Hydrocephalus Support Group

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Hydrocephalus and what to expect for the future

Hi everyone,
I just joined and am looking to hear from people who have or have children with Hydrocephalus. My 7 month old son has it and its just scary to us. We find ourselves wondering what his future will be like and what kind of restrictions he may have. We try to be positive even with being told about the high numbers of shunt malfunctions and infection rates. Would anyone like to share their story or offer any advice, etc.? I think this will just be a good way to reach out in to the Hydrocephalus community and know that there IS support out there.



You do not need to put any restrictions on your son. Let him do anything that you would let any other child do. Let him play sports, be active and be a messy kid. If it turns out that he is a klutz you can get him some help.

I was diagnosed at 6 weeks old. I have had 13 surgeries thoughout my life, the most recent was 11 months ago. I am also a 35 year-old college graduate. I never had any special academic help growing up. I did not need it. The one thing that would have helped me if it was common when I was a young child was occupational therapy. I was always the kid who was off step in the dance recitals. Also, when I was learning how to swim I swam crocked because my left side is stronger then my right.

Don't be freaked out by the fact that I have had 13 surgeries. The medical technology has improved greatly since I was a kid. If today's medical technology existed when I was sick in 1990, I would not have had as many surgiers.

I actually had my shunt placement at 7 months old. I'm 16 and just had my shunt changed not even a month ago. I never had to have my shunt revised or replaced until now. My neurologist recommended an upgrade. I only had problems because my old shunt was over pumping and my body was no longer producing enough spinal fluid. It caused me to develop slit ventricle syndrome. Meaning the ventricles on the right side of my brain collapsed. I had to have my surgery because my ventricles had been collapsed for so long, they were no longer elastic. Fluid was building up.

I was predicted to be mentally challenged, paralyzed and blind. I am none of those things. I'm very advanced at school. I'm in all college prep classes in 11th grade. I do need glasses but I am in no way blind. My body functions fine.

I had hydrocephalus since birth. I had an enlarged head but the doctors said I was normal. My mother took me to a special program and they knew something was wrong. So at 7 months I was diagnosed with a rare form of hydrocephalus. Most people have a hereditary kind. That kind has a brain tumor blocking the passage for water flow. My passage way was never formed. The surgeon had to make an opening in my skull and put my shunt down through my ventricle.

My slit ventricle syndrome developed about a year ago. I have severe headaches because of it. You are lucky your son was diagnosed so early. Make sure you take him to get it checked regularly. My parents didn't have my shunt checked for 5 years and now this has happened. If this new shunt does not help me or take the headaches away, my neurologist has been talking to me about having a surgery where he would take chunks of my skull out on each side of my head to relieve pressure from my brain.

Your son will be fine I'm sure. I wish the best of luck to you and your family. (: Just keep working forward! Hope you find an amazing nuerologist.
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