Wednesday, September 17, 2008


All has calmed down since taking Mira off of the Depakote. She really turned around after only a few days of being Depakote-free, despite feeling under the weather. Mira immediately started eating better too once she was off it - we have been getting her back on the morning oatmeal train again.

We are still seeing quite a few head drops from her everyday, which has been going on for months now. No better, no worse - they just happen. Now that she has been sitting up (and staying up for 20-30 seconds stretches) I am always nervous about her having a seizure while sitting up an falling flat on her face. The few times I have seen it, she just sort of bends forward, but still stays up. They don't appear to be strong enough to topple her over.

Mira's neuro recommended starting her on a low dose of Keppra to help with the head drops, but we are holding off until she gets over the congestion she has been battling over the past few days. After her latest bout with Depakote, we aren't too anxious to spin the medication wheel again, but will try if we think it will help.

On Friday, Mira is going to get fitted for some orthotics, also referred to as AFO's - Ankle and Foot Orthotics. Basically what AFOs are leg braces that will help Mira to maintain alignment of the bones in her feet and ankles. As she becomes more mobile, the AFOs will also help keep her from rolling her ankles and provide needed stability, should she try to stand. She won't be wearing them all the time, but will easing into them gradually for a few hours a day. We should learn more on Friday on the AFOs.


Reagan Leigh said...

Have you thought about clobazam? It is the study med Lily was put on and it stopped her head drops completely. It's similar to vigabatrin (not approved in the US), but it's also just as easy to get. You may want to ask your doctor about it. I know you want Mira seizure free again...maybe this would help? Take care,

Tara - Aidan's Mom said...

Aidan is on 500mg of Keppra a day along with his 100mg of Lyrica and it's always helped with his head drops. We've been going through a couple week stretch of Aidan having 5-8 head drops a day, but the funny thing is they only occur when he's at school or in therapy. Their thinking that his body is being "stressed" causing the seizures to appear. We tried clobazam also and it worked well, the only problem was it caused Aidan to drool non-stop, which in turns caused him not want to eat.
Good Luck :-)

Carolina—Ansel's mama said...

Keppra has been a good one for Ansel too , reducing, but not eliminating the spasm clusters. It's been great also because we really can't say he's had any side effects.

Sophie's Story by Elaine said...

We tried Clobazam. Actually, Sophie is still on it. It worked for awhile...meaning it slowed down her seizures but didn't stop them completely. But that is huge considering most AEDs don't even make a difference. We didn't have any problems with drooling.