Guest guest Posted January 6, 2006 Report Share Posted January 6, 2006 have you been to see an opthamologist, they almost definitively rule out CTD. I waited to have Madison's echo done until after her cast was removed and everything turned out to be fine. Also something to consider, Madison was 19 months when hers was performed and she wasn't sedated. It is what they prefer because it makes their jobs easier, but we requested to have it without sedation. I thought with so much sedation from cast changes, I wanted to eliminate it when not actually necessary. I just read to her and brought a portable DVD player with me so she could watch a movie while it was being performed. It acutually made the process go much faster and it worked for us. Something to consider.jviv314 <jviv314@...> wrote: Jake went to the cardiologist today to try to get an echocardiogram. They (geneticist and cardiologist) are trying to rule out Marfan Syndrome and/or vascular type of Ehlers-Danlos. Due to his cast and his age, they were unable to get a clear picture of his heart. They didn't even try because most of heart is covered with cast. They also said because he is 17 months he would need to be sedated to have a good echo done. My next step is to contact Shriners to see if it is possible to have it done there after he is sedated for his next cast. I'm sure Dr. Khoury is going to think we are a huge pain.Also because of his age, they usually don't do anything for an enlarged aorta unless it is extremely severe. Even if they see nothing abnormal on this echo, he will need one every 5 years to monitor the situation due to unconfirmed/undiagnosed ctd. They are a little concerned as heart issues run in both sides of the family.mom to and JakeP.S. Also wanted to add that I received the eob from my insurance company for our geneticist appointment 2 weeks ago. They charged my insurance $661 for our 1 hour visit!!!!!! YIKES DSL Something to write home about. Just $16.99/mo. or less Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2006 Report Share Posted January 6, 2006 Hi I was wondering what signs/ symptoms are they seeing that is suggesting a heart problem? Mason who is 21mths now has a congenital heart defect. Almost all of our docs say that is spinal deformities and heart defect...although both congenital, are unrelated. Only one doc says that it could be a defect of the midline...but not a syndrome. Sorry ...I'm not real good at keeping up with replies in the group but the cardiologist subject caught my eye. There are over 30,000 babies born a year with a CHD (congenital heart defect), just in the US. And over half of them go undiagnosed until its too late. Did the docs check Jakes oxygen levels? If theyre anythign below 95% that can be a sign of a defect. Dont they do general anesthesia for the casting at shriners or is it somethign else? When they sedate for ECHO's (since Mason has had a million of them) they just give an oral sedation to knock him out for about an hour or less. Some kids get real cranky before they fall asleep or a little irritable when they wake up. Mase usually will wake up after theyre done...drink some milk and then sleep for like 3hrs and wakes up fine. The med is called Chloral Hydrate that they give Mase. I would think thats what most docs use. Luckily when Mase was in his cast they were able to cut out a big enough belly window for the ECHO to be done. OH and another thing about the sedation...in order for them to get a really good read and look at everything they want to it can take a hour or longer for the ECHO to be completed. Whenever they do one on Mase unsedated...20mins tops and he's had enough of it and they never get to get a good look or even see everything they want too. The only thing I would suggest is to make sure you have a cardiologist do the ECHO rather then a radiolgist. You will get VERY DIFFERENT reads from one to the other. I got a little long winded. Sorry. It just worries me when i see heart problems. There is little awareness about heart defects/disease even in the medical community. Hope everythign is ok. take Care Jen and Mason - 21mths, scoliosis, kyphosis and hypoplastic left heart syndromejviv314 <jviv314@...> wrote: Jake went to the cardiologist today to try to get an echocardiogram. They (geneticist and cardiologist) are trying to rule out Marfan Syndrome and/or vascular type of Ehlers-Danlos. Due to his cast and his age, they were unable to get a clear picture of his heart. They didn't even try because most of heart is covered with cast. They also said because he is 17 months he would need to be sedated to have a good echo done. My next step is to contact Shriners to see if it is possible to have it done there after he is sedated for his next cast. I'm sure Dr. Khoury is going to think we are a huge pain.Also because of his age, they usually don't do anything for an enlarged aorta unless it is extremely severe. Even if they see nothing abnormal on this echo, he will need one every 5 years to monitor the situation due to unconfirmed/undiagnosed ctd. They are a little concerned as heart issues run in both sides of the family.mom to and JakeP.S. Also wanted to add that I received the eob from my insurance company for our geneticist appointment 2 weeks ago. They charged my insurance $661 for our 1 hour visit!!!!!! YIKES __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2006 Report Share Posted January 6, 2006 , How does the ophtalmologist rule out a CTD? What specifically tells them if there is one or not? Noelle (12-2-01)Ian (8-15-04) Re: cardiologist have you been to see an opthamologist, they almost definitively rule out CTD. I waited to have Madison's echo done until after her cast was removed and everything turned out to be fine. Also something to consider, Madison was 19 months when hers was performed and she wasn't sedated. It is what they prefer because it makes their jobs easier, but we requested to have it without sedation. I thought with so much sedation from cast changes, I wanted to eliminate it when not actually necessary. I just read to her and brought a portable DVD player with me so she could watch a movie while it was being performed. It acutually made the process go much faster and it worked for us. Something to consider.jviv314 <jviv314@...> wrote: Jake went to the cardiologist today to try to get an echocardiogram. They (geneticist and cardiologist) are trying to rule out Marfan Syndrome and/or vascular type of Ehlers-Danlos. Due to his cast and his age, they were unable to get a clear picture of his heart. They didn't even try because most of heart is covered with cast. They also said because he is 17 months he would need to be sedated to have a good echo done. My next step is to contact Shriners to see if it is possible to have it done there after he is sedated for his next cast. I'm sure Dr. Khoury is going to think we are a huge pain.Also because of his age, they usually don't do anything for an enlarged aorta unless it is extremely severe. Even if they see nothing abnormal on this echo, he will need one every 5 years to monitor the situation due to unconfirmed/undiagnosed ctd. They are a little concerned as heart issues run in both sides of the family.mom to and JakeP.S. Also wanted to add that I received the eob from my insurance company for our geneticist appointment 2 weeks ago. They charged my insurance $661 for our 1 hour visit!!!!!! YIKES DSL Something to write home about. Just $16.99/mo. or less Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2006 Report Share Posted January 6, 2006 they will perform a slit lamp eye exam is formed....it's not compl;etely conclusive and I should state what is said here is not to be substituted for good sound medical advice, everyone should go with what their docs say...just thought I would offer it up in case it wasn't mentioned, something to ask about Claflin <noellesmommy@...> wrote: , How does the ophtalmologist rule out a CTD? What specifically tells them if there is one or not? Noelle (12-2-01)Ian (8-15-04) Re: cardiologist have you been to see an opthamologist, they almost definitively rule out CTD. I waited to have Madison's echo done until after her cast was removed and everything turned out to be fine. Also something to consider, Madison was 19 months when hers was performed and she wasn't sedated. It is what they prefer because it makes their jobs easier, but we requested to have it without sedation. I thought with so much sedation from cast changes, I wanted to eliminate it when not actually necessary. I just read to her and brought a portable DVD player with me so she could watch a movie while it was being performed. It acutually made the process go much faster and it worked for us. Something to consider.jviv314 <jviv314@...> wrote: Jake went to the cardiologist today to try to get an echocardiogram. They (geneticist and cardiologist) are trying to rule out Marfan Syndrome and/or vascular type of Ehlers-Danlos. Due to his cast and his age, they were unable to get a clear picture of his heart. They didn't even try because most of heart is covered with cast. They also said because he is 17 months he would need to be sedated to have a good echo done. My next step is to contact Shriners to see if it is possible to have it done there after he is sedated for his next cast. I'm sure Dr. Khoury is going to think we are a huge pain.Also because of his age, they usually don't do anything for an enlarged aorta unless it is extremely severe. Even if they see nothing abnormal on this echo, he will need one every 5 years to monitor the situation due to unconfirmed/undiagnosed ctd. They are a little concerned as heart issues run in both sides of the family.mom to and JakeP.S. Also wanted to add that I received the eob from my insurance company for our geneticist appointment 2 weeks ago. They charged my insurance $661 for our 1 hour visit!!!!!! YIKES DSL Something to write home about. Just $16.99/mo. or less Photos Ring in the New Year with Photo Calendars. Add photos, events, holidays, whatever. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2006 Report Share Posted January 6, 2006 Can you email Dr. K and ask him about getting it done there? Do they even have that equipment in Erie? I hope you can work something out while you are up there. Noelle (12-2-01)Ian (8-15-04) cardiologist Jake went to the cardiologist today to try to get an echocardiogram. They (geneticist and cardiologist) are trying to rule out Marfan Syndrome and/or vascular type of Ehlers-Danlos. Due to his cast and his age, they were unable to get a clear picture of his heart. They didn't even try because most of heart is covered with cast. They also said because he is 17 months he would need to be sedated to have a good echo done. My next step is to contact Shriners to see if it is possible to have it done there after he is sedated for his next cast. I'm sure Dr. Khoury is going to think we are a huge pain.Also because of his age, they usually don't do anything for an enlarged aorta unless it is extremely severe. Even if they see nothing abnormal on this echo, he will need one every 5 years to monitor the situation due to unconfirmed/undiagnosed ctd. They are a little concerned as heart issues run in both sides of the family.mom to and JakeP.S. Also wanted to add that I received the eob from my insurance company for our geneticist appointment 2 weeks ago. They charged my insurance $661 for our 1 hour visit!!!!!! YIKES Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2006 Report Share Posted January 6, 2006 Do you know what they see on the retina when they perform the slit lamp exam that indicates CTD? Just curious because I was a teacher of the visually before I had my kids, so this kind of stuff fascinates me. I know a fantastic pediatric ophthalmologist here in Richmond, so after I see the geneticist that may be our next step. Noelle (12-2-01)Ian (8-15-04) Re: cardiologist have you been to see an opthamologist, they almost definitively rule out CTD. I waited to have Madison's echo done until after her cast was removed and everything turned out to be fine. Also something to consider, Madison was 19 months when hers was performed and she wasn't sedated. It is what they prefer because it makes their jobs easier, but we requested to have it without sedation. I thought with so much sedation from cast changes, I wanted to eliminate it when not actually necessary. I just read to her and brought a portable DVD player with me so she could watch a movie while it was being performed. It acutually made the process go much faster and it worked for us. Something to consider.jviv314 <jviv314@...> wrote: Jake went to the cardiologist today to try to get an echocardiogram. They (geneticist and cardiologist) are trying to rule out Marfan Syndrome and/or vascular type of Ehlers-Danlos. Due to his cast and his age, they were unable to get a clear picture of his heart. They didn't even try because most of heart is covered with cast. They also said because he is 17 months he would need to be sedated to have a good echo done. My next step is to contact Shriners to see if it is possible to have it done there after he is sedated for his next cast. I'm sure Dr. Khoury is going to think we are a huge pain.Also because of his age, they usually don't do anything for an enlarged aorta unless it is extremely severe. Even if they see nothing abnormal on this echo, he will need one every 5 years to monitor the situation due to unconfirmed/undiagnosed ctd. They are a little concerned as heart issues run in both sides of the family.mom to and JakeP.S. Also wanted to add that I received the eob from my insurance company for our geneticist appointment 2 weeks ago. They charged my insurance $661 for our 1 hour visit!!!!!! YIKES DSL Something to write home about. Just $16.99/mo. or less PhotosRing in the New Year with Photo Calendars. Add photos, events, holidays, whatever. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2006 Report Share Posted January 6, 2006 No, I am not sure about that....sorry Claflin <noellesmommy@...> wrote: Do you know what they see on the retina when they perform the slit lamp exam that indicates CTD? Just curious because I was a teacher of the visually before I had my kids, so this kind of stuff fascinates me. I know a fantastic pediatric ophthalmologist here in Richmond, so after I see the geneticist that may be our next step. Noelle (12-2-01)Ian (8-15-04) Re: cardiologist have you been to see an opthamologist, they almost definitively rule out CTD. I waited to have Madison's echo done until after her cast was removed and everything turned out to be fine. Also something to consider, Madison was 19 months when hers was performed and she wasn't sedated. It is what they prefer because it makes their jobs easier, but we requested to have it without sedation. I thought with so much sedation from cast changes, I wanted to eliminate it when not actually necessary. I just read to her and brought a portable DVD player with me so she could watch a movie while it was being performed. It acutually made the process go much faster and it worked for us. Something to consider.jviv314 <jviv314@...> wrote: Jake went to the cardiologist today to try to get an echocardiogram. They (geneticist and cardiologist) are trying to rule out Marfan Syndrome and/or vascular type of Ehlers-Danlos. Due to his cast and his age, they were unable to get a clear picture of his heart. They didn't even try because most of heart is covered with cast. They also said because he is 17 months he would need to be sedated to have a good echo done. My next step is to contact Shriners to see if it is possible to have it done there after he is sedated for his next cast. I'm sure Dr. Khoury is going to think we are a huge pain.Also because of his age, they usually don't do anything for an enlarged aorta unless it is extremely severe. Even if they see nothing abnormal on this echo, he will need one every 5 years to monitor the situation due to unconfirmed/undiagnosed ctd. They are a little concerned as heart issues run in both sides of the family.mom to and JakeP.S. Also wanted to add that I received the eob from my insurance company for our geneticist appointment 2 weeks ago. They charged my insurance $661 for our 1 hour visit!!!!!! YIKES DSL Something to write home about. Just $16.99/mo. or less PhotosRing in the New Year with Photo Calendars. Add photos, events, holidays, whatever. Photos Ring in the New Year with Photo Calendars. Add photos, events, holidays, whatever. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2006 Report Share Posted January 7, 2006 We have been to see the opthamologist, and he found nothing out of the ordinary. We were sent there for lazy eye, and doctor recommended yearly checkups. <jenstewart73@...> wrote: have you been to see an opthamologist, they almost definitively rule out CTD. I waited to have Madison's echo done until after her cast was removed and everything turned out to be fine. Also something to consider, Madison was 19 months when hers was performed and she wasn't sedated. It is what they prefer because it makes their jobs easier, but we requested to have it without sedation. I thought with so much sedation from cast changes, I wanted to eliminate it when not actually necessary. I just read to her and brought a portable DVD player with me so she could watch a movie while it was being performed. It acutually made the process go much faster and it worked for us. Something to consider.jviv314 <jviv314@...> wrote: Jake went to the cardiologist today to try to get an echocardiogram. They (geneticist and cardiologist) are trying to rule out Marfan Syndrome and/or vascular type of Ehlers-Danlos. Due to his cast and his age, they were unable to get a clear picture of his heart. They didn't even try because most of heart is covered with cast. They also said because he is 17 months he would need to be sedated to have a good echo done. My next step is to contact Shriners to see if it is possible to have it done there after he is sedated for his next cast. I'm sure Dr. Khoury is going to think we are a huge pain.Also because of his age, they usually don't do anything for an enlarged aorta unless it is extremely severe. Even if they see nothing abnormal on this echo, he will need one every 5 years to monitor the situation due to unconfirmed/undiagnosed ctd. They are a little concerned as heart issues run in both sides of the family.mom to and JakeP.S. Also wanted to add that I received the eob from my insurance company for our geneticist appointment 2 weeks ago. They charged my insurance $661 for our 1 hour visit!!!!!! YIKES DSL Something to write home about. Just $16.99/mo. or less Photos Got holiday prints? See all the ways to get quality prints in your hands ASAP. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2006 Report Share Posted January 7, 2006 Jake has signs and symptoms of ctd, and the geneticist wanted to rule out the vascular type and/or Marfan Syndrome. There is a history of heart problems in my family, and I myself have mitral valve prolapse. They (cardiologist and geneticist) want Jake checked out within the year. In response to checking his oxygen levels, we've only had that done one time when he was an infant with bronchiolitis (sp?) and it was fine then. Our cardiologist did say he'd prefer another cardiologist to do the echo, but thought we could do it while he was sedated for a cast as he didn't want to sedate him just for the echo. No, a radiologist won't get exactly what is needed but they will see a broad picture to determine if further testing should be done. Just when I think I've had enough, there's always something else to absorb. I'm hopeful that all will be normal, and they've made me frantic for nothing! Thanks for sharing your experience, mom to and Jakejennifer levie <jenniferlevie@...> wrote: Hi I was wondering what signs/ symptoms are they seeing that is suggesting a heart problem? Mason who is 21mths now has a congenital heart defect. Almost all of our docs say that is spinal deformities and heart defect...although both congenital, are unrelated. Only one doc says that it could be a defect of the midline...but not a syndrome. Sorry ...I'm not real good at keeping up with replies in the group but the cardiologist subject caught my eye. There are over 30,000 babies born a year with a CHD (congenital heart defect), just in the US. And over half of them go undiagnosed until its too late. Did the docs check Jakes oxygen levels? If theyre anythign below 95% that can be a sign of a defect. Dont they do general anesthesia for the casting at shriners or is it somethign else? When they sedate for ECHO's (since Mason has had a million of them) they just give an oral sedation to knock him out for about an hour or less. Some kids get real cranky before they fall asleep or a little irritable when they wake up. Mase usually will wake up after theyre done...drink some milk and then sleep for like 3hrs and wakes up fine. The med is called Chloral Hydrate that they give Mase. I would think thats what most docs use. Luckily when Mase was in his cast they were able to cut out a big enough belly window for the ECHO to be done. OH and another thing about the sedation...in order for them to get a really good read and look at everything they want to it can take a hour or longer for the ECHO to be completed. Whenever they do one on Mase unsedated...20mins tops and he's had enough of it and they never get to get a good look or even see everything they want too. The only thing I would suggest is to make sure you have a cardiologist do the ECHO rather then a radiolgist. You will get VERY DIFFERENT reads from one to the other. I got a little long winded. Sorry. It just worries me when i see heart problems. There is little awareness about heart defects/disease even in the medical community. Hope everythign is ok. take Care Jen and Mason - 21mths, scoliosis, kyphosis and hypoplastic left heart syndromejviv314 <jviv314@...> wrote: Jake went to the cardiologist today to try to get an echocardiogram. They (geneticist and cardiologist) are trying to rule out Marfan Syndrome and/or vascular type of Ehlers-Danlos. Due to his cast and his age, they were unable to get a clear picture of his heart. They didn't even try because most of heart is covered with cast. They also said because he is 17 months he would need to be sedated to have a good echo done. My next step is to contact Shriners to see if it is possible to have it done there after he is sedated for his next cast. I'm sure Dr. Khoury is going to think we are a huge pain.Also because of his age, they usually don't do anything for an enlarged aorta unless it is extremely severe. Even if they see nothing abnormal on this echo, he will need one every 5 years to monitor the situation due to unconfirmed/undiagnosed ctd. They are a little concerned as heart issues run in both sides of the family.mom to and JakeP.S. Also wanted to add that I received the eob from my insurance company for our geneticist appointment 2 weeks ago. They charged my insurance $661 for our 1 hour visit!!!!!! YIKES __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2006 Report Share Posted January 7, 2006 said she is not sure they have the means to do an echo, but she will check into it and let me know early next week. Claflin <noellesmommy@...> wrote: Can you email Dr. K and ask him about getting it done there? Do they even have that equipment in Erie? I hope you can work something out while you are up there. Noelle (12-2-01)Ian (8-15-04) cardiologist Jake went to the cardiologist today to try to get an echocardiogram. They (geneticist and cardiologist) are trying to rule out Marfan Syndrome and/or vascular type of Ehlers-Danlos. Due to his cast and his age, they were unable to get a clear picture of his heart. They didn't even try because most of heart is covered with cast. They also said because he is 17 months he would need to be sedated to have a good echo done. My next step is to contact Shriners to see if it is possible to have it done there after he is sedated for his next cast. I'm sure Dr. Khoury is going to think we are a huge pain.Also because of his age, they usually don't do anything for an enlarged aorta unless it is extremely severe. Even if they see nothing abnormal on this echo, he will need one every 5 years to monitor the situation due to unconfirmed/undiagnosed ctd. They are a little concerned as heart issues run in both sides of the family.mom to and JakeP.S. Also wanted to add that I received the eob from my insurance company for our geneticist appointment 2 weeks ago. They charged my insurance $661 for our 1 hour visit!!!!!! YIKES Photos Got holiday prints? See all the ways to get quality prints in your hands ASAP. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2006 Report Share Posted January 7, 2006 I will keep my fingers crossed and hope they can do it for you. Noelle (12-2-01)Ian (8-15-04) cardiologist Jake went to the cardiologist today to try to get an echocardiogram. They (geneticist and cardiologist) are trying to rule out Marfan Syndrome and/or vascular type of Ehlers-Danlos. Due to his cast and his age, they were unable to get a clear picture of his heart. They didn't even try because most of heart is covered with cast. They also said because he is 17 months he would need to be sedated to have a good echo done. My next step is to contact Shriners to see if it is possible to have it done there after he is sedated for his next cast. I'm sure Dr. Khoury is going to think we are a huge pain.Also because of his age, they usually don't do anything for an enlarged aorta unless it is extremely severe. Even if they see nothing abnormal on this echo, he will need one every 5 years to monitor the situation due to unconfirmed/undiagnosed ctd. They are a little concerned as heart issues run in both sides of the family.mom to and JakeP.S. Also wanted to add that I received the eob from my insurance company for our geneticist appointment 2 weeks ago. They charged my insurance $661 for our 1 hour visit!!!!!! YIKES PhotosGot holiday prints? See all the ways to get quality prints in your hands ASAP. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2006 Report Share Posted January 15, 2006 hi jennifer,i'm replying a bit late to this thread since i was away this past week. of course for lucas, i'm interested in knowing whether or not this can be done in erie, let me know, okay?desheaOn Jan 6, 2006, at 10:10 PM, Viveiros wrote: said she is not sure they have the means to do an echo, but she will check into it and let me know early next week. Claflin <noellesmommy@...> wrote:Can you email Dr. K and ask him about getting it done there? Do they even have that equipment in Erie? I hope you can work something out while you are up there. Noelle (12-2-01)Ian (8-15-04) cardiologistJake went to the cardiologist today to try to get an echocardiogram.  They (geneticist and cardiologist) are trying to rule out Marfan Syndrome and/or vascular type of Ehlers-Danlos. Due to his cast and his age, they were unable to get a clear picture of his heart. They didn't even try because most of heart is covered with cast. They also said because he is 17 months he would need to be sedated to have a good echo done. My next step is to contact Shriners to see if it is possi! ble to have it done there after he is sedated for his next cast. I'm sure Dr. Khoury is going to think we are a huge pain.Also because of his age, they usually don't do anything for an enlarged aorta unless it is extremely severe. Even if they see nothing abnormal on this echo, he will need one every 5 years to monitor the situation due to unconfirmed/undiagnosed ctd. They are a little concerned as heart issues run in both sides of the family.mom to and JakeP.S. Also wanted to add that I received the eob from my insurance company for our geneticist appointment 2 weeks ago. They charged my insurance $661 for our 1 hour visit!!!!!! YIKES PhotosGot holiday prints? See all the ways to get quality prints in your hands ASAP. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 Forgot to update everyone on the board on this issue! Erie does NOT have the means to do an echo at Shriners. did offer to make an appointment at a nearby hospital (Hamot I think she said) for the test and said that people she spoke with said children do not need to be sedated for an echo no matter what their age. But I am telling you all--Jake will NOT sit through one unless he is. Our pediatric cardiologist said it may take 30-45 minutes and the child needs to be relaxed. So no echo for Jake until later this year when (hopefully) he is in a brace. I mean I could have his cast cut off close to next cast change, have the echo, go few days without cast until new one. Doc says it is not imminent at this point, so we'll wait. Sorry to ramble. mom to and Jake"Deshea L. " <deshea@...> wrote: hi jennifer, i'm replying a bit late to this thread since i was away this past week. of course for lucas, i'm interested in knowing whether or not this can be done in erie, let me know, okay? deshea On Jan 6, 2006, at 10:10 PM, Viveiros wrote: said she is not sure they have the means to do an echo, but she will check into it and let me know early next week. Claflin <noellesmommy@...> wrote: Can you email Dr. K and ask him about getting it done there? Do they even have that equipment in Erie? I hope you can work something out while you are up there. Noelle (12-2-01)Ian (8-15-04) cardiologist Jake went to the cardiologist today to try to get an echocardiogram. They (geneticist and cardiologist) are trying to rule out Marfan Syndrome and/or vascular type of Ehlers-Danlos. Due to his cast and his age, they were unable to get a clear picture of his heart. They didn't even try because most of heart is covered with cast. They also said because he is 17 months he would need to be sedated to have a good echo done. My next step is to contact Shriners to see if it is possi! ble to have it done there after he is sedated for his next cast. I'm sure Dr. Khoury is going to think we are a huge pain.Also because of his age, they usually don't do anything for an enlarged aorta unless it is extremely severe. Even if they see nothing abnormal on this echo, he will need one every 5 years to monitor the situation due to unconfirmed/undiagnosed ctd. They are a little concerned as heart issues run in both sides of the family.mom to and JakeP.S. Also wanted to add that I received the eob from my insurance company for our geneticist appointment 2 weeks ago. They charged my insurance $661 for our 1 hour visit!!!!!! YIKES PhotosGot holiday prints? See all the ways to get quality prints in your hands ASAP. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 Bummer ! I hope you can get it done some time in the near future. Noelle (12-2-01)Ian (8-15-04) cardiologist Jake went to the cardiologist today to try to get an echocardiogram. They (geneticist and cardiologist) are trying to rule out Marfan Syndrome and/or vascular type of Ehlers-Danlos. Due to his cast and his age, they were unable to get a clear picture of his heart. They didn't even try because most of heart is covered with cast. They also said because he is 17 months he would need to be sedated to have a good echo done. My next step is to contact Shriners to see if it is possi! ble to have it done there after he is sedated for his next cast. I'm sure Dr. Khoury is going to think we are a huge pain.Also because of his age, they usually don't do anything for an enlarged aorta unless it is extremely severe. Even if they see nothing abnormal on this echo, he will need one every 5 years to monitor the situation due to unconfirmed/undiagnosed ctd. They are a little concerned as heart issues run in both sides of the family.mom to and JakeP.S. Also wanted to add that I received the eob from my insurance company for our geneticist appointment 2 weeks ago. They charged my insurance $661 for our 1 hour visit!!!!!! YIKES PhotosGot holiday prints? See all the ways to get quality prints in your hands ASAP. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 had an Echo and an EKG when she was about 1 1/2 years old and she was sedated. Being the weird mom I am, I did a scrapbook layout about the whole thing! Gail cardiologist Jake went to the cardiologist today to try to get an echocardiogram. They (geneticist and cardiologist) are trying to rule out Marfan Syndrome and/or vascular type of Ehlers-Danlos. Due to his cast and his age, they were unable to get a clear picture of his heart. They didn't even try because most of heart is covered with cast. They also said because he is 17 months he would need to be sedated to have a good echo done. My next step is to contact Shriners to see if it is possi! ble to have it done there after he is sedated for his next cast. I'm sure Dr. Khoury is going to think we are a huge pain.Also because of his age, they usually don't do anything for an enlarged aorta unless it is extremely severe. Even if they see nothing abnormal on this echo, he will need one every 5 years to monitor the situation due to unconfirmed/undiagnosed ctd. They are a little concerned as heart issues run in both sides of the family.mom to and JakeP.S. Also wanted to add that I received the eob from my insurance company for our geneticist appointment 2 weeks ago. They charged my insurance $661 for our 1 hour visit!!!!!! YIKES PhotosGot holiday prints? See all the ways to get quality prints in your hands ASAP. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2007 Report Share Posted September 14, 2007 Hi All, Does anyone have a suggestion of how I might find a cardiologist who can run an impedance cardiograph test? Thanks, Maixne ************************************** See what's new at http://www.aol.com Quote Link to comment Share on other sites More sharing options...
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