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!
Showing posts with label neurology. Show all posts
Showing posts with label neurology. Show all posts
Wednesday, February 5, 2014
Tuesday, February 4, 2014
Neuro tomorrow
Elijah has been cleared to return to school starting on Monday for half days. We are thankful that his school's social worker has worked so hard to make this happen and also that she has sorted out all of the details.
Tomorrow morning is E's neuro appointment. Honestly, I'm having a mild panic attack over the thought of it. His tics tonight were intense. We are ready to fit a few big pieces of the puzzle into place. As Dan said today...a few sky pieces and a few grass pieces are going to be firmly placed!
That's all for tonight. Thanks for reading. Wishing you all a happy week!
Tomorrow morning is E's neuro appointment. Honestly, I'm having a mild panic attack over the thought of it. His tics tonight were intense. We are ready to fit a few big pieces of the puzzle into place. As Dan said today...a few sky pieces and a few grass pieces are going to be firmly placed!
That's all for tonight. Thanks for reading. Wishing you all a happy week!
Thursday, January 30, 2014
EEG and sleep appointment...check!
Last night we decided to bring the boys to Wednesday night church for maybe only the second time ever. We were instructed to give Elijah only a few hours of sleep for this morning's test, in which he was to be completely sleep-deprived. Typically we have him in bed by 6-6:30p because that is the only way we can keep him even mildly rested. Last night we had the freedom to actually get out of the house in the evening as a family! We put E to bed late, at almost 11:00p (SO late for him!), and woke him up at 4:00a.
If you've been reading our blog for a while, you might remember that 2011 almost broke me. That was the year of Elijah's third open heart surgery. My worries surrounding that (not Elijah's fault AT ALL....my own issues completely), combined with a horrible work situation (and ultimately the loss of my job), led to major anxiety and sleep-deprivation...which led to all sorts of physical and mental struggles.
Last night as I was trying to fall asleep, I felt an anxiety creep into my insides that I hadn't felt since that dark time. I felt that hopeless, anxious, unsettling feeling trying to make its way back into my bones. This new neurological concern for Elijah is so scary for me. It is uncharted territory that I honestly want nothing to do with. I kept thinking over and over last night...aren't heart/hearing/everything-else issues plenty? Hasn't he been through enough?!
Dan graciously offered to bring Elijah to the EEG testing at Children's this morning. I was kind of a wreck about it, and my husband is so good about knowing when to step in and just do things. Sammy and I waved goodbye as they literally drove off into a blizzard, making me even more anxious. I spent my morning worrying, allowing myself to visit very dark places and doing a lot of crying. Thanks to two of my very cherished friends, I was able to pull myself out of the madness. Heather and Sarah, THANK YOU! You two saved me today.
Sarah told me, "Megan, STOP! Go look into a mirror. Tell the devil to go away and think of how much God loves Elijah. You cannot let your mind go to that bad place." I thought, Oh my goodness, she is so right. What am I doing? So I did what she said and I was able to turn it around. And I've literally been thanking Jesus for it all day. Over and over...times a thousand. I refuse to go back to that very bad place I was at in 2011. No thank you, not going back there.
Ok, so news from E's appointments today.. the EEG went fine. Elijah was even able to fall asleep for a bit, which they prefer. We won't get those results for about a week, as his pediatrician and neurologist both need to review the results.
The sleep appointment went ok, as well. Dan said that Dr. W had an idea for a med that might help Elijah sleep better, after hearing that the Valium helped him with sleep (possibly) and behavior (for sure). A lot of things depend on...uh, well, so many other things. We have so many appointments coming up and we are looking forward to acquiring valuable opinions/info from a handful of different smart doctors. We don't want to medicate E or make major decisions until we gather more info and do more testing.
The sleep doc thought that the EEG and getting thoughts from neuro was a really great place to start. Baby steps! Our next step is ENT on Monday. I'm curious to know what the hearing test will reveal, as Elijah keeps insisting that he can hear "something" out of his left ear (??). I am also hoping that Dr. L will agree that it's best for E to go back to school on a part-time basis to start with. We do not feel he can handle full days at this point.
Tomorrow we will attend a funeral for Dan's precious, kind grandmother, who passed away on Sunday of this week. She was an amazing woman who loved Jesus. It is sad to say goodbye, but we are so happy to know where she is right now.
Thank you all so much for checking in and for the prayers! xo
If you've been reading our blog for a while, you might remember that 2011 almost broke me. That was the year of Elijah's third open heart surgery. My worries surrounding that (not Elijah's fault AT ALL....my own issues completely), combined with a horrible work situation (and ultimately the loss of my job), led to major anxiety and sleep-deprivation...which led to all sorts of physical and mental struggles.
Last night as I was trying to fall asleep, I felt an anxiety creep into my insides that I hadn't felt since that dark time. I felt that hopeless, anxious, unsettling feeling trying to make its way back into my bones. This new neurological concern for Elijah is so scary for me. It is uncharted territory that I honestly want nothing to do with. I kept thinking over and over last night...aren't heart/hearing/everything-else issues plenty? Hasn't he been through enough?!
Dan graciously offered to bring Elijah to the EEG testing at Children's this morning. I was kind of a wreck about it, and my husband is so good about knowing when to step in and just do things. Sammy and I waved goodbye as they literally drove off into a blizzard, making me even more anxious. I spent my morning worrying, allowing myself to visit very dark places and doing a lot of crying. Thanks to two of my very cherished friends, I was able to pull myself out of the madness. Heather and Sarah, THANK YOU! You two saved me today.
Sarah told me, "Megan, STOP! Go look into a mirror. Tell the devil to go away and think of how much God loves Elijah. You cannot let your mind go to that bad place." I thought, Oh my goodness, she is so right. What am I doing? So I did what she said and I was able to turn it around. And I've literally been thanking Jesus for it all day. Over and over...times a thousand. I refuse to go back to that very bad place I was at in 2011. No thank you, not going back there.
Ok, so news from E's appointments today.. the EEG went fine. Elijah was even able to fall asleep for a bit, which they prefer. We won't get those results for about a week, as his pediatrician and neurologist both need to review the results.
The sleep appointment went ok, as well. Dan said that Dr. W had an idea for a med that might help Elijah sleep better, after hearing that the Valium helped him with sleep (possibly) and behavior (for sure). A lot of things depend on...uh, well, so many other things. We have so many appointments coming up and we are looking forward to acquiring valuable opinions/info from a handful of different smart doctors. We don't want to medicate E or make major decisions until we gather more info and do more testing.
The sleep doc thought that the EEG and getting thoughts from neuro was a really great place to start. Baby steps! Our next step is ENT on Monday. I'm curious to know what the hearing test will reveal, as Elijah keeps insisting that he can hear "something" out of his left ear (??). I am also hoping that Dr. L will agree that it's best for E to go back to school on a part-time basis to start with. We do not feel he can handle full days at this point.
Tomorrow we will attend a funeral for Dan's precious, kind grandmother, who passed away on Sunday of this week. She was an amazing woman who loved Jesus. It is sad to say goodbye, but we are so happy to know where she is right now.
Thank you all so much for checking in and for the prayers! xo
Monday, May 18, 2009
Waiting..
A shirtless neb. Funny thing, the other day I saw a photo of a little boy about Elijah's age without a shirt on and I actually gasped when I saw that he didn't have scars on his chest. All we know is what is on Elijah, so it was strangely startling to see a scarless torso.
We are still waiting to hear from the neurosurgeon. I suppose it is a good sign that he isn't urgently calling us, but we are still very eager to know exactly what is going on with our munchkin's spine. If I don't hear anything tomorrow, I am supposed to call the neurologist so he can push things along.
We had a nice evening together. Elijah was full of energy and he was in a great mood. He explored every corner of our patio, which was really fun to watch. He picked up a rock and said, "OCK!" and then pointed at the baby gate and said, "DATE!" His speech is coming along really nicely.
That's all I've got. Just a quick update for now. Hopefully I will have an update from the neurosurgeon tomorrow.
Monday, May 11, 2009
God is present
We survived another day in the hospital. Elijah did amazingly well. He hadn't eaten since 6:00 last night, and by 1:00 this afternoon he hadn't complained once about that. We really do have a good little boy. We are so proud of him.
As we waited for anesthesia to come talk to us about what would be happening, I started to feel some serious anxiety. I kept wondering if this was the right thing to do. There is likely nothing "wrong" with Elijah's brain or spine, so is it right to put him through trauma yet again? I said to Dan, "Are we doing the right thing here?" He said yes, but I was still unsure. And then! One of those God Moments happened. We know this anesthesiologist at Children's who we absolutely totally completely love and adore. He took care of Elijah during his last open heart surgery, his hypospadias repair and I think maybe a heart cath or two. This doctor is the definition of wonderful. Really, he has everything you could ever ask for in a doctor, especially a doctor who is going to be by your son's side every second he is in surgery, or in today's case, getting tests done.
So, back to the God Moment. At the height of my anxiety, Dr. Altman entered the room and I couldn't believe it. OH THANK YOU GOD OH THANK YOU THANK YOU. He sat down and talked to us and within minutes I knew this was good, it was the right thing, and everything was going to be ok. Dan mentioned to him that E's neurologist wanted bloodwork taken while he was sedated and Dr. A said that it was not on the paperwork anywhere. So this amazing man called our neurologist and asked him to send in the orders so we could get this done. Some new guidelines had been implemented two days ago that requires ONLY doctors to be able to write in orders for tests, so we needed the neurologist to be available promptly. He was, but there were some problems with getting the orders into the system, so Dr. A took it upon himself to write the orders out himself, as if he were the one requesting them, so we could get this done. This is not something most doctors would be willing to do, and he even told us that. We were so thankful for his willingness to go around the system a bit. He said to us, "There is no way I am going to make a two-year-old come back to the hospital, fully awake, to go through the trauma of getting bloodwork taken when we can take care of it while he is sedated." THANK YOU DR. A! Oh man, we sure were thankful to have him as a part of our life today.
The MRI went well. It took about two hours. Elijah woke from the anesthesia just fine. We met him in the hallway (being held by a nurse, he wasn't just roaming the hallway alone) after the procedure and he was happy to see us. After his heart caths he is always grumpy, so it was nice to see a smile when we walked around the corner. We had to sit in the short stay unit for about a half hour and then we were sent home. Elijah was starving. Within about an hour and a half after leaving the hospital, he had: three boxes of apple juice, a huge ziploc bag filled with chocolate teddy grahams, a stick of string cheese, a huge slice of pizza, a cup of milk and about a zillion mandarin oranges. I guess he made up for what he missed today!
Elijah went to sleep well and was in good spirits this evening. The sedation has made him just a tiny bit hoarse, but otherwise all is well! We hope to get the results of the MRI in the next couple weeks. He was clearly upset whenever nurses were near him, but otherwise, he did really well today. We have such a strong, amazing little man.
We had a little detour on our way home from the hospital. As we were walking through the skyway out of the hospital, Dan and I were practically skipping. I think I said, "Wow! That was the easiest discharge we've ever experienced. This day is AWESOME!" We got into the car and started to drive away, when....thunk thunk thunk.. Uhhhh, is something wrong with the car? I got out to look at the tires and sure enough, the right front tire was totally flat. Oh ugh.
We have these stupid hubcaps on our car (they came with the tires) that make it so you cannot access the lug nuts (forgive me if I get this terminology wrong) with a normal tire iron. So dumb. So Dan and I just stared at each other like, what in the world are we going to do??? He looked in the trunk, in which I believe God had placed a bottle of Fix-a-flat. Dan pumped it into the tire and we quickly drove away, in hopes of finding tire help before it deflated again. Children's Hospital is in a very sketchy part of town, so I was biting my fingers as we drove. Please God, please God, don't strand us in this part of town. We thankfully came upon a tire shop, and we were totally blessed to meet an amazingly nice man who put on our spare tire almost immediately, and for FREE. I think we will go back there and bring him cookies and any other treat he might like.
I loved how we handled it all, though. I was proud of us. We could have freaked out and handled that situation poorly, but we kept humor in it and handled it lightly and I believe that was a good example for Elijah to witness. It was a good day. Everything went as well as it possibly could have and we are so thankful for that. God was with us today and it was so obvious. It's amazing what you see when you keep your heart and eyes open!
Thanks for checking in. Pray for good MRI results for our brave little boy. We already know he is just perfect.
As we waited for anesthesia to come talk to us about what would be happening, I started to feel some serious anxiety. I kept wondering if this was the right thing to do. There is likely nothing "wrong" with Elijah's brain or spine, so is it right to put him through trauma yet again? I said to Dan, "Are we doing the right thing here?" He said yes, but I was still unsure. And then! One of those God Moments happened. We know this anesthesiologist at Children's who we absolutely totally completely love and adore. He took care of Elijah during his last open heart surgery, his hypospadias repair and I think maybe a heart cath or two. This doctor is the definition of wonderful. Really, he has everything you could ever ask for in a doctor, especially a doctor who is going to be by your son's side every second he is in surgery, or in today's case, getting tests done.
So, back to the God Moment. At the height of my anxiety, Dr. Altman entered the room and I couldn't believe it. OH THANK YOU GOD OH THANK YOU THANK YOU. He sat down and talked to us and within minutes I knew this was good, it was the right thing, and everything was going to be ok. Dan mentioned to him that E's neurologist wanted bloodwork taken while he was sedated and Dr. A said that it was not on the paperwork anywhere. So this amazing man called our neurologist and asked him to send in the orders so we could get this done. Some new guidelines had been implemented two days ago that requires ONLY doctors to be able to write in orders for tests, so we needed the neurologist to be available promptly. He was, but there were some problems with getting the orders into the system, so Dr. A took it upon himself to write the orders out himself, as if he were the one requesting them, so we could get this done. This is not something most doctors would be willing to do, and he even told us that. We were so thankful for his willingness to go around the system a bit. He said to us, "There is no way I am going to make a two-year-old come back to the hospital, fully awake, to go through the trauma of getting bloodwork taken when we can take care of it while he is sedated." THANK YOU DR. A! Oh man, we sure were thankful to have him as a part of our life today.
The MRI went well. It took about two hours. Elijah woke from the anesthesia just fine. We met him in the hallway (being held by a nurse, he wasn't just roaming the hallway alone) after the procedure and he was happy to see us. After his heart caths he is always grumpy, so it was nice to see a smile when we walked around the corner. We had to sit in the short stay unit for about a half hour and then we were sent home. Elijah was starving. Within about an hour and a half after leaving the hospital, he had: three boxes of apple juice, a huge ziploc bag filled with chocolate teddy grahams, a stick of string cheese, a huge slice of pizza, a cup of milk and about a zillion mandarin oranges. I guess he made up for what he missed today!
Elijah went to sleep well and was in good spirits this evening. The sedation has made him just a tiny bit hoarse, but otherwise all is well! We hope to get the results of the MRI in the next couple weeks. He was clearly upset whenever nurses were near him, but otherwise, he did really well today. We have such a strong, amazing little man.
We had a little detour on our way home from the hospital. As we were walking through the skyway out of the hospital, Dan and I were practically skipping. I think I said, "Wow! That was the easiest discharge we've ever experienced. This day is AWESOME!" We got into the car and started to drive away, when....thunk thunk thunk.. Uhhhh, is something wrong with the car? I got out to look at the tires and sure enough, the right front tire was totally flat. Oh ugh.
We have these stupid hubcaps on our car (they came with the tires) that make it so you cannot access the lug nuts (forgive me if I get this terminology wrong) with a normal tire iron. So dumb. So Dan and I just stared at each other like, what in the world are we going to do??? He looked in the trunk, in which I believe God had placed a bottle of Fix-a-flat. Dan pumped it into the tire and we quickly drove away, in hopes of finding tire help before it deflated again. Children's Hospital is in a very sketchy part of town, so I was biting my fingers as we drove. Please God, please God, don't strand us in this part of town. We thankfully came upon a tire shop, and we were totally blessed to meet an amazingly nice man who put on our spare tire almost immediately, and for FREE. I think we will go back there and bring him cookies and any other treat he might like.
I loved how we handled it all, though. I was proud of us. We could have freaked out and handled that situation poorly, but we kept humor in it and handled it lightly and I believe that was a good example for Elijah to witness. It was a good day. Everything went as well as it possibly could have and we are so thankful for that. God was with us today and it was so obvious. It's amazing what you see when you keep your heart and eyes open!
Thanks for checking in. Pray for good MRI results for our brave little boy. We already know he is just perfect.
Wednesday, April 22, 2009
Neurology and a very important letter
Dan brought Elijah to his neurology appointment this morning. It sounds like it went well. I really wanted to be there, especially since it was the first one, but I can't afford the time off work. So, the following information is being delivered second hand..
Dan really liked the neurologist. He said he was thorough and laid back and very warm. After doing an exam, Dr. J expressed that he really doesn't think Elijah has suffered any brain damage (from his previous low oxygen saturations or surgeries/medications, etc.) or that he will struggle cognitively at all. The only real worry is his lagging gross motor skills and his low muscle tone, and even these issues do not seem like they will be long-term concerns. To make sure, though, he wants to run an MRI on his brain and spine (on May 11th). They will also perform a muscle test where they draw blood straight from the muscle to check for abnormalities. A urine test and a metabolism test will be done as well. I don't know the details of these, but the doctor said he really doesn't expect to find anything wrong, so maybe I'll never need to know details. Let's pray that he is right!
His best guess is that in a few years, our little munchkin will be all caught up with development. As always with Elijah, patience is the key.
-----------------------------
On another note, aisogh a[owieyt. Oh, woops! I just fell asleep on my laptop. Elijah's cough/cold symptoms started up in full force again in the past couple days, so we're all a little drained. This cough! I want to hurt it so badly. Maybe I'll write it a letter instead:
Dear Loathsome Cough of our Precious Elijah,
I feel I must enlighten you regarding the fact that you continue to make Elijah feel crummy, and that you are making us a very sleep-deprived little family. Neither of these things are issues that we want to have in our lives, so I'm going to go ahead and ask you to leave immediately.
Since there is no medication we can give Elijah in order to get rid of you, we unfortunately have to let him endure your wrath as we grit our teeth and punch our heads. This is especially difficult during the night because there is this thing called SLEEP that we all need in order to function, and if we are repeatedly punching our heads, sleep does not come easily.
This morning, being sleep-deprived already (thanks to you), and knowing I had to go to work in a few short hours, I resorted to sleeping in the closet from 4:15 until 6:30 because that was the only place in the house where you, the dreadful Cough, could not be heard. It is quite rude for a(n unwanted) guest to force me into my own closet to unite with sleep, don't you think?
Elijah has been extremely patient with you. He has endured you with dignity for your very extended visit (don't you think August through April is a bit long to be a house guest?). Although he is too polite to admit it himself, you have caused his little body a lot of disturbance and stress. So, back off, would you? Give the kid a break.
In a nutshell, WE DON'T LIKE YOU. We wish for you to leave and never return. We don't care what happens to you once you leave. Please don't write.
Signing off through very blurred and bloodshot eyes (thanks to you),
Elijah's mama
p.s. You can take your cousin, Green Snot, along with you. Both of your suitcases are out on the curb, ready to go.
Dan really liked the neurologist. He said he was thorough and laid back and very warm. After doing an exam, Dr. J expressed that he really doesn't think Elijah has suffered any brain damage (from his previous low oxygen saturations or surgeries/medications, etc.) or that he will struggle cognitively at all. The only real worry is his lagging gross motor skills and his low muscle tone, and even these issues do not seem like they will be long-term concerns. To make sure, though, he wants to run an MRI on his brain and spine (on May 11th). They will also perform a muscle test where they draw blood straight from the muscle to check for abnormalities. A urine test and a metabolism test will be done as well. I don't know the details of these, but the doctor said he really doesn't expect to find anything wrong, so maybe I'll never need to know details. Let's pray that he is right!
His best guess is that in a few years, our little munchkin will be all caught up with development. As always with Elijah, patience is the key.
-----------------------------
On another note, aisogh a[owieyt. Oh, woops! I just fell asleep on my laptop. Elijah's cough/cold symptoms started up in full force again in the past couple days, so we're all a little drained. This cough! I want to hurt it so badly. Maybe I'll write it a letter instead:
Dear Loathsome Cough of our Precious Elijah,
I feel I must enlighten you regarding the fact that you continue to make Elijah feel crummy, and that you are making us a very sleep-deprived little family. Neither of these things are issues that we want to have in our lives, so I'm going to go ahead and ask you to leave immediately.
Since there is no medication we can give Elijah in order to get rid of you, we unfortunately have to let him endure your wrath as we grit our teeth and punch our heads. This is especially difficult during the night because there is this thing called SLEEP that we all need in order to function, and if we are repeatedly punching our heads, sleep does not come easily.
This morning, being sleep-deprived already (thanks to you), and knowing I had to go to work in a few short hours, I resorted to sleeping in the closet from 4:15 until 6:30 because that was the only place in the house where you, the dreadful Cough, could not be heard. It is quite rude for a(n unwanted) guest to force me into my own closet to unite with sleep, don't you think?
Elijah has been extremely patient with you. He has endured you with dignity for your very extended visit (don't you think August through April is a bit long to be a house guest?). Although he is too polite to admit it himself, you have caused his little body a lot of disturbance and stress. So, back off, would you? Give the kid a break.
In a nutshell, WE DON'T LIKE YOU. We wish for you to leave and never return. We don't care what happens to you once you leave. Please don't write.
Signing off through very blurred and bloodshot eyes (thanks to you),
Elijah's mama
p.s. You can take your cousin, Green Snot, along with you. Both of your suitcases are out on the curb, ready to go.
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