anyone with experience of kid/s who have/had hydrocephalus ?

[charlie95]

if so i was generally wondering about their dveelopment ?

what it is ds born with brain tumour that blocked but also overproduced csf in his brain, this in turn being hydrocephalus. hes ok now, 4 yo.
saw his neurologist this wk for annual check up and as we described what hes doing etc etc she said that is exactly how/what children develop/behave having had hydrocephalus for eg hes got a good memory for numbers/counting, reciting alphabet, song rhymes, name age address phone number. but with the numbers and alphabet he hasnt got the understanding - which is what the neurologist means.

just wondered if anyone else has been told/come across similar actions from kids have/had the condition.

my daughter had hydrocephalus when she was born, she is nearly 13 now, didn't need a shunt as it arrested naturally just before the critical stage. She was developmentally delayed when she was younger, but has now caught up with all her peers, and you wouldn't know she had ever had any problems tbh

have you been in touch with asbah?

My Daughter also has Hydrocephalus. She is 3 and a half and had Meningitis at the age of 8months which resulted in various thing inc Hydrocephalus.

She has a VP shunt fitted and have had no probs,,,yet !!!

Has your son had to have it redone at all?

Ellie has now has global delay so can't really be of any help, sorry!!!

lou, whats asbah ?

anniebear - ds has never needed a shunt . it was a possibility at the time he was in hospital but having surgically excised the tumour cured both tumour and hydrocephalus.

and ds has since had general/global developmental delay. he does something new all the time, especially with talking but the main problem is education now. he's in obs class part time attached to mainstream but they recommend special school for sept and we're reluctant, not 100pc happy, and thankfully neurologist this wk thinks he better off either where he is or somewhere similar near to mainstream as he really needs to be mixing and learning as 'normal' as possible.
such a difficult time and decisions. meeting in school 2wks time.

asbah

lou and anniebear - have either of you had education problems with kids for starting school or whilst in school as regards to their dev. delays?

by the time dd1 started school she had pretty much caught up with her peers, so ahven't had any worries in that sense. In fact she won a scholarship to a private school when she was 7

Sorry charlie95, I was thinking that the other night, that you never mentioned about a shunt!!

Ellie is only 3 and a half and is going to a special school at the moment, She got a statement last year and the School has been fantastic, They are even funding a helper to go to her twin Sisters pre school one morning a week.

We are hoping she will go to Mainstream with a helper for a session a week and eventually build it up over a long period of time.

Cant se it myself though, I don't see her going to Mainstream,but every one else does!

hi Charlie95 - my dh's cousin had hydrocephalus and didn't have a shunt (thanks to wonderful cranial osteopath). she is now 12ish and has absolutely no delay, infact is very bright. Don't know what she was like when younger. I think they did do quite a lot of extra work with her but she definitely caught up.

When we got the results of DS1s MRI the only thing of note was that he had "slightly generous CSF spaces". Is this hydrocephalus? I asked the neurologist about this and to explain what it meant and he kind of batted it away as being unimportant. I have always been a bit worried and wondered what it meant though. Can anyone help?

Not sure pages. Hydrocephalus is due to a build up of csf in the ventricles. It's not clear from what you say if they were referring to the size of the ventricles or if there was a build up of fluid causing them to be enlarged, iyswim

Thanks Lou. I think it was the ventricles that were slightly more prominent, rather than extra fluid. His head has never been big by the way - on the small side if anything. By the way, I have been so encouraged by hearing about your daughter's amazing progress after such a difficult start in life - it gives me hope.