Hydrocephalus?

Next week Kaylyn is having an MRI of the brain done to rule out Hydrocephalus. Both of my girls have always had big heads, but up until now they were both growing appropriately on a curve. Within the last 3 months (since their 12 month visit) Kaylyn's head has grown a lot and her head circumference is now off the charts, and the spike in growth is very dramatic.

Developmentally she is doing great, and even though she was a 28 weeker she is already caught up to her actual age in size, gross & fine motor skills and she has an exceptional vocabulary already. They did measure both mine and my DH's head, DH's head is in the 98th percentile and mine was in the 78th percentile so it is possible her large head is genetic.

I am extremely worried, so I would appreciate any experience anyone can share. For the MRI she will have to be sedated and intubated, which is always a risk in and of itself. TIA!

 

I know we had a similar experience in the dr.s office... the nurse ran out of the office without saying a thing after taking all their measurements. Later the dr. came in- chuckling- she said the nurse was panicked as the boys heads were bigger than she had ever seen and thought there was a big problem. DH and I have large heads as well. In 6th grade I was measured biggest head in the class (what a great record to have-ha!) I guess with all this- I am sending positive thoughts your way. It could and most likely will end up being only genetics. but it is great that they are making sure to rule out anything else. My Jack needed an ultrasound at 4 months of age for a heart problem and there was nothing- but it felt good to rule out the problems and be prepared if there were anything.
Best wishes
Lanie

 

We had a scare around the same age. One of my DDs head circumference shot up to off the charts. There was a training doctor and he and our pedi (who is a developmental specialist) measured 3 times. Our pedi said it was something they would keep an eye on, but bec her development was on track, she wasn't overly concerned. At the next appointment DDs height had shot up to kind of match her head circumference (both now off the charts) which my pedi said explained the head growth. We also had a NICU follow up 6 months later with NICU pedis. They said her large head was genetic. They weren't concerned at all, but measured DH and my heads to prove their point. Turns out we do have big heads and now so do both our DDs - although one more dramatically than the other. (Does her sister also have a large head?). Also, after that one period of rapid growth she now is following her new curve.

Another set of twins we know, one had the head ultrasound to rule out hydrocephalus and everything was fine. Their doctor said the charts were made awhile ago and children's heads seem to be getting bigger.

 

I don't have any advice, just wanted to send some :hug: your way!

 

:hug: I don't know about that situation but just wanted to send good vibes your way.

 

We have had a similar situation with Anthony. At his 4 month appointment, the Dr asked about his head size-if we thought it was large, etc. He said if it continued to grow the way it was(off the growth curve), then he wanted some tests done. So we went to the 6 month appt and it was again, off the curve. So he scheduled the MRI. To be honest-it wasn't all that bad. I think the nurse made it worse than it was. He was given a med to make him sleepy. He fell asleep. Went into the tunnel thing and was FINE. Well, he kicked the monitor off his foot, and so she went back to go and put it back on and kept messing with it-and thus woke him up. So we had to start ALL OVER AGAIN! We did and once we did it was pretty quick.

There was a small amount of fluid in the front of the head-but nothing to be worried about-it would be reabsorbed. So-our pedi also referred us to a neurologist. We went to the neuro at 6/7 months-and EVERY TWO MONTHS after! All they do there is measure his head...graph it...and send us on our way. He was slowly starting to get back onto his own growth curve for his head size, and she said usually around 18 months they start to even out in the growth of their heads.

For me, I wasn't all that worried because a.) genetics and b.) he was developing fine in all his areas.

They would rather be safe than sorry, so I understand the testing, but it sure is a hassle. We were checked for macrocephaly btw.

I'll keep you and your daughter in my thoughts. It's a nervewracking experience! :hug:

 

We went through this when mine were about 10 months old. DS and DD both have really big heads (so does DH, and so do I) but DS's head spiked off the chart. He was still young enough that we could do the ultrasound. (I think the skull is still open enough on the top at that age to see with an ultrasound.) The radiologist told me that a lot of pediatricians OVERcheck for hydrocephalus, at least in his opinion. He looked at DS's head for a long time, it was making me nervous. Then he turned to me and said, "The kid's just got a big head!"

Odds are yours does too, especially since it sounds like it's genetic. I wish you the best of luck though!! I would do the MRI -- better to know and not worry, IMO.

 

Just wanted to send hugs your way!! Both of my girls have always measured in the 90th percentile for their head size--much to my husband's dismay. My DH's head is huge and he just hates they inherited that from him!! Hopefully, the MRI will rule out any concerns.

 

Sending hugs to you. We had to go through an MRI with Nadia when she was 9 months, because the ped thought there was something wrong with her hips (turns out she's super flexible!) -- and I was so nervous beforehand. But, it turned out the worst part of the whole thing was how cranky she was at not being able to eat or have milk that morning.

You'll get through it, and I hope you find out that your munchkin just has a healthy-sized noggin!

 

We had an MRI as well---for both large head and to look for CP. one of my DD had 97-99+% head from 0-24 months...now it has settled into around 96%. She has some extra fluid--but not hydrcephalus. No worries from neuro and she goes 2x a year.
No
We all have big heads ( mine is larger than DHs). They deemed it a combo of genetic & preemie (extra fluid). Our CP dx is based on clinical finding (tone, reflexes, developmental milstones, etc) and no sign on MRI.

It was not bad at all---we went at night and they slept through it all.


KC

 

My boys were born at 35+1 and of course, had smaller than average heads - they were in the 5th percentile. Gradually over the next 10 or so months, their heads grew from the 5th percentile to the 95th percentile at their 9 month appt. - so the pediatrician decided to send them both for an ultrasound (they still had/have their soft spots). He also measured my head (larger than average) and my DS' head (not even on the charts for 4 year olds) and I told him that my DH's dad cannot wear a baseball cap without loosening it all of the way - he said he was not really worried, as 95% of large heads are due to genetics - but it would make all of us feel better if we ruled out hydrocephalus. So, we had the u/s done (a huge pain with wiggly, squirmy 10 month olds!) - and both of their heads are just large! In fact, at their 12 month appt. they had gone "down" to the 90th percentile. So, the growth is slowing down.

My own theory is with babies born early - their heads eventually become the size they were destined to be, so if they are meant to be large heads b/c of genetics - they have a lot of growing to do in those first 12-15 months!

Have you looked up the signs of hydrocephalus? I think that is actually what made me feel much better before I found out for sure - there are a lot of other signs to look for besides large heads/rapid head growth including: "sunsetting eyes" (where you can see the whites of the eye above the iris, throwing up frequently, irritable, sleeping a lot, delayed development/milestones, etc.).

:hug: I know it is so hard not to worry! Try not to worry, and more than likely she is just fine and has a big head due to genetics. :hug:

 

:hug: Sorry you have something to worry about!

Here's my story - when I was a baby (or toddler, don't know), the pedi was worried about hydrocephalus because I had a big head. Of course, my mom got all worried too. And it turned out to be nothing, just a big head, like my dad's side of the family. (And I don't have a big head now, except figuratively of course! )

I can see how the sudden jump in head size could be concerning... But any kind of growth comes in spurts, so maybe that's it? Anyway, I'd bet you a fancy coffee drink that everything's ok. It's good that you're getting it checked, but especially with your family's head sizes, it sounds like probably nothing.

 

:hug: I don't have any advice Kyrstyn I just wanted to send you a hug and say I hope she's okay.

 

Hey Krystyn,

We went through the same thing. At their 9 month visit, the ped was a bit concerned at the rate that Lorien's head was growing. We didn't have an MRI done but they did an ultrasound. She still had a tiny part of the soft spot opened so they were able to do it. I think if the spot had been too small and they couldn't get a good look through there then they would have had to do an MRI.

Anyway, it turned out that she just has a big head (Maybe it has something to do with the fact that she has a big smart brain??? )

But...I have to say that she is definately growing into it. It is starting to proportion itself with the rest of her body. Never the less, it is always a bit more difficult to get certain shirts over her head than her sister. I just have to stretch them out a little better when I put them on her.