The 411

We just wanted to give everyone a little (okay, not so little) update on Cole. People have been asking and are shocked to hear how much worse Cole has gotten in the last few months. We won’t lie, things have been hard lately. Although we are pleased that his speech has really been improving with his speech therapist coming once a week.

He now has 5 different kinds of seizures that we are aware of. He still has "drop" seizures where he goes unconscious momentarily and "drops" to the ground. His brain stops telling his body "stand up, stand up" as it is too busy seizing. He has to wear his helmet for these and it has been helping him to not get so many bumps and bruises. He will fall with dead weight and not brace for impact, as he is unconscious. That equals a lot of battle wounds if he is near anything hard or sharp. He used to have around 30 of these seizures a day, but since starting the test diet, it has been reduced. He also continues to have "absence" seizures, where he is "absent" for a moment. According to his last EEG (brain wave test) he has well over 100 of these a day. This test has shown a definite increase since the one we did in September. He also has these seizures in his sleep. Sometimes these can come in clusters and lead to a more severe seizure. Cole also continues to have grand-mal seizures, like mine, but his seem to be very long and he does not respond quickly to medications. His last grand mal was 45 minutes long.A new kind of seizure is something they are calling "partial-complex". It usually only affects one side of his body; with minimal jerking. Sometimes he is coherent, sometimes he is not. These seem to be brought on by different things each time, and they affect different parts of his body. Usually he is paralyzed on one side for at least an hour after one of these seizures. He is having these on average once a week. He has been having these after church or anytime there is a lot of people around. SO-right now, he can't go to church anymore. Even if we only take him to sacrament meeting, he is still over-stimulated. If you want to know more about our beliefs or just want to understand all of these unfamiliar words I am using :), you can go here. Cole can't go to family parties without risk, or even to a restaurant. We can not take him in to big stores for very long, because there are too many people and things to look at, so he gets over-stimulated.

Something else that is new is called "photo sensitive". Cole can no longer go outside. The change in light has been causing seizures. He seems to have an adverse reaction to natural sunlight and temperature changes. Things in our house are very controlled, with the blinds shut and curtains drawn and the right temp. This has been hard on him as the season has finally changed and the sun has finally decided to come out. We have ordered some new special sunglasses with FL41 lenses and hope that they will help.

Basically, Cole has become a prisoner in our own house. He can't go out, or be in groups. He can't go to the park, or even his favorite activity-swimming. He can not watch a lot of television, as that seems to trigger clusters too. He gets very frustrated (as most 2 year-olds would) with just Mom every day all day. Having another child around is like Christmas for Cole. He gets so excited and has light in his eyes. We really hope that he can start to socialize again soon. When family members stopped by the other day with another “little person”, you would have thought Cole won the lottery. Yet, he had multiple falls because he was so excited.

We have some great neighbors and friends. Our ward is even trying to organize a private nursery for Cole, so that Brian and I can go to all three meetings. At this time, we take turns going to our first meeting and we come home and switch so we can teach our lessons. Yet, we can not leave him with anyone because his seizures have been so unpredictable. We have a couple of friends that are nurses, but they work graveyard shifts and are either sleeping or working when it seems that we need a baby-sitter.

At this time, we have a plan to go to Johns Hopkins Medical Center in July. They are the leading hospital for the ketogenic diet and actually, literally, wrote the book on it. Dr Kossoff, who is the head of the team, has been really responsive and has been willing to take on Cole's case, with certain conditions. Our insurance is saying at this time that they are not willing to pay for the diet there, but we are hoping that our neurologist can help to convince them. We have contacted Johns Hopkins and know that it is going to take around $14,000 for the initial week. We then have to follow up every three months. If we do end up moving to Washington D.C., we will be within driving distance of this hospital. But, that won't be until Brian can secure a job and most likely won't be until the end of the year. We have to finish school first :) Thank goodness, Brian is done in June! We feel that Cole might be the reason that we are being prompted to make this move. We have seen results and decreases in certain seizure types with the test diet. Just taking Cole off of sugar and limiting carbs has helped his drop seizures. Other types remain the same. We are glad, because he has been injuring himself so much.The ketogenic diet is a very strict one. No sugar, little carbs, adequate protein. It works on the principle that if the body does not have glucose to burn for energy, it turns to ketones, shocking the body into a state of fasting and somehow telling the brain to stop having seizures. Everything has to be weighed out to the gram. There is a very small amount of food, and the majority of it is high fat. Cole’s main sources of food will be oil, butter, heavy cream and mayonnaise. He has to eat everything in a 20 minute period or it will not work. Even if he happens to eat crumbs off of the floor, or one small piece of sugar-he can have a seizure. It is a dramatic lifestyle change. If you want to learn more about the diet, we suggest going on-line to the links found on the sidebar of our Epilepsy Warriors blog, or watching the movie, First Do No Harm, with Meryl Streep.

We are also going to try and do a genetic test for something called, Dravet Syndrome, which Cole is a candidate for. It is basically the worst kind of epilepsy there is and he will actually get worse as he gets older. He may lose his abilities to walk and talk even. We are hoping that this is not the case. With as many types of seizures that Cole has, being so young, this is a possibility, but we will not know for sure until we do the test.

We have exhausted all of our personal resources and if Johns Hopkins is his best shot, we are going to take it; or we will forever be asking ourselves, "what if"... The fundraiser at this time is kind of up in the air until we get new information on when we can actually be accepted as patients at Hopkins. The lead Dr. there is telling us that he will not accept us until our insurance will pay part. We might have to move before that happens. We just know that we want to do it right the first time. Prayers are always accepted and we know that we have a lot of people who love us and think about us often.Thanks to everyone that has called and offered help. We are so grateful to know that we have an army behind us. The diet may not work, but we are willing to change everything to give Cole that chance.