The Hydrocephalus Association hosts a national conference every other year and this year it happened to be in Minneapolis. I spent the last couple of days attending several conference sessions and it was so interesting to get updates on the research they are doing- a few interesting things I learned I figured this was the best place to jot down my notes:
- research being done around the presence of Lysophospholipids (LPH) in post hemorrhagic hydrocephalus and the TGF-β inhibitor- basically found if they inject the drug Decorin in rats reduces instance of hydrocephalus- study here: http://www.ncbi.nlm.nih.gov/pubmed/23983032
- listened to Neuropsychologist speaking about common issues they see in hydrocephalus patients and therapies. This was very interesting to me and some of the areas they tend to see delays in specifically around spatial visualization (doing puzzles, etc), processing & response times when you put them on the spot with a question for example. They also mentioned hydrocephalus children tend to have delays with memory & concept formation, language discourse (understanding sarcasm), math and reading comprehension (abstract questions about what they are reading). Sensitivity issues was also mentioned (Load noises and tastes) which we definitely see in Morgan. This is all helpful information to share with physical and occupational therapists so they know where to focus their therapies and recommends a neuropsych exam with all hydrocephalus children around the age of 5.
- interesting to watch ETV with CPC procedure and listen to a neurosurgeon thoroughly explain the risks and when they would or would not consider these procedures as an alternative to shunting. Risks included factors of individual brain anatomy- close to pituitary gland, proximity to basilar artery- 15% chance of ST memory loss, hypothalamus issue 11%. The success of this procedure is mostly found in ETVs of older patients without prior shunts or infants but not with post hemorrhagic (brain bleed) hydro- rate of success they are seeing in the US is 30%, in Africa was 47% but they do not have alternative therapies there.
Of course was also beneficial and most interesting to meet other hydrocephalus patients & families and network. We enjoyed a family dinner & talent show on Sat night with Morgan & her brother! Will definitely be checking out where the HA conference is headed in 2 years!
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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