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junkyardjean

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Everything posted by junkyardjean

  1. I just wanted to add that heat definitely made any and all dd's symptoms increase. She had a facial tic of scrinching up her face every few minutes - randomly while on holidays she made her way into a very low heat sauna room for 45 seconds. When she came out, the tic was nonstop and her behavior went through the roof. She will often scream in her rages that her "brain is hot" - after seeing what the heat does to her, I believe it... Heat seems to make the swelling more pronounced in her brain for sure.
  2. Dd4 has been doing pretty well, with only a couple of hang-on symptoms. When she was in her bad flare-up a couple of months ago, her sleep cycle got all mixed up with haivng a hard time falling asleep and lots of night waking. With everything else she was doing, it was low on the list of things to tackle at the time It has become a pretty major issue now - she can take over three hours to fall asleep, then still wake up 3-4 times per night and stay awake up to an hour each time. She will come to our bed (which is fine for us), and she will go back to sleep - when she wakes up, she just
  3. I'm relatively new to the pandas front myself, and don't have any thoughts on blood draws - just wanted to share about dd4's excema issues. She has had occasional patchy excema before her first flare, but since her major flare in the beginning of this year, her excema spread and became much worse. We were advised by ND to cut out her meat and dairy protein - theory being that those proteins are very similar to what is already in our bodies, and when people who have immune issues try to break down these proteins after eating them, the mixed up immune cells also go after our own bodies prot
  4. I don't have any great advice to add - just wanted to let you know I feel your pain!! DD4 was on a two week trial of zith back in May, and it was horrendous to get her to take it. I resorted to bribing and holding her head back/rubbing the front of her neck to encourage the swallow. She took hers in the morning, and after about day 5, she would wake up crying because she knew the medicine was coming She loves chocolate chips - I'm sad to say that yes, I gave her a chocolate chip every morning if she swallowed... "Lucky" for us (not sure if lucky is the right term), the zith gave he
  5. dd4 has a flare up when exposed to anyone else who is currently sick with pretty much anything - she rarely gets "sick" with the bug herself, but the behaviors almost immediately increase (meltdowns, rages, sensory stuff, etc). She is like a sniff hound except for other people's illnesses! When her behavior increases, we usually get confirmation in a day or two from the other parents whose children she has been playing with that their child had to go to the doc with whatever ailment is bothering them (ranging from fever, cold, chicken pox, impetigo, ear infections, etc). dd is batting at 1
  6. Yes, in some ways we are lucky to have the RF diagnosis so that she has available proph abx - we have spent much time in discussion around which one, when, etc - at this time, we don't have her on any (took her off a couple of weeks ago after being on since Nov 2011) as the physical side effects were more than she could bear, plus she had stopped growing while on them. I have gotten blasted saying that I shouldn't be on the board saying we are choosing no abx at time as there are parents on here who would do anything to have access to proph abx. I completely respect that each of us has to
  7. Just looking for some thoughts on the results for IgG, IgM, IgA - dd had these done and they are considered in the "normal" range, but all three results are low normal (for example, range being 0.27-1.95, dd's result is 0.41). We don't see doc for a bit, so I am loading up with info before we go - any experience/knowledge/words of wisdom on this? They are still normal, but I found it interesting that they were just barely so...
  8. Just feeling out your sense of where Canadian doctors are now - there seems to be so much movement towards pandas from the states perspective and I was wondering if there were any medical professionals in canada was following suit yet? We live in manitoba, and rural area to boot, so I am out of touch on how things are going in the major centres... Our only experience has been winnipeg, and it seems to be in the "infancy" stages as of yet with most of the doctors we have met (as in they have never heard of it, or flat out don't believe in it). We have been able to connect with a few docs
  9. This is going to sound off the wall - my grandma taught me to use this with my children (ds had ear infections/fluid build up constantly). It was neat that the ND we see also suggested this. It works like a charm for us every time... Slice an onion in half - put in oven for about 20 minutes. Let it cool to lukewarm, then place it over the affected ear while lying on your side (affected ear up ). I think there are germ busters in the liquid of the onion - usually takes pain away for good. I have done a couple of onions for tough cases...
  10. dd4 (she was 3 at time of 1st noticeable behavioral flare up) had a complicated start - first diagnosis of RF at 3 years, followed a month later with pandas symptoms. she was put on proph abx pen v more to protect her heart from RF. At the time of RF diagnosis, the docs also queried serum sickness - as they are not comfortable removing either diagnosis as she fit both clinical diagnosis, she is not able to have any amox based medication. When pandas was discussed with us by Dr. K, we did do a 14 day trial additional to pen v with azith (augmentin is amox based), but the azith tore her tumm
  11. I am from Canada as well, and one of the dr's we initially made contact with was Dr. T. He was super nice on the phone and talked to me at length - asked me to send dd's information, which I did. Unfortunately, I have not heard from him at all since April after the initial conversation. I called and left a couple of messages, and emailed a few times - but nothing. He really seemed fantastic, I know he is super busy, but I feel like a response of some kind would have been nice (even if it was to let us know to leave him alone ) His bedside manner on the phone was suberb though...
  12. Welcome to the board - this has been a great place for our family to find information, support, and understanding from others who just "get it"... We have dealt extensively with rages with dd4. We have had her tested for many other infections as well, but so far, all clear (thank goodness!). Her initial "set off" was in November 2011 - asymptomatic strep infection only later identified by elevated aso titers. Her titers have returned to normal, but it was months of behavioral issues before we were able to get things back under control. She was reacting to everything that she came into
  13. Welcome! This forum has been a great source of information for our family.... Unfortunately, we did not see any improvement in dd4 with abx for psychiatric symptoms. She has been on pen v proph. for approximately 8 months, plus she had done a 14 day trial of azith (which for us was a disaster with abdominal pain going through the roof). She has not tested pos for strep since starting the pen v, but the pandas symptoms are easily triggered for her by any other virus/bacteria she encounters (I can only imagine what strep would do...). She had a breakthrough infection of chicken pox that
  14. Great idea! We are only 7 months into this journey at this point, but here is a rundown... DD - normal term birth, small stature (and continues to be small). Started daycare around 6 months - had a cold/virus/ear infection every 3-4 months. "Spicy" child from birth - lots of crying, busy, testing boundaries, etc - but not clinical or overwhelming to parent. Just after age 3 - taken to dr. for increased urination. Unable to find an infection, symptoms slowly subsided over next week. Age 3.5 years - DD wakes up with what looks like pinkeye - no fever, pain, eating and drinking no
  15. I have used puppets with some success - dd4 "assigns" thoughts to each puppet and uses them to talk/act the thoughts. I have a "caretaker" puppet that talks to her puppet about how to make it better. For example - she perseverated on something in her closet when she was in her last flare. She used a puppet to pretend to be what she thought was in there, then my puppet did goofy things to make it go away. I found some success as it is a way to engage her in play during times when she has such a hard time doing that, and it can also help her verbalize some of the details that she can struggl
  16. I haven't read the article and do not have any great words of advice, but wanted to share that we just came through a cardiology appointment ourselves with dd4 - her original diagnosis in Nov 11 was RF and she has had periods of ongoing chest pain & fatigue. Thankfully, her echo was clean, but the cardiologist also had a son with PANDAS diagnosis and spoke clearly that we will have to be vigilent with monitoring for valve issues because of the autoimmune issue overall - not just with RF. She said that many people live with heart conditions and have no idea - if dd ends up with one, not t
  17. Sending warm fuzzies and hugs your way!!! You have been such a big source of info for me and others on this journey - I wish I had a magic wand for everyone here....
  18. DD has struggled with high BUN, high creatinine, and high ratio - all on and off when she has been in a flare. Her levels are definitely linked to dehydration, as we increase her fluid intake, the levels slowly return to normal. It took us a while to get a handle on it though as she has always had a great intake of fluid - it seems when she is in a flare up however, her fluid intake needs to be almost doubled or else her body registers as dehydrated? Don't know the science behind why that is, just that she needs way more fluid during those times, and then we are able to keep her levels with
  19. Thanks so much for the words of support - it feels so good to hear from people who really get it! She was vaccinated for the chicken pox at a year old - public health told us on Friday "this vaccine is not 100%, but it will reduce the severity of the bumps". Little did they know, the bumps are the least of our worries.... She did only end up with about 15 bumps and a couple of days low grade fever, but is definitely experiencing a full flare of symptoms (much more emotional lability this time though). She's not even 30 lbs soaking wet, but she had me on my parenting knees this weeke
  20. Feels like we have taken 100 steps backwards... DD4 wakes up this morning with spots that are identified as chicken pox. 4 hours later, we are standing on the sidwalk and an ambulance goes by - she starts screeching, putting hands over ears, and climbing/scratching her way up my body. We go in the closest shop, and she refuses to leave because the "ambulance is coming back". We finally get home, only to have her ask me to do a puzzle with her, then she starts arging with me that I'm not supposed to do the puzzle with her as the picture on the box only shows little girls, not moms. She
  21. sacpandasmom - reading your posts jolted me - it sounds very similar to my dd4. I have also felt very overwhelmed by the differing medical advice and trying to figure out what works for us. We work with a family dr, ped, naturopathic dr., and a chiropractor - and to be honest, the naturopathic and chiro is where we have seen the most results. DD was diagnosed with RF in Dec. 2012, so does take proph. pen v, but is currently on day 10 of 14 day trial of zithromax as advised by dr. k. It's been hard to tell if the zith is making any difference as dd was exposed to strep & chicken pox
  22. We are just in the process of getting dd4 diagnosed (through dr. k). We need to have a few more labs completed, but it is looking like "95% sure it is PANDAS". Her main symptom is the RLS, regressive & aggressive behavior. She will actually set up conversations (as much as a 4 y/o can do - ie: she will ask what day it is, then tell you that you are wrong kind of stuff) to pick a fight when she is in a flare. She first had symptoms in late 2011, and since then the list continues to grow each time her immune system is activated. She has only recently showed more traditional OCD kind
  23. Thanks for the replies! I was typing my next response and posted it and then realized LLM replied and answered my questions! Well done.... That really helps to clarify - I will be writing down all of the possible co-infections listed on this thread and will research other posts to get as complete of a list as possible to take to family dr. tomorrow.
  24. We have connected with Dr. K - he was leaning toward IVIG. He said that Zith would help provide temporary, effective relief (she can't do aug as it is amoxil based and we most likely had serum sickness after amoxil - not worth the risk), but that symptoms would return. He also said that we have time to decide as she is doing okay now. She falls out of the study as she has a past diagnosis of RF from november (which dr. k thinks was actually serum sickness, but the RF diagnosis is currently on her file until we can get through further assessments as directed from Dr. K.) I am going
  25. When to do IVIG treatment? I have followed some of your stories through past posts, and am wondering if you have any advice. My DD4 is just starting on her journey - January 2012 was the first time her PANDAS symptoms got to the point of interfering with her day to day life. The next was March, then a couple of other blips, but not like Jan & March. Now she is doing relatively okay. I'm sure the summer will be okay as the "bugs" tend to lay low, but I am worried about Oct/Nov when they all wake back up again... She is currently reacting to any virus/bacteria/strep that is around her.
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