Its been a few months since Morgan's shunt setting for her lateral ventricles were increased to 120 (from 50)...we have been monitoring her and were supposed to watch for "increased tone" or other concerns. It seems very vague and with Morgan we never seem to know if her behavior and actions are related to her shunts or something else. I have suspicion her setting is too high now and are under draining but could be completely wrong so wanted to jot down my non-medical/motherly instinct before we take her in and find out differently :)
She hasn't slept through the night since her last appointment and this is our first concern. Her pediatrician suggested seeing a sleep specialist but we haven't started down this path yet and it clearly started happening right after the last ER visit. She wakes up crying usually 2 times per night. Usually around 11pm and then again between 1-3 am and typically she wakes up crying- sometimes inconsolable. We have implemented a sticker reward system a couple of weeks ago which has helped keep her in her room but it isn't stopping her from waking up so to me the question is what is waking her up- headaches, bad dreams?
Her teacher talked to me a couple months ago now and mentioned she was also concerned because she seems like she is unwilling and unable to do things she used to do with little assistance - using the bathroom, dressing etc. She also said about two weeks ago that her balance seems really off which we have also noticed at home and received two phone calls from her ECSE school nurse after she has fallen. Incontinence is also a concern and has always been to some degree but seems to be getting worse, not better, and some days having several accidents.
She did receive Botox injections for the first time last Wednesday (two shots in both legs) to see if we could reduce tone/cerebral palsy and toe walking in her right leg (we are questioning why they injected in her left leg also). On Wednesday afternoon she was very out of it but we are thinking likely related to the Nitrous she had during the procedure? Then on Friday we went to her regular OT/PT appointment in the morning and she was so out of it- just laying there and mostly unwilling to participate to the point where her PT suggested we do put a call into Neurosurgery just to rule out any issues.
Moved up her MRI/Neurosurgery follow up from Jan 19th to next Thurs, Dec 29th - hopefully all is well and unrelated but worth the check for peace of mind!
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.
