Hello Everyone!

Since my last blog Carter has continued to have seizures. He had at least one every week in July. We had a good run in August without him having one but the last week or so he has had 3, which is upsetting since he will be starting school on Wednesday. The thought of sending him to school makes me sick. He could have a seizure at any time.

Last week the Dr's increased the morning depakote dose. Sometimes a med change can trigger a seizure, not sure if thats the case or not since they are all happening in the morning around the same time he takes his meds. He has labs in a couple weeks and a follow up November.

Thats about it for now! Take care all!

WOW! Its been awhile! I am sorry, when I started this blog I had every intention of posting every week at least. Yeah.... that hasn't worked out so well! 

As I mentioned in my previous post, Carter has been seeing Dr. Kuratani , an epilepsy specialist and he added a new medication ( depakote ) . Carter had a seizure at school the morning of May 25th, aside from typical post seizure, he returned to his normal self quite a bit sooner than usual. We had a scheduled appointment with Dr. Kuratani on June 14th, at which he increased his depakote dose. That night Carter must have had a nightmare or sensed he was going to have one because I awoke to him on my floor at around 2am having a seizure. I didn't even know he was in my room! But at some point he had gotten some blankets and made himself a bed on my floor. The next morning we started the depakote increase.  He seemed to be doing well at first but after a week his behavior started to go downhill, as well as his back/muscles hurting, he became more agitated and showing odd behavior such as biting himself. Last Friday he had another seizure. I spoke with Dr. Richardson and he had Carter come in and get more blood drawn to do more testing. We are still waiting on the Lamictil levels ( which is he is expecting to be high ) but everything else came back normal. Could be side effects of the depakote or the depakote increase may have brought his lamictil level too high. Either way, we were urged to go back to the original depakote increase. Early this afternoon he had another seizure with Ryan and Holly. The Dr did say the change in dose could cause a seizure within the next couple days, that was Saturday and this is Tuesday so who knows. I have a call into him and hopefully will hear back tonight or tomorrow. It is so frustrating that we can not find a medication to control this! Just when you think its safe to breathe again...its not. And having to miss work every other week is like kicking you when your down.. I am dreaming of a more stable and normal future, whenever that may be.

Happy Summer!

Hello everyone! Since my last post we have done some tweaking to Carter's meds. Back in January his lamotrigine changed manufacturers. At first I didn't really think anything of it. But once he started having more daytime seizures I started to wonder about it. I asked his Dr a couple of times but never really got the feeling he was concerned. Well, as you could tell from my last post, I had enough, I was encouraged by a friend to look into the manufacturer switch. I called medco and spoke to their pharmacist. She said that it absolutely could cause the spike in seizures, I explained to her that he had the first two in May and then one in September and then nothing until February, only 3 1/2 weeks after the manufacturer switch. She of course couldn't say for sure this was the cause of the increased daytime seizures, but she had other cases where it had. She strongly recommended that we switch back to the old manufacturer, which we did last Thursday. I am hopeful that the switch will help reduce the daytime seizures. It was just too much of a coincidence that 3 weeks after the change he had a cluster of seizures and then each time his Dr increased his dose, he would have another.

We also met with the epilepsy specialist today. He is adding a new medication that he believes could take care of his daytime seizures and his nighttime ones. Of course he can't say for sure that it will work, but I am hopeful. We will reduce the lamotrigine dose and keep the vimpat for now, but don't think it will stay on as part of the long term plan ( vimpat ).We will meet with him in a couple months to check his progress. In the meantime Carter needs to be closely supervised as we do not have control of seizures right now. We had a good talk with him and got some good information. He believes Carter is having complex-partial seizures, meaning only part of the brain is seizing, this does not mean however that these are the only types he will have, he has already had a few absent seizures ( staring spells ) and it is a possibility he could have a grand mal seizure. This new medication ( should it work ) would be control for both partial and general ( grand mal ) seizures, as well as the ESES. I am feeling very optimistic about this... I just have a good feeling :)

Have a great night everyone and keep the prayers coming!

Nicole

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!

This week Carter has been pretty drowsy and still not quite himself. Today however, he seems to have more energy back and isn't quite as irritable. Monday afternoon we go to Children's at Everett for a follow up appointment.

Have a great weekend everyone!

Today is Carter's first day off of the medicine the hospital sent us home with and he seems to be doing fine so far! : ) He has been running around here chasing Talon! Hopefully he will continue to do well the rest of the weekend.

I would just like to say thank you again, for all of the love and support from all of our family and friends.

Hope everyone has a great weekend,

Nicole

Hello friends and family. As you know, Carter was diagnosed with ESES, which is a form of epilepsy, back in June. ESES means Electrical Status Epilepticus of sleep. Best way to describe this is that he is having numorous "electical storms in his brain" aka seizures while asleep.We can't see them and he can't tell he is having these "storms". He has these while awake as well, just not as often.The symptoms of this include; clincial seizures, delays in learning, speech impairments, behavior issues, etc... We got the diagnosis after an over night EEG at Children's hospital. All of this came about on May 28th when he had his first "clinical Seizure" in other words, a seizure we can see. The type of clinical seizures he has are not the typical fall on the floor jerking and convulsing type. He will stare off, at first seeming to ignore you, his mouth will continuously twitch to one side, often making a clicking sound, his eyes stay open and often roll up and down or back and forth, he usually drools or foams at the mouth and in some episodes his arm will stiffen or shake. In more recent episodes, he knees will give out and he will begin to fall, luckily someone has been there each time to catch him.These episodes will last anywhere from 20 seconds to 2 minutes. After the seizing is done, he is confused, angry, and extremely sleepy. He will have a hard time talking or not talk at all, he just seems in his own world.

He had his first 2 clinical seizures on May 28th . He had another on September 23rd. His 3rd one occured just this past Saturday at his basketball game. He had another the next day. Monday morning ( Valentine's Day ) he woke at his Dad's house early and we believe he had one while playing legos with his stepbrother Logan. His behavior was off that day,he was extremely drowsy, not really talking, having loss of memory and complaining of a head ache. His stepmom Holly had called me a few times early that morning suspecting he had had a couple seizures. While dropping his half sister Ashlynn off at school he had another one in the hallway and Holly had to catch him as his knees gave out during the seizure. This one lasted a tad longer and his whole head was jerking, not just his mouth. JR and I met Ryan , Holly and Carter in Children's hospital ER not much longer after that. Carter had another seizure in the bathroom with Ryan upon arriving at the ER. When I got there, he was eating cheese its. I said hi to him but he just kept staring off as if he didn't hear me. I sat next to him, trying to make conversation, I was lucky if he looked at me. My heart was broken, where was my Carter boy?

It was  a long, long day in the ER, he had 3 more seizures while in our ER room before we were actually admitted ( 6pm ). He would doze off for like 45 minutes wake up for 15minutes to an hour and then have another one. He had a total of 7 that day. He was given Fosphenytoin (800mg) in the ER, this stopped the clinical seizures but because it was such a high dose and strong drug, he was pretty loopy and out of it. Ryan and I stayed with him that night, he got sick a few times and couldn't walk on his own. But hey, it was better than him not talking and laying there staring off like he was earlier in the day.

We are at home now and we are to continue this new medication for 2 more days. It is a lower dose so the side effects are minimal, he still however is not quite himself. We were instructed to go up in dosage on his current meds. They don't know why the sudden spike in seizures. But it does happen, this happens to other people, they just don't know why. We have a follow up appointment on the 28th and another EEG on March 17th.

His DR seems certain that eventually we will be able to control his clinical seizures, its correcting the abnormal EEG ( The ESES ) that is tricky. For both issues, finding the right medicine is key, we just have to get there.

I created this blog so that those of you who care about Carter can have someplace to go to check in on him and see how he is doing. Thank so much for all of your love, support and prayers, I personally struggle with the reality of this on a daily basis and welcome any kind words, prayers and thoughts that are sent our way.Carter is my precious sweet boy and I want nothing more than to just "make it better". I would trade places with him in a heartbeat if I could.

Much love,
Nicole