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junkyardjean

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Posts 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 explained to me (return of old symptoms), it makes much sense and I am glad I was able to have an upfront discussion with the ND to clarify. It is actually amazing to watch when viewed from the curiousity of healing, tough though as her parent...

     

    We are seeing much progress - before working with ND, at the end of march, dd's infection caused three intensive weeks of behaviors. She just had another infection last week, and behaviors were up and then gone in 5 days. Much to celebrate!!!

  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 guide testing/treatment through (which we do).

     

    BUT, I have not heard back from yet, so I have no help for you around what actually happens next :)

     

    Please keep us posted!

  4. 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!

  5. 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 leave my side all day and would screech like her fingernails were being ripped off if I left the room. Repeated the same question a hundred times - what happens after breakfast? (there comes a point where you just want to scream!!! - sorry...)

     

    DS comes home - his voice is different like he is getting a cold. I can feel lumps all in his neck and he says the area around the base of his ear is sore. Cousin that we visited on Sunday also has a double ear infection that came on yesterday. Great.

     

    I remember "long ago" (December feels like an eternity away) that the docs who diagnosed her with RF said the pen v proph. abx will "stop all bacteria in their tracks" - it would be rare for her to be sick. This is sickness #3 since December :(

     

    This flare up is a double edged sword for me - on one hand, it pretty much confirms that infection is causing the behaviors, but second, this isn't going away. When she is doing well, it can be easy to just stick my head in the sand and just enjoy.

     

    Our phone consult with Dr. K is on May 16; haven't heard back from Dr. T. The person booking stated to allow 1 hour for the consult - I'm very much looking forward to hearing his wisdom on this!

  6. 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)

     

    Everything else fell within normal - thankfully, no protein, glucose, ketones, hemoglobin, leukocyte esterase found in urine this time around.

     

    Any thoughts?

  7. 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, when angry - pupils often dilated at the same time. We struggled with how to discipline this - thankfully it has faded away as she comes out of this flare.

  8. 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 surprised when I called Dr. T's number that he actually answered the phone, and then emailed him the reports using the email on his website. With Dr. K, I used the i-consult link - it says on the auto-reply that we should get a response within 72 hours (sent on Thursday evening) - I'm thinking the weekends don't count.

     

    Has anyone from Canada consulted with either - how long until you heard a reply? What is in the reply? Do they ask for more tests to be done, can they give a diagnosis? I know Dr. T stated he can't treat her in Canada (not licensed here, but if we were to come to the states, then he could), but he would be willing to work with a local doc to help guide....

     

    It has been so hard to keep going - I've said it before, but I will say it again - this forum has made a world of difference and gives me the strength to keep going. If it is a behavioral diagnosis, then we will deal with it - I think what is bothering me is that the docs here just don't know what is wrong with her and then default to the easiest answer - our parenting and/or emerging behavioral diagnosis. I'm a clinical social worker (which the docs don't know as they have never asked) - kids who have a behavioral diagnosis and who are not treated do not generally exhibit such a wax and wane pattern in their behavior. This is what I am challenging and I don't think they like seeing me in their office (extreme pain in the behind for them I'm sure), as much as I like going either.

     

    I'm bent on getting a proper diagnosis - a shrug of the shoulder, "this is so rare", given parenting tips, power trips, etc - all very tiring and a waste of time. But I feel like we have to do this dance in order to respect the system as these are the same people who will treat her locally (we are very rural), both for emergencies and ongoing issues.

     

    Thankfully, thanks to the naturopathic doctor, she is coming back to her baseline and we have some really great days. She is able to verbalize more the intrusive thoughts, obsessions, and compulsions - she said yesterday that she had bad words in her head that won't go away. My fear (and I'm not alone is this from reading other posts) is what next? The next virus/bacteria/fever - what are we going to get? And if she doesn't have the proper diagnosis, how much more time are we going to lose, standing by while she looses chunks of her life struggling?

     

    And then I get tired, and I think - maybe this is just us that suck as parents? But that doesn't quite feel right - we are not perfect by any means, but to have the sudden, severe onset of symptoms following a physical illness? I'm thinking that if we were the "creators" of her pathology, that should take some time to build up....

     

    I don't know - time for a nap :)

  9. 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 imagining things and to keep trying to find someone to help!

  10. 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 system & get to the root of the issue instead of symptom management)

  11. 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 fingers, toes, that we can build her immune system back to fight off some of the "easier" bugs so that every fever/infection doesn't throw her for a loop - also to neutralize her immune system to stop the current attack on her organs.

     

    We are also doing some preliminary dietary changes - adding a banana/blueberry/spinach/pumpkin seed/flax seed smoothie (which sounds yucky, but is actually quite good...) Friday we will look at some particular homeopathic remedies to help address some of her behavior difficulties.

     

    Please, please, please - I hope this makes a dent....

  12. 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 be sick anymore either

    DD - I don't want anymore fevers mommy

    me - I don't want you to have anymore fevers either honey

    dd - I really want to be a grown up someday

    Me - i really want you to be a grown up someday too

    dd - I really want to be a grown up someday mommy, but my insides tell me I won't be

     

    Ooooofff - what could I possibly say to that?...

  13. 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 refreshing to hear. I am so done with "this is just so rare" (I want to scream - just because you think it is rare doesn't mean it doesn't exist!!!)

     

    I think we will get the e-consult process going as it looks like the pricing is similar to the phone. He would review all her labs & diagnosis up to this point, provide detailed written thoughts around diagnosis/current treatment, and recommend other treatments as necessary. At this point, I'm thinking it would be worth the investment.

  14. 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.

  15. 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 reaction - even with that, I find myself questioning if I do add to the "problem". We have worked overtime to remain neutral with her and so hard to focus on the positive behavior (which has not been easy....) I'm not a perfect parent by any means, but I am sure her clinical behaviors are directly linked to when her immune system has gone haywire - you can tell by her eyes that she's not even "home" when the behavior is escalated.

     

    He sent a referral to cardiologist, and requested every kidney blood & urine work possible (thankfully he is a ped kidney specialist) - he was way more comfortable talking about her heart and kidneys than her behavioral symptoms, which, thanks to the forum, I was prepared for.

     

    So, long story short, on to the next step. What is a phone consult with Dr. K look like? What is the cost? How long, what can he tell you? Is it better to go through his I-Consult process (as I am in Canada, I notice we could access that on his website). Any information is greatly appreciated....

  16. 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 she has been so sick", followed by the kicker "maybe you need to alter your parenting - do you know that kids need firm consequences and consistent boundaries?" (really? I am a social services professional and work extensively with children and families with severe dysfunction and a host of clinical behaviors). Then he says "lets refer her to a child psychiatrist as she may need risperadone". He's so far in la la land, tears in my eyes start to build....

     

    Second, we go through her bloodwork. He proceeds to tell me that there are no concerns - when I ask specific questions in regards to her low and high results (according to the lab ranges indicated on the actual report for children), he says "well in adults, that number is fine". I ask if it is fine for a 4 year old - he turns red and says, its probably good we're seeing the pediatrician tomorrow.

     

    Then he starts to double back and say that he is out of his league in this situation and he wants to leave it to the ped. to review - he is willing to refer, consult, etc. with anyone I bring forth (we discussed Dr. K as he emailed me back and suggested a phone consult as dd's case symptoms and basic blood work were "outside the norm for classic PANDAS, but obviously something serious is up"). At least he was starting to get honest. Then he acknowledged our parenting and stated that it was weird that the behavior change was so sudden and severe. He finished by saying that he felt this was an emerging behavioral diagnosis, but he will leave it up to what the specialists have to say.

     

    So, tomorrow, off to the big city to see the ped! Can't wait (said with both excitement and cynicism....) I did have a chance to speak with his nurse today to confirm for tomorrow, and she almost freaked when she heard the results of the BUN and creatinine. She just kept saying, "we need to have a plan, we need to have a plan" Not sure what that means in her world - I guess we will see what is waiting for us tomorrow!

  17. 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 says dd is in serious trouble, especially kidneys. She is SUPER wonderful and connected extremely well with dd, which is a huge bonus. She is willing to do team work with family doc & ped, if they are game as well. We started an "intensive, intensive" schedule of constitional hydrotherapy, plus slowwwwwly implementing diet changes as to not overwhelm her body (she loved the banana/spinach/flax smoothie today boy!!). The focus is on her gut, and getting her immune response to relax and hopefully not cause any more damage to any organs. We are still continuing with the pen v.

     

     

    We see family doc tomorrow, then ped on Wed - I will be letting them know she is now on board (I'm not sure how they will feel about it though...). Hopefully we can continue to grow on this burst of good energy we were able to receive with Naturopath - it was nice to finally hear a professional say "there's something we can try" (no guarantee to cure, but something to try). Up until now, we get a lot of blank looks.....and even statements on how there is nothing they can do - RF just has to run its course and whatever damage is done is done.

     

    For me, at least in my surface psychology, I feel better that we are at least trying something????? I also sent Dr. K an email, just to see what insight he may have offer.

  18. 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 placement for the long term. It takes so much time to coordinate appointments, tests, etc. I had no idea there were so many loopholes, forms, fees... We have noticed things are much worse when she gets tired (either physically or emotionally), so there are some days that she can't go to daycare as we try and prevent things from getting worse.

     

    It sounds like it might take a while to get back to baseline depending on dr's, treatments, etc - finding what works.

     

    We are to the point that we often find alternate arrangements for our dd when there is an event with our ds (who is 7) as her behaviors can grow way out of control and we can't engage with him. It feels bad leaving her out, but if she does come, then our son doesn't get what he needs as well.

     

    How do others manage? What changes have you had to make? What changes do you wish you had made?

     

    Thanks in advance...

  19. 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 was strep infection), I am almost terrified to let her out of the house. The world now looks full of germs - and if we are going to have complete backwards spiral each time she is sick with anything, maybe a bubble is in order :)

     

    I did not know that the standard of care for ARF was IVIG - the docs keep telling us this will resolve itself and wait it out - they seem to only be concerned with her heart and kidneys (with some inference that my parenting can be picked up a bit - really?????). I am not convinced that this is going resolve on its own anymore - the behavior changes happen too fast, and too severe. Thank you Worried Dad for sharing your advice on "waiting it out" - your story sounded all too familiar....

     

    We are meeting with a Naturopathic doctor on monday to hear her report and treatment plan, then we see our family dr on Tuesday, then the ped on Wed. It's time for my mama bear to come out some more and do some serious advocacy to see if I can get anywhere.

  20. 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 have fractured it. They did xrays - no fracture. Sent home - on the way home, she refused to use her legs, no bending her elbows. By the time we got home (10 minutes later), her stomach, back and armpits were covered in welts. Back to the er - told allergic reaction. The red, hot, swollen joints migrated, and she had extreme skin sensitivity. Fever started and lasted 8 days, severe lethargy. ASOT came back 400, CRP was 96, ESR 25. Diagnosis RF - given proph. pen v BID until 18 years of age to protect her heart.

     

    Come January, hallucinations, clumsiness, regressive behavior (poop throwing, tantrums, no impulse control, baby talk), and raging and clinical defiance. Pediatrician discusses chorea - monitoring continues....

     

    Things slowwwwwly improve and by end of March 2012, we are having more good days than bad in a week. Then over spring break, she is extra tired and has serious black bags under her eyes for three days - she complains of chest pain while playing. Thinking it was her heart, we go to dr. While waiting she spikes a fever and we are sent to er (most dr.'s here don't know what to do with her as they have never seen RF). Her blood O2 is very low, given oxygen, advil, bloodwork. Told it looks like a virus, no worries.

     

     

    Within hours of the fever starting, she lost it. Any gain we made over the past three months disappeared. She became aggressive, defiant, safety issues emerge (running into traffic). Confesses profusely, and worried about germs (which she has never done before). In her bad times, her pupils are dilated and her body is warm (though will not register a fever, just obviously warm). ESR (which was down a bit) goes back up to 16, CRP normal. They redid the ASOT (which had gone down to 200 at end of Jan), but we are waiting for results.

    Her kidney function is impaired (creatinine and BUN above normal).

     

    I am at my wit's end - the doctors who see her infer that "her behavior is okay" - they see her for a total of 15 minutes in the room! I offered for them to come to my house if he really wants to see her in her "natural" environment. How could she have gone so far backwards? I thought the pen v was to keep this from happening? Where is my daughter? (we had hints of her in March)

     

    My question to anyone - chorea vs. pandas? Does anyone here have any experience or information? If I hear "this is just so rare" one more time, I think I might scream!!!

     

    Thanks in advance for anything - I have thoroughly gone through this site and there is a great level of depth and experience here, which is reassuring as it seems we are in shooting in the dark right now.

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