Sabril

Clara has been on Sabril for 5 days. We started to increase her dose by 2 mls this past Monday. So she is now on 6 mls. Eventually she will be up to 10mls, as we increase by 2 mls every 3 days. This drug is a complicated mix of measuring and dissolving in warm water. Then we have to slowly squirt it in her mouth, just to make sure she gets all of it. She hates this, as she has an oral thing. 

Spasms have lessened, and really just specific to mornings where she can have 10 or more. They aren't has hard, and through out the day we see maybe a few more that are subtle. This is good news. We hope that as the medicine goes up to full dose of 10mls they will all be gone, but of course there is a possibility they will not. So then we will meet again with Neuro to discuss other options. Maybe combining something else with it. 

She has been very tired, as you can see the photo above. It's 6:00 and I'm waiting for her to get up. Her tone is low as well as her appetite. All things I've heard go away after she adjusts. 

I have of course been worried about her, and so anxious I feel sick. I have been "searching" again on line, Facebook with my infantile spasm support group. Asking for advice, personal info about the experiences. This gives me comfort but also adds to my anxiety. Because for some it works, others it doesn't. Will it for Clara? Lord please let it happen. 

 I pray for a miracle, that this drug works so we move forwar, just a step, spasm free.