gluten free for several years (though I'm betting he gets a lot of cross contamination at school).
  8. We were doing well for a long stretch but have started to get monthly sinus infections and flares again. IgE is 600 now. Subclass IgG3 is 8 (quite low). Igenex pending. Currently on Ceftin and responsive for now but I fear a breakthrough flare. Flares are classic PANS flares (OCD through the roof) with severe slowing of cognitive processing skills. Gut health also an issue with positive celiac antibodies and major histamine issues, constipation at cetera. MTHFR 1298 homozygous.... (we are also in therapy) We see Dr. L who wants to do tonsillectomy (despite negative strep titers/tests - the
  9. Thanks for your replies. The memory issue persists despite decreasing more mild levels anxiety - however he's certainly still anxious and filled with extraneous thoughts during this time. So it could very well still be that the anxiety is taking the place of a working brain. But its more long standing. It does seem like a two week seizure with a aura - event - post ictal type pattern. I do recall in 7th grade when he was in a particularly bad place that i asked him to draw a clock like the Brain of Fire woman. My son could draw a clock but he drew bicycle spokes all over the face and did n
  10. We've been doing okay for a while now such that DS15 getting good grades in his classes. Did well spring of freshman year. Unfortunately we entered a huge flare this past weekend. Panic, anxiety, OCD - alot of which stems now from not wanting to enter into another flare (PTSD). It's scary and he freaks out when he knows he's going into one. Starts with "thoughts are back." Progresses to 3-4 days of insomnia issues which then progress to days of better sleep but continued more mild OCD with steep cognitive decline. Our biggest problem is and has always been his memory deficit after the
  11. I don't know how to help you or your son. But wanted to say my thoughts are with you as you navigate this horrendous journey. Surely there is a lesson for us all somewhere on this path. I'm still looking and learning after all these years. I just cant imagine how difficult it must be for a teenager (my son is 15) to face these misunderstood debilitating symptoms. As if being a teenager were not difficult enough. Good luck to your son tomorrow. That first step is indeed a giant leap!
  12. Hi Everyone, Just a random thought today. Has anyone tested NEGATIVE for Lyme through Igenex? That's my skepticism re: big money tests. BUT I am definitely a Lyme believer and realize that testing is just one part of the puzzle. Many cases must be diagnosed clinically as well. Just curious regarding reliability of Igenex.
  13. Thats such fantastic news! Are your sons on any other supportive supplements? antibiotics or probiotics? still using digestive enzymes?
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