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Everything posted by ibcdbwc

  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?
  14. It occurred to me that you may also want to connect with practitioners in Chapel Hill as I'm thinking of one team - a wife psychologist and husband functional medicine doctor who specializes in finding root causes of chronic illness. Again, I have not seem them personally but have heard a few folks have found help looking beyond surface level PANDAS and into more root causes - methylation, gut health, micronutrient... I can only make the referral based on the reference given to me my one other person. But their website did look promising. PM me if you'd like that information as well.
  15. Congratulations for attending Duke! That is an amazing accomplishment! Duke has an established Autoimmune Brain Disease clinic headed by Dr. Gallentine! http://www.dukechildrens.org/services/autoimmune_brain_disease We have not seen them personally but there are folks in the area that have benefited greatly. As I understand it, they don't call it "PANS" nor do they treat lyme but they are most definitely friendly with the underlying theory that autoimmune reactions cause mental dysfunction. There is also a Durham foundation set up by AE families that seeks to educate and suppor
  16. This topic is highly encouraging but also baffling in a way to me personally. My son has done years of CBT and ERP and while the strategies work very, very well for little blips during our flare free times -- a big flare still sends him spinning out of control for at least an initial two weeks. Then we have the PTSD aftermath. He will begin to recognize patterns or symptoms that preceded a big flare -- and then obsess over whether or not a flare will happen again which opens up an entirely new set of problems. Granted my son is older - 15. But what is it about the Rogers program that allow
  17. Thank you Nancy. How long has your son been on lamictal and does he take it continuously?
  18. I'll spare our long history except that DS15 had what we thought was classic PANDAS morphing to PANS. Have had some good stretches of "normal," responses to antibiotics, responses to diet changes (a probable celiac diagnosis), responses to some Methylation... But all in all we still flare. As a teenager he seems to flare sometimes with infection but more now with disruption to rhythm - i.e. camp, exciting weeks, vacation -- where sleep and diet is altered. Pretty much no matter what testing we do or what intervention we add - he still flares. There is a pattern. It's mood shifting. He ha
  19. My son dropped off his growth curve around age 10. It wasnt dramatic. His weight curve dropped from 75th to 25th and his height dropped from 80th to 45th. The doctors told me it was not that unusual around the time of puberty and to not be concerned. At age 12 he continued to stay in the lower percentiles and he had delayed tooth eruption. Prior to this he was one of the early ones to get teeth -- yet now he was late to lose them. Age 12 was also one of the worst years for his PANDAS - it was manageable with antibiotics prior to this. Age 12 was awful. Eventually, he was screened for celia
  20. I just wanted to say you are not alone. We have experienced joyous periods of remission but gut wrenching recurrences. The roller coaster is unreal.
  21. Would be interested to hear more. Keep us posted. I am 100 percent sure that my sons gut issues are a primary player. And we are both rather sick of having to avoid pretty much everything these days. Gluten, Dairy, Soy, Food Dye (not to mention keeping phenols, salicylates, oxalates, and sulpha balanced and in moderation - haha!)...
  22. Am sorry for all your struggles and for your family's struggles too. And yes this process can get very expensive and frustrating. Most of the time, people start the PANDAS/PANS journey believing and hoping that antibiotics are the quick answer to all the troubles. And indeed they can be lifesaving for so many people. The problem of course is that while antibiotics treat the infection, it doesnt treat the immune system long term. One must keep digging to find out why the immune system is so stressed. I do think if you can come up with the funds, then testing for lyme, bartonella, babsia et
  23. I'm sorry you didnt get any responses. This board is not as active as it once was. And many on here are looking for answers as we are still on the journey. Perhaps no answer is the answer? There is no right answer. Every situation is unique. I can say for me, my son was home bound for a while and I was "forced" to stay home with him. We had no other option. No other parent, and no grandparent. Slowly but surely we got him back into school. But I remain on call because you just never know. I do hope you are able to attend grad school. But as for how? I have no idea. There is no way I c
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