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does anyone have experience with suspected Hydrocephalus in baby?

(13 Posts)
Loveisallyouneed22 Tue 10-Nov-15 22:35:20

My daughter is 6 and a half months old. She has quite a prominent forehead and the dr would like her scanned for suspected hydrocephalus. It came as quite a shock and Im very worried. I went to sick kids about her wheezing and they sent me away with this information. She has a scan next week.

She is developing normally, reaching all her milestones. Reaching for and grabbing toys, babbling, blowing raspberrys, showing keen interest in everything, recognises people and pets, rolls over onto her side (but cant get back over).

She doesnt have any other symptom.of hydrocephalus such as vomitting, sleepiness, etc. Her fontanelle is slightly raised but iv never been concerned. Her head measures 16.5 inches so its not very large for her age.

It is just the very strong prominent forehead that caused the dr concern. I am so worried and looking for some reassurance. Has anyones baby had this condition suspected and turned out to be ok? Just baby has a large forehead?

Thank you x

LatinForTelly Wed 11-Nov-15 12:05:12

Hi, one of my children was scanned for hydrocephalus - very prominent forehead plus a few of the other symptoms - I'm not surprised they did. He didn't have it, but his distinctive forehead was part of another condition. However, it sounds like he was different to your daughter, wasn't meeting milestones, v small etc.

One doctor told me that although my son's head was large, it was a good sign that it was growing along a centile, albeit a high one, rather than crossing the centiles, iyswim.

I very much hope all is well with your daughter and you can get through this next week ok - try not to google too much. I think it possibly helped that I didn't have a clue what hydrocephalus was - and didn't have internet back in the day!

EyeoftheStorm Wed 11-Nov-15 21:54:55

DS2 does have hydrocephalus caused by a premature birth. His head was off the chart by 6 months and growing too fast and he had many of the symptoms you describe - very sleepy with sunsetting eyes.

I would take great comfort from the way your DD is hitting her milestones and is active and alert. I'm sure the dr is just being extra careful.

Loveisallyouneed22 Wed 11-Nov-15 23:45:37

Thank you for your replies. It has gave me some reassurance. It is a very scary time as you read such horror storys on the internet.

LatinForTelly thank you for replying. I hope your little one is doing well after being diagnosed with a different condition. x

Eyeofthestorm how is your son now after the diagnosis if you dont mind me asking? I hope he is doing well x

ChristinaParsons Wed 11-Nov-15 23:48:33

I have experience but totally different situation from yours. I would wait for the scan and take it from there.

SleepIsForTheWeakAnyway Wed 11-Nov-15 23:58:53

My dnephew was diagnosed with hydro when he was about 6m old. They think he suffered a brain haemorrhage during birth which was missed as the birth was a natural home birth and there was reason to think he could have suffered any injury. It was quite obvious that something wasn't quite right by about 4 months as his head was the size of an adults, he wasn't using the lower half of his body and would cry when his pram rolled over any slight bump. At first they thought he was blind because he couldn't see close things but my dsis eventually got a gp to measure his head. He was blue lighted to hospital immediately and underwent his first operation to insert a tube to release the extra fluid that night. He had four operations in total including one to insert a shunt. It was a worrying time.

He is now 6yrs old and is a proper cheeky monkey. He does have epilepsy and global developmental delay and he is likely to need further operations on his shunt as he grows but he is doing really really well. He attends a mainstream school (with support) and rocks about with his db and cousins.

Best of luck with your dd flowersw

Loveisallyouneed22 Thu 12-Nov-15 02:10:14

Hi SleepIsForTheWeakAnyway. Thank you for sharing your nephews experience with me. My dd doesnt have any symptoms at all of what you describe. Again given me some reassurance. Im glad your nephew is doing well and is a cheeky, happy little 6yo boy smile x

EyeoftheStorm Thu 12-Nov-15 13:07:48

DS2 is another 6 year old who is doing well - he had a shunt put in at 7 months and he started catching up on all those milestones.

Hydrocephalus is not plain sailing and we've had worries and rocky moments, but you would never know now that he had such a stormy start. It is amazing what the doctors can do and there are many scenarios that don't involve the worst scenario. DS2 is pure sunshine (not biased or anything!)

Stay away from google (hard I know). I well remember that hovering anxiety, watching every smile and movement for clues. But the way you describe your DD is not how I would have described DS2 at that age. I really think your doc is being super careful.

Loveisallyouneed22 Fri 13-Nov-15 01:17:22

Thats great to hear your son is doing well also Eyeofthestorm. I really appreciate you all taking time to reply. Even just a few messages has gave me reassurance. If my daughter does have it you have all put my mind at ease that it can be managed and she can live a happy life. Like you say such horror storys if you google too much. Nice to hear some positive outcomes of babys growing up with hydrocephalus and living a full, happy life. Thank you. x

LatinForTelly Fri 13-Nov-15 09:51:31

Thanks, Loveis, yes he's doing very well. He's a little star.

Hope you've got a busy weekend lined up so that you've got less time to worry (very hard, I know). All the best for next week flowers

Loveisallyouneed22 Thu 19-Nov-15 00:02:51

Thank you to everyone who shared their experience with me. It gave me great reassurance last week.

My daughter had her scan and all is looking ok. She just has quite alot of room around her brain the Dr said. This is causing the prominent forehead but he said it is normal for her.

Chippednailvarnish Thu 19-Nov-15 00:21:17

My DD had a type of hydrocephalus that sounds similar to what your DD has.

She had a period when her skull measurements were much proportionately bigger than the rest of her body and she was globally delayed. A scam showed that she had a void at the front of her skull. Her skull growth plateaued out at age three and although she still has a big head she is now fine. Good luck!

EyeoftheStorm Sat 21-Nov-15 15:49:04

That is great news Loveisallyouneed22. Thank you for coming back and sharing it. So glad everything is fine with your DD.

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