Carter had a good weekend, but had another seizure at the end of his school day yesterday and another later in the evening. I gave him the lorezapam ,as his Dr and I discussed last week. Hasn't had another seizure but his arm is doing the shaking thing it randomly has been doing lately, which makes me nervous because he usually does it around the time he has the seizures. I am really struggling to keep it together today. It's really hard to watch  my 8 year old son go from being a normal kid to one who is struggling to learn in school and remember simple things like what he named his goldfish. And thats just the icing, watching him have a seizure is like having someone rip my heart out, stomp on it and throw it back in. You would think it would get easier the more he has, wrong, it gets worse because that means he is not improving. This has been going on for what feels like forever.All morning I have been crying and wondering, why is he not getting better, why is the medicine not working. But then I feel guilty for doing so because  I know there are kids out there that have a more intense seizure disorder than Carter and I know his situation could be worse. But to me, this is worse, this is life changing. My son is regressing and I can't stop it. After every seizure, he doesn't talk, if he tries to, the words come out slow and you can barely understand him. Everytime I wonder if this will be the time that he doesn't get his speech back. He is in a downward spiral with this stupid disease and I fear that if we don't stop it soon, we will lose him forever, or at least lose the Carter we all know. I know that I am a pessimist to the core, I don't think that any one of you reading this would disagree with that, but how in the heck am I supposed to think positively at this point? I have tried this whole time to stay calm, have faith in the Dr's and think rationally. I am mentally and physically exhausted , I am having nightmares and horrific visions during the day, the other day I spaced out while tanning ( yes I know, slap on the wrist ) and pretty much envisioned the aftermath of Carter's death. I'm not saying that I think he is going to die but that is how "rational" my thinking is these days. Hmmm..... sorry I somehow have made this post about me... oh dear. It did feel good to get that out though.

Thanks for listening...


Nicole

Carter hasn't had another seizure since Tuesday night! This is good news and means the medication the Dr perscribed actually worked, so we will be able to keep it on hand and use it if he has another cluster in the future! We also got the blood work back and his lamictil levels are still middle of the road, meaning we still have room to go on his lamotrigine. Getting his blood taken before first dose of medication of the day gives a more acurate level reading. So we will go up on his lamotrigine by 25mg and see what the epilepsy specialist has to say. We meet with him in a couple weeks, I am very much looking forward to that!

Carter is doing well today, starting to get back to his normal self. When he has these "clusters" he just doesn't act like himself and then you add the extra medication to stop it and its worse, its like I don't even know him. But like I said, today he seems to be getting back to his normal self, yay!

Have a great day everyone!

Carter has had a total of  5 seizures since Monday morning, 4 of them happened today. We went in to get his blood drawn early this morning to check his lamictil levels before he took his morning dose of medicine. We should get the results of that tomorrow sometime. Carter is having what his Dr calls " a cluster of seizures" which could be brought on by a number of things, but the most important thing is stopping them. He perscribed a medication similar to the one he got via IV in the hospital on February 14th. We were halfway out the door to the hospital tonight after his last episode when I got a call back from the Dr, if this medicine stops the seizing we should not have to take a trip to the ER, if it doesn't we will need to go in order to get the medicine via IV. His Dr is hopefull this should stop them and if it does we will keep some on hand should this happen again. I asked why the sudden spike in seizures ( obvious question, I know ) and just like last month, its hard to tell for certain. Stress, lack of sleep, illness, missing a dose of medication are a few factors that could play a part in this, and he does seem to have the begining signs of a cold.... but the Dr also said it could be his ESES still evolving. That would be unfortuante, meaning we haven't seen all this disease can and will do to Carter boy. We are going to continue to work with the dosage on his current medications before we start ruling one out, and will take a bigger look at his condition and options about where to go from here when we meet with the epilepsy specialist.

Have a good night everyone...

I got a call from Carter's neurologist today. His EEG is unchanged. Not unexpected but still upsetting. Our next step is to have a meeting with his neurologist and the epilepsy Dr. We are at a stand still with the Lamotrigine and will now start the increase on Vimpat.

Today is the first day I researched ESES on the Epilepsy Foundation website, I had been fearful of what I might find , but this afternoon I felt I was ready. WRONG! What I found was heartbreaking. I read about a girl who had brain surgery because her ESES had caused a regression with no hope of returning to normal intellect in sight, that story also expressed that there were no medications that would correct ESES. I didn't check the date on that but it may have been from a few years ago. I read about another child who has ESES and was regressing so much to the point where he was just spratically spitting out words or phrases not making much sense most of the time. In all cases I read about today, all of the kids were a grade or two, if not more, behind intellectually. Carter is dealing with those issues right now, as well as anger and behavior issues. It is hard to tell which is directly related to his condition and which is him just being an 8 year old, but in all my reading this afternoon I believe the majority of it is in fact the ESES. One father was just so upset over his sons outbursts and anger and begging for relief from it all. I am not at that point with Carter yet, but I am fearful that I will be in the somewhat near future if we don't find a medication to correct this. On the upside of my research, many cases I read about were being treated with different medications than Carter, and they are correcting the ESES! So keeping that in mind I am hopeful that we too will find the right medication for our Carter boy.

I read a post today by someone who has a child suffering from ESES that stated : " this isn't just a diagnosis for my son, its a diagnosis for our entire family ". This is so true, our entire family is affected by this condition and I am extremely blessed to have such a wonderful support system. I am also so very thankful that Ryan , Holly, myself and JR can all get along and work together to help Carter through this.

Have a great weekend everyone and Happy Spring!

Wow, sorry everyone! I didn't realize it has been so long since I have posted!

Carter has been well over the past few weeks. Monday will be the first day of his "goal dose" of Lamictil ( Lamotrigine ). He has an EEG scheduled for Thursday at the Children's Hospital Everett Campus. I am hoping for ANY changes in his EEG, even if its a small one, I'll take it! Any sign that the medicines are starting to work would be a huge blessing.

We probably won't get the results back til Monday at the earliest, but I will post as soon as I hear!