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Everything posted by junkyardjean

  1. We used this method lots when her inflammation was bad (dd was 3 at time). We were advised to keep her in 15-20 minutes as well.
  2. Yes, the serum sickness was very bad - her joints were swollen (refused to walk, use her hands, etc), she was almost comatose in her lethargy, high fever, rash, the whole experience was awful. The docs have told us she most likely had milder versions leading up to the major reaction as she had been on amoxil before, but symptoms were masked by the illnesses she had at the time. Her reaction started on day 7 of taking amoxil. Constitutional hydrotherapy consists of placing hot towels on her bare skin for about 10 minutes, then changing to ice cold towels (these stay on until the towels ar
  3. We ended up going completely natural with dd4 (was 3 when this all started) - we made the decision initially because she has such a bad reaction to abx (serum sickness with amox, no growing with proph. pen v, severe abdominal issues with zith). It seems dd mixed with abx was making her physically much worse. Because she has always been so small, the no growing was a major issue... We started seeing a naturopathic dr - started with constitutional hydrotherapy, then some homeopathy, then added dietary changes. Overall, it was slow, but steady improvement - after 6 months of treatments, we
  4. We have had experience with Rheumatic fever - it is a clinical diagnosis, and they use the Jones criteria to establish. Severe joint pain is a hallmark, and dd struggled with her knees in particular - her joints were also swollen, red, and hot, and the affected joints would rotate. Thankfully, she has shown no heart involvement at this point, but we are not out of the risk period yet. Initially, no one know what was up - bloodwork that came in super handy after the fact was the ASO titer, CSR, and ESP - these blood markers can help (as they are indicated in the Jones criteria) to rule in
  5. dd was diagnosed with RF last year at the age of 3. She has not had any heart involvement yet (but they tell us there is a window of risk that she is not through yet). Her skin is often grey, she tires super easy, and she does complain of chest pain, but so far no heart changes (as seen through tracings & echos). It seems her body is still being affected by her autoimmune response triggered last year by the asymptomatic strep infection (although when the RF took over, it was scary - she was so lethargic and 103+ fevered for over 10 days, almost comatose and lost 5 lbs - she only weighed
  6. Sorry for the naive question... The Cunningham test - if child is not in a current flare up, can it still indicate PANDAS, or will the test have to be completed when symptoms are present? The reason I ask is that other autoimmune conditions can still be detected in the absence of symptoms - but I'm not sure if the c-test works the same way?
  7. We developed a binder with different sections - lab work, behavioral logs, family doc notes, specialist notes, etc. As we are learning, beyond the strep history, clinical history/timeline of symptoms are very important. It saves time for us to give them a look through the binder to get a sense of what has happened and what labs have already been completed. Good luck! We are still looking for supportive specialists...
  8. Thank you so much for all the kind words - I have been working hard to find my grounding since Friday and not let it overwhelm me... I was asked by the dr when my first symptoms started. I explained to her that I was young, but that as an adult, I discovered I was very badly traumatized over a period of time very early in my life and that my medical team feels strongly that many of the symptoms were related to the trauma. I started my bipolar symptoms on schedule in later teenage/early adulthood (I do feel my bipolar is the regular run of the mill kind... complicated by the previous trau
  9. On a previous post I talked about going to get baseline neuro-psychological assessement done when dd4 is well. We had it done on Friday and dd4 has been pretty much back to normal, so the timing was great. The great news - dd's assessment came back as no issues and she is doing very well and developmentally ahead of the game. No surprises for us - unfortunately, the docs seemed to be so proud of themselves to come in and tell us she was fine, and when we said we know - the point of the assessment was to have the baseline done so when she is not doing well, we can get a handle on the di
  10. I will be curious to hear people's input on this - I started having gray hair at the age of 8....
  11. Some eczema conditions are viral. Meats typically are high in arginine - an essential amino acid. Some viruses thrive on arginine. So if your DDs eczema is induced by a virus, cutting out foods that are high in arginine could starve the virus into remission or complete eradication. Likewise, adding lysine could also help (if you didn't want to eliminate meats from the diet). Arginine and Lysine are ying-yang. Too much of one can cause too little of the other. So adding lysine would reduce arginine as well as act as an anti-viral. It may or may not be an immune issue. But there's at least one o
  12. dd started with canker sores after she started getting lots of excema after her first flare-up. For her, it is linked directly with her diet - once we cut out certain proteins, the canker sore and excema both disappeared. When she has meat in particular, excema comes back within 12 hours, canker sores in mouth next morning guaranteed. It was explained to us that her immune system cannot differentiate between her own body's protein and certain food proteins,so when she eats them, it is creating a response that is attacking her own proteins causing the symptoms - summing up her wonky immune r
  13. dd starts kindergarten next year as well and we have talked a lot about this issue. We have decided to go with public school (at this time - if she has another bad winter it may change our minds...) as she is incredibly social. Her older brother attends the same school so he is bringing home the bugs that sneak through anyhow, and my husband and I both work full time, so she encounters bugs off of us (though we do change before entering house again). It is a small school (her class will probably be about 15 kids or so), and they are completely on board around her health at this point. S
  14. dd4's blood work was wonky for months until we started immune modulating treatments with ND - her levels of everything would rollar coaster, causing the docs to think it was a variey of things (including leukemia, kidney disease, other cancers, etc). One month, one would be high, the next month, it would be low - it was crazy and hard to keep up with. The two pieces of blood work that are consistent is her hemoglobin (chronically low since last Nov.), and ESR is chronically high. Our ND was the only doc who looked at her blood work as a whole - it was all linked to her whacky immune r
  15. For our family, dd was only three when symptoms first appeared, but in the worst of it she had started to head bang and could verbalize enough to me that it was a double edged sword - it helped her feel better and more in control, and her mind said she had to do it or something bad was going to happen. That being said, I'm a clinical social worker by trade and work alot with cutters, and was actually a prolific cutter myself for about 10 years during my late adolescence. Cutting can have a variety of roots, but the most critical thing is that it works really well! When the cut (or other
  16. """Also wondering what he's basing that opinion on? Is he suggesting that some form of vasculitis might cause the same symptoms and/or behaviors that have up til now been attributed to PANDAS?""" Yes, he indicated that vasculitis would cause the same neuro-psychiatric symptoms if the blood vessels in the brain were being affected. I have been able to do some further reading and it sounds very similar to the roots of PANDAS (autoimmune crossing barrier, causing symptoms). When I read the clinical pieces though, her blood markers that should have red flagged vasculitis in the beginning cam
  17. DD4 is thankfully doing well at the moment - we got through the last cold and she has seemed to really settle down (even getting hugs & kisses unprompted! - It's nice to have her back...) That being said, when she was sick in the spring, the referral process started to gets things figured out for her here in Canada. I got a phone call over summer with apology from a department head saying they were sorry the original ped. spent so much time focusing on my psychiatric background and giving parenting tips when there was no questions/assessments around whether that was an issue. Great!
  18. I'm really struggling right now with a couple of things. First, DD4 got her first cold in the beginning of September after stopping abx in July (due to her growth stopping while on pen & she is allergic to anything amoxil). Of course, before the physical symptoms started, she got a facial tic for two days that increased in severity that gave us the head's up of something on the horizon. The next day she woke up with stuffiness, coughing, bit of fever, etc., and surprisingly, the tic had stopped. Three weeks later, she was still trying to fight off cold - tested neg for strep bo
  19. When I read your post it really hit home. Even though dd was very obvious with her behaviors when she was in her massive flare in the spring, we seem to be constantly "discussing" her minor flare symptoms. For example, she started getting a cold last week - first sign was that she had a facial tic with her tonque going in and out (she has never done this before). My gut told me something was up - sure enough, the cold physical symptoms kicked in, facial tic became severe right around the time the fever came out. We rushed to our ND for an immune treatment/boost - tic went away, the cold
  20. My dd is also 4 - I agree with the behavior being the challenge for us too at this point. Sometimes DH and I sit after she goes to bed and strictly discuss behavior - is it the PANDAS, or the fact that she has always been spicy and she is 4 years old. The behavior increase with other symptoms (urination, dilated pupils, tics) are what we have found to cement the pattern for us. "Regular" behavior management techniques do not help during the times of brain swelling for us - it's like she is not even home. We have flipped into more of a prevention model - if she is having a tough time,
  21. Found this on my internet travels - interesting breakdown on IVIG use in Canada. PANDAS is discussed and is listed as a condition where IVIG would be indicated - not sure why things are still so hard here if this was discussed years ago? Docs listed on expert panel - not sure if anyone has any experience with them??? http://www.dsmanitoba.ca/professionals/transfusion/IVIG_neurology.pdf
  22. We did not see symptom improvement with pen v, but it did seem to keep her from actually getting another strep infection...
  23. "Dear junkyard jean, Just wondering how you and other moms treat these exposure flairs.... Do you immediately increase the abx. or do you just give it a few days to calm down again.... This is what I struggle with. My doctor has my son on prophylactic abx. but I can increase the doseage as necessary to treat if symptoms get bad enough. Because his symptoms are always there to some degree, I never know if it is the "right" time to increase the dose. In your experience do the flairs typically resolve on their own, assuming your kiddo is not infected. Just curious...." Dd was on proph
  24. In dd4's case, it looks like the original infection was strep that set symptoms off (confirmed with elevated aso titers that came back down to normal). That being said, we almost instantly see an increase in behavior & sensory issues if she is exposed to any type of virus/bacteria now. It's like she has turned into a bloodhound for illness - when we see an increase in behavior, we are sitting at 100% confirmation that someone she had spent time with closely within 24 hours has diagnosed with something (fever, ear infections, strep, impetigo, chicken pox, etc). It seems once her rogue an
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