EAMom Posted September 16, 2009 Report Posted September 16, 2009 http://jcn.sagepub.com/cgi/content/abstract/20/5/424 I haven't found a free-full text version.
peglem Posted September 16, 2009 Report Posted September 16, 2009 Here's one I found interesting. Using PEX in adult cases that had childhood onset: http://www.turkpsikiyatri.com/en/default.a...icle&id=592
dcmom Posted September 16, 2009 Report Posted September 16, 2009 peglem- thank you for that study. Very interesting. We are beginning the route of pex...
Megs_Mom Posted September 16, 2009 Report Posted September 16, 2009 Can someone start a pinned thread of studies? I know a lot are in Buster's history thread, and I go back there a lot - but I'd like to be able to easily refer back to this one - it's actually amazing. If I can do this myself, can someone tell me how? Sorry, I am kind of a newbie here. Here's one I found interesting. Using PEX in adult cases that had childhood onset: http://www.turkpsikiyatri.com/en/default.a...icle&id=592
bronxmom2 Posted September 16, 2009 Report Posted September 16, 2009 Hey EAMom, I have access to that journal (Child Neurology) through my university if you want me to email you the full text.
EAMom Posted September 16, 2009 Author Report Posted September 16, 2009 That would be great...I'll pm you my e-mail.
P_Mom Posted September 17, 2009 Report Posted September 17, 2009 I was felling really good and optimistic today after hearing about yet another case of a child in the NIMH study who grew up and seemilngly out of strep and PANDAS.......heard the same thing from Dr.C (second hand).....even without IVIG or PEX...these kids improved after puberty. Now...this study......bummer.......why are these people still having exacerbations into adulthood? I was hoping they all grew out of it............... still trying to stay optimistic...boys are doing well....have a phone consult with Dr. Latimer tomorrow...... Take care all! Kelly
peglem Posted September 17, 2009 Report Posted September 17, 2009 I was felling really good and optimistic today after hearing about yet another case of a child in the NIMH study who grew up and seemilngly out of strep and PANDAS.......heard the same thing from Dr.C (second hand).....even without IVIG or PEX...these kids improved after puberty. Now...this study......bummer.......why are these people still having exacerbations into adulthood? I was hoping they all grew out of it............... still trying to stay optimistic...boys are doing well....have a phone consult with Dr. Latimer tomorrow...... Take care all! Kelly I actually saw this as hopeful. My daughter is nearly 15 and from what I've heard mostly is that older kids don't respond as well to PEX and IVIG. My daughter has had this for a long time- most of which was untreated. I guess its all relative.
EAMom Posted September 17, 2009 Author Report Posted September 17, 2009 It's interesting that all are male.
peglem Posted September 17, 2009 Report Posted September 17, 2009 It's interesting that all are male. Yes, I thought of that. And am I right that all the recovered adults we have heard from are females? Of course that study only included 4 people. Not enough to identify a real pattern, but makes me wonder...
EAMom Posted September 17, 2009 Author Report Posted September 17, 2009 Others have mentioned that things often improve when girls start menstruating. There must be something going on hormonely that affects how girls vs. boys do post-puberty. On the other hand, I have heard (posted here...I forget by who) of a couple of girls (women) that have had exacerbations in young adulthood. So, I think it probably varies with the individual to a certain extent. We can't assume that girls are 100% protected. Gee...wouldn't it be nice if Swedo published a follow-up of her kids? Of course her follow-up would be Pandas patients who had been appropriately treated (abs, pex/abs, ivig/abs) vs. these poor guys who were pumped full of psych. drugs from a very early age, with very little benefit.
colleenrn Posted September 17, 2009 Report Posted September 17, 2009 My daughter is 13 and just had her second period. I don't see any difference yet, but she is on daily Zith. If anything changes in regards to the link to menstruating, I will definitely post. I thought at some point I read that the hormones can initially make things worse. I have not noticed that either, jut the "teenager tude". Colleen
P_Mom Posted September 18, 2009 Report Posted September 18, 2009 Oh, the Saving Sammy kid......he may be an example of a male growing out of it!
EAMom Posted October 8, 2009 Author Report Posted October 8, 2009 Here's one I found interesting. Using PEX in adult cases that had childhood onset: http://www.turkpsikiyatri.com/en/default.a...icle&id=592 I was going to send this to my pediatrician. So much for treating PANDAS like any other case of OCD/tics (like NIMH suggests)....I see psych. meds worked wonders in these guys (I'm being sarcastic).
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