"The difference between life and death...

We had a great visit with Dr. Morales this week. Neely’s continues to do well and is tolerating her meds as well as we could expect. Keppra (anti-seizure) can cause irritability and insomnia – so we are always battling bedtime and tantrums. As she grows, it becomes necessary to increase her dosage accordingly, and this week we increased her dose by .5ml per day. (She takes a total of 6ml each day) It doesn’t sound like much, but can make a big difference in behavior.

As the new dose builds in her system, we just have to watch her really closely to make sure she is still tolerating it well and that her quality of life is not diminished as a result of the side effects. Dr. Morales is planning to repeat Neely’s EEG in September when we celebrate being seizure-free for 1 year. May 15th was the one year anniversary of Neely’s Acute Disseminating Encephalomylitis (ADEM).