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 ?

That's a great idea - my son had Fears, Intrusive thoughts as well - he was 7 at the time, now 11 1/2 - I finally got him to Whisper to me I kept telling him it's no biggy - when he was being treated our doctor told us to tell him not to take "ownership" of the thoughts - since he was young we made up a "monster" and my son would say "monster" is telling me this....being your child is older it may help if you explain that its similar to a car accident brain injury...meaning that these thoughts are not his natural thoughts - it's an injury right now and it's going to get better - writing it down is certainly going to help ....sooner or later he will feel safe enough to whisper it ....the sense of relief to them is great ...it's like when a child has the germ phobia and they wash their hands...and feel better - as soon as they release the thought they can move on....Also - our son sleep with my husband for a long time...it made him feel safe. My son's thoughts were REALLY REALLLY BAD....and at times he was SOOOOO hard to hear coming from child ...but EVERY time he told me I just shrugged my shoulders and said.."No big deal is that it?" and he would say yep and run off... At my son's worst ...I would say he had 10 thoughts an hour....

Way to go! Great Job ! I'm sharing this with everyone I know! Hope we can get picked!

Many people ask me what was the recovery like - the best way to put it is - that it is very MUCH like someone coming out of a coma...brain injury The major symptoms (whatever your specific childs was - mine was OCD/Tourette/Tics) - get better pretty quickly (woke up) - then it takes a while for everything to get back to normal - their systems relearn , calm down, the brain settles back. It was almost 3 years total , when my son was completly back - but it was much much better after 1-2 months

I also have been using these terms for years (to the non pandas community - people who don't know about Pandas or understand it) - I state that my son is in "recovery" - pandas is in remission - although Dr. K - again believes he is "cured" - I also compare Pandas to that of a brain injury someone might receive in a car accident - how their personalities change. AFter IVIG - its like coming out of a coma - things are MUCH better then it takes a while for everything to get back to normal.

Pixie - trying to PM you inbox full

My son according to Dr. K is "cured" - I really don't like throwing out that word - Dr. K is his primary physician now. I'm not a doctor and I can only share my story - but if you have a true Pandas child - it is a treatable disease...and you can get better. Dr. K doesn't use IVIG for all cases - I would just like to point that out as well - but in the cases that he has used IVIG he has had huge success... I'll follow up tonight!

Good question - looks like there are two foundations currently - Pandas Foundation and Pandas Resource Network - I will talk to both and Dr. K - as well as some of my peers ...I've looked at both sites - PF and PRN - I will then contact both foundations and learn more about what their plans are for the funds donated... Currently I know that PF has the "Got Strep" campaign and has begun distributing 50,000 informational cards to doctors offices and clinics regarding Pandas - the object is to "inform" and children diagnosed sooner ...this was PF's first task which is already underway. I've read that PRN - donations with be linked intially to research projects - for the study of Pandas both would be good - I am personally interested in seeing the foundations - help the families that are active in the disease - relief efforts

Wow - fate works in strange ways ....I didn't even see this post! I am actually going to see Dr. K today for this specific reason, to find out the brand and dosage that he used on my son 4 years ago and if he is still using the same today or has he refined the process. When I return form the meeting tonight - I will post my findings for you!

Good morning... Today I meet with Dr. K to discuss my son, who is 4 years post IVIG and symptom free...I want to share with all and say things will get better.....I am very interested to find out who the manufacturer was of the IVIG that was used on my son...we need to target these specific companies - to get them to donate money to the foundations....to use as grant money for families that need financial aide and if the companies do not want to donate money...can they donate product for the treatment, etc. I know that Talecris has been a supporter of the research but that is just one of many manufacturers...I am going to be working on getting dollars for the foundation - I have set aside work hours to do so...also we do need to start to target the Insurance companies...does anyone know if this is going on? Perhaps one function of the foundation should be someone to help with Insurance disputes, I know that when I was going through this - last thing I wanted to worry about was processing paperwork - back and forth to try and get my medical bills paid - What about a fundraiser - currently I sit on the committee for Cystic Fibrosis - I was asked to do this prior to my son becoming ill...I have worked the last 3 years on the annual fundraiser in Chicago which on an average has raised $150,000.00 in a one night event....profit being about 70% = $105,000.00 ...the organization has regional fundraisers ....I know many of you are "in' the disease right now and don't have time for any of these ...I remember as if it were yesterday ..just an update

Hang in there! It WILL get better - it's been 5 years since we had IVIG - and my children are very close in AGE - at the time my son with 7 daughter 8 another son 5...they were very sad and often received the brunt of my son's anger....BUT they were very protective of him - as well.... I echo Vicki - in that often I would have them leave the room...private time to calm down and LLM as far as one on one - time ...we 4sure did that.... I'm sure your all doing this - but when my son had the rages - I was nonreactive ....closed the door of his room and I sat on the floor and waited for him to call down....I was stronger than he was...so physical reactions were a non-issue. As for older children and adults - today...when I speak of my son's Pandas I tell them to think about a brain injury that someone receives in a car accident - how this can change their personalities....it's very similar ...the brain needs to recover., and that's have I refer to my son - that he is in recovery - or remission , I don't state that he is "cured" - I don't think I can do this...he is symptom free - YOU WILL MAKE IT THROUGH THIS AND YOUR SON WILL GET BETTER - I said that every day to myself there was no doubt ...it may take people longer then others...and variations of treatment - but it will happen