Should I start Lamictal before IVIG?
Posted 25 May 2011 - 08:58 AM
I am so torn. We need peace in our home and I want a better life for my daughter. If lamictal will give her a better quality of life, I feel I should start it. However, I don't want it to interfere with her overall recovery. Those who have used Lamictal or had experience with IVIG or both, please give input or opinions. I am so torn.....
Mom to three PANS children: Son 18, Son 15, & Daughter 10. Oldest Son off antibiotics and doing well. Middle Son being treated for Lyme and Myco P with antibiotics and supplements. Daughter being treated for Lyme, Bartonella, & Anaplasma. She has had 2 IVIG's, on antibiotics, supplements and working with methylation and CBT. Starting with my oldest son, we have been fighting this battle for 12 years!
Posted 25 May 2011 - 09:34 AM
That being said, if he were around the corner from IVIG, I would have similar concerns to yours. If you really sense that you're that close, would your doctor think appropriate and prescribe perhaps another anxiety/rage reducing med that would both work quicker and not require the ramp-down for withdrawal of lamictal? Maybe something like Seroquel or risperadol?
Full disclosure: in the last 2 years of PANDAS, we've tried just about everything out there, including the "heavy hammers" like Seroquel, risperadol and zyprexa. I couldn't recommend them on a long-term basis because there's a side-effect profile that worries me, and for our DS, they did nothing at low doses and at higher doses just made him sonambulent and ravenous. That being said, I know they've been life-savers for some on a short-term basis, especially for quelling anxiety and/or rages, so maybe something like that would fit better in this interim before IVIG?
Good luck to you with your approval!
Mom of PANDAS DS17, Senior in High School - Planning for College
Posted 25 May 2011 - 01:05 PM
My DS had IVIG nearly 3wks ago now. If you give the lamictal, you'll not know how either are really working for her.
We are actually planning to wean my DS off lamictal when he's 3 months post IVIG.
DS11, dx 2010 PANDAS, 1.5yrs after first symptoms
IVIG #1- May 2011, IVIG #2- Nov 2012
Ehrlichia, anaplasma dx Mar 2013
Lyme dx 2014, bartonella 2015
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