I originally made this blog to document Lucas and how he affects my life, what we do together, and how he changes as the days go on. As I continue blogging, I’ve noticed that it has become much more than that. It has become a place for me to go when I have free time, or a hard day with Lucas. It has become a virtual scrapbook for all things Lucas, and I have a few personal posts on here as well. It has become part of my life on a more personal basis. Some days I may not post about Lucas. Some days I will blog about my brother who is currently in a hospital in Afghanistan. Some days I will blog about what is going through my mind at that moment.
Anyways, I’m getting a bit sidetracked. This post actually has to do with Lucas’ Health. (as the title suggests)
Since Lucas was 4 months old, he has had seizures. He has never been diagnosed with anything, his doctors have identified what seizures he has, and that is his ‘diagnosis’. He has had myoclonic seizures which looks like a jerk of a body part or face, Absence seizures where he stares into space, Tonic-Clonic seizures every now and then where he is violently shaking, and Atonic seizures where he drops to the floor. Many times he will go into status epilepticus where the seizures continue on for longer than 3-5 minutes. Many times, (maybe 4-6 times a month) I will have to give him a rescue medication, which in his case, is nasal Versed. I’ve really never talked about Lucas’ health in such great depth as I will be doing now. I feel like it is something that I should do so that after we start the new changes that we will do, I can look back and say, “Wow, he doesn’t do that anymore.” or “I can’t believe how different he is now.”
Since Lucas has lived with me, I have only seen him have Myoclonic (most often), Atonic (2nd most), and an occasional T-C during the night where his bed monitor goes off and I have to secure him on the floor. This will happen around 2-3 in the morning. The last time he had one of these was 1-2 months ago.
Thankfully, I know a lot about epilepsy and the challenges that come with it. When I was born I had my first seizure at almost a month old. I was diagnosed with Infantile Spasms and as I got older it progressed into seizures 150-200 times a day with around 100-120 of them being T-C. I spent weeks in hospitals, I qualified for many special programs such as a medical assistance dog, the special child programs at school, all sorts of diets. I went through tons of medications and maxed out on many and nothing worked. When I was 4 I was diagnosed with Dravet Syndrome, a rare form of Epilepsy. It is not curable, it does not respond to medication, mine did not respond to the Keto diet, the MA Diet, or the LCHF diet. We tried everything to no avail. Currently I have about 100 seizures a day. I am on a vegan diet which I went on for my own reasons- not my epilepsy. I have to live my life being careful, and taking 3 different anticonvulsants a day to minimize the severity of each seizure.
When Lucas was in the hospital after a bad seizure, I had previously learned that Dravet Syndrome can be passed down to a child. Dravet Syndrome can also be caused by a SCN1A gene mutation. A gene mutation that I have.
Lucas has been tested to see if he has any mutations or anything wrong with chromosomes, etc. He doesn’t appear to have a mutation on the same gene as I, but certain parts can be affected that the technology can not yet test for, so really.. who knows for sure?
Lucas has been diagnosed with all sorts of things because of his development. He has some extreme developmental delays but he may seem like the average 2 and half year old. It’s not the case. I hate how people look at Lucas and see that he looks completely normal. He has beautiful blue eyes, gorgeous blond hair, tall and thin and outgoing and energetic. Thats what people see in him. Thats what people see when they LOOK AT him. Want to know what I see? I see a little boy who may never own up to his full potential. I see a little boy who learns something then completely forgets it. Who doesn’t understand when I ask him to pick out a shirt to wear today or to carry his plate to me. I see a little boy who has to wear a helmet sometimes because he may fall down any second and lose consciousness. I see a little boy who gets strange looks when he starts seizing in public and a little boy who wonders every damn day whether he will get made fun of by adults because he started having a seizure. I see a little boy who has the speaking abilities of a 1 year old and a little boy who was abandoned by his mother. Maybe I am a horrible person for only seeing the negative. Do I see a beautiful little boy who I love to the world’s end and have the utmost concern for? No doubt. But others see his appearance before they see him. I hate that.
Then there are the ridiculously dumb people who don’t know what Epilepsy is. I would understand if I said “I have Dravet Syndrome” — “What’s that?”
But people who don’t know what epilepsy is? It is almost as common as cancer is nowadays. I was filling out preschool forms a while back and under the medical emergency card they didn’t even have a box to check if your child had a seizure disorder. Thats being careful. Not.
Let’s just say we immediately said goodbye to that preschool. I can’t even tell you all how many times I have told people that he has epilepsy, and they said, “Oh some antibiotics will work great.”
So as of now, Lucas is in the hospital. He just finished a 24 hour EEG this morning. It was a long day. He got there at 9am and I carried him to his room where they hooked him up and got settled and then came back later to place the electrodes on his head. Lucas usually does fine with it. He has been extremely moody since he has been weaned off of Lorazepam, so he was not liking the idea of having something sticky stuck on his head. He had to be held down by myself and one of his favorite nurses since she is the only one ‘allowed’ to touch him according to Lucas. While she held down his upper extremities, I was on the lower end taking kicks to my ribs and nether regions. He tried to bite his nurse and we had to get a second nurse to hold his arms which he detested while the other held his mouth shut. It looked like we were torturing him and his screams through clenched teeth sure helped sell it. When he was finally done he immediately went for the electrodes and tried to pull them off. He then got rewarded with a sort of splint to keep his arms straight so he can’t reach his head. While on the EEG it was important to keep his normal eating routine and his low dose of Lorazepam. For lunch he had macaroni. After the first few bites he flung his macaroni at the foot of the bed, spilling it everywhere. He gained some new sheets. So that was a long and bitter night of screams. He also doesn’t do anything while in the hospital. He won’t pay any attention to Tickle Me Elmo, or his iPad or his coloring books. He refuses, and will throw.
Also, after we finished the EEG, he was officially taken off Lorazepam. Yay! He was given a quick meal, and then was started on the ketogenic diet, or, the keto diet. The keto diet has shown great success in stopping, controlling, or minimizing seizures in kids. He is currently almost 6 hours into it (as of 2:50pm) He isn’t taking well to it. It starts with a fast, to have the body burn the stored glucose, and then start burning fat. The diet itself is extremely strict. I have to give him only a certain type of foods and all food must be weighed. It goes much more in depth, but that is the gist of it. It is now 3:05pm and Lucas is starving. He is screaming for food, he looks so pathetic squirming around in his bed. He keeps saying his diaper is wet so that he can entertain himself by making me check. He refuses to be held – I’m sure he despises me right now. Nobody can touch him or else the glass might break from his high pitched screams and we have gotten far more noise complaints than an alcoholic sorority on a Friday night.
I truly hopes he takes well to the diet. I know he is a picky eater but this diet might change everything for him. I may sound bad for saying this, but I want my boy back. I want the happy guy who would snuggle and be so much fun. All Lucas does now is throw tantrums over the smallest things and tear apart the house.
Lucas’ health may never be great. He may never be the same after we start this diet, or have the capacity to learn or talk well. He may never reach milestones like identifying his parents or recognizing his own name. He may always be behind. Lucas is in Early Intervention already and it has done wonders. You would be amazed at the difference and how far he has come. He is in physical therapy on the side, along with extra speech therapy classes. We may be getting him a medical dog to see if that helps although he would prefer a medical cow.
Along with Lucas’ epilepsy and delays, Lucas has been diagnosed with dyspraxia. And then undiagnosed. Nobody knows what is wrong with him. It’s not made up, I know there is something wrong. I have no idea if his mom drank while pregnant, I know nothing of his first 2 years except for a few things here and there. I’m at a loss and I will never stop poking and prodding him until I find out what. If I give up now and later learn that he had been sick and it could have been treated I will never forgive myself.
Lucas’ health is not good. He looks good. But thats it. He has the appearance of a healthy child, but he isn’t.