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amy s

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Posts posted by amy s

  1. Hi pandas16. I don't think I've ever responded to one of your posts before, but I have read about you on here over the years.


    You raise some thought provoking points. Points I don't even like to bring to the front of my brain! However, still very interesting.


    I have to preface my answer by saying that my dd is doing perfect currently. And she has been for quite some time. Her pandas was a sudden onset type and was very exorcist like and that lasted for about 15 months of time prior to get getting ivig, and then she got better over the next year. She is now turning 10 this month. This all started for her 4 years ago, so she was quite young and I feel now she is healed (although I don't ever say cured).


    My dd illness completely changed everything about our family, my outlook on life, my emotional reserves and financial reserves (!). But now that she (and our family) is healed, we are BACK and stronger than ever, smarter than ever and more determined than ever to enjoy our life to the fullest and NEVER EVER take for granted being healthy. Seeing healthy children (her but also complete strangers at times!) playing brings me to tears now just being so happy that they are so lucky and able to actually play as children are supposed to do! Or even seeing children walking into a school building, same thing!


    My oldest dd is 25 now. I know the thought of having a pandas child will weigh on her mind when she is in that stage of her life; we've talked about it. I hope it doesn't deter her from having children. People in general go through horrible tragedies every day and thankfully it doesn't keep the human race from pressing on. But it sure did kick my butt for a while there and so too my dd's. So I do understand the question. If you had asked me during the middle of the experience a few years ago, it may have been a different answer. But after my pandas dd healed, I began to heal and once momma is ok the rest of the family is too. I would definately do it all over again!



    Good luck.



    amy s

  2. Hi Kim!


    Thank goodness things are turning around! I am so happy for your son and your family. My dd continues to do just fine, perfect as far as I'm concerned.


    It has been 4 years this month (2007) that she had her exorcist pandas episode which lasted for 15 months until she had her only IVIg (Nov 2008). While we saw huge improvements very early on (days) it took the entire year to continue to see improvement to complete normalicy- (literally all the way until Nov 2009). I hope you will soon find that everything levels out for your son and family. It sounds like we are lucky to have had our experience and subsequent IVIg when she was at her young age rather than during adolescence. Of course I always worry and wait for any sign that things will come back. She turns 10 this month. I can't imagine her a teenager and going through what she did when she was little. But at least now I know what to do for her.


    Thanks for the update and as always for sharing your story.



    amy s

  3. amy...again! love hearing "we are doing great!".....and i have to ask...is your daughter on antibiotics still (after the ivig) or were you able to stop?



    Yes, still on antibiotics daily. Something mightly big would have to happen for us to want to risk taking her off them.

  4. Fish oil-- my pandas dd has been taking 1000mg in the morning and 1000mg at night and does great on it. She was 'classic' sudden onset pandas (onset about 4 years ago)- 'exorcist' variety which went untreated for about 14 months- IVIG saved her and we will keep giving her the fish oil forever probably?


    By the way hello to everyone here! WE are doing great- she is doing awesome. NO ISSUES at all!


    Wishing everyone great successes kicking this!



    amy s

  5. So does anyone's kids have a small set back when the go swimming?

    my dd was doing great and then we took her swimming and there was just me and her in the pool and within 45 mins she started telling me that she knows her PANDAS thoughts are going away and that she has been doing good BUT!!! I keep thinking about that one thought that I keep having

    ( the one about dying) and I thought to myself ARE YOU KIDDING ME!!

    I swear just when we think that things are going to be ok something comes up.

    But she seemed to snap out of it again and seems to be doing ok again.

    So was it flipping back the pages from ivig #2 or the chemicals from the pool

    this never effected her before?

    I am at a loss.. like always






    My dd had a very severe classic presentation of pandas in the summer of 2007. After reading others mention it on here, I had wondered if the pool made her worse, but on hindsight I really don't think it did (for her). She had IVIg in November of 2008 and has done extremely well since. She has been taking weekly and sometimes twice weekly swimming lessons for the past 2 years and does not have any issues from it whatsoever, but she was pretty much fully recovered after her IVIg. She showers off after her swim lessons and washes her hair with a 'swimmer's' shampoo, but we don't see any changes if she is in the water all day and doesn't.


    Also, I wanted to mention that I agree that epsom salt baths are wonderful!!! You would not believe the amount of epsom salt I go through, it's almost embarrassing to go to the store and buy it. Anyway, I am the one who mostly uses it in the baths, mostly for relaxation but also I love what it does for my skin and hair. I don't have any problem at all with soaps or shampoos making the skin or scalp itchy or yucky. I bathe in it daily, sometimes twice daily! My dd also loves it, she has at least one, maybe two baths per week in it. I use about 2-3 cups of the stuff in a jetted bathtub. I find it very calming and relaxing to soak in it.

  6. Our Pedatrician would follow up, as long as the Immunologist would provide direction

    for them. Our Psychiatrist is who has pretty much taken over, and helped us far more than the Peds, Could she prescribe the antibiotics or whatnot to follow the guidelines? We just saw her yesterday and she ask me to make sure someone would be following up, so I didnt think to ask her if she would if she had the info and right direction.



    First of all, wishing your child (and family!) the very best with the upcoming ivig treatment. It was our experience that a psychiatrist would not prescribe antibiotics. Eventually the pediatrician got on board and now does the prescribing.

  7. Yes. I believe it is becoming an emergency. Her OCD is starting to go out of control. Scott Smith believes IVIG is the way to go. I have an appointment with Dr. B in Conneticut on April 18th. It use to be that she was very confused and agitated with SOME OCD showing, but now that we treated for Clostridia... she seems less confused and more normal, but the OCD is REALLY REALY bad. Before, she was stuck in front of a TV because she could not function. Now she is able 2 talk and communicte and tell me how severe her OCD is. She is up for hours brushing her teeth. Her gums are raw. She says the same sentence for two ours straight at night and I have to repeat it, but I never seem to get it right. She gets super agressive because I don't get it right. Melationin use to calm her. Not anymore. A low dose (12.5mg) seroquel helps a little, but if I go higher with this stuff, she throws things and REALLY flips. I also have a three day trip planned for Disney World on April 10th. Ugh...I did not see this coming.


    Wilma I am so sorry your dd and your family are going through this. I think many of us understand your situation and have also felt that it was an emergency that our child get IVIg. Please hang in there and do whatever you have to do to get the IVIg. I think you will find that when your child has pandas to this extreme, things such as disney world are not possible. I know I used to read this board and hear stories about people taking their pandas child on trips or letting them play sports or go to birthday parties...I could never relate to pandas in that way because my child's pandas was so severe that it just wasn't possible for us to do anything of the sort. If I could give some advice cancel your trip before you lose the money or plan to have a miserable time. When they are going through pandas exacerbation like the one you describe, it is just not the best time in your family's life to take a vacation. It's easier to deal with at home in a safe environment. We were once stranded in Marco Polo Airport, Venice, Italy for 4 hours...(among other places/times/bizarre situations). (We were living in Italy at the time--moved back to the states due to pandas). Good luck to your family. I wish your dd the very best and hope your dd has the experience that my dd had with IVIg. So far, she has only needed the one HD IVIG (over 2 days). It was a hellish time, but she has true recovery. Her acute exacerbation began Aug 12, 2007 and she got IVIG November 17 & 18, 2008.

  8. Absolutely not. No guilt whatsoever. But then my child eventually HAD to be pulled out for home school and the poor thing was so ill and with very little understanding in the schools..... NOPE..... No feeling of guilt in the slightest. The only people who should feel guilty are those who judged us during her illness.


    In the scheme of things- Kindergarten is NOTHING. For that matter, missing any grade -- the education will come --- but only if the health is there first.


    I did feel sad for my child, as far as missing school---> missing the interaction with friends and such. BUT, she truly wasn't getting that either, as sick as she was.


    You have different circumstances and have to make your own decisions based on those. Good luck and I hope your child has the same good results from IVIg that my dd had. (My dd had Hd IVIg Nov 2008)


    Keep us posted.

  9. So I finally got the records from our vist with the neuro. As he told me she has a dx of OCD, anxiety and possible ADHD but he also thinks she has Sydenham's Chorea. From what I've read that is just like PANDAS so is there really any difference and if he thinks she has that why wouldn't he dx PANDAS? I guess I just need reassurance that we are dealing with PANDAS no matter what the doc calls it.





    Well, I'm sure there are plenty of people who dispute it but to me Sydenham's is the same, except it's been in more literature and a more accepted diagnosis. The differences are that there are bigger and more adventitious movements with Sydenham's than pandas...but both have adventitious movements. (or I think the going rate is 30% of pandas patients). But to me, it's all the same thing on a spectrum.

    You will have an easier time of obtaining the care your child needs if diagnsosed with Sydenham's.

  10. YES. We noticed changes between day 1 and day 2 of IVIg. When you have a very severe case, I think the changes that you see are extreme. However, please know that we continued to see changes for many many months post IVIg. In our case, our dd is doing wonderfully more than 2 years post IVIg and I really hope that your child will as well.

    Happy Holidays to all!


    amy s

  11. My dd was exposed to scarlet fever (my ds had it) prior to her explosion of pandas symptoms (I think it was about 8 weeks prior). Also, at the same time she had a sore throat and fever, but did not culture positive so she was not give antibiotics, even though her brother in our household had scarlet fever and was on antibiotics.

  12. Hi folks,


    I just wanted to post an update about my dd as this month marks a big anniversary for her. November 17 and 18, 2008 she had IVIG and she has done remarkably well. Many of you were here when I was posting on here more frequently but I still check the boards almost daily and think about your children ALL THE TIME.


    I do not feel that my dd is 'cured'. I am still in fear that any moment bizarre behaviors will come back. But we have been lucky that so far she has only needed the one high dose IVIG (over two days). There have been a few times that I have increased her antibiotics to full strength for various reasons (slight variation in behaviors), especially within that first year after IVIG, and I still keep steroids in my refrigerator but have not had to give any.


    Briefly her story:


    August 12, 2007 she developed the sudden overnight onset OCD that was unrelenting, she was about to turn 6. Rages (I mean RAAAAGGGGGEEEESSSSS - you guys know the type)- began a few weeks after that. She was a very sick child and her OCD and behaviors basically turned our family's life upside down...but I know you guys all know what I'm talking about. She had the classic separation anxiety and urinary issues....she started lining up her toys and no longer 'playing'...


    her OCD was the most devastating though, as she would constantly tell on herself for things she thought she did or said or whatever. I mean like 50 to 100 times in every 5 minute period of time she would say things like, "Mom, my head says that I'm going to kill you" and "Mom, I just said a bad word" (she never did say the bad words) (plus many other bizarre statements- but those were her usuals). She started picking at her skin, at times with 20-30 open wounds on her body. Of course our family went through the wringer with trying to find ANYONE who could help us or knew what was wrong. Her rages were so bad there were police involvement and she eventually had to be homebound. A 4 hour rage (of us literally keeping her in a bear hug to keep her safe) was not uncommon at all. She was very much exorcist type of pandas. She had tremors of the hands, arms, head and entire upper body and walked like a hunchback. Absolutely nothing like my previous child.



    Our family was living in Italy at the time and she was a very bright young girl who would tour to many different countries, learning their language so she could bargain with locals at the markets and order in restaurants. She was (at least IMO) gifted at puzzles and languages. After exchanging emails with Dr. K in April (8 months later) I knew that we'd found the issue and she started on antibiotics but that didn't help and we needed to relocate back to the states. (By the way- we traced strep back to her brother having scarlet fever in June that year and she also was brought in to see ped. that same week with sore throat but swabbed negative so was not put on antibiotics-- sudden onset was 2 months later!) Things continued to be exorcist like but with the relocation and everything we just could not get IVIG until November.


    After IVIG things started getting better right away, each day and week brought new relief to our lives and with very few turning back the pages issues (but there were some). Each month was better than the last until about the 12 month mark when things seemed to be completely leveled out and normal again.


    Today she is an honor roll student, extremely funny, and just a normal kid again. Again, that doesn't mean that we don't all still fear strep. And we still keep her very close by (she doesn't go anywhere without us except school). Each day is a blessing, a complete gift and I hope all of you have that as well.


    My recommendations: I already know you are doing everything you can for your child....but don't forget to take care of yourself. Eat healthy and exercise if you can for stress relief. Find time away from the house (and pandas child at times), also find time and interests besides pandas research! That is hard to do, I know. PTSD is real, at least in my case and it messed up my life for a while -- when my child was actually doing fine---that is when it hit me! Difficulty sleeping, nightmares, unrealistic fears, horrible nervousness and unable to think clearly. I could go on and on. Finally I am finding that our whole family is enjoying life again.


    I wish you all the very best.


    Amy S

  13. Great post...


    I hate that I actually cried when they told me there was not a brain tumor seen in the MRI. (I know that sounds horrible....but...I think many of you might know where I am coming from)



    I hate...jeez. Really I just hate everything you guys have already written.


    I think we need a 'what we love' posting.

  14. In the beginning, when I knew my dd had pandas ...I wanted to increase the antibiotics right away when I knew she was around someone with strep. Now, after IVIg I do not increase antibiotics and she has done fine. However, it has been almost 2 years since her IVIg and I believe her immune system is responding much more appropriately.

    Someone else will probably chime in with some advice for you. What is your child's weight and currently how is your child doing?




    amy s

  15. Personally, if it were my dd, I would not write a note to get her out of it, based on the info in this post alone. Perhaps if she were in an exacerbation and had sore joints, etc I would? And even then I'm not sure if I would. I guess it would depend on severity of symptoms at the time.


    But just because my dd didn't like it, I would not write a note.


    Along with kimballot, I am trying to help my dd get more physically fit after several years of very difficult pandas symptoms, some of which kept her homebound and she got very little exercise.

  16. This is a very big part of pandas for some. Antibiotics alone did not help our dd and she had to have IVIG. You might see if you can try high dose antibiotics? We never tried that. This can be a horrifying OCD for some. It was for us. Confessions of the most horrible type and out of NOWHERE and upwards of 100,000 per day. Contact one of the pandas specialists. Good luck!

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