This morning we checked in at MN Epilepsy Group bright and early for Morgan's scheduled EEG (see updated pic). The process to get all set up - measuring, marking her head and getting all of the electrodes in place was probably more time consuming than the actual procedure. They had her hooked up for a little over an hour, put some sort of strobe/flashing lights in front of her for a bit but mostly wanted her to lay still and close her eyes. Haha good luck with a 5 year old- she was not so cooperative laying still or closing her eyes but we got through it. The fun comes when you get to try to wash out all of the glue afterward :)
We met with the Neurologist immediately following and spoke for a long time about some of the symptoms we have seen over the past few months (headaches, vomiting, unable to wake, seizure like eye flickering and sudden inability to stand or walk on her right leg, etc.- see past posts). They did observe abnormal activity in her Parietal lobe (area of the brain that processes information about temperature, taste, touch and movement) but ultimately the results were inconclusive. Not comfortable doing nothing at this point but also not comfortable saying for certain she is experiencing seizures. So, next step unfortunately is to admit her to Children's Hospital for longer term EEG monitoring- specifically they want to monitor overnight and depending on what they see after the first day or so, they would potentially monitor the second night with sleep deprivation..sounds like a blast :(
They only admit Mon-Thurs and with Morgan starting kindergarten in just a few weeks we decided to hold off on scheduling this until MEA break (Oct 18th)...stay tuned.
Meanwhile we will hopefully get to take a break from appointments other than regular weekly OT/PT and enjoy the last few weeks of summer! The plan is to let Morgan get settled into her Kindergarten routine and then have a busy fall with 4 weeks of serial casting starting end of Sept, EEG admission Oct 18 and Gait analysis appointments in Oct & Dec.
My Journey with hydrocephalus and Cerebral Palsy
Morgan Grace was born 3 1/2 months early on Aug, 21, 2012 weighing just 1 lb 7 oz and 13 inches long. Morgan was hospitalized at Children's Hospital NICU in Minneapolis, MN for 108 long days. During this time she encountered many medical challenges common to "micro preemies" but most devastating was to hear she had suffered from grade III/IV Intraventricular hemorrhage (IVH / brain bleed). We were told she may never walk or talk and they would not be able to tell the severity of the damage until she is older. The IVH resulted in Hydrocephalus, a condition she will have for life. At two, Morgan was also diagnosed with Cerebral Palsy.
I have found it very difficult to find information online - stories and information on hydrocephalus, shunts and people's experiences - so decided to write this blog to share what we have been through. I hope some day that Morgan can take over writing from her perspective. More importantly I hope maybe it can shed some light for other hydrocephalus and Cerebral Palsy patients and families. We welcome comments and questions.
From Wikipedia, the free encyclopedia:
Hydrocephalus is also known as "water on the brain", is a medical condition in which there is an abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain. This may cause increased intracranial pressure inside the skull and progressive enlargement of the head, convulsion, tunnel vision, and mental disability. Hydrocephalus can also cause death. It is more common in infants, although it can occur in older adults.
The cause of Cerebral Palsy is a brain injury that occurs while the brain is developing. As a result of the brain damage during brain development a child's muscle control, muscle coordination, muscle tone, reflex, posture and balance can be affected.
I have found it very difficult to find information online - stories and information on hydrocephalus, shunts and people's experiences - so decided to write this blog to share what we have been through. I hope some day that Morgan can take over writing from her perspective. More importantly I hope maybe it can shed some light for other hydrocephalus and Cerebral Palsy patients and families. We welcome comments and questions.
From Wikipedia, the free encyclopedia:
Hydrocephalus is also known as "water on the brain", is a medical condition in which there is an abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain. This may cause increased intracranial pressure inside the skull and progressive enlargement of the head, convulsion, tunnel vision, and mental disability. Hydrocephalus can also cause death. It is more common in infants, although it can occur in older adults.
The cause of Cerebral Palsy is a brain injury that occurs while the brain is developing. As a result of the brain damage during brain development a child's muscle control, muscle coordination, muscle tone, reflex, posture and balance can be affected.
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