God has blessed us by giving us 6+ weeks without a seizure!! The last two seizures in mid-August were so mild we were hardly sure she even had a seizure. And we are almost two months now since her last major seizure on August 1st! God is definitely answering our prayers!
The drugs are really working well. A combination of Depakote and Stiripentol is doing wonders! The Stiripentol is imported from Europe and is not FDA approved. We are STILL working with insurance to try to get it covered. Please pray that they will see the need for this important drug and pay for it for us! We have also been able to wean Luella off of Keppra. We felt this drug wasn't really helping and Luella had some behavioral side effects so we are glad to be done with that as of September 22.
As far as the side effects of the Stiripentol... we are still dealing with Luella's lack of appetite and tiredness. I think the crankiness has improved some (maybe from getting off the Keppra). It's hard to see Luella turn down her favorite food of macaroni and cheese. She won't even eat a cookie! We've read that it can take some time for the side effects to lessen. I hate to give up a drug that works so well at controlling her seizures so we pray these side effects will go away. In the meantime I have some PediSure on hand for those days when she just won't eat.
Luella's iron levels have increased. Her iron levels were lower for awhile and I believe taking the iron supplement has helped. I'm not sure if the low iron caused the night-time jerking and twitching, but we have seen an improvement there as well and she is sleeping better.
We have also been blessed with a couple of volunteers to help watch Luella on the days I go to ECFE with Ryker. We can't possibly thank you ladies enough!! We could still use a "regular" to help on Tuesdays when I have Bible study. What we have been doing is that Jim works from home on those mornings so he is here and available in case Luella would have problems. I think Luella really enjoys her one-on-one play time! Jim hears lots of giggles from Luella on those days. If you are interested in watching Luella, please let me know.
For all of my Coffee Break (Bible study) friends, I want to thank you for all the prayers. I'm finding it really hard to make it through a Bible study without crying these past two weeks. I'm not sure why... I think I just feel all the prayers and love poured out for Luella and our family and I just have a hard time containing my emotions. The first couple weeks after Luella's diagnosis I had a really hard time talking to anyone. I AM doing better despite what you have seen. We have so much to be thankful for.
Luella had her initial evaluation done by the Early Intervention Teacher at the school. Luella scored at or above for her age in every area. She also had a hearing screen done yesterday and passed that as well. We are so thankful for the school's involvement and their willingness to help monitor Luella. We pray that Luella will be spared the regression and developmental delays that so many kids with Dravet experience!
We are so thankful for all of your prayers. We ask for your continued prayers and prayers specifically for insurance coverage and for the Stiripentol side effects to go away. Thank you so much!