hydrocephalus

cubuff98

Does anyone have any experience with this condition?  My DD has been scheduled for a CT scan this week b/c her head is measuring large.  She's about 5 mos. and her head circumference is 45.6 cm.  (above 100%) 

joeandmarsha

I work with adults who were born with this condition, and if it is caught and monitored your DD will be fine. The ppl I work with have other disorders as well most of the are deaf and blind. I hope your scan goes well and her head is just a little big!

here4u

My DD had "external hydrocephalus" meaning the fluid was btwn her brain & skull.  Her head was measuring large around 6 months, so she had 2 u/s & then a CT Scan.  The CT Scan was really quick, and they just swaddled her tight in the sheet to avoid being sedated.  She ended up seeing a neurosurgeon for a year and was on medicine 2x a day to keep the fluid from building up.  She is fine now and was discharged from the neuro 2 months ago.  GL!

Andrewsgal

My son had a CT scan at 6 months for a large head, there were no develpemental issues but the Dr. wanted to be sure, turns out he just needed big hats! We were lucky, just wanted to pass this on.

JenGK

They wanted to do a scan of DS's head when he was little, until I explained our family's history of big heads.  I had a wear an XL cap for my graduation, and my hats are bigger than DH's.  We never ended up going forward with it because of that.

breezy0629

DD is also the proud owner of a head that went above the 100% for a few months around 4-8mo. It is back to the 98% & we all got measured to determine if it is a genetic trait and it is. I am the culprit, owning a head in the 96% myself. DS and DH also both have large heads.

Because all these measurements lined up and she doesn't have any other reason for concern, they didn't do a CT scan. However, we did have an MRI last week for another reason and it was perfectly fine, so we do have confirmation now of her very large.... very normal head. 

Anyway, I know the scan will make you feel better about it, but kids can have large heads w/o hydrocephalus. 

SJC1984

I just wanted to say that I'm glad your doctor is proactive.  We come from a long line of big heads and DS's head was off the scale.  My pedi insisted that it was fine and when DS was 8 months old we ended up getting an MRI and it turned out my son had a brain tumor (And did later develop hydrocephalus and required shunting due to the tumor.).  I often hear horror stories like mine with infants with large heads and other symptoms that go unnoticed, so I am confident that even if your child's CT comes back 100% normal that your doctor made the right choice in getting the scan *just in case*.  I'll be praying it comes back perfect!

Florak8

My son has a giant head but we do, too. We got the MRI and CAT scan when his epilepsy started around 3 months. He has "benign cranial macrocephaly"-- family bigheadedness. It's worth the peace of mind to get the tests. One less thing to worry about