I really feel that I need to post an update about Lauren. Things have been really bad for Lauren these past months. I stopped updating her blog because I just have no idea what has been going on with her. I will try to give a quick update of the past few months.

Lauren's grandmal seizures have continued to build and cause her to go into these non-stop cycles of grandmal seizures. We increased the last anticonvulsant (zonegran) a month ago to try to help but that increase put her into non-convulsive status. That is when she is not outwardly having seizures but having nonstop seizure that can only be seen on an EEG. The best way to describe her would be a "zombie". She could not walk, talk, or eat. She just sat and drooled and we felt like we were looking at a blank child-she was just not there! The seizures are just so frequent it interferes with all her abilities. So we spent some time in January at Primary Children's trying to get her out of that state. It is really hard to comprehend that medicine can make her worse when they are suppose to help seizures.

So, at the end of January we started taking her off this medication (the Zonegran). This makes the 7 th medication that she has failed (not worked or made things worse). Lauren is still on the ketogenic diet which has been a miracle for the first 6 months but now something seems to have happened. We will continue with diet but we're left with 2 options of medication left to try. One was just approved by the FDA in November and just available a couple of weeks ago (Rufinamide), the other one has known side effects that are not very good and is left as a last resort med (Felbatol).

We had no idea what to do, the new medication-Rufinamide- is just so unknown and none of her neurologist have used it before. As we were trying to decide what drug to use in the middle of February Lauren started again to go into a bad grandmal cycle (having grandmal seizures every couple of hours without waking up between them). All of her emergency meds (Valium, etc) were not working so we decided to get her loaded in the ER with dylantin. That is the drug that we have used a couple of times before to stop the grandmal cycle but this drug aggravates her myoclonic and drop seizures so it is only used in emergencies. When Lauren was given this drug the grandmals stopped but she instantly went back into the non convulsive status again with lots of little seizures. This time around none of the emergency drugs were able to get her out of this really bad state. We used so much of the benzo's (valium and ativan) and they would only help for a couple of hours. She had been in this non-convusive state for over a week and we were getting really scared. Because of her current condition I had filled a prescription of the new drug rufinamide ,but was very nervous to start it.

We were trying to get Lauren to a much anticipated trip to Johns Hopkins scheduled for February 24. When I emailed an update to her doctors at Hopkins a day before we were suppose to fly out they emailed me back and told me not to come, that a plane trip wouldn't be advisable in her condition, but to start the new drug.

Even though I knew she was not in a state to travel I was totally devastated and kind of fell apart at this point. I really wanted to talk to her doctors at Hopkins and have a face to face conversation. Marc and I had no idea what to do and felt very lost and alone in this journey with Lauren. We had put so much into doing what was best for Lauren, we felt like the diet was the right thing, but at this time we felt like we were not getting any direction or answers.

It was Sunday night and our plane left early the next morning. Lauren was having non-stop seizures-big and small- and had hardly talked or walked in over a week. At this point we knew we needed strength that was beyond us, strength that only our Father in Heaven can offer. Later that evening our Bishop from our church came over to our house and gave Lauren a Priesthood blessing. He also gave Marc and I a blessing. Words can not express the feelings and power that were felt as he spoke. It is one of the most amazing experiences of my life. We felt strength and hope again and knew that through the help of our Heavenly Father and the many prayers that have and are still being offered that things were going to be okay.

We were still undecided about what we were going to do the next day so we packed our bags and knew in the morning we would either go to Primary Children's Hospital and have her admitted or get on a plane. Lauren was really in no condition to fly on a plane but Marc and I both felt it was the right thing to do. So, as we headed to Salt Lake City we decided to go to the airport and we got on the plane. This was one of the greatest tests of my faith. She had improved a little but was still having little seizures constantly. We got many looks on the plane as we had this little girl that obviously something was wrong, she had a big black eye from a drop seizure earlier in the week, and could not do anything. I just kept praying that we were making the right decision. In making the trip I was so worried that her doctor would be upset at us for coming.

We went to bed at the hotel that night in preparation of her early morning EEG testing. When we woke up Tuesday morning Lauren sat up in her bed and started talking. It had been over a week with hardly hearing her voice, that morning it was music to our ears, a true miracle! Lauren improved as the day went on, and by the time her afternoon appointment with her doctors she was a new child. Her doctor was a little concerned that we had come but said that she was not as bad as I had described-How do you tell your doctor about a Priesthood blessing? We had a wonderful appointment with the whole team of doctors and dietitians. No changes were made because we had just added the new drug (Rufinamide) and they never make two changes at one time. We went over my theory that last September when things all started to go down hill was the same time we added MCT oil to her diet to help boost her ketones, and the possibility of having too high of ketones may have not been good for her.

Our next step after a few weeks of trying Rufinamide is to reduce her ratio on the diet which would lower her ketones and see if that helps. We don't know what to expect next. Right now Lauren is doing very well- talking, playing, walking, so happy. We are presuming that this is what they call the " honeymoon period" of anti-seizure drugs. With intractable seizures it seems that medicine works really good for awhile then stops working. Rufinamide is a new drug just approved so maybe there is some hope that it may do some good long term or that some new diet changes may help. It is all so unknown?! We just want to thank everyone for all the help, love, prayers, and support we have felt. We also are so thankful for all those who will be fasting this Sunday for Lauren and her doctors. We know that through the power of prayer and fasting as a family, ward, and friends that Lauren will be blessed with what she needs at this time.