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MissionMama

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MissionMama last won the day on November 3 2016

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About MissionMama

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  1. This may be a long shot but wondering if anyone has any insight on serum positive GAD antibody, but the CSF was clear? New neuroimmunologist said the titer (0.04) wasn't high enough to cause my son to be symptomatic, though she admitted there shouldn't be any measured at all...but he absolutely responds to IVIG (though the results never hold longer than a handful of weeks). We've been at this relapse well over a year now with using intermittent solumedrol (1-2grams) and HD IVIG every 5-7 weeks. Starting to see and hold more gains since December, but confused as to why this positive test for
  2. Any updates Sham7rock/Erin? Hoping you got some direction with your recent appt with Vlcek?
  3. Hi Erin, I also sent you a private message so check your inbox!
  4. Hi Sham7rock.... I'd say your symptoms and history sound highly suspicious for some sort of immune mediated mess. And it is hauntingly familiar to my own story. Curious who you've already seen? And is CHMC Seattle Children's Hospital (SCH)? You can PM me if you are more comfortable. I feel like I've heard Ming's name mentioned recently, maybe on an FB page? Anyway, it is worth a shot to be seen by any doctor, especially if your expectation can be adjusted to expect the worst...know what I mean? Of all the frogs we've had to kiss along this sh*tty journey, we've always had at least
  5. I knew it!! It is just miraculous that people can feel her words! For anyone that has liked it, and has become hooked (yep, you ibcdwc!) make sure to sign up on the blog post itself for notifications. When an alert for a new post hits my inbox it feels like Christmas! I will also come "here" and post an alert... Thank you so much to each of you for taking the time to read it - and to give feedback. I know it breathes life into her plight to share her experience with others. It is also good therapy and inspiration - for all of us! Kristi
  6. Right? Thank you for taking the time to get started.... I can't think of anyone that would regret reading it, and it excites me to get this feedback because it kind of makes me feel like I am getting to read it all over again for the first time!!! It brings to much light to this screwed up little foxhole....
  7. So, I am going to mix things up a little bit here. A very slight left turn from our daily lives of managing life here in the (sometimes dark) quagmire....I am wondering if any of you would take a few minutes to read a blog style chronicle (blonicle is my made up word!) that I am encouraging one of my dearest friends to think about completing...and publishing in some format. Anyway, I think it is an engaging, sometimes frustrating, sometimes sad and often times funny depiction of one family's attempt to get help for their child....which I know that all of us can relate to. There are 32 "blonicl
  8. I don't really have any input but I thought I would show my son's Cunningham scores....which includes very high Cam Kinase and the only "normal" or in the "green" value for the lysoganglioside.... DRD1 = 8,000 DRD2L = 32,000 (not a typo) LYSO = 320 Tubulin = 4,000 CAMKII = 210
  9. Digging up this old thread based on the recent article re: minocycline trial..... Cyberdog - did you have any luck?
  10. Wow. Albymom. Thank you for this summary. Very insightful indeed. I am going to send you a private message as I have some additional questions, so check your folder soon. Thanks so much!
  11. Thanks for the responses so far. Of course Lyme and co is in the back of my mind....the very back, I will admit. We have almost zero exposure to tick bites where we live (urban-ish Washington State), and he has never had any *classic* symptoms. That said, the naturopath wants to see how the next 3 months go with some consistent IVIG under our belts and if we are still playing the up and down seesaw then she will order a whole slew of tests that may determine underlying infections, including lyme, (yes igenex), various infections, even mold is on the list (we built our house 10 years ago...I
  12. Why??? I just need answers. The reasons behind the answers, actually. We have been at this since 10/2013...acute onset overnight every single symptom for PANS (neuro typical son, then 11 - now 13yo). Strep titers always within range. Two rounds of HD IVIG back in 2 & 3 of 2014 brought our DS back to better than ever and held for over a year. Relapse after a virus almost one full year ago in Spring of '15...we just limped along with a round or two of abx, throw in some steroids, and we ended up not being able to dig out so we went back to HD IVIG in October '15, December '15, Febr
  13. Yes, to the Cunningham Panel (through the roof with Cam Kinase well over 220). Also D2 at the highest recorded level of 32,000+. Check your messages and PM me for more!
  14. Cyndi! Check your messages...I PM'd you a few days ago....
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