Joined: 24 April 2007 United Kingdom Posts: 1847 Gender: Female
Posted: 19 March 2008 at 10:44am | IP Logged
I wondered if anyone could tell me anything about Hydrocephalus (sp?)(water on the brain)?
A very close friend of mine had her second little girl last year. She has always had a slightly larger than normal head, and has been checked several times to make sure everything is ok, which they were told was the case. My friend has constantly worried about it though.
Now suddenly she has been called into hospital for an urgent detailed scan today - and they have told them that she may have water on the brain. As you can imagine, they are devastated.
I know very little about this - I just wondered if anyone here knows anything about it, or maybe knows someone who has had a child who suffered from this condition.
Joined: 12 June 2005 United Kingdom Posts: 5851 Gender: Female
Posted: 19 March 2008 at 11:57am | IP Logged
I had a similar situation with Ella when she was born. Her head measured larger than average from birth and as she grew, she kept going higher up the centiles. To start off with, the doctors and health visitors monitored her and then at her 8/9 month check, they weren't happy and referred us to a consultant as they suspected hydrocephalus.
We had to go for a brain scan, x-ray and ultra sound to check the fluid levels and the development of her skull as by about 7 months, she'd started to have a slightly bulging forehead. The hospital were brilliant with Ella and although the ultrasound was the least pleasant for her, they did everything they could to make sure she was comfortable. The scans all showed that she did have above average fluid, and that the 4 plates that make up the skull hadn't and were not fusing together properly.
At this point, there were no worries about her development, apparently with Hydrocephalus this is one of the biggest concerns, so they monitored her for a further 18 months. At this point, I started to take Ella to see a chiropractor who did a lot of work with her, particularly around her head and the bones did eventually fuse together properly.
We were eventually given a diagnosis of Familial Macrocephaly, which basically means that she has a larger head, and it runs in the family! My head circumference is above average too and its on our records so that when this baby is born, he'll be monitored for head size too. Having a larger head itself is not a problem, as long as the fluid doesn't build up and then put pressure on the brain. Familial Macrocephaly can apparently lead on to Hydrocephalus if the skull doesn't fuse properly and the fluid levels increase.
Phew - hope you're still with me!
How is your friend's little girls development?
I hope this has helped a little. It is hard and terrifying to think that your child could have something wrong and having to take them for scans isn't nice at all, but it can all turn out OK.
Joined: 24 April 2007 United Kingdom Posts: 1847 Gender: Female
Posted: 19 March 2008 at 12:59pm | IP Logged
Thanks for replying Dizie. Your story about wee Ella sounds similar up to this point with my friends lo. She is nearly 10 months, been checked by measuring regularly, and also has a slightly bulging forehead. Her development socially seems normal - she smiles, laughs, interacts with everyone. She has been a particularly contended baby. She hasn't started crawling yet, which my friend's mum had commented on recently - although I had said to her that all babys develop at different rates (Cameron was quiet lazy when it came to crawling and walking!)
Does that mean that wee Ella is fine now that the bones have fused together properly? (hope you don't think I'm being too forward by asking) Or does she still have to have checks?
This has definitely helped to understand things a bit better - I haven't heard from my friend yet today - but I hope to speak to her later. (unfortunately we now live 8 hours away due to dh's job, so can't be there physically to support them - very frustrating). I will let you know what's happening.
Joined: 12 June 2005 United Kingdom Posts: 5851 Gender: Female
Posted: 19 March 2008 at 1:23pm | IP Logged
Your friend's lo does sound like Ella was. She too developed socially fine and for what its worth, Ella never really did crawl properly - like you say, each child does their own thing and their own pace. Ella had a kind of commando roll manouver that she used to get about.
Ella had her brain scan and xray at somewhere between 10 months and her 1st birthday - I can't remember exactly when. She was then monitored at the hospital every 3 to 4 months and had an ultrasound at 18 months. They continued to monitor her until her skull fused, which was just after her 2nd birthday. The hospital then discharged her; she'll be 3 next month.
Hope your friend gets on OK and please do keep us posted, please do feel free to ask anything, if I can help I will! Feel free to PM me if you'd prefer.
Joined: 24 April 2007 United Kingdom Posts: 1847 Gender: Female
Posted: 19 March 2008 at 8:53pm | IP Logged
Good news! My friend's lo had her scan, and was they were told that although she does have increased levels of water, they are classed as 'normal' - at the upper-end of the scale of what they class as normal, but still ok. Her development is fine. They have to go back with her again in June - and they hope she'll be walking by then.
They said that she just has a larger head than average. The consultant said as they were leaving the room "Buy her some nice big hats!" So fingers crossed everything nice and 'normal' in June.
They are so relieved - they had an awful 24 hours between the first scan yesterday, and the detailed one today.
Thanks very much Dizie for the info - I really had no idea about it. xxx
Joined: 12 June 2005 United Kingdom Posts: 5851 Gender: Female
Posted: 19 March 2008 at 9:06pm | IP Logged
Excellent news! I'm so pleased!
I have the hat thing too. I bought Ella a sun hat in Tesco the other day and its age 4-8. Ella will be 3 in April! Tell your friend the other thing to watch is tops as I have no end of probs getting tops that fit over Ella's head.....
I forgot to say that Ella's bulge has gone now and she has kind of grown into her head. Yes if you measure it, it is bigger than average but you don't look at her and thing jeez that kid has a massive head!
Joined: 12 June 2005 Germany Posts: 801 Gender: Female
Posted: 24 March 2008 at 8:54pm | IP Logged
Hiya, Great news about your friends daughter.
I don't get on here as often as I would like so have only just seen this post and was just about to tell you that my cousin has hydrocephalus, which they didn't discover until he was about 12 possibly a couple of year younger. The only reason I'm unsure is that I'm sure it was discovered because he was rushed into hospital after having his first alcoholic drink, they thought he had drunk loads but he had only had 1 I think and it obviously had a negative affect due to his condition... it was very very late anyway and I was only young myself but remember everyone being really shocked about it at the time.
However, he is slower than his brother and sisters and he speaks very slowly as well in comparison but other than that once he had the operation for the drain he has been able to live a normal life... in fact he is due to get married soon and planning on starting a family.
Glad your friend got good news though and to be honest Cerys and Seren were very slow to start crawling. Seren will be 1 on 4th April and she has only been crawling for a couple of weeks and she didn't sit up until she was 9/10 months, they are all different as you've already said.
Joined: 07 March 2007 United Kingdom Posts: 115 Gender: Female
Posted: 15 May 2008 at 11:48am | IP Logged
am late to thread but it got my attention for one of two things. my daughter had a very prominent forehead when born and her little picture shows she looks like an alien. she is in fact a beautiful girl and i can only say that now looking back after seven years at the photo. i have a large head as do my parents as does maddie. she is seven and i'm buying hats for 8-10 yrs! it has made me think.
the other is that i work in a neuro setting and look after people who suffer with hydrocephlus, bearinf=g in mind the setting is itu, but i am sure i can cast my mind back to my ward days where it's not so scary. if you want to know anything give me a shout.
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Topic: Anyone know about Hydrocephalus?
I wondered if anyone could tell me anything about Hydrocephalus (sp?)(water on the brain)?
Good news! My friend's lo had her scan, and was they were told that although she does have increased levels of water, they are classed as 'normal' - at the upper-end of the scale of what they class as normal, but still ok. Her development is fine. They have to go back with her again in June - and they hope she'll be walking by then.
