Lucas’ Health

I originally made this blog to document Lucas and how he affects my life, what we do together, and how he changes as the days go on.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.”
Ignorance.

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.

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About Joseph

18 year old dad raising a special needs 2 year old, while struggling with Dravet Syndrome.
This entry was posted in 2 year old, developmental delay, epilepsy, family, health, hospital, kids, parenting, toddler and tagged , , , . Bookmark the permalink.

7 Responses to Lucas’ Health

  1. Just.A.Mum says:

    Wow. You have a very tough, very long, very emotional road ahead of you. I hope you have some support. You will need it. The tantrums should ease with age. Although I say that, and my son is now 9. He would have terrible tantrums when he was young. Not so much now, but you can see the colossall meltdowns coming a few days before they hit with him. When he finally melts down there is nothing you can do but ride the unpleasant wave. He screams, rants, lashes out, tears up his room. It upsets me so much to see it and I know that for him, he has to behave all day at school (which he finds epically hard) and so, by the time he gets home, he just wants to break free.
    After searching and searching for support for my son and FINALLY getting some, we found out yesterday that his school is closing! So when it closes, he will start somewhere new and the policy is he has to go back on a waiting list.
    You would have to agree, that while the good times are great, man the hard times are sent to test us.
    You are the best chance that Lucas has at an awesome life, no matter what it brings, so never give up the fight. 🙂

    • Joseph says:

      My sister in law is all the support I have, but it’s enough. Lucas is the same way, I can feel them coming a few days before the real meltdowns begin, and then there is no stopping him. I’ve tried locking him in his room while he calms down and have even put him in my room where he has no toys and each time he broke many things and tore apart the duvet’s practically. I can understand behaving through school. I was the same way although I had my days where I couldn’t hold it and ended up getting expelled or suspended. Lucas is the same way. He had a meltdown the first day and had to go to the director’s office to cool off. I never mentioned it in his preschool post since it wasn’t a very shining moment.
      Will your son have to be out of school while waiting? That doesn’t seem right to me.
      And oh lord, I could never bring myself to give up. My parents gave up on me and my siblings and the last thing I want is to be like them. Lucas can always count on me, as I’m sure your son can always count on you.

  2. Just.A.Mum says:

    It’s funny how you get so much advice from people who don’t have a child who has the sorts of problems ours face, who tell you how to parent and really have no idea how to really handle a situation when it comes up! I choose my battles with my son. I let him win some, but there are some things that I will not negotiate on and these can be bad days. I hope one day he appreciates why he can’t win them all!!! In answer to your question, no he won’t have to be out of school while he waits, but our government seems to think it is an awesome idea to close down all the small schools in the city I live in and create fewer schools, that are far larger, to save money. For children like my son, that means he will become a number. A number on a very large waiting list, dealt with by people who don’t know him. I’m gutted. You mentioned about putting Lucas in his or your room when he misbehaves or melts down which is what I used to do with my son too. I think it gives us both time to cool off. Now he goes on a naughty spot for every minute of his age.(when he was little we had to keep putting him back there and we didn’t start the timer until he stayed there – this sometimes took ages!) I explain why he is going there (he always gets a warning first) and then the timer starts. At the end I remind him why I put him there and he has to say sorry and we have a hug and kiss. If he won’t say sorry, he sits down and the timer starts again. This seems to be by far the best method we have found. I know that Lucas is quite young but our son was 2 when we first tried it with him…it might be something worth a try 🙂

    • Joseph says:

      Exactly! My sister in law has an 11 month old and she and my nephew currently live with us while my brother/her fiance is deployed and she was always helping me with Lucas before she moved in on how to handle him, but she never had a first hand account until recently. Lucas usually wins all of our battles but I think I’m just prone to giving in so he doesn’t scream. Not the best on my part but it helps in public. California is like that as well. I’m currently still in high school and I go to one of the largest in the state. There is about 6,000 kids at my school. It’s hard to go from a first name basis with teachers to, as you said, becoming a number or another face in the halls. And yes. Lucas will either get locked in a room if he has a tantrum, or if it is something like pushing his cousin or throwing his dinner he does go to the ‘bullpen’ as we call it for 2 minutes and he has to sit still for the timer to be set. I bought a big child-friendly timer that he can see from the bullpen so when it lands on zero he can call me and talk about what he did wrong. If he insists he did nothing wrong (when i know he did) it starts over. We haven’t reached hugging and apologizing yet since he only knows a few words. He will say “Lulu bad” or “Lulu good” or (when he thinks nothing was done wrong) – “Lulu no”
      Once we get to 3 we will step it up.

  3. Just.A.Mum says:

    I always used to have people judge me for letting my son scream a lot when he was younger too. Ive had people I don’t even know come up and offer a hand to get him in the car, or out of the supermarket! Parenting has reduced me to tears so often, and yet, I wouldn’t change it for the world! You sound like you have some awesome systems in place, and give yourself plenty of credit because Lucas is still only little, and as such has only a ‘little’ understanding of the world around him. He has to cope with a lot more than other toddlers his age!

  4. Just.A.Mum says:

    This is something I read today, which might be of some interest to you 🙂
    http://www.familyandhome.org/difficult_child.html

  5. I can relate to your struggle. Keep it up! You can’t give up the fight it is so worth it! Thanks for sharing your story.

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