Uptodate.com pamphlet about PANDAS!

[monarchcat]

My brother's girlfriend received this pamphlet and gave it to me. I believe she works in marketing for the company. I was THRILLED to see that information about PANDAS is reaching more people. I scanned it in and you can view it or download it here: http://www.box.net/shared/mnt5ryzlp4

 

I haven't read it in depth yet, but it looks pretty good. Interested to hear your thoughts!

[monarchcat]

I see now that it says "June 9, 2009", so maybe this came out last year but she remembered it and found it since she knows about my son. I'll have to ask her when I see her next.

[kimballot]

Monarchcat-

 

Thanks for posting this! I've not seen this article before. It looks like it might be from a 2009 adv exp med biology article. I really like the article but not the summary at the end. I like t hat this takes Kurlan's work and puts it in its correct context with other current literature (interestingly, the author of this article is a former colleague of Kurlan's).

 

For once, he is presenting the fact that Kurlan's work found that

-the kids with PANDAS had more strep infections than the kids without PANDAS,

-the kids with PANDAS had more exacerbations than kids without,

-the kids with strep were treated in this study,

-the kids with PANDAS had many exacerbations that were not directly linked with strep (so there may be other things that trigger exacerbations)

-most kids had a relatively benign course IF they were treated with antibiotics and neuropsychiatric therapies.

 

These are all important facts for our kids. I also like that they talk about immune modulating therapies (IVIG /PEX) for kids who are more severe and show that there are some benefits that have been shown, though it is not the first line of defense for PANDAS.

 

However, the summary at the end does not match what the article says. The summary at the end applies only to mild/ initial cases, with a recommendation to not use prophylaxis or immune modulating therapies, unless there is compelling evidence. We need a rating system for PANDAS to say who is mild, moderate and severe. That might be one way to help sort this out.

 

I am going to try to find out how to get purchase copies of this. It would be a good thing to carry and give to people who ask about PANDAS.

Edited May 27, 2010 by kimballot

[MomWithOCDSon]

Thanks for sharing this! I just downloaded the file and will be adding it to my "arsenal."

[ajcire]

One of the pediatricians in my kids practice gave me his copy to borrow.....he didn't quite understand just how much info I already had. He obviously is not a totally non believer as he pulled this out of his pocket and handed it to me and told me that he wanted me to have all the same info as him... I had to hide a chuckle at that. He was really proud of himself for having this info. I should have handed him all my packets and told him I wanted him to have the same info as me... But it was still good because he at least had come around from the first time I had asked him about pandas... at that time he told me he didn't know... he wouldn't shut the door on it, he knew strep could cause all sorts of whacky things but he really seemed doubtful that my son could have it because he felt if it was real it was rare. That said, I took the pamphlet home and I read it... I stopped in my tracks on page 7 and called the office to leave him a message to call me... I really wanted to know why then different doctors in that office kept treating my kids with amoxicillian for strep and why the one dr. there who was willing to write a script for a month for me was adament it had to be amoxi..... He tried to come up with a good explanation but I definitely gave him something to think about... Next time I was in I returned the pamphlet to him as he had asked (I left a book mark on page 7 for him) and he was really funny... still not grasping how much I had already researched this... he told me that I could have kept it longer, copied it whatever I needed.... 3 days later I got my own copy in the mail from him. It's a start.

[kimballot]

Ok - I am taking back my glowing review... I am even going to edit my previous post. I did not read the summary and recommendations at the end. Once again, the summary really does not match the content of the article. If you have a doctor who is reading this, please encourage him/her to read the entire article - not just jump to the summary.

[memom]

I have a subscription to up to date and have for years. When my daughter had her first severe exacerbation 2 years ago (milder symptoms of OCD for many years prior to 2008 but still functional and not diagnosed), and the Psychiatrist who evaluated her mentioned Pandas, I went to Up To Date for information. Because the Psychiatrist and our Pediatrician didn't know how to treat it, I trusted UTD's suggested treatment plan (and the NIH) of mental health approach. Since it had been 9 months since her last documented strep infection and that was treated, the physicians thought no need to treat with antibiotics (despite continued elevated ASO titers) and I went along. We lost her entire Junior year of High School with severe debilitating symptoms despite Zoloft 250mg daily (maximum adult dose) and weekly CBT. Never in my life have I ever had a patient on that much Zoloft! At the end of her Junior year she got yet again another Strep infection and I watched her symptoms ramp up even more! It was at that moment that I took matters into my own hands and went into Pandas treatment mode. We are light years ahead of where we were last year at this time after surgery, steroids twice for a total of 2 months and antibiotics (and a few failed nutritional and supplementation approaches), but now have foundational dysfunction that I am hoping to rid with IVIG.

 

I felt angry with the time lost because of UTD. Unfortunately most of the physicians in practice use this tool (and FPMD's), and are going straight to the treatment suggestion portion of the article suggesting mental health approach. I think of all the things that are setbacks for our kids getting adequate treatment are the NIH website and Up to Date.

 

My two cents for what it's worth.

 

Ellie

memom

[Kayanne]

I think I've seen this...My daughter's pediatrician printed it out to show me. He said it was info that he got from the local hospital...it helps them to keep up to date with medical issues. I scanned it quickly, and could tell that it was out-dated and followed the NIMH recommendations that IVIG and Plasmapheresius should only be used in clinical trials, and that antibiotic prophylaxis are not called for. I told him I didn't agree with those conclusions.

 

I told him about the Columbia Mouse Study that came out in August '09...He hadn't heard of it.

 

However...I think it is a Big deal that the word is getting out that these kids need to be evaluated for strep at the on-set of symptoms.

 

I do think catching this early it really important...I thank God every day that our daughter's pediatician made the connection between her OCD and recurrent strep infections...perhaps catching it early would decrease the number of IVIG and Plasmaphereisus procedures required.