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Original poster

shunts (fluid on the brain??)

23 replies

clewin · 25/10/2006 21:58

my ds has today had a ct scan due to measurements on his head being larger than normal. it showed that he has fluid on his brain and needs more scans and an op to drain it all away. he had group b strep when he was 11 days old so they dont no if this has caused it. they have left us with an option of getting s shunt to drain away the fluid or a fairly new op were they open up the valves in the brain...has anyone had a similar experience? please give me any advice/your story as i am so worried on what to do

OP posts:
zippitippitoes · 26/10/2006 13:45

just bumping this for you in case anyone has any experience, which i don't I'm afraid.

Hope someone sees it who can help

tissy · 26/10/2006 13:52

I have a colleague whose premature son had to have a shunt following a brain haemorrhage(don't know if they were given the option of another op). Don't know any details, but as far as my colleague was concerned, it was a fairly minor operation, and his baby, now 6 months old, is fine!

Original poster
clewin · 26/10/2006 15:37

thanks for your messages, it helps to hear stories of similar experiences

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liquidclocks · 26/10/2006 15:59

I'm sorry I've no experience of a shunt being done in babies so small but where I've heard of it being done for adults it's generally a successful procedure and it's not major as in they won't be opening him up or anything.

  • must be hard to have to cope with such worry for your DS. I had strep b when pg and but thankfully they found out and carefully monitored DS2 after he was born. Hope someone comes along who's of more help.
franca70 · 26/10/2006 16:26

bump for you
and hugs

Original poster
clewin · 26/10/2006 21:27

thanks. my ds goes in on monday for his scans and hopefully the op too. he's my first and i know that shouldnt matter but you just think that everything will be fine but he has suffered so much already with the meningitis now this. i just want him well again and i know the hospital will make sure he gets better I'm just so scared

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zippitippitoes · 27/10/2006 08:00

what a difficult to start, I do hope it goes well for you

hugs to you xxx

CristinaTheAstonishing · 27/10/2006 08:06

How old is your DS? I know of a little girl who was born with small hydrocephalus, detected at a few weeks old. She had the shunt done and now at 1.5 she's absolutely fine and thriving.

zippitippitoes · 30/10/2006 07:28

I hope he is feeling well and all goes well for you today clewin

xxx

anniebear · 30/10/2006 08:07

My DD has a shunt

But it was due to Meningitis at aged 8 months

she had Burr holes done first that didn't work so she ahd to have a shunt put in

she has special needs but that is from the damage caused by the Meningitis

she has had no problems with her shunt so far (is now 5)

feel free to read her story

mysite.wanadoo-members.co.uk/EllieOurSpecialGirl

zippitippitoes · 31/10/2006 09:03

I hope everything went all right yesterday, thinking of you.

xx

Original poster
clewin · 06/11/2006 21:21

my baby had his shunt last week so far he is ok, still sore. we came home today, worried about it blocking and getting infected. i will have to get used to it though as its part of him for life now.. just cant believe all he's been through

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Original poster
clewin · 06/11/2006 21:27

annie bear. my sons hydrocephalus is also down to meningitis (strep b) which he had at 11 days old. He as now had his shunt fitted (on fri 03/11/06). so far he seems fine but is stil in some pain. it was so hard seeing him in pain after the op, but thankfully he is getting better. We have a ct scan in 2 weeks to make sure everything is working as it should

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sunnysideup · 06/11/2006 22:09

sending huge hugs to you and your boy, well done for getting through it, it must have been so scary. I hope that you all get some time just to enjoy eachother now, without worries xx

Original poster
clewin · 06/11/2006 22:20

thanks i hope so too

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franca70 · 06/11/2006 22:36

Hugs from me too

anniebear · 07/11/2006 07:13

sorry to hear he has had Meningitis. It is so horrible isn't it

Glad the op went well. And yes you do worry like sick for a while about the shunt blocking, but I do think that gets easier, honest!

I even actually forget about her shunt sometimes!

Ellie has had her since 8 months and she is now 5, her shunt hasn't blocked yet!

People have said to me you will just know when it blocks and I do agree

Have you been in touch with ASBAH? they are great and can give you a support worker who wil visit you if you like

Original poster
clewin · 08/11/2006 20:45

annie bear, have you found that the shunt has effected your daughters abilities in any way? i have been reading up and it says they can have a few learning problems... sure you've read all this too, is any of it true? my ds is only 4 and half months so we wouldnt really notice at this age, although he seems to be reaching the normal milestones wihtout any problems. is you dd aware of her shunt and how does she feel about it?

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anniebear · 10/11/2006 13:53

Can't really help you there sorry. My lirrle girl was criticaly ill, life support, etc so she has special needs now, so she has problems but suffered brain damage with the Meningitis

There can be learning difficulties, problems with memory, following instructions but a child can have none of these or minimal

A full and healthy life can be led

I really would advise you to contact Asbah, we had a lovely lady visit who answered my questions and was a great support

anniebear · 10/11/2006 13:55

your DS will be aware of his shunt as he gets a bit older as you can feel it, Ellies just feels like bumps at the side of her head

Obviously being a girl helps as she has long hair!

I think it would only be visible if a child had very very short hair

Original poster
clewin · 10/11/2006 20:57

annie bear, thanks for the advise. A lady from ASBAH has actually sent me an email asking me if I would like to meet up with her. I think that this would be a good idea as I'm sure she will be able to advise me on alot of things and answer my questions. Thankyou again for your advise x

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Original poster
clewin · 17/11/2006 20:27

i am due to go back to work in 3 weeks but with my son recently having the op to insert a shunt i dont feel ready. When my ds was born he has strep b meningitis and now at the end of my mat leave he has been back in hospital. Work are saying i need to return to work before they would consider paying me any sick pay, or i would have to take leave without pay. The only other option is to claim sickness benefit... has anyone got any advice,obviously i will still need money coming in but i dont want to be forced into going back to work when me son is still recovering

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Original poster
clewin · 09/12/2006 22:00

my ds's first shunt blocked within 2weeks! asked 6 different docs and nurses if it looked ok and each time was reassured...only to attend neuro clinic to be told he needed an emergency op to gett he shunt out. We spent a week with him having a drain tube which allowed the csf fluid to drain into a bag, then a week later a new shunt was inserted. This one was fine on his check the other day..only now to find out his wound is infected! what a start!

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