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Should I start Lamictal before IVIG?

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#1 dedee


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Posted 25 May 2011 - 08:58 AM

So we are still waiting on insurance approval for the IVIG. It has been three weeks now. Spoke to the Neurologist and he said they (insurance company) had requested more information last week and he hasn't heard anything since he sent that in. He thinks it is a good sign that they haven't said no, just keep asking for more stuff and bringing in other departments (like pharmacy). Says we will just have to wait them out and jump through all the hoops, although he has labeled it urgent. So we have been considering Lamictal but kept thinking that IVIG was right around the corner. Now who knows when we will get it. Could be next week or next month. My concern is that if we start it and say she gets IVIG next week, if we saw worsening symptoms, how would we know if it was the medication or the results of IVIG. Do you see what I am saying? It could easily muddy the waters. It would be hard to know if she was having a bad reaction to the medication. The doctor said it could take up to two weeks to see results, but could be sooner. We are just going crazy here with all the rages and melt downs. She just gets so frustrated at every little thing. She can't make any sort of decisions, and starts crying when faced with choices. Now this is a child who has been strong willed since birth and up until 7 months ago knew exactly what she wanted and made sure everyone else knew also. This is just NOT my little girl!

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!

#2 MomWithOCDSon


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Posted 25 May 2011 - 09:34 AM

We began a low dose of lamictal for our PANDAS DS14 on April 22nd and saw positive results within about 48 hours; he was definitely calmer, less anxious and even less OCD. We've kept him on a low dose since then, and he continues to improve, almost daily.

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 DS18, Freshman in College

#3 nicklemama


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Posted 25 May 2011 - 01:05 PM

Your DD sounds like my DS before we started lamictal. The raging, meltdowns, indecision (not to mention the ocd's, etc...) were so very hard on our family. We saw a difference in a weeks time, even on a very low dose. However, if I were close to IVIG, I'd try to hang in there. I know how difficult it is to have a raging child and I know its not easy to wait.

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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