Arrested hydrocephalus

[Pumpkinpie11]

I'm just wondering if anyone else's child has this /has had it.
My DD was a 29 weeker and her ventricles & head were rapidly enlarging then stopped and everything seemed ok without the need for treatment.
I've now been told that at some point in the future it is likely she'll suffer from raised ICP again and so I'd just like to hear the experiences of others.
Thanks x

My daughter doesn't but she has PMG and lots of children with that also have hydrocephalus. I am at work so can't link to it but there is a UK support group on Facebook (it is private and you have to request to join) so would be worth you doing a search for that I think x

It would be great if you can add the link as Facebook is only giving me us groups .

DS4 has hydrocephalus. He is 12 months old. He has had a lumbar puncture where they drained off a lot of the excess fluid and we are waiting for a follow up appointment with the neurosurgeon to discuss him having a shunt.

DS2 has hydrocephalus caused by his premature birth. When he was discharged from SCUBU, the drs thought it had arrested but I had to measure his head and chart its growth. They checked this at all his follow-ups - his head grew steadily and (with hindsight for me) rapidly. We saw a neurosurgeon when he was 4 months corrected and he had a shunt put in at 5 months.

He has had no problems with the shunt (almost 5 now) and has progressed steadily. His physical development is behind where it should be, but always improving. This is due to low muscle tone.

He also has sensory problems but with the help of an OT, he is learning to cope with those. He starts school in September without any extra help. This is mainly due to all the brilliant advice I've had and read on this site.

Forewarned is forearmed. I watched DS2 like a hawk after researching hydrocephalus and I have kept ahead of any problems that have come up and got him help if needed. I trusted my gut - the ladies on the SN pages are great advocates for their children and I have learned a lot from them.

I hope your DD's hydrocephalus stays arrested, but the shunt was not the awful thing I envisioned when it was first suggested.