Not So Wordless Wednesday

Yes, we have been MIA again, and for too long.

We have had a very bad time with Ciara, but some changes have been made.  It is way past due for us to get her out of her monster prison.

Over the past two weeks, poor Ciara has been through multiple full blown seizures and several petit mal ones in addition to exhibiting every conceivable common and very rare side effect from her meds.  It has been pure hell for her and for the family.  Her neurologist has decided that she cannot tolerate phenobarbital, and it isn't helping control the seizures anyway. So over the next couple of weeks, she is being weaned off the phenobarbital and the gabapentin, while at the same time beginning a new regimen of zonisamide.  She was on zonisamide (as an adjunct to her Keppra) for a few months earlier this year, and her doctors seem to think it may help her.  Mom is not of the same opinion as she did not see any benefit from it,  but we have no other good options at this time.  It seems we may be at the end of the line for anti-seizure meds.  They were going to try her with potassium bromide, but given her reaction to phenobarbital, the neurologist says potassium bromide will cause the same problems.  She also cannot have the valium she was getting after a seizure to calm her system down because she shows a "paradoxical" reaction to it.  Instead of calming her, it just gets her super hyped up.  For some reason, Ciara gets all the BAD reactions to medication and none of the benefits.

Mom says today she is starting to see some inklings of a little improvement in some of the odd behaviors and hopes for things to get better.  We hope you can understand our absence.

Woos - Ciara and Lightning