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!
Friday, February 25, 2011
Saturday, February 19, 2011
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
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
Wednesday, February 16, 2011
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
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
Subscribe to:
Posts (Atom)