Pandas_chicago

Vickie, I wanted to personally thank you for putting together this forum...It was MY HONOR to present yesterday ...the time and effort you took this to put together was shown in the results. Leslee

Pixies Mom First off blessings on the success - and if you saw my posts , my son is off his antibiotics - I too asked about the additional testing and I too was given the same answer, you son is fine ...why look ?? I too question about what I should do, I watch my son every day - he has been off for about 2 months now...tomorrow will be 5 years to the day that he got strep September 23, 2005 overnight he was a different child. My thought's are this and I'm just a parent who has been through the process like everyone else - there is no Lyme issue with my son, he was PANDAS from Strep. I do believe there could be some similiar issues with a Lyme based disease but I don't believe those cases are Pandas case soley ...meaning that they are in conjuction with. Being that you are in Chicago - I would love to network...

Thank you so much for letting us know there is hope. Can I ask... Does well mean your son is 100% / 95%? How long has he been at the well point? So, was the treatment that worked one IVIG and 4 1/2 years of Keflex? Any therapy - CBT or ERP? Please do keep us posted on how he does post treatment. Thanks!!! Antibiotics and steroids - then IVIG then Keflex...no CBT or ERP needed - he has been 100% symptom free for 2 1/2 years

Sure - my son became ill September 23rd 2005 - he was 7 years old....he had IVIG Febuary of 2006. Today he is 12 years old

4 ½ years post IVIG. My son has been on 500 mg of keflex daily since. Dr. K has recently taken him off – giving my son a clear bill of health. I am nervous – but posting today to show that there is hope – it may take a while but Your children CAN recover! Again, there were times when I thought I was going to give up I couldn't sleep, eat, think , work, take care of my other children....it's like a nightmare that you can't share with your closest friends - they don't understand and even if they say they do they don't........when you have a bad day - know its ok....it's ok to get angry with the insurance companies - it's ok to get angry with the doctors....sometimes it takes a blow up to refocus... All the Pandas Children and families are in my thoughts daily..

My child had random irritability. I don't know what would help. Sometimes epsom salt baths were calming, if we could get her to take it. But of course the effect was temporary. Really, the only thing that REALLY helped my dd was IVIg. She just continued to get worse, and worse and worse until she had the IVIg. Monachat, has your child had IVIg yet? When my dd would rage, I weighed approximately 100 pounds more than her and there is NO WAY we could do that exercise stuff, just because of the quality of her rages. Her rages at times required 3 people to hold her, for everyone's safety. Even attempting to be near stairs might have been a deadly accident waiting to happen. Right, my son's were residual side effects - his main issue was OCD, so it was never as bad as your experience, that being said - I can see how exercise wouldn't work - it's scary how this disease effects the children all the same, BUT different - it sounds as if your daughter is on her way to recovery though.

My son had irritability huge – he would go into full on melt downs out of the blue over the smallest of things, Know one was out of his target zone – unfortunately for us, alongside the separation anxiety, after IVIG this seems to linger longer – it has resolved now. Exercise seemed to help, when he was in a rage I made him run stairs in the house – I would start with five sets, if he was still angry, five more…this tired him and he would eventually mellow out. It wasn’t an option – I’m bigger than him and sometimes I had to stand right behind him on ever step …but we did it…it made him physically tired….which helped with the rages.

To all - I'm posting only because I think my last post may be misunderstood - I am not leaving this forum ...This forum has been a gift to all those who find it. I'm just going passive - if I feel I can help someone or give some input, I will PM them and write to them directly, If you have any questions or want my direct email ....Feel free to PM me as well. P.S. - I've got a lot going on in the form of education of Pandas in the Chicagoland area - it's exciting and good for all!

To all that read this post, I have been on this site for 5 years and have spoken personally to at least 200 parents. My son is considered "cured" and I feel blessed by god and don't know why I am so fortunate to be one of the one's who is in recovery. I have no ulterior motive but to give back and help "behind the scenes" - when I was going through PANDAS I didn't think I was going to be able to survive it - and having come through and living such a "normal" life I feel like it is part of me and I need to help others. I have tried to be an advocate for parents who are in the disease now - who are listening to every word people are writing on this site - who would go to anyone or see anyone to help their child - to understand and be educated I knew people would be upset with me - but I knew I was helping others....don't be afraid to ask questions ...If helping is ones goal - they will answer. Sincerly Edited by Sheila Rogers

http://www.versaillesmedicalspa.com/denis-bouboulis.html This is interesting - a was sent this link today , as I was unaware that Dr. Bouboulis runs a Medical Spa - Take a look!

Lynn could you elaborate on Dr. B clinical experience with PANDAS children...It is my understanding that Dr. Leckmann referred Dr. B's First Pandas case approximately 8 months ago? And that he followed the "well know" doctors protocols? - My Docotor who is Dr. K - who has been treating Pandas for over a decade does look closely at the patients Titers - its part of the clinical diagnosis, sometimes they rise and sometimes they don't - each childs ENTIRE clincial picture is taken into account, for example DNASE scores -- which are more important then the titers.

Hello everyone! I just wanted to share some news - as always I have been working behind the scenes on some projects and I wanted to let you know that I did have a long conversation with one of the Doctors and Board members of Talecris - regarding current Pandas research funding, how they plan on using the funds, what is the future...etc... It is exciting that one of the heavy players in the IVIG manufacturing is on board with Pandas - I asked the Doctor if they could help with grants for insurance mediation and or possible financial assistance when families do not have insurance. The response was that it will be dependent on a couple of factors, 1) - the outcome of the clincial study 2) the medical community ...meaning if it becomes an approved protocol for treatment - which may be coming down the pipeline in the next two years. ....but he sounded optimistic.....It just takes one major company to recongnize the disease and others will follow!

I am planning on attending. If anyone would like to meet at the conference and have lunch and or network I would be up for that - it may be nice to share, if people wish to stay private that is respected as well

I plan on attending to is anyone attending ?