Quote:
Originally Posted by bekkielynn
Hi everyone,
My name is Becky and I have a 6 month old son named Trenton (along with 2 other kids). My son was 28 week old preemie and his brain began bleeding at 3 days of age when he was only 3 pounds. He has an external ventricular drain put in when he was 3 weeks old (EVD), but that was unsuccessful. NOw he has a VP shunt and we are experiencing what may be his first malfunction. I do not know ANYONE with children with shunts. I have no support from people who know about this, nor do I know any adults with one. I basically need friends who understand what we as a family are dealing with. I am in a constant state of fear for my son, always checking his soft spot etc. Currently he has some swelling and we will be seeing the neuro. in 2 days.....which seems absolutely a horrible amount of time to wait. Thanks for your support already and for welcoming me here. I hope to meet many of you!
-BECKY LYNN
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Hi Becky,
My name is Kate and I just turned 30. I have had a VP shunt since I was 3 months old, due to being a preemie and having a brain bleed that caused hydrocephalus. I have had about 6 revisions, the last one being when I was 12. I also have a vision condition called nystagmus that was caused by the brain bleed I had, which causes my eyes to twitch involuntarily.
I have never had any restrictions on activities, but if you play sports, you obviously need to be careful and aware of what is going on around you to avoid injury. I am able to drive a car, and have a job, I love upside down roller coasters, swimming, and all sorts of other things.
I remember when something would go wrong with my shunt, I would get a bad headache. I also had one infection that I remember, which was actually the last time I had my shunt revised 18 years ago. The infection manifested as abdominal pain, since it was draining down the tube. I never had a headache with it.
I currently experience what I call "fuzzy headedness" when there is a major weather change. I get normal stress and sinus headaches like most people, so if I get an unusually bad one, I know something may be up with my shunt.
More than likely, your son will outgrow a few shunts, since they make different sizes for growing children. The shunt will need to be revised when the tubing gets too short as he grows. I have had an adult size shunt since age 12, and thankfully have not had any problems since then. You will go through some revisions and tough times, but your son will be able to lead a normal life.
Take Care,
Kate