So today, is a very special day to me... it is the first time we took our baby girl home... 3yrs. ago! We were petrified of what we were about to learn... we had no clue at this point, that Jilly would be here with us 3 yrs. later... I am so thankful for these past 3yrs. I have learned so much, met so many new friends, and learned how to be strong, thanks to my little hero: Jilliann Rose!
Today, I am thinking about what Noah's mom mentioned... how do we know what is stroke related or CHD related? I find my self, asking our Physical Therapist that question all the time! Jilly also has neuromuscular issues, believed to be congenital; causing her to have hypotonia (low muscle tone) otherwise known as a "floppy baby". The only dx. we have so far is periphreal neuropathy (meaning the nerves coming from her spine to her limbs-arms and legs). So you take a child with a bad heart/and bad nerves/who has had a stroke/ and has spent 1/3 of her life in a hospital, another 1/3 home recovering... that only leaves 1/3 of her life, to work on developing in all areas of life...
So, how do we know???
I think maybe, we can't know... we can guess, asume, and sometimes even hope that a certain symptom is related to a certain cause... because that would be the better choice!
We have been blessed on one issue of stroke.. the" tightness", because of Jilly's "looseness" she was born with... it counteracts the tightness that should of been on the Left side of her body, making that side more like normal. But, the two sides of her body, are not equal... the right side being floppy from low tone. I cannot imagine if the two sides of our body... were so different, and yet our STROKE kids seem to learn to compensate... even to the point where only us and their therapists know the difference! Then there is the heart issue... is the weakness, because of fatigue due to low heart function or poor oxygen levels?
I think that must ALWAYS play some part in any issue. Who does not feel weak, when they are not feeling well!!! Jilly is 2 months away from heart surgery, the Fontan... I hear from more experienced moms, that I will see a difference in strength and endurance... along with better color... so I guess I will soon see, how much the heart... is making a difference!
What do you think???
Showing posts with label CHD. Show all posts
Showing posts with label CHD. Show all posts
Monday, February 22, 2010
Sunday, February 21, 2010
Today is the first day of my new blog... I intend on learning more about blogging, I must admit, I do not have a clue what I am doing! I hope it will get better as I go, and am open for any suggestions from those who blog or know computers better than myself (that will not be hard to find)! It is very important to me, that there is a place for families to meet... who have experienced the journey, of the combination of :
CHD'S AND STROKES. I currently know, about 10 families, with these circumstances and have recently met some families, who know NO others... I believe we can learn from each other's experiences/journeys... and I hope that anyone interested, will join together! Thank you for visiting JILLY'S CHD/STROKE JOURNEY! Heart and Stroke Hugs!!!
CHD'S AND STROKES. I currently know, about 10 families, with these circumstances and have recently met some families, who know NO others... I believe we can learn from each other's experiences/journeys... and I hope that anyone interested, will join together! Thank you for visiting JILLY'S CHD/STROKE JOURNEY! Heart and Stroke Hugs!!!
Introduction:
Sadly, children with CHD'S (Congenital Heart Defects) are prone to many complications. One of those complications, is a STROKE.
I hope to find more up to date information on this subject.
HERE IS SOME INFORMATION I FOUND ON STROKES IN CARDIAC KIDS:
John Kylan Lynch, DO, MPH writes:
Cardiac disorders, identified in up to 50% of strokes in
case series, are the most common risk factor for stroke in
children . In the Canadian Pediatric Ischemic Stroke
Registry (CPISR) , cardiac disease was identified in 25%
of children with AIS. Cardiac disorders were the most common
risk factor among children hospitalized with AIS in
the United States from 1979 to 2000 (27% of all cases).
Several cardiac disorders are associated with stroke in children:
congenital heart disease, intracardiac defects, cardiac
procedures, and acquired heart disease. Cardiac disorders
can lead to the development of intracardiac thrombi that
may embolize to the brain or can lead to thrombosis in
cyanotic patients with anemia.
Congenital heart disease
(CHD) was the most common risk factor among children
hospitalized with stroke in California from 1991 to
2000. The incidence of CHD is one per 100 live births.
In the United States, early treatment and improved
surgical techniques for cardiac disorders have increased
survival rates and reduced cerebrovascular events: the
percentage of ischemic strokes due to cardiac disorders
decreased 76% among children hospitalized with ischemic
stroke between the years 1979 and 2000 [8].
http://en.wikipedia.org/wiki/Stroke
A stroke (sometimes called a cerebrovascular accident (CVA)) is the rapidly developing loss of brain function(s) due to disturbance in the blood supply to the brain, caused by a blocked or burst blood vessel. This can be due to ischemia (lack of glucose and oxygen supply) caused by thrombosis or embolism or due to a hemorrhage.[1] As a result, the affected area of the brain is unable to function, leading to inability to move one or more limbs on one side of the body, inability to understand or formulate speech, or inability to see one side of the visual field.[2]
http://pediatrics.aappublications.org/cgi/content/full/122/6/1292
ACCORDING TO THE OFFICIAL JOURNAL OF THE AMERICAN ACADEMY OF PEDIATRICS:
Published online December 1, 2008 PEDIATRICS Vol. 122 No. 6 December 2008, pp. 1292-1298 (doi:10.1542/peds.2007-1459)
ARTICLE
Frequency, Predictors, and Neurologic Outcomes of Vaso-occlusive Strokes Associated With Cardiac Surgery in Children
OBJECTIVE. Our aim was to define the frequency, predictors, and outcomes of stroke associated with cardiac surgery in children with congenital heart disease.
CONCLUSIONS. The frequency of vaso-occlusive stroke in children with congenital heart disease undergoing cardiac surgery was 5.4 cases per 1000 children. Age, duration of bypass, and reoperation may be associated with stroke risk.
The incidence rate of stroke after cardiac surgery among children with CHD was 5.4 cases per 1000 operations. Although this is likely an underestimate, it has important implications. Our study had insufficient power to identify predictors of stroke and potential preventative strategies. Ongoing research should continue toward improvements in intraoperative and postoperative management aimed at preventing neurologic morbidity.
Sadly, children with CHD'S (Congenital Heart Defects) are prone to many complications. One of those complications, is a STROKE.
I hope to find more up to date information on this subject.
HERE IS SOME INFORMATION I FOUND ON STROKES IN CARDIAC KIDS:
John Kylan Lynch, DO, MPH writes:
Cardiac disorders, identified in up to 50% of strokes in
case series, are the most common risk factor for stroke in
children . In the Canadian Pediatric Ischemic Stroke
Registry (CPISR) , cardiac disease was identified in 25%
of children with AIS. Cardiac disorders were the most common
risk factor among children hospitalized with AIS in
the United States from 1979 to 2000 (27% of all cases).
Several cardiac disorders are associated with stroke in children:
congenital heart disease, intracardiac defects, cardiac
procedures, and acquired heart disease. Cardiac disorders
can lead to the development of intracardiac thrombi that
may embolize to the brain or can lead to thrombosis in
cyanotic patients with anemia.
Congenital heart disease
(CHD) was the most common risk factor among children
hospitalized with stroke in California from 1991 to
2000. The incidence of CHD is one per 100 live births.
In the United States, early treatment and improved
surgical techniques for cardiac disorders have increased
survival rates and reduced cerebrovascular events: the
percentage of ischemic strokes due to cardiac disorders
decreased 76% among children hospitalized with ischemic
stroke between the years 1979 and 2000 [8].
http://en.wikipedia.org/wiki/Stroke
A stroke (sometimes called a cerebrovascular accident (CVA)) is the rapidly developing loss of brain function(s) due to disturbance in the blood supply to the brain, caused by a blocked or burst blood vessel. This can be due to ischemia (lack of glucose and oxygen supply) caused by thrombosis or embolism or due to a hemorrhage.[1] As a result, the affected area of the brain is unable to function, leading to inability to move one or more limbs on one side of the body, inability to understand or formulate speech, or inability to see one side of the visual field.[2]
http://pediatrics.aappublications.org/cgi/content/full/122/6/1292
ACCORDING TO THE OFFICIAL JOURNAL OF THE AMERICAN ACADEMY OF PEDIATRICS:
Published online December 1, 2008 PEDIATRICS Vol. 122 No. 6 December 2008, pp. 1292-1298 (doi:10.1542/peds.2007-1459)
ARTICLE
Frequency, Predictors, and Neurologic Outcomes of Vaso-occlusive Strokes Associated With Cardiac Surgery in Children
OBJECTIVE. Our aim was to define the frequency, predictors, and outcomes of stroke associated with cardiac surgery in children with congenital heart disease.
CONCLUSIONS. The frequency of vaso-occlusive stroke in children with congenital heart disease undergoing cardiac surgery was 5.4 cases per 1000 children. Age, duration of bypass, and reoperation may be associated with stroke risk.
The incidence rate of stroke after cardiac surgery among children with CHD was 5.4 cases per 1000 operations. Although this is likely an underestimate, it has important implications. Our study had insufficient power to identify predictors of stroke and potential preventative strategies. Ongoing research should continue toward improvements in intraoperative and postoperative management aimed at preventing neurologic morbidity.
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