I was the same age as your son, when I had my first shunt put in.

The one thing you should be careful of is, your son hitting his head. Because that can cause a shunt failure. Then you will have to deal with the medical system stalling to get him the proper help.

My (ex)fiancee was physically abused as a child by her step-father having hit her head on numerous occasions, the whole time her own mother denying that the abuse was ever taking place. They even refused to let her go live with her father.

That was until she finally was able to leave the home.

When my (ex)fiancee n' I got engaged, she had told me about the physical abuse and her constant headaches. For seventeen years(1985-2002), after she left her parent's house, she had been told that she was just having migraine headaches. The first time she had a 'migraine' headache and, I took her to the hospital, the ER docs' just wanted to give her a quick pain med and send us on our way. I vehemently told them, that considering her abuse history and 'migraine' headaches, that she needed more than a 'quick fix' by the ER. I insisted that they do x-rays and CT-Scans of her head because there was something more than a 'migraine' going on.

She was even accused of lying. I demanded to see her x-rays. Normally, A hospital won't do that on such a quick demand. Being a Hydro patient myself and having seen countless scans of my own, when I saw her scans, I could see her Hydrocephalus as clear as the hand in front of my face. It was at that ER visit, that she was finally and properly diagnosed with Hydrocephalus.

We moved to Duluth(Minnesota) in Nov.'02 and, her first VP shunt was installed in Mar.'03.

She hit her head on 'black ice' in Dec.'05. For nine months I tried to get her in to see her neurologist to get the obvious problem fixed. Her neurologist and her neurosurgeon kept denying that her shunt was broken. I finally had enough and went to a neurosurgeon at a neighboring hospital. I told them the situation. At her first appointment, the CT-Scans and MRI scans were shown to the new neurosurgeon. The neurosurgeon was aghast at how the original neurosurgeon and neurologist could have missed the problem. Her VP was embedded in her brain tissue. She had a shunt revision within a month.

The point of my relating those two incidents is, that you will have to press the doctors hard sometimes, to get them to realize what the problem is.

The word 'normal', is subjective. What is 'normal' to one person, is not 'normal' to another person. With good healthcare and schooling, your son should be able to lead a 'normal' life.

I was born with an arachnoid cyst on my brain, they didn't find it until I was nine. I'm 29 now and I've had 99 shunt revisions since they first placed it. Despite how that my sound, I've been blessed being able to live a full life. I've worked full time since I was 13, played sports, I didn't even have trouble skydiving despite the Dr. telling me otherwise. Limitations vary from person to person, but I've known kids who have had just a few shunts placed, and they've lasted them their whole life. And they were able to live without the daily pain and discomfort.

They have made dramatic improvements on shunts in the last decade, which has given such better chances at a full life to kids/people. If your son has a medos valve/ programmable valve you have to be careful of magnets, because that's how the pressure changed on certain shunts without surgery.

FYI: There is a support group which is called S.T.A.R.S. that raises money for shunt research. It was started years ago in Detroit, they have event's and what not but more importantly other mothers & fathers who know exactly what your going thru.
I hope everything works out for you & I wish you and your son the best.
-Jesse

I know this is a very late reply as your son is approximately eight years old but your post touched me so here goes. I was diagnosed when i was 2 months younger than your son was at the time of your post. I had three shunts in my life with 2 being disconnected and revised all before the age of 7 years old and now I'm a 22 year old young woman so that has been 16 - 17 years without a revision. Everyone is different and you probably know now from him and his professional care team what he can do within both his abilities and possibilities. I can't offer you specific advice but my parents were "advised"/told I would be either dead, in a vegetative state or live with significant physical and intellectual impairments at the time of my diagnosis according to what they relayed to me about that time in our lives years later when I was old and wise enough to understand. Thanks to God I have defied 90% of the doctors' grim expectations of me everyday I'm alive. I can walk, talk, play non contact sports, have had paid part time jobs in the past, have an above average intelligence, have a very high emotional intelligence, completed my high school diploma and pursuing a career in medicine. I do have some limitations in my life such as no diving, no contact sports and being constantly aware of the warning signs of my body but I have a normal social life for a 22 year old young woman. I basically look at it as a blessing in disguise because it made me a self advocate at a much much younger age than my peers, more emotionally mature than my peers at a younger age, more compassionate and empathic for other people who have a disability such as myself and fortunate for living in Canada where high quality healthcare is available and can an activity I want to do be modified or accommodations be added for it to be accessible to me if not find something else. All I can advise you is continue to be a supportive parent, encourage your son's abilities and possibilities, teach him to self advocate and be humble and compassionate at a young age for others with challenges whether disability related or not and continue to reach out for support whether through his care team, family/friends, in person support groups or organizations and/or through this forum because I can certainly understand what hydrocphalus can do to someone. I hope that was helpful.