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MissionMama

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Everything posted by MissionMama

  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....
  15. All knowing hive of warriors.... Who knows a thing or two about the various brands/mfgs of IVIG? My PANS son had 2 rounds of HD IVIG back in 2014...this brought him to a better than ever kid and a remission that lasted just over a year until he got sick again and relapsed. These 2 rounds were done via a Children's Hospital, outpatient, in their infusion clinic. About 6 weeks ago we had another HD IVIG. The is was done via inpatient in a pediatric unit just based on our neurologists privileges (first round was managed by an immunologist at the Children's Hospital, our ped neuro is
  16. Someone should have something to add....sorry it isn't me. But just a bump on this post and sending you a good luck with the next IVIG hoping that it turns things around. Kristi
  17. I admit to not reading the study...and I will...but at a high level glance I can report that we would be in the 100% of IVIG being effective. We are PANS...no known trigger, acute onset was 10/13, dx by 12/13, profound steroid responder multiple times (results never hold), then to HD IVIG 2/14 & 3/14. Within 3 months my DS was his best self ever. Period. Until a respiratory virus in 5/15....so a full year of remission...6/15 abx, more steroids...held only marginally functional until losing massive ground come start of the school year in early September. We are now 3.5 weeks post another H
  18. I have only been at this for two years, but I remember your plight from all your posts. I would absolutely do both: ask your current doc to contact Johns Hopkins as well as attempting to making contact yourself. Perhaps a savvy time approach would be warranted, as in I would give your current doc one week to try for contact. If you get no traction that way, start calling and making contact yourself. In my world the form of contact can be phone calls, letters and emails....even combined you don't have to show your inner mama bear panic, but throwing out a wide dragnet with varying platforms in
  19. My heart and stomach are flopping around just reading your post. I, too, have one PANS kid and one completely perfect wonderful happy healthy kiddo and the mere thought of a nose dive (or even a partial nose dive) makes me feel physically ill. I absolutely think you need to follow your gut here - and like Nancy just said above - it doesn't seem like normal behavior at all - not even passing for "quirky". Trust me, I know quirky...in fact, I love quirky. I am just coming out of my deep lurking status to tell you to follow your gut and don't ignore it. Do you have a good relationship wit
  20. 4Nikki and SEAmom, I am in the Seattle area as well. Neuro typical DS12 dx PANS sudden onset 10/13. (official dx autoimmune encephalitis, post infection) Months of h*ll took us through abx, 3 rounds steroids and finally IVIG. (We also did Cunningham Panel which was very helpful.). Coasting now on low dose SSRI, but ups and downs with exposure to typical cold/flu viruses. I feel we must still be missing something during these times of flares...so the Vital Kids philosophy is very intriguing to me. We have a very supportive pediatrician, neurologist, and credit the immunologist for sup
  21. So glad to hear that your ped has agreed to try abx!! This is a great first step. If you are anything like us the abx should at least help a bit (inflammation) and best case you may see big improvements! Thinking of you. Kristi
  22. So.... we have been through the familiar circle of h*ll with this whole thing. But in a very abbreviated nutshell: Neurotypical 11 yo kiddo prior to actue onset 10/13.... PANS, unidentified viral trigger (official dx autoimmune encephalitis - post viral). 28 day course of cefdinir, to 3 rounds of steroid burst plus one taper, finally to IVIG (3/14).... miraculous turn around for us and have been coasting quite wonderfully (typical micro flares post viral stuff). We started on 2mg of fluoxetine and took 6 months to get to 10mg, where we have been stable and good. Once we reached the 10
  23. I just noticed this in my Wall Street Journal this AM. I am intrigued by it all.....from the ad placement to the intro and comments already cropping up in social media. Here is the link for the free viewing (limited time) http://www.boughtmovie.com
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