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intracranial pressure monitoring

(4 Posts)
elliejjtiny Thu 10-Dec-15 13:11:25

Anyone's child had it done? My 2 year old's neurosurgeon is considering it for next spring, he'll be nearly 3 by then. He hates hospitals, especially people in uniforms and doesn't like staying still either. Google has told me these things are usually done in intensive care (lip wobbling emoticon). I'm worried about the practical side too. As well as my 2 year old I've got a very clingy 1 year old who is still breastfeeding and 3 older children aged 9, 7 and 4 (will be 9, 8 and 5 by then) who need to be taken to and from school. Hospital is 90 min drive away from home and school. DH works from home thank goodness and inlaws might help (but might not, and will probably moan about it either way). I don't know how we're going to do this without at least the younger 2 being totally traumatised. Hospital website says no siblings allowed to stay overnight, otherwise I would take the 1 year old with me (although we did this when my younger 2 were 14 months and 2 months when DS4 had an operation and it was a nightmare).

summerdreams Thu 10-Dec-15 16:30:13

I do not have a child who as had this done by but ive had this done myself a few times im not sure how it works for children I was not in intensive care. Type into google icp monitoring gosh and it explains what happens in great ormand street if a child is having it done there im sorry I cant put a link up but dont know how to do it on my phone. I just had a quick read and it says the child would be in a ward unless allready in icu. I have no advise for anything else but I really hope it goes well and to let you know it wasn't atall painfull when I had it done good luck flowers

elliejjtiny Fri 11-Dec-15 01:16:55

Thankyou so much. Good to hear from someone who has done it and the website was really helpful too. It seems that a lot of people have this done after a major head injury. My son will be having it done to monitor his hydrocephalus which makes things different. I'm glad it wasn't painful for you. How much could you move around while attached to the monitor? I'm wishing they could have done this 18 months or even a year ago as he was much better at staying still then.

summerdreams Sat 12-Dec-15 16:24:31

I have idiopathic intercranial hypertension and have a shunt and stent. I could unplug it for 15 minutes and walk around. It is quite unpleasent to look at as you have a bolt and wire hanging out of your head but im sure I read somewhere when looking up information before I had it done the first time that when a child has it they can still play and do normal things so maybe its attached to a portable devise.
Im sorry your son is going through this ive spent a lot of time in national neurology hospital having opefations over the last year ive met so many amazing adults with hydrocephalus with familys and jobs living relatively normal lifes. I really hope it goes well for you little I can only imagine how scary this must be

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