I am sorry that it has been so long since I have posted an update. Things got really bad for Lauren again towards the end of October. She had been doing great for about 3 1/2 weeks since we last left the hospital, then she started to have the grandmals again. At first they were only happening at night (6-8 grandmals a night). We tried taking her to our local hospital (Utah valley) to start the emergency plan that we had left the hospital with 4 weeks earlier. The ER doctor had no idea what to do with her, so he sent us home with an IV and home health care which had us giving her IV Valium (which I later found out should not of happened). I was very nervous, IV Valium can suppress breathing, so we had her hooked up to an oxygen monitor and had oxygen on hand. The Valium was not working and she was getting worse and started having grandmals every 2 hours (even through the day). We took her into Primary children's on October 28th after almost a week of trying everything to stop the seizures. I really didn't want to go to the hospital again!

Our choices were very limited on what we could do. The Valium, ativan, klonopin etc are "emergency meds"- her body at this point has built up a tolerance to them and they were doing nothing to stop the seizures, just making her very drunk. Because of the risks of aspirating during a seizure we could only give IV meds to her. The only anti-seizure meds that are in IV form are Depakote, Keppra, Phenobarbital, and dylantin. She is allergic to phenobarbital, dylantin is known to aggravate myoclonic and drop seizures, and she had already failed using depakote and Keppra before the diet. The Neurologist at Primary Children's thought loading (high doses) her with IV depakote was our best option because that drug did work for a short time back in January. So they gave her a loading dose and she got worse and pretty much was having periods were she was having grandmals every 20 minutes. At that point they put a feeding tube in her and she continued to get worse. We stopped the depakote and tried the Valium again at a higher dose and every 6 hours. That did not help, and at this point had gone about4 days with being totally unresponsive (not waking up in between seizures). There next step was going to try loading her with Keppra. I started feeling pretty hopeless at this point, when her seizures first started Keppra was the first drug she tried and it did nothing but make her seizures worse.
Her doctors at Johns Hopkins had stepped back not being able to help from such a far distance, but through many emails begged for their input. He suggested trying the Dylantin instead to stop the grandmals. So they loaded her with the dylantin and the grandmals finally stopped. But within 1 day her myoclonic seizures (small jerks) started and increased until she was having jerks constantly. She was at least conscience and somewhat awake though. We spent the next 3 or so day getting they myoclonics under control through the diet (the diet is very effective against that seizure type-where most meds are not). So after another 11 day hospital stay we finally got her seizures under control!

Our new plan from Johns Hopkins is to fast her every 5th day. This is something they have never done before, but like I have mentioned before, her body seems to "forget" how to go to her own fat unless it is "shocked" into it. We also started a small dose of Zonegren (anti-seizure med) to try to help with the grandmals. We have been home for about 10 days. It took her about 5 days to be able to walk again, she got pretty good at "crawling" around. But slowly things are starting to come back. All the drugs and seizures took a big toll on her little body.

We have fasted her 2 times and I have to admit it really is a nice break for me to not have to worry about feeding her-almost a day off. She seems to handle it better and better. I can hardly fast for 24 hours, but when we fasted her this last time she was playing all day and didn't even ask to eat!

So far she has not had another seizure since we started this BUT we know all to well this can change at any moment. I hate posting that she is doing well because I feel as soon as I do it all changes. So I will just say that she has had a good day, and we continue to take it day by day.

We are so grateful for all your prayers and continued support!