Anyone with experience of hydrocephalus?

[MacNcheese87]

Maybe a long shot, maybe not?

My son is 7 and has had a shunt since he was 6 months old. He had a brain haemorrhage around birth (although he wasn't premature- just one of those unlucky things) and everything has been ticking over fine since.

He has developmental delay, and suffered a horrible seizure a few years ago, which he takes meds for now.

Recently he has been having a lot of headaches and vomiting in the mornings. CT scans are clear, so I just wondered if there were any other parents of shunted children here, or even parents themselves with hydrocephalus?

My sister has a shunt for the same reason.

I'm not sure about scans but she's been having fainting fits, dizziness etc and she was admitted for a procedure to measure pressure, a probe was placed in her skull. This showed pressure and her shunt was eventually replaced, after a failed operation to hopefully remove the need for one.

Her shunt lasted 21 years!

Her shunt was placed days after birth, she was prem

Days... months actually. I was a child at the time, but thinking about it it must have been longer

Wow 21 years! We have only had scans so we don't know anything about the different procedures so it's good to know your sister has had one I haven't seen before. Gives me hope that when we see the neurosurgeon next, they will have the possibility of more to go on rather than just the scan itself.

I hope your sister is doing fine now. Thanks for sharing with me.

No one could believe it... care had somehow trailed off.

A heads up was that it seriously affected her behaviour (incorrectly a mental health diagnosis was first given, before we advocated). That was way before the dizziness, but only obvious retrospectively.

Since the shunt she's living very independently. She has learning difficulties and is deaf/ no central vision. Hopefully in modern terms treatment was better for your son, her skull was very out of shape and large until mid primary school.

The operation to replace btw was nowhere as different as was suggested btw. She was put off for some time on the basis of it being not pleasant, but she was no worse than for other procedures and had the benefit of a resolution to lift her mood.

DS2 was premature and had brain bleeds which caused hydrocephalus. His shunt was put in at 6 months too.

He has some sensory problems and some problems with reading and writing but otherwise fine. He's 7.

We had a similar thing with him over the summer. He has regular eye check ups suggested by neurosurgeon because eye doctor can see first signs of pressure on the brain on the optic nerve. He saw some blurring and DS2 was having headaches especially in the morning so this earned him ct scans and X-rays. Everything looked fine with the shunt so nothing needed to happen and the symptoms went away.

Shunts seem to be a bit of mystery once they're in. When they work, they work and when they don't, you'll know about it. Very hard when it's your child though

I have a fc who had a shunt fitted at birth. He was born with a huge head. He has been here since v little and is 10 now. He has severe developmental delay and uses a wheelchair. He has needed his shunt changed several times and we nearly lost him on 2 very scary occasions.
Always take vomiting and headaches extremely seriously as they can deteriorate v quickly. Our childs consultant told me that it is impossible to overreact when you have a shunt because shunt blockages are life threatening events as i am sure you know.
Having said that our lad is doing really well and has been stable a good while. I dont dwell on the what ifs but try to give him the best life possible. He is such a happy child and has given us so much joy(along with a few terrifying times) and we wouldnt change him for the world