Dr. J's nurse called today. The 24-hour EEG monitor that Elijah wore last week showed NO SEIZURES! This is great news. We can scratch seizures off the list and move forward. We did "mark" one of E's eye fluttering episodes while he was wearing the monitor, and Dr. J said there was a spike that showed (again) seizure tendencies. At this point, though, it's nothing at all to worry about or address.
We called and had the EEG results sent to E's sleep specialist in hopes that she might be able to gain insight from his overnight readings. We'll give her a chance to review them and follow up. We are determined to get him sleeping better. It just has to happen! Dan and I will continue to pursue options until we can figure something out.
Elijah and Sammy are both feeling a little bit better today, although neither of them is 100% back their usual spunky selves. E had another good morning at school today (at least according to him)! Yay! We spent some time this afternoon making valentines for his classmates and decorating a valentine box. We're hoping he will be able to attend the school party on Friday! His teacher had told us that she didn't think it was a good idea for him to come to class in the afternoons for the next few weeks, so we are hoping she will make an exception since he has been so excited about the V-Day party.
Thanks for checking in and we thank you all for walking this journey with us!
Showing posts with label EEG. Show all posts
Showing posts with label EEG. Show all posts
Wednesday, February 12, 2014
Sunday, February 9, 2014
School tomorrow!
Elijah was a very good sport, having all of that stuff on his head for 24 hours (as expected...he is always a good sport about medical stuff). Removing the wires, tape and glue was mildly traumatic, but we took care of it quickly to reduce the trauma. We don't expect to hear results from this EEG for a few days....so we wait patiently. We are fine with that. We are getting used to this patience thing lately!
I will be walking Elijah to the bus at the end of our driveway in the (freezing cold!) morning tomorrow for the first time in two months! It seems crazy that it has been so long. I feel simultaneously happy and anxious about it. I know that he needs school, the social parts and the academics. But I'm anxious about other parts that we have no control over. All we can do is pray that this last part of the year will be a mildly positive experience for him.
That's all for tonight. We wish you all a GREAT week! Thank you for checking in on us! We love you all!
Wednesday, February 5, 2014
Tendencies
Have I ever mentioned how much we love Elijah's doctors? He has the BEST people looking out for him, and his neurologist is no exception. He is WONDERFUL! His easy manner calmed me instantly at this morning's appointment, even before he said a single word. We chatted about our recent concerns, E's tics and recent onset of eye twiching/fluttering. He reviewed the EEG results from last week and even showed them (along with portions of the video that was taken during the test) to Dan and me and explained everything to us really well.
They couldn't have gathered better information from the EEG. During the period where they flashed lights in E's eyes, he had no unusual brain activity. Then a minute later, when there were no lights present, his eyes fluttered and there was still no seizure-like activity. Then later, as he was drifting off to sleep, there was a brief snippet of seizure-like activity and no eye fluttering. From all of that, we can conclude that the eye fluttering that happens when he looks at lights (outside of the test) is not seizure activity. The seizure-like activity they detected during the test was not a full-blown seizure, but indicates that he could have seizure "tendencies." There we go with the word "tendencies" again. How many times have we heard that word when people describe Elijah?! That could be normal or it could mean that at some point Elijah might possibly develop seizures. He made it sound like it was nothing to worry about now, but that we should let him know if it ever gets to the full-blown point.
Tomorrow we will go back to the clinic to get Elijah hooked up to an ambulatory EEG that will monitor brain activity for 24 hours. Dr. J wants to rule out full-blown seizures first and foremost. Seizures can disturb sleep, so with Elijah's sleep issues it will be interesting to see what his brain activity is like while he is sleeping...and waking up in those early morning hours.
Dr. J believes that Elijah has a tic disorder and that the eye movements, along with the rest of his body movements, are part of that disorder. Assuming we rule out seizures, there is nothing to do about the tics and there is nothing to worry about. He said when he sees a kid with tics, he knows two things for certain: the child has ADD (or tendencies, ha!) and the child has OCD/anxiety. Uhhh, hello! These are the exact things I've been saying about E all along. As he spoke, he just continued to describe our boy, as if he has lived in our home with us for the past seven years. "...these kids tend to be able to focus very well with things they are interested in. They cannot focus at all when there is no interest. Outbursts and an inability to transition out of an enjoyed activity are major issues, as well. Also, extreme stubbornness is common in these children..." Seriously, I felt like maybe a secret camera has been rolling in our home for the past several years. Dr. J told us that he had tics as a kid, too, and that most specialists can say the same thing. Dr. J has had the ADD "tunnel vision" his whole life and that is why he became a specialist. He loves his profession and is able to focus on it well because he loves it. He would not be able to focus on a different job without being medicated.
Dr. J hadn't seen Elijah since he was 2, and was impressed with how far he has come given all of his challenges. He gave Dan and I kudos for doing a great job with him, which felt good. We all know Elijah's the awesome one, though.
Click, click...I feel like we clicked at least a couple puzzle pieces into place today. Next, we will see what tomorrow's EEG tells us. After that, we'll explore more options with the sleep specialist and also explore ADD/OCD/anxiety. We're getting there!
They couldn't have gathered better information from the EEG. During the period where they flashed lights in E's eyes, he had no unusual brain activity. Then a minute later, when there were no lights present, his eyes fluttered and there was still no seizure-like activity. Then later, as he was drifting off to sleep, there was a brief snippet of seizure-like activity and no eye fluttering. From all of that, we can conclude that the eye fluttering that happens when he looks at lights (outside of the test) is not seizure activity. The seizure-like activity they detected during the test was not a full-blown seizure, but indicates that he could have seizure "tendencies." There we go with the word "tendencies" again. How many times have we heard that word when people describe Elijah?! That could be normal or it could mean that at some point Elijah might possibly develop seizures. He made it sound like it was nothing to worry about now, but that we should let him know if it ever gets to the full-blown point.
Tomorrow we will go back to the clinic to get Elijah hooked up to an ambulatory EEG that will monitor brain activity for 24 hours. Dr. J wants to rule out full-blown seizures first and foremost. Seizures can disturb sleep, so with Elijah's sleep issues it will be interesting to see what his brain activity is like while he is sleeping...and waking up in those early morning hours.
Dr. J believes that Elijah has a tic disorder and that the eye movements, along with the rest of his body movements, are part of that disorder. Assuming we rule out seizures, there is nothing to do about the tics and there is nothing to worry about. He said when he sees a kid with tics, he knows two things for certain: the child has ADD (or tendencies, ha!) and the child has OCD/anxiety. Uhhh, hello! These are the exact things I've been saying about E all along. As he spoke, he just continued to describe our boy, as if he has lived in our home with us for the past seven years. "...these kids tend to be able to focus very well with things they are interested in. They cannot focus at all when there is no interest. Outbursts and an inability to transition out of an enjoyed activity are major issues, as well. Also, extreme stubbornness is common in these children..." Seriously, I felt like maybe a secret camera has been rolling in our home for the past several years. Dr. J told us that he had tics as a kid, too, and that most specialists can say the same thing. Dr. J has had the ADD "tunnel vision" his whole life and that is why he became a specialist. He loves his profession and is able to focus on it well because he loves it. He would not be able to focus on a different job without being medicated.
Dr. J hadn't seen Elijah since he was 2, and was impressed with how far he has come given all of his challenges. He gave Dan and I kudos for doing a great job with him, which felt good. We all know Elijah's the awesome one, though.
Click, click...I feel like we clicked at least a couple puzzle pieces into place today. Next, we will see what tomorrow's EEG tells us. After that, we'll explore more options with the sleep specialist and also explore ADD/OCD/anxiety. We're getting there!
Friday, January 31, 2014
EEG results
For the record, I have never in the history of this 7-year-old blog written more entries within a single month. Lots of entries = lots of commotion.
As we were leaving Dan's beautiful grandmother's celebration service today, I saw that I had received a voicemail message. It was Dr. Judy. No news is good news, so quick news is...a punch in the gut. Elijah's EEG from yesterday showed abnormal results. That is the only information Dr. Judy received and we know nothing beyond that.
I called her back to chat in person, and she was generous (as always) with the time she took to talk to me. We went over some possible reasons for the abnormal results, some of them being: seizures, a sleep disorder and Tourette's Syndrome. She went back to the fact that the Valium helped Elijah's behavior for a period, which made her think seizures were the issue (apparently Valium can help with seizures, as well). But then, a sleep disorder could lead to major sleep deprivation, which could lead to involuntary body movements. She didn't think we had to worry about "the really bad stuff" since whatever we are dealing with has been going on for a while.
I'm trying not to think too much about it. I need to stop myself before going to very bad, fearful places. I have to trust that everything will be ok and that this is just another bump in his very colorful journey.
Next step: get into see Dr. J (neuro) to go over the results and learn what exactly is going on. Baby steps. Literally...one little step at a time.
As we were leaving Dan's beautiful grandmother's celebration service today, I saw that I had received a voicemail message. It was Dr. Judy. No news is good news, so quick news is...a punch in the gut. Elijah's EEG from yesterday showed abnormal results. That is the only information Dr. Judy received and we know nothing beyond that.
I called her back to chat in person, and she was generous (as always) with the time she took to talk to me. We went over some possible reasons for the abnormal results, some of them being: seizures, a sleep disorder and Tourette's Syndrome. She went back to the fact that the Valium helped Elijah's behavior for a period, which made her think seizures were the issue (apparently Valium can help with seizures, as well). But then, a sleep disorder could lead to major sleep deprivation, which could lead to involuntary body movements. She didn't think we had to worry about "the really bad stuff" since whatever we are dealing with has been going on for a while.
I'm trying not to think too much about it. I need to stop myself before going to very bad, fearful places. I have to trust that everything will be ok and that this is just another bump in his very colorful journey.
Next step: get into see Dr. J (neuro) to go over the results and learn what exactly is going on. Baby steps. Literally...one little step at a time.
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