Sorry was gone due to emergency
Denise,
My deaughter has had heart problems since she was little and only until recently she woke up in the middle of the night crying because of really bad chest pains. I am a CNA so I grabbed my BP cuff and took her BP, it was through the roof. I listed to her heart and it was beating almost 200 beats per second. Come to find out, that sometimes girls experience arrythmia when they are getting ready to go through their first cycle. This definitely wasn't what Dad wanted to hear, but it is very common in girls between 10 and puberty. You may want to ask about this, it definitely was something new to me. Good luck and let's pray this flare up doesn't happen again.
Holly
Hi Holly 
Yes the thought is it might be puberty related. But she also has so many other issues that they had to rule those out as well.I am going to make this in as simple (non medical terms as possible.)
When Kelli was born, they had no idea what was wrong, and did not expect her to live 24 hours. She was in heart failure and she had a series of obvious physical problems.
In a nutshell: Kelli's circulatory systems did not develop correctly while I was preganant. Because of this, she had clumps of veins and arteries form around and in her spinal column. These are called Arterial venous Malformations, or AVM's. These AVM's caused her blood to circulate whacky..
AVM's are what cause an aneurysm and are mostly regulated to the brain.Most folks who have them, do not know they do, because they have do not have any clues until they have the aneurysm..
Because of the excess bood flow, it caused her left leg to be 3 times bigger than the norm. Her right leg was 3 inches shorter than the norm.
The left leg also has huge AVM's in them, as well as port wine stains all over it. Her larger limb condition is called Klipple Traunaury Webbers Syndrome.
We were blessed for several reasons.
1. She has the best pediatrician in the city- Dr. Runette Flowers
2. A team of neurosurgeons from all over the world were meeting in San Fransisco the week she was born
3. Her films were sent to this conference, and reviewed on an emergency basis.
4. It was felt that the best person to do the job was actually here at Emory who could help Kelli.
When she was 30 days old, she had surgery to do an embolization of the large AVM of the spine. This means they went in and blocked off as much of the excess veins as possible with the hopes of them dying. This would help the blood not pump as hard from the heart, as well as relieve the possibility of the vessals bursting. This was very risky with a high risk of paralysis as an end result.
Needless to say the outcome was successful. She has no paralysis. The stress to the heart is small.
Kelli has had several operations. Including a huge one in 2002 , and one in March of this year. I can not begin to tell you the team of folks she must see. However, I will say to you, that Dr. Todd knows Kelli's heart inside and out. I feel confident that, if there was a problem, she would know it. We do know she has an enlarged heart. However she is no longer in heart failure, and her heart was within a normal range. In 2002, we were released as her patient, and she was taken off all medications. That is why this took me aback and kind of shocked me.
What Dr. Todd did say to us, is that sometimes girls getting ready to go through puberty have this heart problem. I have a girlfriend who's daughter has similar physical defects as Kelli. They share the Klipple Trenaury Webbers and AVM issue. We spoke this morning and I learned something new.
Addie, not only has had the heart issues- but she also blacks out. My girlfriend is going to send me information on that syndrome , so I can read up on it.
In addition, Kelli still has 25% of the AVM wrapped around and in her spinal column. SInce they do not know anything about this (she is the first case) they can not predict her outcome. They do know that with adolecense (sp?), kids with AVMS in their brains suffer aneurysms- in other words they burst. We were told that there is a 95% probability that hers will rupture in her spine by age 14 or 15. If so, she will have some form if not complete paralysis.
Yes, it's alot to deal with, and yes, we have had a serious experience regarding Kel. However, please note these are folks that told us she would be dead within 24 hours.
For every obsticle we have been given, God has seen it through. Dr. Flowers does not take NO for an answer, and she has always steered us to the right Doctors, or resources. Craig and I both know that God is good and that is why we have the beautiful child that we do.
Brandon protects his big sister and we have the love and support of family and friends.
Anyway, this is an abbreviated summary of something I could write a book on. Just know when I am telling you, We have so many specialists involved, and so many studies that we fear when something like this pops up.
Thanks for your info- I appreciate it.
Denise
Yes the thought is it might be puberty related. But she also has so many other issues that they had to rule those out as well.I am going to make this in as simple (non medical terms as possible.)
When Kelli was born, they had no idea what was wrong, and did not expect her to live 24 hours. She was in heart failure and she had a series of obvious physical problems.
In a nutshell: Kelli's circulatory systems did not develop correctly while I was preganant. Because of this, she had clumps of veins and arteries form around and in her spinal column. These are called Arterial venous Malformations, or AVM's. These AVM's caused her blood to circulate whacky..
AVM's are what cause an aneurysm and are mostly regulated to the brain.Most folks who have them, do not know they do, because they have do not have any clues until they have the aneurysm..
Because of the excess bood flow, it caused her left leg to be 3 times bigger than the norm. Her right leg was 3 inches shorter than the norm.
The left leg also has huge AVM's in them, as well as port wine stains all over it. Her larger limb condition is called Klipple Traunaury Webbers Syndrome.
We were blessed for several reasons.
1. She has the best pediatrician in the city- Dr. Runette Flowers
2. A team of neurosurgeons from all over the world were meeting in San Fransisco the week she was born
3. Her films were sent to this conference, and reviewed on an emergency basis.
4. It was felt that the best person to do the job was actually here at Emory who could help Kelli.
When she was 30 days old, she had surgery to do an embolization of the large AVM of the spine. This means they went in and blocked off as much of the excess veins as possible with the hopes of them dying. This would help the blood not pump as hard from the heart, as well as relieve the possibility of the vessals bursting. This was very risky with a high risk of paralysis as an end result.
Needless to say the outcome was successful. She has no paralysis. The stress to the heart is small.
Kelli has had several operations. Including a huge one in 2002 , and one in March of this year. I can not begin to tell you the team of folks she must see. However, I will say to you, that Dr. Todd knows Kelli's heart inside and out. I feel confident that, if there was a problem, she would know it. We do know she has an enlarged heart. However she is no longer in heart failure, and her heart was within a normal range. In 2002, we were released as her patient, and she was taken off all medications. That is why this took me aback and kind of shocked me.
What Dr. Todd did say to us, is that sometimes girls getting ready to go through puberty have this heart problem. I have a girlfriend who's daughter has similar physical defects as Kelli. They share the Klipple Trenaury Webbers and AVM issue. We spoke this morning and I learned something new.
Addie, not only has had the heart issues- but she also blacks out. My girlfriend is going to send me information on that syndrome , so I can read up on it.
In addition, Kelli still has 25% of the AVM wrapped around and in her spinal column. SInce they do not know anything about this (she is the first case) they can not predict her outcome. They do know that with adolecense (sp?), kids with AVMS in their brains suffer aneurysms- in other words they burst. We were told that there is a 95% probability that hers will rupture in her spine by age 14 or 15. If so, she will have some form if not complete paralysis.
Yes, it's alot to deal with, and yes, we have had a serious experience regarding Kel. However, please note these are folks that told us she would be dead within 24 hours.
For every obsticle we have been given, God has seen it through. Dr. Flowers does not take NO for an answer, and she has always steered us to the right Doctors, or resources. Craig and I both know that God is good and that is why we have the beautiful child that we do.
Brandon protects his big sister and we have the love and support of family and friends.
Anyway, this is an abbreviated summary of something I could write a book on. Just know when I am telling you, We have so many specialists involved, and so many studies that we fear when something like this pops up.
Thanks for your info- I appreciate it.
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