Science, Studies and Success stories

[PANDASmcnuggetsw/fry/coke]

Hi friends,

 

Like you probably, I am staying up all night trying to learn as much as I can about PANDAS since this train hit our family this past May. I am trying to read and understand all the science. But I don't get the recovery part. If the abx kill or mostly kill an underlying infection, which has to do with the autoimmune response and possible swelling of the basal ganglia, then why don't symptoms completely go away when the infection is cleared?

 

Also, are there some success stories that some of you can share and when during the illness they occurred and the age of your children? I'm scouring this site for these.

 

Are there any studies that followed the children who were subject of the studies when the disease was first being "discovered" in 1998? How are these young people doing now? Is this disease truly pediatric or does it continue to adulthood? I believe Dr. k stated on the phone a week ago that there may be an adult version?

 

Thank you for bearing with me. :-)

 

PANDAS McNuggetsw/fry/coke

[Phasmid]

Not being a doctor, I can only offer this: In most disease conditions, it is what your body is or is not able to do in terms of healing itself. Antibiotics only kill microorganisms. Some offer additional benefits such as anti-inflammatory properties. Once an autoimmune condition is set in motion, the body's immune response must be "modulated" or modified (turned off temporarily). This is being done by either a short treatment (up to 30 days) of prednisone, or something like IVIg. The symptoms of an autoimmune process would take longer to go away than the thing that caused it. The body is helped by these treatments, but it is still up to the natural body processes to return a body to normal function. Some take longer than others in healing.

 

My son's worst (very horrific motor and vocal tics) symtpoms were remedied very quickly with the immediate use of antibiotics. There is an underlying autoimmune condition that, I believe, is responsible for the remaining, very mild OCD stuff he still has. Antibiotics rid him of active infection over one year ago. Recently, he has been on prednisone. While it is working, it is a slow process.

 

Hope that helps...

[thereishope]

This question comes up every so often on here. I can't seem to find a couple threads I had in mind, but I will keep looking. As for kids doing well now, I think some of them go on to have normal lives and slowly leave the forum and their success story becomes (in a sense) lost. Here are a couple I was able to track down...

 

http://www.latitudes.org/forums/index.php?showtopic=5315&st=0&p=38181&hl=inspiration&fromsearch=1entry38181

 

http://www.latitudes.org/forums/index.php?showtopic=7980&st=0&p=65080&hl=pandas_chicago&fromsearch=1entry65080

 

I am cautious, but happy to say that my son is currently doing well. I don't say cured and would proabbly never say that, but he is in remission. His last strep infection was in March 2009 and he has been fully recovered since Sept 2009. PANDAS surfaced on his 5th birthday. He will be turning 7 in Sept. He had 3 strep triggered exacerbations and smaller ones due to viruses and allergies. Luckily, for us, it seems the further we get from that last strep infection, his reaction to non-strep triggers have diminished. I do believe if he should contract strep again, the cycle will start all over. He got better with antibiotics and a lot of patience. He also had residual OCD to overcome with his last episode.

 

As for the original Swedo kids, I thought there was going to be follow up but haven't heard anything about it recently.

Edited July 22, 2010 by Vickie