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Everything posted by sosudden

  1. I used to always be amazed my dd rarely got sick when she was little - snotty noses and fevers all around but dd rarely "caught"anything!!! No behavioral issues when really little EXCEPT looking back heightened separation anxiety and fear and unexplained hives AHA probably the begining of PANS.
  2. Figured out PANDAS on January 23rd 2011after googling "OCD & STRANGE MOVEMENTS". Saving Sammy popped up and I read a paragraph and watched a video of him and basically screamed THIS IS WHAT MY DAUGHTER HAS!!!
  3. I would say go the Naturopath or LLMD route. ID doctors, from what I have heard AND 1st hand experience, are not very helpful. My DD was followed by an ID Dr for osteomyelitis (bone infection) she got in her foot bone after stepping on something and getting 3 stitches!!! Within 24 hours!!! So pediatrician made us go to Childrens Hospital to be admitted and she was there for 2 days receiving IV antibiotics (followed by 8 weeks high dose antibiotic combos). Anyway, at her 1st follow up a week out, the arrogant rude ID Dr walks in and LITERALLLY the 1stnext question is if dd has had the flu vaccine (I I had said no in the hospital.)I She then continued to pressure me about this for 5 minutes basically having a staredown with me (& I am so not confrontational). At the next and last follow up I asked her about some labs that were out of whack and she said that it was normal for my dd and most people don t believe PANDAS exists! (
  4. Oh yay!!! Those glimpses are wonderful and what we are fighting for!!! Yay!!!
  5. Ivig is what brought my dd back. We have tried several SSRI throughout this journey that did not help and or made tjings worse. She has gone months without any at all. Her total sadness and depression was palpable so she has founf some relief on lexapro. These kids suffer so badly. If the antidepressant is possibly helping then i say dont stop it now. Just my opinion. Dd was on prozac when she got ivivg. Although it did nothing to help her dr K did not want us changing too many variables. You can sort it out at some point but if it is helping at all...
  6. Yes please do!!! Thanks! Hows your girl doing??
  7. Yes - looking back it was in the works for awhile... and she too got the flumist right after her 9th birthday...
  8. I have wondered same thing about age and vaccine lot???? My dd is 10.6 and her "falling off that cliff" episode was right after she turned 9....
  9. Dr Bob Batterson @ Childrens Mercy in KC, MO.
  10. Very important part of dd healing! She was 9 almost 10.
  11. Google Adrenal Fatigue. A good start. I realized it was time to start taking care of myself too or I will be no good to anyone much less have the stamina to keep up with this difficult autoimmune disorder.
  12. My dd similar. Dont know for your dd but sometimes the ocd thoughts make her act this way. And all thiz about but how does one check this??? No outward yeast signs so how do I explain/ask her pediatrician? Or what is the best and easiest supplement to give to fight yeast?
  13. DD10 iggg subclass 4 also elevated - 160s both times. Others were within normal range tho some low end of normal. I will be interested what you find out.
  14. We have BCBS of Kansas City. Denied coverage. Appealed. Denied appeal. Got IVIG in Chicago, Dr K. Paid out of pocket and would do it again as it brought our DD back from the edge, some symptoms resolved instantly. Here is the jacked up part - we got very minimally reimbursed for Dr K and for Oakbrook Surgical center BUT they would not reimburse at all for the actual IVIG?? Which of course is the biggest cost $$!! There has to be a change sooner than later because IVIG is what a lot of our kids need!
  15. I know I am probably in the minority but my dd10 could not tolerate probiotics without making her feel worse - antsy, angry, physically just not right. I finally, after 1 year, am able to get a bit in her without a problem.
  16. Oh no I wouldn't think so. I honestly cant say I see a change with it but I do wonder if she feels it helps....I know some people say it really helps.
  17. HI! Looking for LLMD in/near Olathe,KS Could you point me in the right direction? My dd10 has PANDAS/PITAND/PANS. She has been treated for coinfections (myco, HSV6, Coxsackies). She is doing well. Has had 2 viral flares. Here is why I am wondering: Band 41 positive. Sudden increase in eosinophils. AND She was on some whopper doses of antibiotics for osteomyelitis (bone infection) for 8 weeks, October to December. And it brought her back the closest to 100% that we have seen in a year!! Some of the antibiotics sound like what LLMDs give for Lyme - Bactrim, Cipro, Doxycyline, Clindamycin. Makes me say hmmmm??? Am I making something out of nothing in your opinion? I just feel I should investigate this further. Also, do LLMDs treat for other coinfections, not JUST Lyme? I feel like I read that somewhere too. Thanks, Laura
  18. What a bunch of CRAP! Sorry your kiddo and family are going through this! I agree - no psych ward for these kiddos!! And for separation anxiety??!! Are you kidding me? AWFUL! What is wrong with some of these doctors??!! I agree about searching for more underlying infections etc. I have read (I think) in one of your posts you would not do IVIG but I will say it saved my dd from plumeting off... Then it wasn't until July (5 months after IVIG) that we had to pay more out of pocket to consult Dr T because we were just getting nowhere fast with local doctors. DD was better but had a horrible flare (although not as bad as 1st) June 5th (I remember that day:( Dr T helped us find and rid Mycoplasma (got while ON zithromax), HSV and coxsackie. Also T&A helped and a very important part of her healing. So I guess the moral to this story was for US is we HAD to go the "main" well known PANDAS/PITANDS/PANS Doctors to help our girl. I continue to scour these sites and Facebook to find anyone closer/local that can help us. (((HUGS))) to you all.
  19. I would not go to ER, especially if no outward symptoms like fever, cough etc. Just my opinion but seems most ERs won't do much for you especially since he is on antibiotics. And sad but true they may not have any knowledge at all about this autoimmune disorder called PANDAS/PITANDS/PANS. That all being said -- if he has sypmtoms and your mommy instinct tells you he should be seen... I hope things ate better for him this Christmas day!
  20. JenniferG, Hang in there!! It is so hard to not be able to fix our kids problems quickly!! Our 10 year old daughter had ivig almost 1year ago, Feb 2012. It brought her back. She was pretty much nonfunctioning, a shell of a person, gone... Once again, because this is autoimmune, time and the right treatment, is a bit different for every child. I can share, the 1stday day after ivig, my dd had one severe panic attack, worst she ever had. But, that being said, she was also more "present" and aware for the 1st time in months and didn't "disappear" like in the past. Also, shortly after ivig, I could see her big brown eyes again!!! I knew her pupils had been dilated but sheeesh - forgot her eyes were brown until after ivig. Have you noticed a difference in her pupils yet? The zapping pain --- my daughter developed this about 3-4 months after ivig -- chest, arms, legs. We uncovered and treated coinfections, myco and viruses, and chest zapping slowly subsided. Dr also said could be B12 is low, tried supplementing that and dd could not tolerate (made her amped up and antsy). Saw local neuro for zapping in arms and legs -- verdict was it was also related to post infextious autoimmune response -- a neuropathy that should go away over time (although and it has). In June my dd was diagnosed with auonomic dysfunction or POTS -- also post-infectious autoimmune. So, long story not very short (LOL) time time time after ivig. Turning back the pages is frustratingly true at least for us. BUT, 10 months out and dd is 90-95%. OCD lingers and we are in intensive therapy -- no WAY we could have done it any sooner than we did -- but she is in school and smiling and interacting and laughing!! One year ago exactly I was shell shocked - this was before I discovered PANDAS/PANS. I think back and my stomach just drops -- my thoughts were so dark seeing my daughter decompensate so quickly, her future disappearing before our eyes... So hang in there!!! Deep breath! Keep researching. And remember TIME will help heal your little one!!
  21. IVIG is what brought our daughter back to us! Antibiotics and antivirals, for daughter, were very necessary and another irreplacable step in getting well and functioning again. Every child seems to tolerate things just a bit different and treatment has to be tweaked as their body and mind heal and flare. Autoimmune in general is hard to diagnose and treat unfortunately... and these kids can respond so strongly to meds/supplememta...for example, my dd10 can not take melatonin -- the few times we tried she woke up in morning and felt awful - bad dreams bad feelings etc.
  22. Hi t.anna. o man... i remember firat staring this journey almost one year ago exactly. I felt like back then it seemed everhones child did get better easily and or quikly. And my dd wasnt. For me i think it was the shock of all of it and the posts and info i was reading....i was lookkbg (and hoping) for a quik cure... well a year later and one thing i want to stress is that pandas/pans is an autoimmune problem -- and there is no quik and easy fix for these. BUT time and the right treatments do decrease the symptoms to managable and sometimes almost nonexistant. Seems every child rrquires something a bit different to function optimally. Some kids have more underlyying immune issues. And some, like my dd10 conquer one thing onlg to have another rear its head. I hope this doesnt sound bad - just real. Hang in there and keep on fighting for.your kiddo. And ask away kn this forum it is wbere i learned the most for sure!
  23. Surfmom - we will be 1 year out from ivig in february. During past year as far as antibiotics we have tried cutting back only to need to increase and eventually switch. Dd has strong reaction to most all supplements so she is only on Vit D and kids omegas. I try probiotics but she reacts to those too. More to this story of course BUT she has been antibiotic free for almost 10to days. Feels physically better for sure - ALWAYS had upset stomach nausea with antibiotics (except Cipro?). Anywho, my fingers are crossed for you and us!!! No flare, still doing her intense erp/cbt.
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