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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 the GAD antibodies seem to mean nothing to this most recent doc. I suppose my question is two-fold.... does a negative/clean CSF trump a positive serum result? And assuming is doesn't, can the serum result prove the disease is present and just in the earliest stages (or later stages meaning he is healing?) and will progress without treatment? I can make this theory work in my own mind since DS14 has, relative to other AE sufferers, milder symptoms of what this disease can carry. Main symptoms that stop him from living life (no school, friends, hobbies, etc) are anxiety, depression, OCD, rapid cycling moods, etc. We were hoping to have been able to uncover some science that would allow us to move to next line of treatment, but based on this doc she thinks he is just great...try more psych meds and therapy.
  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 something to learn even from the biggest skeptics. I would suggest that you refrain from using the term PANS or PANDAS at SCH, or honestly any doctor for that matter. Just stick with the facts and timeline re: your son. I absolutely believe you can have years of functioning even through smaller exacerbations that may come and go only to be passed off as a phase of some sort. My son fell off a cliff with what we refer to as acute onset literally overnight back in 2013....but in hindsight I think there were signs and we muddled through some tough periods of time (separation anxiety, mostly) that were very likely flares or exacerbations post illnesses. We have seen, and still do from time to time, see Gbedawo but our overall treatment is handled by a neurologist. Look up Dr. Lauren Plawner in Kirkland. Worth a try to meet her and get her input. Pm me if you have more questions. And I'm interested to know who you saw in immunology (we were originally dx'd by Troy Torgerson) and who you have/are seeing in psychiatry. And what did they say? Best to you..... (Sorry for grammar or any typos...no proofreading this AM!)
  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 "blonicle" entries, make sure to start with number 1 and post feedback here. One more thing, I feel like I should tell you the end of this *story*, before I ask you to read the beginning. The child, "Dora" in this story is a real life wonderful girl, living a real life parallel world very similar to all of ours here....and with the very same diagnosis our children have, so I promise there is more than just a little common ground here. That said, maybe I am blinded by the love and respect I have for my dear friend, but every time I re-read these entries I love the story almost more than I did when I read it the first time and I beg for her to write more. It reads more like a beach read, but with surprising depth and feeling.....which is both ironic and inspiring!! I am so anxious to get feedback from any of you, even just one of you? And feel free to share the link with others too, especially for any parent that has struggled with seeing gradual changes and questioned whether or not this disease is possible with the "acute and overnight onset".....I think we all know the answer to that question. ; ) Enjoy it (I really guarantee that you will!), READ ME HERE! Kristi
  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 can't think of where mold could be....though it is very wet here in the PNW). The theory of his immune system being in overdrive makes sense to me....just need to find out why I suppose. For any of these tests we need to wait at least 6 weeks post IVIG so that we don't get any of those antibodies in the mix. We have not tested anyone in the house as carriers for strep....and I suppose we haven't done anything out of the ordinary to try to minimize his exposure to the real world post IVIG's either. We have never been instructed to do that - is there a protocol that we are missing here? I would have so much more patience with it all if he would just get to school!! And honestly if he was able to do any amount of work here at home we could at least bridge the gap with some sort of academics aside from the newspaper, mad libs (these can get hard! who knew?) and random documentaries here and there. But for him, it isn't school as a place, or about the people....it is great and the people are great, and my kiddo is very well liked....but there is something cognitive going on that triggers anxiety around doing any "work"..... He is such an articulate and communicative kid and it is confusing for me (and him) to not be able to put a finger on why it is the work that causes him the angst. Can he not concentrate? Can he hear in the classroom okay? Can he see? All of the questions that may lead to some good information always lead back to the same place: which is a very sad and frustrated "I don't know"....it is just heart wrenching. None of our kids want to live this way.... Okay, now I am just venting! Just so sick of it all...and I admit to being in a why me mode at the moment. All the *normal* chatter at drop off for my daughter, parents b*itching about the most inconsequential things (trust me, I wish it was me!). I really don't want any attention, but it does sting a little that most of the questions about DS have stopped - even from some of our very good friends - but I suppose I don't blame them. How many times for the same questions with the same sigh's and I don't knows can anyone take? That being said, how about a flippin' casserole or something??? I'd love a random greeting card to accompany all the medical mail that comes...??? It is all so isolating. Thanks to all my fellow warriors....keep any advice or commiseration coming. You know what they say about misery.... Kristi
  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, February '16 and most recently week before last....every time we start making some real progress, he gets exposed to someone or something that makes us lose our ground and left scratching our heads. We can deal with everything except the school refusal!!! It is real...not something that can be CBT'd or ERP'd....or at least not that we have had any stitch of luck with, in fact in some ways it has done more harm than good. We have a fantastic neurologist, an awesome naturopath, and have jumped from one therapist to the next. The therapy piece of this treatment has been the most disappointing piece of all....and I am constantly wondering what we are missing. Is it time for the next line of treatment? The immunosuppressants of some sort? His system seems so jumpy and aggressive....or is that just me making excuses and trying to make sense of it all? We were doing SO solid until my daughter came down with a fever and vomiting this past Thursday...by Saturday the decline was evident in DS. Negativity, irritability, agitation, depression, anxiety..... Any thoughts on the theory of a jumpy immune system? Is that even a thing? Shouldn't IVIG help that? He is on low dose of Luvox, 1/4mg of guanfacine to help with attention/anxiety (started this about a month ago, just takes him down a notch?), 500mg of azithromycin just once a week, and some basic supplements from the naturopath (multi vitamin, methyl B12, folinic acid, probiotic, ashwaganda). He has the muther effer gene mutation (you know, the MTHR??), along with 40% of the population....that is about all I got from this near empty and tired feeling jacked around mother tank of mine.... Sorry for this scattered and unproofed post....I will take and an all ideas for those that want to chime in!! Thanks, Kristi
  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 private practice)... Anyway, the brand used this most recent was Flebogamma and the first 2 rounds were done using Gamma something or other....NOW we are switching to a home infusion service (Option Care formerly Walgreens) and I have no idea the brand that will be used. In poking around it seems there are certainly differences and decisions to be made based on a patient's diagnosis. My son's official diagnosis is "auto immune encephalitis - post infection".... Can anyone shed any light here?? Thanks so much. Kristi
  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 HD IVIG and emerging back to the best kid we almost forgot we had....another HD IVIG in 3 weeks so we can tamp everything down barely further to get ahead of the curve. The plan after returning to baseline will be to have scheduled IVIG on some sort of a routine, almost preventative, schedule. Don't ask me how insurance will cover this plan, but we will have to find a way... Gee, maybe I should read the study now? Sorry if my post is a giant bird walk!!! My thoughts are consumed with all of us fighting this messed up battle.... Keep on truckin'! Kristi
  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 which to make contact seems necessary. I wish you the BEST of luck. Keep us posted. Kristi
  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 with any of the doctors that have treated your daughter? Can you have a heart to heart (even exactly what you posted above) with a doctor that will listen? If yes, I would absolutely have a conversation quickly. What would you ask for? I don't know exactly, but starting the conversation is a good place to start..... I can absolutely tell from the way you have thoroughly written this post (and yes, I have read many of you previous posts...yeah, been mostly lurking around here since 2013...and just had IVIG #2 for my son) that you are smart woman, very capable and probably knowing that you need to do something....and if it takes this village to validate your concerns then, well, here we are - at least a couple of us so far... ; ) Above all, I will be sending you good juju and hope that you get some improvement... My best, Kristi
  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 supporting us through IVIG. SEAmom, who are you seeing at SCH? 4Nikki, curious to hear more about your experience at Vital Kids.... PM me if it is more comfortable. Kristi
  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 10mg mark we were able to move from the liquid form to the 10mg tablet form. My question... liquid vs. tablet (this drug or other) with the same mg of active ingredient should theoretically be the same, yes? But out of the blue, increasing with intensity, are bouts of anxiety that have no identifiable trigger or cause. My son (now 12.5) very clearly articulates that these feelings of discomfort and the need to flee a situation during these unpredictable episodes comes out of nowhere. It has been 16 days since the switch from liquid to tablet....and the start of these episodes I can track back to about 5-7 days after switching over to the tablets.... Am I nuts here? Or could the change in compounding then effect the way my kiddo is metabolizing the medication? I am going back to the liquid immediately just to see if that addresses it....but I also have a call into his doc to see if it is a post viral reaction (he was sick with his first respiratory virus last month since the sh*t hit the fan initially). Thoughts??
  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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