Saturday, September 6, 2008

Since we fasted her last Saturday and increased her calories by 200 Lauren has completely turned around. It took a couple of days for her abilities to come back (walking, talking, etc.) but they slowly did. Her doctor described her as being "encephalopathic" or in a brain fog for this past week. For a couple of days after her coming out of it she was having hallucinations of some sort and was going "crazy" for periods of time. Just like a switch she would start screaming and her eyes and head were darting back and forth like she was seeing things. She would wonder around calling for mama and I was right next to her. If I picked her up she would get worse, like she did not know me. She was acting like she was being killed. They would last for 1 hour or so and then like a switch again she would stop and was totally fine. They were happening 2-3 times a day at first and now they have slowed and hopefully have stopped. These were really scary to watch, I felt like she was going crazy-literally.

Well for this past week she has been totally seizure free during the day. She is still having her 6am in t/c on some mornings. But overall she has been so good. The roller coaster of emotions are so big. A little over a week ago I really thought we had "lost" Lauren to the seizures and tonight we just gone done playing soccer with her. I think I am the one who is going to go crazy!

We are really feeling there is something wrong with her metabolism that is causing such big swings. Our theory is that she can't switch over to her own body fat when the fat we feed her is gone? But if we feed her too much fat she gains weight which is then harder to maintain ketosis. We know the diet works it is just keeping her in the right balance with her body. I think if we can just figure out some of this we can get the seizures under control.

We are so grateful for all the continued prayers for Lauren and our family. Thank you!

4 comments:

Kim said...

I'm sorry for the roller coaster but I'm happy you have her back! I put her name, and YOURS, in the LA temple tonight. Hope that helps! kim

Leo'sMommy said...

I am so relieved to hear that your little angel is back! I know it doesn't make the road ahead any more certain but at least you have a break from "the beast" that is Epilepsy.
We can't wait to see you!
Love,
Christina, George & Leo

Fawn said...

Hi there - I just found your blog today and wanted to let you know that I'm wishing you all the best.

My daughter's epilepsy started suddenly in late May and for the last few days I've been researching blogs of families who are using the keto diet to help control seizures. We haven't decided to go for it yet, but I'm trying to learn as much as I can. I've added a link to your blog from mine for others who might be looking to connect, too.

I've found that there's a great online community at Yahoo Groups (search for the big group called "ketogenic", if you're looking for other families to support you.

Blessings!

Fawn @ http://fawnahareo.com

Stacy said...

I am so glad to hear you have Lauren back. Sorry for crazy weeks that you had to dealt with. We continue to pray for you all. Good luck at John Hopkins in a couple of days...I hope something will help while you are there.
Love and hug-Stacy