Hello All, I created this blog to share photos of our beautiful son Nicholas with family and friends. This is my first blog so let's see how it goes. Nicholas is 12 weeks and 1 day old today. He is such a joy!
This blog is also for parents and others looking for information on Dandy-Walker Syndrome. Nicholas was diagnosed with this genetic disorder in utero. I spent many days and nights on the internet reading everything I could find on the disorder. The personal blogs I read from other mothers really helped me. I only hope we can be of help to someone else. There is hope!
Thank you family and friends for your love, support and prayers. You will never know how much you mean to me.
This blog is also for parents and others looking for information on Dandy-Walker Syndrome. Nicholas was diagnosed with this genetic disorder in utero. I spent many days and nights on the internet reading everything I could find on the disorder. The personal blogs I read from other mothers really helped me. I only hope we can be of help to someone else. There is hope!
Thank you family and friends for your love, support and prayers. You will never know how much you mean to me.
Nicholas is doing great! All of his doctors are watching him and so far so good. We are so very blessed.
I know these are old photos but I had to start with something. I will be posting new pics every week! :)
With Love,
Barbara
With Love,
Barbara
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Dandy-Walker Syndrome:
Dandy-Walker syndrome is a congenital brain malformation involving the cerebellum, the part of the brain that controls movement and the fluid filled spaces around it. The main conditions of the syndrome are an enlargement of the fourth ventricle (a small channel that allows fluid to flow freely between upper and lower areas of the brain and spinal cord), a partial or complete absence of the cerebellar vermis (the area between the two cerebellar hemispheres) and cyst formation near the internal base of the skull, called arachnoid cysts. These cysts may develop between the surface of the brain and the cranial base. Small cysts are usually asymptomatic while larger cysts may cause cranial deformations, headaches, seizures, hydrocephalus and increased intracranial pressure.
Treatment for these cysts is symptomatic. When pressure gets to be too much, a surgical placement of a shunt may be required. Untreated, these cysts may cause permanent neurological damage due to progressive expansion of the cyst or bleeding. But with treatment most pediatric patients do well.
An increase in the size of the fluid spaces surrounding the brain and an increase in pressure can also occur, called hydrocephalus, a condition that causes an enlargement of the ventricles of the brain because of buildup of cerebrospinal fluid, which can lead to increased intracranial pressure. This can be caused by the spinal fluid not being properly absorbed or by some kind of blockage to the flow of the fluid. Ultrasound and MRI are the modalities of choice to check for this abnormality. Treatment entails putting in a shunt to drain some of the excess fluid. This syndrome, much like agenesis of the callosum, can appear dramatically or develop unnoticed. Symptoms that often occur in early infancy include slow motor development and progressive enlargement of the skull.
In older children, symptoms of increased intracranial pressure, such as irritability, vomiting and convulsions, and signs of cerebellar dysfunction like unsteadiness, lack of muscle coordination or jerky movements of the eyes, may occur, as well as other symptoms like increased head circumference, bulging of the back of the skull and problems with nerves that control the eyes, face and neck. Dandy-Walker is commonly associated with agenesis of the corpus callosum. Treatment for this syndrome includes placing a tube to reduce intracranial pressure and control swelling.
Children with this syndrome may never have normal intellectual development, even when the hydrocephalus is treated early and correctly. A long life depends on the severity of the syndrome and associated malformations. The presence of multiple congenital defects may shorten the life span.
Dandy-Walker syndrome is a congenital brain malformation involving the cerebellum, the part of the brain that controls movement and the fluid filled spaces around it. The main conditions of the syndrome are an enlargement of the fourth ventricle (a small channel that allows fluid to flow freely between upper and lower areas of the brain and spinal cord), a partial or complete absence of the cerebellar vermis (the area between the two cerebellar hemispheres) and cyst formation near the internal base of the skull, called arachnoid cysts. These cysts may develop between the surface of the brain and the cranial base. Small cysts are usually asymptomatic while larger cysts may cause cranial deformations, headaches, seizures, hydrocephalus and increased intracranial pressure.
Treatment for these cysts is symptomatic. When pressure gets to be too much, a surgical placement of a shunt may be required. Untreated, these cysts may cause permanent neurological damage due to progressive expansion of the cyst or bleeding. But with treatment most pediatric patients do well.
An increase in the size of the fluid spaces surrounding the brain and an increase in pressure can also occur, called hydrocephalus, a condition that causes an enlargement of the ventricles of the brain because of buildup of cerebrospinal fluid, which can lead to increased intracranial pressure. This can be caused by the spinal fluid not being properly absorbed or by some kind of blockage to the flow of the fluid. Ultrasound and MRI are the modalities of choice to check for this abnormality. Treatment entails putting in a shunt to drain some of the excess fluid. This syndrome, much like agenesis of the callosum, can appear dramatically or develop unnoticed. Symptoms that often occur in early infancy include slow motor development and progressive enlargement of the skull.
In older children, symptoms of increased intracranial pressure, such as irritability, vomiting and convulsions, and signs of cerebellar dysfunction like unsteadiness, lack of muscle coordination or jerky movements of the eyes, may occur, as well as other symptoms like increased head circumference, bulging of the back of the skull and problems with nerves that control the eyes, face and neck. Dandy-Walker is commonly associated with agenesis of the corpus callosum. Treatment for this syndrome includes placing a tube to reduce intracranial pressure and control swelling.
Children with this syndrome may never have normal intellectual development, even when the hydrocephalus is treated early and correctly. A long life depends on the severity of the syndrome and associated malformations. The presence of multiple congenital defects may shorten the life span.
4 comments:
Thanks for creating this blog! It will be great to keep up with you and Nicholas this way. See you soon! Sarah
Barbara, you are a wonderful, brave woman. I love you for your courage and unselfishness. You and Nicholas have inspired me to continue to look for the positive things in life and to build around those good things. This blog will inspire others to be as strong. You are a special person Barbara not only are you blessed to have baby Nicholas but baby Nicholas is very blessed to have you as his mommy! With love in my heart, Kimberly Sharp
Thanks for creating this blog. My baby Mason was diagnosed in utero as having Dandy Walker Variant. He is now 3.5 weeks old and is doing very well. An ultrasound of his brain at birth show no effect of the cyst at this point, therefore no shunt is needed. Follow up scans will be done and an MRI is scheduled at 3 months old. Only time will tell if there is any effect from the cyst. All the best to Nicholas and your family.
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