Meds: Lyrica and Namenda

[rjayne]

My 9 year old daughter suffers from opsoclonus myoclonus syndrome which in many, many ways is very similar to PANDAS. I believe the root cause, inflammation and bbb permeability to be the same for both.

The most severe symptoms of her disease are cognitive/memory issues and crazy, violent, explosive rage attacks which she does not remember. These symptoms wax and wane depending on immune activity. We have tried so many psych meds with very little success. Most meds have made her rage/situational OCD so much worse and she has been hospitalized on several occasions. We have tried: Prozac,lexapro, bus par, trileptal, topamax, depakote, clonidine, proplanolol, Ativan, trazodone, gabapentin, and Klonipin. She is currently on a tiny bit (1mg) of abilify and seroquel, she's better, but I fear for what will happen when she gets the next cold/infection.

I spoke with our neurologist today, and he recommended Lyrica and Namenda. He said he had a few kids with neurodegenerative disease and brain injury whose terrible rage greatly improved with Lyrica. He also agreed to try the namenda for her cognitive and memory issues.

My questions for you guys: have any of you tried Lyrica with your children for rage/anxiety? Was it helpful? And of those of you who have used Namenda, did you find it affected behavior in any way, positive or negative?

Oh, and these meds are being given in addition to ivig, and immune suppressing chemotherapy ( which will be ending soon after 7 years).

Thanks!

[PowPow]

lyrica was very helpful for my daughter at one time. in your situation , i say try both! no namenda here but she is on rilutek. i think they are similar.

[LaurenK]

How does riluzole work for your daughter?? Are PANDAS symptoms eased? We use low dose namenda with success for tics, but high dose aggravates.

[LaurenK]

How does riluzole work for your daughter?? Are PANDAS symptoms eased? We use low dose namenda with success for tics, but high dose aggravates.

[nicklemama]

I know you are asking about Lyrica and Namenda. Let me throw something else out there for you. If those don't work, have you tried Lamictal? It worked for my son. It didn't totally erase the anger but it put a damper on the all out rage attacks, from several a week to a few a month to none. I see you've tried trileptal and I think it might be similar but if all else fails, its worth a try. It does take a while to ramp up the dose to prevent an allergic reaction.

[Iowadawn]

We have used Namenda at 10mg bid for some time. Side effect profile is good as meds go. Helps with focus, flexibility, cognitive stuff. But, I tell you, our list of med failures is as long as yours. It has been very hard (our psych said our son has been one of his top three in difficulty)to find something that works, or works for very long if he just isn't operating on all cylinders--like now--only IVIG seems to help the most. He said psychiatric problems with infectious etiologies are very difficult to get good med results. Dawn

 

I had to look up Lyrica. We were on gabapentin (Neurotin), which appears to be similar to Lyrica. Actually pretty pleased with results. Lower on the sise effect profile for us, too. But, ended up changing things up after a while.

 

Both could be worth a shot. I was more comfortable with these two drugs vs. some of the other ones we tried.

Edited January 19, 2012 by Iowadawn

[rjayne]

Thank you all for your input. We're considering lamictal as well because I've read many of you have had success with it. I think we are going to give the Lyrica a shot and later add namenda for the cognitive and memory issues. If the Lyrica is a flop, we'll try the lamictal. Both in very small amounts.

This forum has been so helpful in terms of behaviors, meds, and treatment.

Thank you all again!

[Fixit]

How does riluzole work for your daughter?? Are PANDAS symptoms eased? We use low dose namenda with success for tics, but high dose aggravates.

 

LaurenK, do you still feel the same about namenda today?

if so what dose? is it based on weight?

 

 

i don't know the dose in this survey

http://www.ehealthme.com/ds/namenda/tic

Edited September 17, 2012 by Fixit

[twoplusone]

Namenda increases cognition, memory and induces a better mood in my son. Decreases OCD a bit. It is a med that needs to be ramped up slowly to find the right dosing schedule and amount. We found out my son will not sleep if he gets his second dose after 12:30 PM. I am finding that the more IVIGs that he gets, the less Namenda he needs. Currently tweaking that dose and he may only need it once a day vs. twice, whereas when he first started it you knew when the first dose was wearing off as he would start to get mean again.

[Fixit]

interesting, i'm glad things are looking up

Edited September 17, 2012 by Fixit