I know when I make these posts celebrating Violet’s Shunt Anniversaries some people may wonder why. To us it's such an important date, as it's a reminder of another year passing since her shunt was placed and another year passing she has not needed her shunt revised.
Hydrocephalus is such an awful condition, I have lots of people say to me ”well she has a shunt now, so she is fine” but this is not the case. While shunts are a treatment for hydro, it is by no means a cure. 7 out of 10 shunts placed will require subsequent operations within 10 years and some more frequently.
Over time shunts become blocked from the brains protein and debris passing through the shunt system, this can cause the shunt system/valve to malfunction. Then there is disconnection and shunt infection.
For myself and I would imagine other parents of Hydro kids, it's daily worry of when & where their child's next shunt malfunction will happen. Sometimes I wish I could be advised so I can at least prepare myself mentally and emotionally for that day.
I know we all worry about our children whether they are sick or not, but then throw in a few medical conditions and it feels more warranted to panic easily.
Hydro children can start to act out of character and appear to be sick with what you hope is just common illness symptoms. What doesn’t make it any easier is that shunt malfunctions have very similar symptoms of common illness. A person with shunted hydro can have something as simple as headaches, vomiting, irritability and sleepiness and most of the time ends up with a trip to ER just in case it is a shunt malfunction etc.
hi there i have been up all nite with katelyn she has been screaming and holding her head so i am calling the doctor this moring to see what he thinks she is only 16 months and was permayure at 1lb 4 oz she weighs 16lbs today