We are still trying to figure out what the next step will be for Lauren. Dr. Tuxhorn finally called last Friday and told me that she has missed placed the formulation that she has been working on for the bromides. So we are going to work on getting the drug from Germany (because they are not FDA approved for use on humans in the US). Right now we already get another drug from Europe (Clobazam) and are some what familiar with how things work ( I call it my "drug dealing"). Unfortunately when you get drugs that are not FDA approved insurance doesn't pay for them. The felbatol med she is also on is rarely used and is pretty pricey even with insurance and the other drug Zarontin we are using the brand name which costs a lot more then the generic. Are monthly drug bill for Lauren is getting pretty high. The cost of using butter and cream as her "medicine"was pretty cheap and had way less side-effects! I really hoping to wean some of the medication, but I am also scared to mess with anything right now. I hate this!

Next month we are going to meet with our new Local Neurologist because are current one is retiring. I am working on putting together some videos of Lauren's different types of seizures. It is very helpful for the doctors to see the seizures because they seem to never happen when they are in front of them or hooked up to an EEG. And different seizures can mean different things. SO below I am posting some of Lauren's seizures. I know that there are some that read this blog that have children with seizure disorders and for me it has been very helpful when I can see what others look like, to know what an atonic drop seizure looks like for example.
I also want to have these videos through the internet if I need to show a doctor at some time. Which would of been nice to have when we were at the Cleveland Clinic. The doctor had asked to see videos of her seizures and we didn't have them with us. I am putting them on here to have a record of them if needed.
So I just want to give a warning that these are not fun or enjoyable videos to watch!!!! Some may not like to watch-including my husband. When I showed him he stopped and said he sees enough of it in real time.


This is the first seizure type that Lauren had on December 26, 2007. Right now this is the main seizure type that she is having. They are usually in her sleep between 5-8am and during her nap. She is having between 1-8 a day but always when she is asleep. Before we started the diet she would have them only when she was awake and they would come every 3-4 days and they were much longer then what she is having now.

Grand-mal or Tonic-Clonic Seizure




Shortly after her first grand-mal the "drop" seizures, myoclonic seizures and absence seizures started. In this video she has all three of these seizure types. I posted this video in the beginning of this nightmare but wanted to post it with the rest. Drop seizures are pretty hard to video tape, they happen so fast and are over just as fast, and I was usually wiping up blood or comforting her because she would usually hurt herself after a drop seizure. This is why she had to wear her helmet. I really hate these seizures, whenever I hear a load thud my heart drops. These became the main seizure type Lauren was having before we started the Ketogenic Diet, anywhere between 20-100, depending on the day. The syndrome she has is call
Myoclonic-Astatic Epilepsy (Doose Syndrome), this is a myoclonic-astatic seizure-hence the name. Right now we see these only when she is in a very bad period
(like she had this past Dec -09).

Drop Seizure


Lauren has has many periods were she starts having constant myoclonic seizures. There was a period where she was going into this state a lot. This is usually when we have had to use diastat-her emergency rescue medication. It is very hard to watch her in this state because of the constant "interruptions" she is having. A lot of people of asked what I mean when I say she is having "constant seizures". This is what it looks like sometimes a lot worse-sometimes not as bad.

Constant Myoclonic Seizures




We usually always have to use Diastat, which is rectal Valium to stop her seizing in this state. We have has to use diastat more times then I can count. I was so afraid the first time I had to use it, the EMT (ambulance man) made me do it -instead of him-so I could learn. Now I could do it in my sleep and it has saved us from many 911 calls and hospital trips.
Below you can see the seizures stop shortly after we administer the valium, but you can she is completely "drunk". As funny as it sometimes watching her in this "high" state it is also so depressing seeing your young child so drugged. The periods we end up in the hospital is when the diastat stops working (her body builds a tolerance after it is used too much). So we usually know to go to Primary Children's is after we have used diastat 3-4 times in a couple of days and the constant seizing continues despite the medication.

After Using Diastat to stop Myoclonic episode



Other times we end up in the hospital is when she goes into Non-Convulsive Status (NCS). That is when she not having clinical seizures that you can see but her brain is constantly seizing. As you can see she can't move well, her speech is slurred, her eyes are slightly twitching if you look close, she is drooling, she can't eat or even sleep when she is in this state. I have tried to put her to bed hoping sleep would help and hours latter I check on her and she is still staring off drooling. If you hooked her up to an EEG you would see constant seizures going on. Usually mixed into this she would start having drops and grandmal seizures. These have been very scary times for us in the hospital when we can't get her out of this state, it has gone on for days with no medications working. And honestly these have been the times I wonder if she will ever come out of it or will this be the time that she is "gone". These episodes have taken a toll on her. After we finally get the seizures to stop it takes days for her to be able to walk and function again. Luckily is has been since this past December since she has been in this state.

Non-convulsive Status