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question about hydrocephalus

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question about hydrocephalus

Postby naughtybutnice » Tue Oct 14, 2021 10:16 am

not sure where this question is best placed-My DS has hydrocephalus but doesn't need a shunt. the fluid is slowly draining so there's no build up of pressure. just wondering does the fluid ever fully drain away or is there always a danger of a build up?
hope someone can help.
Thanks.

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Postby [email protected] » Mon Oct 20, 2021 9:25 am

I have no experience of this but just wanted to offer my Congratulations on you little man and wish your family every best.
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Postby dollybird222 » Tue Oct 28, 2021 11:01 am

Sorry cant answer

but if you log onto rollarcoaster there are lots of posts form moms with children with hydrocephalus

goodluck
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Postby littlemisshopeful » Fri Nov 28, 2021 2:53 pm

It depends on the extent of the hydrocephalus. It is great that is draining itself, but if it is a serious one then I think having a shunt inserted is a possibility if it really comes down to needing it. Please ask the consultant such questions though. Never be afraid to ask all the questions in the world, even if they are rushed or abrupt. It is your child and all your lives.
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Postby naughtybutnice » Sat Nov 29, 2021 11:04 pm

thanks for all the replies. have written down all the questions that i want to ask so hopefully i'll get some answers soon

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Postby D Momma » Mon Mar 23, 2022 3:07 pm

Hey naughty,

Glad to hear your son is well. We had a scan at 23 weeks and it showed that there is a small level of swelling on the left side of the babies brain and that it could be hydracephalus. I had a scan last week at wk 27 and there is no change its still swollen. Its 1cm on one side and 1.3cm on the other. What I want to find out if you dont mind is did you have something similar happen or did you find out after the birth of your son.

Thanks
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Postby littlemisshopeful » Mon Mar 23, 2022 4:43 pm

Best of luck newmrsT. I hope all will be ok. I am hoping to TTC after our wedding in August and I will be at risk of having a baby with spina bifida and probably so hydrocephalus as well. I have epilepsy and the drugs can cause spina bifida. I have been trying to get off them for over a year now, but it is a slow process. I have managed to half the dose and hopefully will be able to lower it again before the wedding, but I won't be fully off it. Taking the larger dose of folic acid, so will be praying that all will be ok. Have to measure the risk factor between being well and a baby might be ill, or having seizures in pregnancy that could kill the poor baby and hurt me. It's a hard one.
Just wondering naughty, has your son got spina bifida as well? Best of luck with him too and your family.
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Postby naughtybutnice » Thu Apr 16, 2022 3:18 pm

Hi New Mrs T.
DS had a brain haemorrhage(sp) after birth and this is what caused the hydrocephalus.
I hope all works out well for your baby.
Take care

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Postby Dairy Queen » Thu Dec 03, 2021 1:14 pm

Only stumbling across this now. What is the story now NBN? Do they still think it's draining? DS had obstructed hydrocaphelus his head was pretty bad though. Grew a years worth in one month. He didn't have a shunt but a new ish proceedure called a third ventricle ventriloscopy. If it is successfull he won't need any further operations. He has ct coming up in 2 weeks.
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Postby littlemisshopeful » Fri Dec 04, 2021 2:46 am

Dairy Queen, that sounds like a greap new operation if it is successful, that he wouldn't need any further surgery or shunts etc. Hope it all works out and is successful for him.
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Re: question about hydrocephalus

Postby GreenerPastures » Tue Jan 05, 2022 9:35 am

Don't have any advice really... Just wanted to give all my best to all the mammies and daddies. I was born with hydrocephalus. I've had a shunt since, well since forever. I've been lucky though and haven't had any problems for over 10 years! The doctors can't explain exactly why but maybe when the major growth spurts stopped, the rest just settled down. I used to go to Beaumont every year for check-ups and Clontarf Remedial Clinic but had my last trip was at 19. I had other issues with my left leg and hips. All seems o.k. now anyway. Anyway, all the best with your LOs :wv
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