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12month old has jumped centiles for head circumference - hydrocephaly?

(17 Posts)
SouthBySouthWest Fri 30-Aug-13 20:57:22

HV came for DS2s 1yr check, and I insisted that she do a measurement of his head circumference, even though it wasn't standard. I'd been worried for a few weeks as it had been a struggle to get his tops on over his head (hand me downs from DS1 that had fitted him fine at the same age). His head just seemed too big.

According to the numbers, he's jumped from the 25th percentile as a newborn to the 98th as a 12 mth old. His weight and length have not jumped centiles, just tracked on the same curve.

He also has a few other things going on - fussier than normal (could be teething or related to recent vax), very visible veins in forehead/head, bulging left eye....just not seeming right.

Went to the doctor on Thursday and now have an urgent referral for him to be checked at paediatrics.

I guess I'm asking whether anyone else has experienced this and it's been nothing. I'm obviously worried about hydrocephaly, and have very close history of anacephaly so am freaking a bit!

SouthBySouthWest Fri 30-Aug-13 20:59:46

Also, the HV didn't do measurement at 6mths, so not sure when change took place, apart from my observations.

strawberrypenguin Fri 30-Aug-13 21:02:58

Hi south I've not got experience of hydrocephaly but my DS has Craniosynostosis (early fusion of the skull plates) and I know how worrying head stuff is, offering a handhold. Sounds like you've done the right thing, don't let them fob you off push for a paed check soon. Where abouts in the country are you?

SouthBySouthWest Fri 30-Aug-13 21:16:15

We're in Glasgow, so have Yorkhill on doorstep. Just feeling a bit lost at the moment whilst waiting.

Have had a really difficult year (losing DF suddenly and DDog in a horrible accident), and have a history of serious illness that hasn't been picked up. Don't want to fail DS2!

SouthBySouthWest Fri 30-Aug-13 21:26:43

And thanks for handhold strawberry, appreciated.

strawberrypenguin Fri 30-Aug-13 21:29:55

You are not failing him, you are getting him checked by a paediatric doc. I'm sorry you've had such a bad year, hopefully if it is something that needs treatment it has been caught nice and early. I'm nearly as far away from you as I could get (southern England) my DS is being treated by the John Radcliffe in Oxford.
It is so horrible when you are worrying about them isn't it? I spent most of DS's first year worrying every time his head hurt in case it was related to his condition, now he's had his op I'm a bit better!
Hope your little man is on the mend soon.

SouthBySouthWest Fri 30-Aug-13 21:37:31

Thank you again. I now have a small inkling what my mum went through after I was diagnosed with liver cancer at 6mths. You just worry all the time. They are so small and vulnerable. Just want to hug him tight and not let go

SouthBySouthWest Thu 27-Mar-14 20:54:58

I know this is an old thread, with not a lot of responses, but just wanted to update in case anyone did a search about a similar problem.

After an ultrasound, my DS was diagnosed with hydrocephaly, and admitted. Further CT/MRI/angiograph dignosed the cause of this - a dural sinus malformation. This is a very rare congenital neuro vascular malformation.

We had a very stressful couple of weeks when we didn't know if it could be treated. Luckily, we were in the best place for treatment, and my DS underwent catheter embolisation which appears to have been very successful. He has been having follow up MRIs and anticoagulant therapy.

I can give further information if anyone's interested, but just wanted to leave an update about the successful outcome grin

Goldmandra Thu 27-Mar-14 21:26:06

That is lovely news, OP.

Does catheter embolisation mean that there is no shunt/valve involved so he's less likely to have future complications?

I hope you're now reassured that you haven't let him down one bit. You made the HV check his head and you were so right to do so.

Your DS is lucky to have you. Well done smile

SouthBySouthWest Thu 27-Mar-14 22:00:57

Thank you Goldmandra grin

Yes, it means that, for the moment, he does not need a shunt. Because the cause of the hydeocephaly was this avm, now that it has been (hopefully) successfully treated, we are hoping thay the CSF will start to get back to normal. Lots of monitoring for the moment, but fingers crossed.

Hope this can give hope to anyone suffering something similar.

Goldmandra Thu 27-Mar-14 22:17:26

It's times like this that make me really appreciate the advances in medical technology. It's so brilliant that they can do this. He must feel so much better!

My fingers are crossed that his CSF volume goes down and he gets back to normal too smile

SouthBySouthWest Thu 27-Mar-14 22:43:43

He's definitely a changed wee boy. Before, he was gurney and upset much of the time. Now he's my happy wee chappy. I don't think we realised at the time how bad he must have been feeling.

Last MRI indicated a reduction in the CSF. Hoping this continues.

SouthBySouthWest Thu 27-Mar-14 22:44:14

Thank you Goldmandra grin

Yes, it means that, for the moment, he does not need a shunt. Because the cause of the hydeocephaly was this avm, now that it has been (hopefully) successfully treated, we are hoping thay the CSF will start to get back to normal. Lots of monitoring for the moment, but fingers crossed.

Hope this can give hope to anyone suffering something similar.

daluze Thu 27-Mar-14 23:37:32

You must be so proud, OP, for realising something was wrong and getting the right help. So glad to hear your little one is on mend. Very well done!

AwfulMaureen Fri 28-Mar-14 07:23:02

Gosh op that is just fabulous. smile smile smile smile smile smile Well done to you for pushing and your little chap for being so tough. xxxxxx

DebbieOfMaddox Fri 28-Mar-14 07:30:28

That's marvellous news; thank you for coming back and updating.

KeemaNaanAndCurryOn Fri 28-Mar-14 07:33:31

What lovely and positive news. Pleased for you OP x

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