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.

Search This Blog

Tuesday, July 3, 2018

Neurosurgery follow up

Long awaited Neurosurgery follow up appointment today.  We spoke with Dr Petronio at length regarding some of the behavior we have been seeing, her scans, symptoms (headaches, lethargy, vomiting), etc.  I had a lot of questions after attending the Hydrocephalus Association convention last week! 
Her ventricles look fine, slightly smaller 4th ventricle but nothing to be concerned about and her laterals about the same (her shunt was set 20 higher since January so was wondering if that impacted but doesn't appear to have).  He did explain though that sometimes there will be situations with shunt malfunction that they may not see on scans - I was aware but surprised that apparently this is pretty common.  Scans can show the volume of fluid in her ventricles but do not give indication of pressure.  One option if she continues to have issues is to bring her into short stay and have them tap her shunts so that they can measure the pressure.  We will decide if this is something we want/need to do but of course with this comes some risk of infection so would like to hold off unless absolutely necessary. 
He had read her charts from the rehab doctor and spoke about some other behavior which makes him concerned that she could potentially be having seizures (not the first time we have heard).  He would like us to revisit this and referred us to the MN Epilepsy Group to schedule another EEG (she has had one but several years ago now).  So we are going to start with this and hope/pray this is just something to rule out!
Other potential causes may just be intermittent shunt blockage (constipation can even cause this) or migraine headaches.
He also offered to refer us back to a different Gillette's rehab specialist and assessed her right leg/ankle after the botox injections which he agrees is not the best we can get - mentioned to ask about potentially serial casting since her orthotics don't seem to be helping as much as we would like to prevent toe walking and inflexibility of her ankle.

No comments:

Post a Comment