Benign external hydrocephalus?

[Airysairy]

Hello everyone, my first time posting and I would love some help if anyone has any experience.

My 7.5mth old is globally delayed and is currently being investigated for metabolic orders and genetic disorders. However, the test results are starting to come in and so far everything is clear (though not all is back just yet). The one thing we do know is that he has a diagnosis of benign external hydrocephalus and that the rest of his MRI was normal.

Our consultants said this is a benign finding and don't seem to think it explains his delays; however, lots of studies online have said children often have a transient delay in development due to the condition so I am wondering whether it at least plays into my DS's issues.

If anyone has any knowledge or experience in this area, I would be so grateful to hear about it.

My 10 year old was diagnosed with benign external hydrocephalus. It was then changed to ventriculomegaly which is enlarged ventricles in the brain but without pressure. He has moderate learning disabilities but is managing in mainstream school. He is very lovely and extremely determined. He loves fixing things and diy and although he struggles with reading and writing he uses YouTube videos for instructions on how to cook and fix things.

Thank you so much for your reply. It is great to hear how well your son is getting on! It sounds like he is very handy to have around the house - I can only hope my boy turns out that way!

Do you mind me asking, did you notice delays early on? My boy is only just starting to reach now and he can't sit independently without cushions or someone helping him for more than a few seconds, and he is not really interested in most toys yet. His consultant said he is not as "sparkly" as others of his age, which I found a fair comment. He is making progress every day but it is slow.

Thank you again 😊

Hi both, this could have literally been written about my little boy (16 months). His cysts were picked up at antenatal scans (in the ventricles) and he’s had two MRIs since birth. The cysts have now gone leaving large ventricles and he also has a diagnosis of benign external hydrocephalus. The hospital seem to be fairly relaxed about it, which is promising. It’s nice to hear from others who have had similar!

That's ok. He was delayed right from the beginning. He was born at 35 weeks and an MRI scan showed his brain was less wrinkly than it should be for his age, it was more like a 33 week baby's brain. He was still like a 3 month old at one year and he sat up unaided for the first time at 16 months. He walked at 2.5 years.

Hi, I'd like to chime in and say as a 30 year old I have ventriculomegaly,
Which noted above is enlarged ventricles, I have pressure too - Ive lived a normal life albeit headaches from the pressure.

I agree, it is so nice to hear others have been in the same boat - the registrar said when telling me what the MRI had found that it was a new one on him (eek!) but that I should focus on the "benign" aspect, which sounds very similar to what your hospital said!

I have read a few studies, several of which said the excess fluid resolves around 2-2.5yrs and I am hanging on to that at the moment. It is a little frustrating that I don't know whether this condition is "it" for my son! His antenatal scans were all normal and it was only the delays that prompted the checks while he was in as an inpatient for bronchiolitis.

Do you see a neurologist for your son or have you been told about the finding and then left to it like us? (To be fair, we are trying to rule out mitochondrial/metabolic/genetic causes at the mo, so maybe will revisit the hydrocephalus if everything else is clear). How is your little boy doing?

Thank you @elliejjtiny , I really appreciate hearing the timeframes for your son. And it is really encouraging to know that he is achieving at mainstream now. I have been finding it so hard thinking about my little one's future - and obviously there are no guarantees, and we don't know if he has a disorder they haven't found yet, but hearing about others with his condition is really helpful.

Thank you, @JamieJ93 . Again, it is so encouraging to hear that you haven't been held back by this condition, despite the headaches. I hope you manage to keep the pain under control. My son often pats at his head and I do wonder if he is sore, but he is generally a chilled little thing, so maybe he is just wondering why his poor little forehead is so out of proportion to his body! His head is on the 98th centile and body just below the 50th....but he is still very handsome 😊

Sorry, that was for you, @Pelotonconvert . I'm not good at this posting lark!

Not yet but I think there might be a referral at some point. It sounds like your little one is doing really well. Our little boy is definitely behind with his gross motor but similarly to yours definitely making progress (albeit slow). He’s quite small but his head is literally off the charts >99th I guess it’s a wait and see…but that can be very anxiety provoking too!

Hi there - just to let you know there is a Facebook group for this condition - also know as benign enlargement of the subarachnoid space - you might be interested in joining - lots of parents sharing experiences. https://facebook.com/groups/123828737640797/

@Airysairy this is my little boy when he was around the same age as yours is now. He had a big head with quite prominent veins on his forehead then but he is a lot more in proportion now. He weighed 7lb 2oz at birth but newborn sized clothes were too big for him at the beginning so he must have had a heavy head!

What a sweetie! My little one has very, very similar posture. He is only just starting to be aware of what his arms are for (and sometimes enjoys bashing me in the face with them). He has the prominent veins too; it will be interesting to see when he starts to grow into his head a little bit more.

Thank you! I'm not currently on Facebook but it will definitely be worth me signing up. I really appreciate the link.