Hydrocephalus questions — The Bump
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Hydrocephalus questions

Sorry, this might be long, but....

At 4 mos. I switched pediatricians and the dr. asked me if my son had always had a big head (which he had). It was in the 95th percentile and he mentioned hydrocephalus to me, but said we'd just watch for any dramatic changes and not to worry about it. I tried not to and was reassured at all subsequent visits when it stayed in that range. I was also reassured by the fact that my DS reached all developmental milestones even before he was supposed to.

Cut to 18 mos. old, my DS had a seizure lasting over an hour. They found nothing and ruled it febrile, but we met with a ped. neurologist and had an MRI and EEG to rule anything else out, since it lasted so long. We just had our appt on Monday and she said EEG was good, the brain looked well formed, no problems and that he had a thin layer of fluid called benign hydrocephalus which was not causing pressure on the brain and said that would not have caused a seizure. She said that's why his head was bigger and that between 18 and 24 months, their head circumference will plateau, so his head shouldn't be much bigger (he's now 20 mos w/ a head circumference of 20 in.).

I was surprised to even hear hydro and wasn't really prepared w/ questions, but I thought benign means good, right? Well, of course I had to google it and found all sorts of things that it does. Now I'm wondering if his head is going to stop growing and plateau in the next few months, will the fluid start putting pressure on his brain? Will he start having problems or can their bodies start absorbing it better as they get older? Once you have hydrocephalus, do you always?

I'm trying to reassure myself w/ the fact that the ped. neur. made it seem like my DS's case was not a big deal at all and I don't think she would have sugarcoated it and even now, he's ahead of the game developmentally, but I'm a mother who can't help but worry!

Re: Hydrocephalus questions

  • As far as I know there's no such thing as benign hydro so it is probably just descriptive. They could mean normal pressure hydro (which you can google). It is normally in old people and doesn't cause raised intracranial pressure. I have never heard of it in kids though.

    I had hydro as a baby and would recommend a neurosugeon consultation. They are the experts in hydro, not pediatricians who are basically just GPs for kids.

    JMO, there are kids with very small blockages who don't need a shunt but it is rare. And the damage that can be done is usually permanent so don't mess about with it. I have pemanent eye and brain damage from hydro caused in part by the neuro delaying my initial shunt by about a month and then delaying the follow up by 2 weeks. Small time lapses count.

    ?GL! And please page me if you have specific questions, or read my replies below about hydro to another mum.?

  • yes i am hydrocephalic and have been since 13 months old i have a shunt and i am fine i am 22 married work full time and working toward a family and questions i can try to answer please feel free email me [email protected]
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