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Everything posted by junkyardjean

  1. We have decided to work with a ND and are also starting to use some remedies (just belladonna at this point to help with the rages). More will be added as we get her through the intensive phase with constitutional hydrotherapy. We are experiencing some of that detoxing at the moment, and I appreciate you mentioning it as it is scary to watch. DD is currently showing many skin reactions as we get further into this (something she has not had in this severity ever) - I can see why people stop as I have questioned myself if this is helping, or even making her physically worse! Once explaine
  2. Does the bloodwork that parents have referred to here (myco, Ig's, etc) need to be taken during a flare? Or do these results show up irregardless of timing of symptoms or even if the child is asymptomatic? I'm trying to do as much reading as I can (new to even thinking PANDAS since end of March), but am a bit stumped on this one.... Has anyone ever done had their child's blood drawn with no behaviors at the moment? Does the blood still show abnomalities pointing toward PANDAS? Thanks....
  3. I had called as well to talk about phone consult - and was super surprised when he actually answered the phone! I sent all the labs/behavior descriptions to him, but unfortunately have not heard anything back from him That was about 2 weeks ago, and I feel unsure of when to follow up with another phone call - I don't want to hound the guy... He had told me that he would not be able to treat her unless she was seen by him (we are in Canada, and he is not licensed to treat in Canada, but if we came to him, then it could be done). He also asked if we had a local doctor that he could gui
  4. That is fabulous!! (It actually makes me teary....) It is so hard to watch our children struggle, advocate so much all the time - it is really touching to have that kind of strength recognition for your little one!
  5. There is a naturopath on the PANDAS Resource medical panel - I think his name was Dr. Steve Rondeau (I am in a different country and have not used him myself, but have used his PANDAS article with our naturopath to help guide treatment). With our ND, we are doing constitutional hydrotherapy (5 treatments a week) and using some belladonna during the major behavior tantrums. We just started with her a few weeks ago, but already our dd's white blood cell count has come up, so I'm keeping my fingers crossed. Good luck!
  6. It started yesterday with a random comment "the bad words in my head are back mommmy - my brain says to say them but I don't want to get into trouble". Then, in the afternoon, complaint of ear pain, then low grade fever. Woke up half way through the night, she was up fighting - defiance through the roof at 3 am... This morning, fought her way through her hydrotherapy treatment (which she usually loves) - given belladonna by naturopath. That seemed to calm things for a few hours. Then she threw up, more raging, and ended the day with a 2 hour screaming tantrum before bed. Refused to le
  7. Here is a rundown of urine/blood results from random sample on April 18 (just the ones flagged as abnormal): Urine chemistry - Osmolality - 1229 (range 50-1200 mmol/kg) - Creatinine (Urine) - 6.8 mmol/L No reference range given, just a Note on report - "Normal range for creatinine excretion for children is .13-.22mmol/kg body weight per day" - not sure how the two units relate - pH - 8-9 (range 5-8) Blood work - Urea - 7.2 (range 2.8 - 7.1 mmol/L) - Urea/Creatinine Ratio - 288 (range <70) Note - Her serum Creatinine level was within normal - 25 (range 18-35 umol/L
  8. DD4 started to spit this past flare up - I'm not sure if it was in a tic manner (we are very new to tics though, and learning that much of her other behavior is actually considered tics, so this may be too?) She started to spit when "big" feelings came up (anger, sad, happy, frustrated) before her fever came - we thought it was weird as she had never done that before. Then when she showed physical symptoms, the spitting changed - when she would cry (which was very often), she would let it run out of her mouth for hours at a time. Plus, she would actually spit at her brother, the dogs, us
  9. After taking an emotional toll trying to work with the systems here (docs telling me she's peeing for attention, maybe we should try to find a parenting class, and the best "parents have a hard time understanding their effect on inducing pathology in their children's behavior" - this from doc who has seen me & dd4 maybe 20 minutes in total over the past 5 months), I have spoken to Dr. T and Dr. K, and sent all of her labs/behavior descriptions/history/diagnosis/treatment plans from everyone to both of them for second opinions. My question - how long until you hear back?? I was surpris
  10. Thanks for all of the great info - the ped they referred us to (no believer in PANDAS) called me back to say her frequent urination is an attention seeking behavior and we could look into parenting classes (we won't be going back...) We never gave her attention to her peeing, just monitored in our own heads - she will start to pee like crazy (5-6 times an hour), followed by behavioral increase, time passes, then urination goes down, then behavior comes down. I am forever grateful for the people on this forum - hearing other family's stories help me to feel confidence that I am not just i
  11. We are in the midst of figuring things out with dd, but she got her teeth cleaned for the first time on March 28 at 8:30 am - by early afternoon, she was running a fever and everything fell apart for a few weeks.... Could have also been coincidence though.... The docs want to put her on additional abx before & after all dentists visits in the future just in case (none of them even talk about PANDAS/PITANDS at this point, all they know is that abx helped with symptom control in past exposure to illness - I'm hoping Dr. K can help us out in consulting to help them understand her immune
  12. Does anyone know the biology behind the frequent urination in PANDAS? Do lab results show any change (in kidneys or urine sample)? Or is it "just" a symptom? Thanks in advance....
  13. We started with the naturopath - who is AMAZING!! She connected with my dd4 quickly, which allowed the constitutional hydrotherapy to go "hard core" more quickly. Each treatment lasts about an hour each and we are doing 5 treatments a week due to the latest onslot of her immune system to her kidneys in particular. She has struggled with low WBC for months, which, of course, made her much more prone to getting infections. After 6 treatments, her WBC has come back to normal, and she is no longer peeing 20 thousand time a day! She still struggles with some behaviors, but I am crossing fin
  14. DD4 and I are talking on the drive on the way home from ped yesterday (about 4 hours one way). She is doing usual 4 year old chatter - then starts to talk about the teddy bear the naturopath gave her "to take care of" in between her hydotherapy appointments. She named him Linden. Here's the jist of the conversation... DD - Linden is all better now mommy, he can go back to Dr. L Me - Oh, that sounds good - remember you can keep him longer if you want DD - Dr. L is going to make me all better Me - Sounds good to me DD - I don't want to be sick anymore mommy Me - I don't want you to b
  15. I looked into the study and she falls into the excluded category due to the dec. Rheumatic Fever diagnosis - the docs we have been working with are not willing to even talk pans, only chorea - but neither one of them have ever seen/worked with chorea in a child so young. Problem with chorea (and something they can't answer) is that the relapse of symptoms in march attached to the fever/virus "doesn't make any sense" (their words). Dr. K responded to my email quickly and stated that her case was complicated due to the RF, but we was willing and excited to consult - which was completely ref
  16. On March 28, my dd had a fever for a few hours and bloodwork indicated "just a virus" - her behaviors went through the roof for about 10 days (she just turned 4 on April 10 - we even debated putting off her bday party because she was so rigid and defiant - she was really struggling). I hear you about the yelling & screaming because "things aren't right"... We are just now having some moments when she is back to baseline.
  17. Well, I did my proper channels in the system - went to family doc (previous post), and through ped - ped feels it is chorea, which he tells us is time limited and will go away. He did not have an answer why we had such an explosion of symptoms following the fever/virus from March - except to say "maybe you are giving her too much attention when she is misbehaving and that is why she is doing it" & "if this is not time limited as chorea should be, then prepare yourself for a behavioral diagnosis". I am so glad I found this forum before we went so I was mentally prepared for this reac
  18. Well, hit the family doc today to talk about symptoms. I'm going to do a bit of a rant here, please bear with me... I thought I would start with family doc as he has been my doctor for my entire life (35 years long - turns out, he doesn't really know us as well as I thought he did). I didn't want to skip him in the process due to the fact that at the end of the day, no matter who we hook up with outside of this rural area, he will be a key player in this process. First, when the behavior is first brought up, "she's doing fine right now", and then "maybe she is just acting out because
  19. They have done several heart tracings of rhythyms and listen to no end - because nothing is indicated there, they have not done ultrasound (although I may be asking more forcefully on Wed). The kidney blookwork just came back last week so I have not had a chance to speak to either doc on their thoughts there (her specific gravity in urine sample is also very, very low - she's peeing non stop. thankfully, no protein in urine). We saw the naturopathic doctor for initial interview/assessment last week, and report of findings today. Based on labs I brought, plus ones she did, Naturopath say
  20. Today was a rough day - lots and lots of behaviors. Who knew four year old (just barely - turned 4 on Tuesday - and she is barely 28 lbs) could turn the world upside down??? How do others maintain normalcy? I have missed so much work, impact to finances has been severe. Some people at work have been supportive, others not so much ("why is she signing her son up for soccer, I thought her daughter was sick" - First, we are working so hard to maintain his world as well, Second - i'm not clear how the two relate). I'm beginning to think that I may have to relook at my schedule/work placeme
  21. Thanks so much for sharing your wisdom - I live in Manitoba, Canada in a rural area and it has been hard to find medical people to help. I thought it was just the "ruralness", but after spending hours on this forum reading posts going way back, it sounds like the medical community at large is struggling to agree to terms... My dd is on penicillin V BID until she is 18 to help safeguard her heart & kidneys. They told us that only strep would be dangerous to her (and the pen v would be a strong protection), but after what we experienced over spring break (which does not look like it wa
  22. In the beginning of Dec. 2011, my 3 year old DD was diagnosed with Rheumatic Fever. three week before the diagnosis, we had taken her to the dr. due to what we thought was pink eye (she had no fever, no complaints of pain, eating & drinking normally). The doctor noted a red, pus filled throat (did not do a strep swab), and prescribed amoxicillin for seven days. On the last day of antibiotics, my daughter came home and was not using her hand. She told me she fell on a car at daycare while playing - within two hours, her wrist was red, hot, swollen - I took her to er thinking she may hav
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