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junkyardjean

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Posts posted by junkyardjean

  1. 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 lays there quiet, but is awake. It doesn't seem to be bad dreams, and she is not complaining of intrusive thoughts - it just seems to be a mixed up sleep/wake cycle.

     

    She is getting physically tired, but I'm not sure what to do? We do the whole routine thing, same time every night, etc - but it is not making a dent. A neighbor suggested melatonin? Anyone have success/unsuccessful stories of what they do or what works?

  2. 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 protein as well, causing a variety of symptoms. The plan is to cut them out completely for 6 months (hopefully allowing time for her body to reset), then reintroduce slowly to see if she can handle them.

     

    After one month of starting the cut-out, her excema has completely cleared. We got further proof of the issue when we were at a gathering last month where there was only meat, and I wasn't prepared with alternate food for her, so she had 3 bites of chicken. Within 10 minutes, excema had spread across her face and behind - it was unreal....

     

    I don't know if this applies or not, but thought I would share if that is okay :)

     

    Good luck - there are many people on this board who are well versed on blood work and what needs to be requested - I hope you are able to find further answers for your child!

  3. 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 her escalating abdominal pain, and she had to go off after the two weeks and go to a different abx. She still asks if she is going to have to take "that white medicine" - poor kid!

     

    Good luck, I will be sending warm wishes!!

  4. 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 100% accuracy at this point...

  5. 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 make decisions for our children, and this is what works for us at this time. I hope that when I share our story, I'm not making it sound like people should do one thing or another - each family has such a personal decision to make, and from what we have experienced so far with pandas (our journey being under a year however), is that nothing is forever. Treatment changes, decisions change, and research will continue to evolve and provide us with more information to make these decisions.

     

    After seeing what this does to my child, I have nothing but best wishes for families dealing with this - I just want to provide our story as that was what continues to be most helpful to me. Reading through the personal stories and then sifting through all of the information to help make the most informed decision for us.

     

    I'm sorry if I offended anyone...

  6. 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...

  7. 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 who seem to be on board for diagnosis at least (and luckily a fabulous ND who is 100% on board), but we have not actually met them in person yet (beyond the ND)- so I am holding my breath to see what happens at that point.

     

    Any news - good, bad, or ugly on the canadian front?

  8. 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...

  9. 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 tummy up into much pain, so we did not continue. She did stay on the pen v until just recently - but due to escalating side effects (more abdominal pain, teeth issues), we decided to take her off of the pen v as well.

     

    We are working very closely with a ND doing immune boosting treatments and very much using food as "medicine". She is finally back to baseline, but I do have a knot in my throat for what is coming in the fall, as strep usually hits her age group around Oct/Nov pretty heavy. My hope is that she can at least get a couple of months in of no major flare ups so her immune system can continue to recover and get stronger - I am very much open to using short term abx to help (but have noticed that Advil had more impact - as I read on the forum it must be due to the inflammation??). They originally wanted dd to go on pen v until she was 18 years (which would be 15 years in length), but as we did more research on that length of abx, it got too scary for us....

     

    We are also very lucky that she does not seem to have any other infections (such as lyme, bart, etc) that have shown in her blood as of yet...

     

    I constantly question if we are doing the right thing - there is no clear answer on what will work for her individual case. I remind myself that we are making the best decisions we can based on the information we have at that time - it often feels like we are taking blind leaps!

  10. 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...

  11. 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 contact with - virus, bacteria - if her immune system was triggered by something, her behavior almost immediately declined.

     

    We have decided to go with natural methods at this point. She receives constitutional hydrotherapy treatments from ND - we went for five treatments a week (over three days) in the beginning as she was down to about 10% functioning. The idea behind this treatment is to strengthen, tone, and modify her immune system. Her white blood cells came back up to normal after a couple of weeks of starting the treatments, and her blood results have continued to steadily improve as time has gone on. We often didn't leave the house because I felt I couldn't manage her behavior and it was prevention to just stay home as I could contain things much better. She has also switched to a very clean diet (whole grains, veggies, fruits, beans, nuts), and that has definitely helped. She has also had a couple homeopathy remedies, but used mostly for the rages. She is not using any currently, and we have been lucky enough to get her back to baseline. It is nice to have my girl back...

     

    She is down to two hydrotherapy treatments a week now, and it definitely has helped in her case to support her body to fight things off without the behavioral upset. We have also just made the decision to take her completely off her proph abx due to some nasty side effects. Different things have helped different people, and I think that has been the most frustrating part for me - there is no clear path on what to do. I am just beginning to feel like we are claiming back our life, my role as a mother (which I have questioned much too!! I feel your pain on that :) )

     

    It helped me immensely to read historic posts on this forum as well - when you find a story that sounds familiar, send a pm to ask questions. People on this board have a wealth of knowledge and there is no need to "reinvent the wheel".

     

    Good luck!

  12. 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 pretty much leveled our house for a week.

     

    I feel like a downer - I know others have had great success with abx. Our greatest success to this point (dare I say we have finally hit baseline for three weeks in a row! Hurray!! Even her ezcema is gone...) has been working on strengthening her immune system with a ND (hydrotherapy treatments, nutrition). Not for everyone, but dd has had a hard time with abx (abdominal pain, horrible teeth, etc). We are actually thinking of taking her off completely due to side effects.

     

    The one thing I have learned so far is that we will need to flex and adapt the treatment according to what she is presenting at the current time. I have let go of the idea that there is going to be a "permanent" fix to this - I think that as she grows and symptoms develop, we will be changing things up to match.

     

    Good luck!

  13. 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 normally. Take to dr - notes indicate red, pus-filled throat upon exam. Leaking from eyes is "pressure from sinus infection". No strep test done. Placed on amox for 7 days. On day 7, dd complains of wrist pain. Her wrist swells up within 2 hours, is red and hot to the touch. Within hours, her knees, elbows, ankles swell, red and hot. Also gets rash. Treat with advil & tylenol - affected joints migrate. A week later (rash gone, joints managed with advil), she gets a high fever which lasts approx 7 days, very, very lethargic. Gets diagnosis of Acute Rheumatic Fever (query serum sickness). Prescribed pen v until she is 18 years old as proph. ASO elevated, as well as ESR, CRP.

     

    One month later, dd starts experiencing behavior changes - hallucinations, raging, irritability, clumsiness, sensitivity in moods. Tires easily, black bags under eyes, gray skin coloring. Slowly improves over 3 months. Dr's indicate sydenham chorea.

     

    End of March 2012 - DD spikes a fever - taken to dr and told "just a virus". Within hours of fever starting, dd undergoes complete behavior change. Sensory issues, OCD, verbal & motor tics (minor), raging, self-harming (head banging). Consults indicate PANDAS.

     

    Since March, dd seems to be reacting to most virus & bacteria she encounters. We are working with naturopath full time to boost her immune system and that is really keeping the flare-ups much shorter in length (victory feeling when one of her best friends was diagnosed with strep the day after dd played with her all day - we only had 2 days of issues!! Hurray!!). We changed her diet - she is on fruits, veggies, beans, whole grains as her immune system was kicking up after eating certain things. It is like her immune system has gone completely rogue on everything.... Eating yogurt, cheese, etc (which she ate before with no problems) will literally cause excema to grow on her cheeks right before your eyes.

     

    Currently doing testing to rule out other infections (so far, no immune deficiencies or infections present).

     

    Very grateful to have found this forum and that there is current research happening on PANDAS. We are still in the process of wrapping our heads around everything...

  14. 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 struggle with due to her age (and therefore helps me fill in the medical people). I've noticed that it also helps to take it out of her head, which helps her relax a little.

     

    That being said, and as you mentioned in your post, things that work often only work for a short period of time and then we are struggling to find something new to provide some relief...

  15. 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 to worry off the hop until all information has been gathered (easier said than done I would say - it is her heart for crying out loud!!)

     

    My thoughts are with you - I was majorly stressed before the appointment and know we are lucky that she has had no damage up to this point....

  16. 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 within normal ranges.

     

    Sorry, I'm not much help on the detox portion though....

     

    Good luck!

  17. 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.... :wacko:

     

    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 weekend! Thankfully we saw ND today again and she was able to give her a remedy that has seemed to help for today. We gave lots of advil this past weekend - it seemed to only help about 2 hours max per dose time, but it was pretty bad so 2 hours felt incredible...

     

    I'm so scared we are losing sight of her true baseline - new normals are seemingly created every day. For example,when she is not raging, I feel so relieved that it can be easy to feel that is baseline (even though she is still clinically defiant, ocd symptoms, and separation anxiety through the roof) - I'm finding it hard to hang onto "what used to be"??

     

    I don't know, maybe I'm losing it too :blink:

  18. 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 literally followed me around for an hour trying to continue the argument - I could not distract her in anyway. Black bags start to appear, then comes fever. I'm thinking a nap might be in order (she hasn't napped for three years, but she looked so bad & tired), I go to put her bed - wonderful, wonderful hour long rage - after I removed myself after the first 15 minutes from the kicking/hitting/biting and made sure she was safe, she screamed at the top of her lungs for another 45 minutes - throwing in "my head is hot, my head is hot" (no kidding, so was mine, but for totally different reasons...) She slept for over 2 hours, then woke up fighting again as different things "are not right!!".

     

    I don't know if this is better or worse, but now she is with her dad outside and seems perfectly fine for the moment :blink:

     

    This is really kicking me down. I feel so teary, angry - definitely going through the grieving process of trying to accept our new reality that this is going to be a long haul...

  19. 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 right before starting, so she is just coming down from a flare (most of her flares now are emotional & sensory in nature - OCD 75% gone since working with naturopath & chiro on immune treatments)

     

    A very wise mom on this board pm'd me with a very great piece of advice for which I hang on to daily - you know your child, your instincts will help lead you to where you need to go. At work, we have a bit of dark humor (social workers), but based in real experience - Try something, if it doesn't work, call it assessment. If it does work, call it intervention - either way, you have to keep trying....

     

    I try to find my "wise mind" often, and have pulled together a team of support just for me - when I'm feeling bogged down in opinions, research, figuring out the next steps - I call a "conference" with them and debrief. I'm finding that through the debriefing process, I realize that I do know the path that is going to work for us for the time being....

     

    Good luck, and know you are not alone :)

  20. 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 of stuff - will perseverate on topics, verbal "hiccups" in her voacabulary (almost like a stutter), confessing, germ talk, lack of eating. However, the OCD stuff is small in comparison - her main difficulty is the defiance, loss of focus, loss of impulse control, etc. She also got clinical RLS when this all started in late 2011.

     

    Hang in there!

  21. 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.

  22. 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 to ask family dr to rule out some of the possible co-infections - some have already come back negative, but there are some in your list that have not been checked yet.

     

    I guess my main thought is this - if she has the IVIG treatments now (after ruling out other infections), will that help save her from future relapse? Or is IVIG more about helping current symptoms? Would IVIG help stop things from getting worse in the long run?

     

    i guess I'm struggling with the when question - does IVIG make sense to prepare to do now as more prevention, or do we wait until she is incapacitated again, and then look into getting it done?

     

    We are in Canada, so going the IVIG route will be expensive (have to do in states and pay out of pocket). We are also working with ND, so we haven't ruled those options out either. Million dollar question we all ask ourselves as parents "what is the right thing to do???" :)

  23. 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.

     

    Is there benefit to us pursuing IVIG now? Should we wait until her symptoms are bad again? Will having IVIG when she is doing okay have any benefit?

     

    There is so much experience on this board - because dd is 4 and we are just starting this journey, I am so thankful to have a place to ask my seemingly millions of questions....

  24. Time has been quickly ticking by!

     

    We are still doing the hydrotherapy treatments with ND, and that seems to be helping - DD4 has had several infections that have caused increase in symptoms, but they are now only lasting 2-5 days, instead of the 3 weeks. Only the sensory issues seem to hang tight - after dealing with some very aggressive rages, we are closer to baseline than we have been since November 2011.

     

    We had our phone consult with Dr. K, and he gave me some bloodwork and echocardiogram to request here to help confirm whether her sickness in November was actually RF, or serum sickness (he is thinking more serum sickness). He then went on to say that she is now dealing with PANDAS that is being triggered by any immune activation. From her records, he thinks her first flare was just after the age of 3 (we had her in walk-in clinic due to increase in urination after a strep infection - of course, no UTI found)

     

    Now, next steps to get Dr's here to get on board. Dr. K was wonderful, full of information, and was the first medical personnel to make real sense of her symptoms. We will get the labs done and send results to him to see where we go next...

     

    Two days later, we had to see the ped that has been carrying her case in the city(and who is not a PANDAS believer and keeps telling me about parenting strategies). I swallowed everything I had to play nice - smiling, nodding, saying thank you for the parenting tips kind of stuff. I feel like I was definitely dancing the dance to get what we needed (echocardiogram in particular). It's unfortunate that he is not willing to open his mind up as he seems to be very smart and a good doc in other aspects - when I broached the subject of her behavior being linked to immune activation, his response was "I have never seen that in my career. You have probably been doing a lot of internet reading - those are extremes and laymen can be dangerous in trying to diagnose with internet information". Right then, my smile came on my face, nodding - picking my battles. Our family doc will be the one who will need my energy.

     

    We are definitely living day to day, and I try not to drown in all of the unknowns. She is my child, and the only option is to keep putting one foot in front of the other.

     

    Sending warm fuzzies of support to everyone here :)

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