amy s

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. regards, amy s

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. regards, amy s

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

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! regards, amy s

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.

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.

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.

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.

A positive ANA is an indication that there is an autoimmune disease present.

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.

fr88 - thank you so much for sharing!!!!

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! Regards, amy s

Yes, prior to IVIG my dd did something similiar to this.

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.