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ibcdbwc last won the day on October 12 2016

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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 because his primary OCD right now is scanning his body to "check" for a myriad of symptoms. He's so tuned in to how he feels before a flare that he's constantly checking and seeking reassurance. I think he might actually throw himself into these flares for lack of a better term,. He has enough physical symptoms (bloating, constipation, flushing, ear popping, joint popping, neck pain, fatigue, hair thinning...) and it all reminds him of the flare and boom - anxiety up-- which then equals another flare. He has a psych who has been doing some CBT. We have a functional medicine doctor looking into all his gut issues. We have a PANDAS specialist who is recommending IVIG. We will address this later this month. I just feel like we are in a loop and I don't know how to get out!
  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 head hurt. The headaches with flares started after puberty.
  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 tried Prozac. It had almost an immediate calming effect which was wonderful. However, he became oppositional and somewhat suicidal within a few weeks. We were at very low doses -- but he also had just had a fever and some terrible stomach virus at the same time. Again - may have been other things that caused the negative reaction. But... We recently did GeneSight which confirmed that we should stay away from several of the SSRI meds due to a gene that has trouble with serotonin transport. However a few of the newer SSRIs and some of the SRNI's should be okay for him. We have not tried that class again yet, but we are on low dose lamictal. I am not sure it is helping but it is also not hurting. The Gene Sight test can at least help you narrow down the choices. I am not against psych meds at all IF you can find the right one to offer relief. I think they've helped a great number of people.
  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 - they were positive in younger years) followed by HD-IVIG. Looking for a great functional and/or second opinion doc first? Who do you recommend? Dr. O- hara? We will travel anywhere.
  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 not draw any hands. I later learned that this is seen in dementia. So yes, there is definitely an inflammatory process at play. At this point its hard to tweeze apart what comes first. His anxiety is largely due to feeling like he's indeed losing his mind (again). Which brings on panic. His compulsions spiral out of control. His view is opened up and he has floods of memories of past flares. His perception is both MORE finely tuned to the world around him yet at the same time negative ("I cant make eye contact. I don't have social skills...") Typically he doesn't really care. I have yet to find a therapist that can assist us in dealing with such a tangled mess. I am uncertain about which route to take next. I am not certain that IVIG will do much more than make this traumatic experience worse. If we do this, we will likely need to drop out of school which we will probably have to do anyway given the increasing severity. Thanks for your ears!
  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 initial insult. It lasts a good solid 7 days. We are now on lamictal low dose but that has not helped this issue. We do zinc and anti-inflammatories - doesn't help too much. I tried taurine as suggested by Nancy on this board but that didn't seem to agree. Last week he got perfect scores on honors chem and pre-cal tests and wrote the best essay in english class as stated by his teacher. This week - he can't do double digit multiplication. I've spent the last several hours going over chemistry - simple concepts - atomic number - protons and neutrons--. He cannot hold on to any information for more than 5 minutes. I know he will "get his brain back," but I do not understand how he is supposed to go to high school when he misses his brain for two weeks at a time. I can't coach him through. It's a deficit. Dr. L is recommending a month of antibiotics and then IVIG despite no positive strep. This child has never had an MRI an EEG or any other work up. It's all psych and PANDAS specialist driven. I guess I just need some words of encouragement AGAIN. To be honest - it seems like a two week seizure every time. Is that what everyone else sees?
  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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