When we were released from the hospital a couple of weeks ago we were told that we would be following up with various tests. One of the things that we are trying to determine is if Christopher needs of pacemaker.
The number of children suffering from rhythm disorders requiring them to be pacemaker dependent is very small. Once a pacemaker is implanted it is usually for life. Living with a pacemaker myself has caused me very little in the way of inconvenience to my normal, daily routine in the last year. However, I could see where it could indeed be a quality of life issue in that of a young, active boy. There is also the problem of growth after pacemaker implantation. These things cause us to take serious pause here.
Ken and I are both leaning toward waiting as long as possible before taking this lifechanging step. However, I'm reminded again and again that 7 year old boys don't faint for no reason. This is actually Christopher's second fainting episode this year. The first was extremly brief (seconds) and at a time when he was already ill, we didn't think much of it. However, it seems much more significant now. According to the doctors these incidences combined with his underlying cardiac issues make the prospect of a pacemaker in Christopher's near future worthy of consideration. It's already proving to be a tough pill to swallow and we're not even there yet.
So far this is what is on schedule:
It's now day 2 out of 21 of Christopher wearing the LifeWatch LifeStar ACT sensor & monitor as directed by his pediatric electorphysiologist, Dr. Love (yes, that's his real name). LifeStar ACT (Ambulatory Cardiac Telemetry) is a wireless cardiac telemetry system. It is designed for remote arrhythmia monitoring. There are three electrodes attached to Christopher's chest and connected to a transmitter which is hanging from a lanyard around his neck. The transmitter sends the ECG data to a portable handheld device (a verizon cellphone) where it is anlyzed. If an arrhythmia is identified, the data is automatically transmitted to a montioring center for immediate review.
It is important that Christopher wear this device around his neck as well as carry the cellphone in his pocket at all times. The cellphone should always be within 6-10 feet of him. He can take the electrodes off to shower or for other testing (because the electronics would clash). But after 2 hours all contact is broken and we would need to start over again. He took an extra long shower last night and then asked if he could bring a chair in there with him tomorrow night!
The cellphone needs to be charged every night but still needs to be within 6 - 10 feet of Chris. I suggested that it might be fun if he thought of it as his baby and so he had to carry it with him everywhere he went and we could even name it. But he was emphatic that he did NOT want to name it because that meant he would have it forever and he doesn't want it at all.
I sent notes to the school teacher and the nurse. I feel it is important that they are informed as well as sensitive to what Christopher is dealing with right now while at the same time not over-reacting. It is important that Christopher go about his normal, active routine while wearing the sensor, which includes running & playing at recess and participating in gym class. I had a great phone call with the school nurse yesterday and felt very reassured afterwards.
I had a consultation with the neurologist last week. He said that there are things about the episode that sound like a seizure (locking up, head position, eyes partially open, extreme grogginess afterward) and things that sound more like a cardiac event (drop in heart rate, cold & clammy). He said that right now based on what he has heard as well as Christopher's cardiac history he is 60-40% leaning toward cardiac rather than neurological but he feels it is worth following up with some routine tests.
When I told him what Dr. Gelb had explained to me (previous post) he told me about "Occam's Razor" and how it would relate to Christoper's case...... a unifying diagnosis would explain all of the patient's problems (in Christopher case cardiac). Makes sense to me. However, he still felt that some routine neurological testing was appropriate. I came home and looked up Occam's Razor, only to stumble across something called Saint's Triad. One cause vs. multiple causes.....this had me going for days....ugh!
In the meantime I've had an EP visit of my own at which I did discuss Christopher. My EP, Dr. Sichrovsky (aka Dr. Tina), who I love, handed me a pamphlet called "Unexplained Fainting, Palpitations and Seizure-Like Episodes." According to the pamphlet fainting can be caused by a variety of conditions, however fainting due to a heart condition can be especially serious. According to the Epilepsy Foundation, 44% of people diagnosed with epilepsy continue to have seizures despite treatment. In many cases patients actually have treatable heart conditions.
Dr. Tina then went on to explain a device called an Implantable ECG Monitor put out by Transoma. It is a small device implanted under the skin near the shoulder that continuously monitors the electrical activity of the heart for up to two years. Seems like a long time but not really when you consider that a pacemaker is for life. This Implantable ECG Monitor might be a good first step to acquiring some important information on what is going on with Christopher in order to help accurately diagnose & treat....rather than just putting in a pacemaker. I plan on bringing this pamphlet with me when we meet with Dr. Love next week. Definitely worth talking about I think.
I've been running around talking to doctor after doctor, doing internet searches and gathering as much information as I can. I've been in contact with our insurance company (almost every other day) and thankfully they have been wonderful...can't imagine if we had to worry about that too.
Unfortunately with my family history Christopher carries the gene with a defect that causes the Tin Man Syndrome. They call it the Tin Man gene because when it was reproduced in a mouse the mouse was born without a heart. Just like the Tin Man. Quite ironic if you ask me since Christopher is one of the most big-hearted, lving & lovable kids I have ever known. But the fact remains, Christopher will have a life long history with his heart. The Tin Man gene, as well as affecting the structure of the heart, also causes sudden cardiac arrest if not treated. This means that he will need to be monitored throughout his life. We're not taking any chances with this boy!
As a dear friend reminded me, God doesn't give us any more than we can handle, so I know Chris will be more than able to handle the dreaded stickies for the next 21 days as well as anything else that comes his way.
I'll be updating here as I learn stuff...or if I just feel the need to share! That has always been my way when facing a personal crisis....I need to share.....and rally the troops!
Thanks!
~~~~~~~~
The number of children suffering from rhythm disorders requiring them to be pacemaker dependent is very small. Once a pacemaker is implanted it is usually for life. Living with a pacemaker myself has caused me very little in the way of inconvenience to my normal, daily routine in the last year. However, I could see where it could indeed be a quality of life issue in that of a young, active boy. There is also the problem of growth after pacemaker implantation. These things cause us to take serious pause here.
Ken and I are both leaning toward waiting as long as possible before taking this lifechanging step. However, I'm reminded again and again that 7 year old boys don't faint for no reason. This is actually Christopher's second fainting episode this year. The first was extremly brief (seconds) and at a time when he was already ill, we didn't think much of it. However, it seems much more significant now. According to the doctors these incidences combined with his underlying cardiac issues make the prospect of a pacemaker in Christopher's near future worthy of consideration. It's already proving to be a tough pill to swallow and we're not even there yet.
So far this is what is on schedule:
- Chris will wear a LifeStar ACT sensor for 21 days
- Chris will have an MRI on 9/15
- We will meet with Dr. Love on 9/17
- Chris will have a 30 minute EEG on 9/24
It's now day 2 out of 21 of Christopher wearing the LifeWatch LifeStar ACT sensor & monitor as directed by his pediatric electorphysiologist, Dr. Love (yes, that's his real name). LifeStar ACT (Ambulatory Cardiac Telemetry) is a wireless cardiac telemetry system. It is designed for remote arrhythmia monitoring. There are three electrodes attached to Christopher's chest and connected to a transmitter which is hanging from a lanyard around his neck. The transmitter sends the ECG data to a portable handheld device (a verizon cellphone) where it is anlyzed. If an arrhythmia is identified, the data is automatically transmitted to a montioring center for immediate review.
It is important that Christopher wear this device around his neck as well as carry the cellphone in his pocket at all times. The cellphone should always be within 6-10 feet of him. He can take the electrodes off to shower or for other testing (because the electronics would clash). But after 2 hours all contact is broken and we would need to start over again. He took an extra long shower last night and then asked if he could bring a chair in there with him tomorrow night!
The cellphone needs to be charged every night but still needs to be within 6 - 10 feet of Chris. I suggested that it might be fun if he thought of it as his baby and so he had to carry it with him everywhere he went and we could even name it. But he was emphatic that he did NOT want to name it because that meant he would have it forever and he doesn't want it at all.
I sent notes to the school teacher and the nurse. I feel it is important that they are informed as well as sensitive to what Christopher is dealing with right now while at the same time not over-reacting. It is important that Christopher go about his normal, active routine while wearing the sensor, which includes running & playing at recess and participating in gym class. I had a great phone call with the school nurse yesterday and felt very reassured afterwards.
I had a consultation with the neurologist last week. He said that there are things about the episode that sound like a seizure (locking up, head position, eyes partially open, extreme grogginess afterward) and things that sound more like a cardiac event (drop in heart rate, cold & clammy). He said that right now based on what he has heard as well as Christopher's cardiac history he is 60-40% leaning toward cardiac rather than neurological but he feels it is worth following up with some routine tests.
When I told him what Dr. Gelb had explained to me (previous post) he told me about "Occam's Razor" and how it would relate to Christoper's case...... a unifying diagnosis would explain all of the patient's problems (in Christopher case cardiac). Makes sense to me. However, he still felt that some routine neurological testing was appropriate. I came home and looked up Occam's Razor, only to stumble across something called Saint's Triad. One cause vs. multiple causes.....this had me going for days....ugh!
In the meantime I've had an EP visit of my own at which I did discuss Christopher. My EP, Dr. Sichrovsky (aka Dr. Tina), who I love, handed me a pamphlet called "Unexplained Fainting, Palpitations and Seizure-Like Episodes." According to the pamphlet fainting can be caused by a variety of conditions, however fainting due to a heart condition can be especially serious. According to the Epilepsy Foundation, 44% of people diagnosed with epilepsy continue to have seizures despite treatment. In many cases patients actually have treatable heart conditions.
Dr. Tina then went on to explain a device called an Implantable ECG Monitor put out by Transoma. It is a small device implanted under the skin near the shoulder that continuously monitors the electrical activity of the heart for up to two years. Seems like a long time but not really when you consider that a pacemaker is for life. This Implantable ECG Monitor might be a good first step to acquiring some important information on what is going on with Christopher in order to help accurately diagnose & treat....rather than just putting in a pacemaker. I plan on bringing this pamphlet with me when we meet with Dr. Love next week. Definitely worth talking about I think.
I've been running around talking to doctor after doctor, doing internet searches and gathering as much information as I can. I've been in contact with our insurance company (almost every other day) and thankfully they have been wonderful...can't imagine if we had to worry about that too.
Unfortunately with my family history Christopher carries the gene with a defect that causes the Tin Man Syndrome. They call it the Tin Man gene because when it was reproduced in a mouse the mouse was born without a heart. Just like the Tin Man. Quite ironic if you ask me since Christopher is one of the most big-hearted, lving & lovable kids I have ever known. But the fact remains, Christopher will have a life long history with his heart. The Tin Man gene, as well as affecting the structure of the heart, also causes sudden cardiac arrest if not treated. This means that he will need to be monitored throughout his life. We're not taking any chances with this boy!
As a dear friend reminded me, God doesn't give us any more than we can handle, so I know Chris will be more than able to handle the dreaded stickies for the next 21 days as well as anything else that comes his way.
I'll be updating here as I learn stuff...or if I just feel the need to share! That has always been my way when facing a personal crisis....I need to share.....and rally the troops!
Thanks!
~~~~~~~~
3 comments:
Laura, you explained this so well - clearly enough that even I (almost) understand. You are the best best mommy I know! Chris (and Eddie and Kenny -both Kenny's) are very lucky to have you.
love, hugs and kisses....
L+K
yr fave mom
me
Hi Sweet Girl,
Your mom is right. You should be writing a book ("Heart Problems Explained for Dummies). Actually, doctors could take lessons from you on how to explain a complicated diagnosis. I am still keeping Christopher in my prayers everyday. He is one super kid.
Stay in touch.
Love,
Aunt Jean
Hahaha! I just do ALOT of surfing the net for info on this stuff! But thanks for reading my loooong blog entries! xoxoxo
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