My baby has a big head - CT scan needed. Anyone else go through this?

[JenZen]

So, Ada's head is off the charts, and the dr. ordered a CT scan for her later this week. I'm really stressed. Anyone else go through this. I remember someone on this board with the same situation a few years ago ...

Ada is 6 months old. My son, Gabe, had a big head, too, but we never had to do a CT scan.

Jen

[DanaSD]

I don't know too many details but my sister's head was off the charts when she was a baby and the doctors talked to my parents telling them that it may be a sign of issues (brain development). I don't think they did a CT scan but this was 20 years ago. But big heads run in my family especially in the infant stage. She recently graduated with an honors degree in engineering so it turns out she just had a big head. My father hadn't told me about the doctors concerns until recently - since there was no definate they wanted to wait and see.

I think its good that they're doing a CT scan to rule out any issues. Instead my parents had to wait and watch how she developed.

I also think those head measurements are so random. There were severl times Brendan was measured wrong and they decided his head hadn't grown since he was born (he didn't inherit the big head). So they had several doctors come in and measure him. They took the biggest measurement so that they could chart that his head had grown. Followup visits his head measured as shrinking.

sending good thoughts for Ada and you. keep us posted.

[cchhbb]

This happened to my neighbor's son. He has a huge head. He was very slow on his gross motor skill development so at about 18 months and not walking they did a scan. Everything was determined to be okay and he's a normal 4 year old now.

The test was really easy except for seeing your child being sedated. She said her son literally fell over as soon as they gave him the drugs.

[gertdog]

I also think those head measurements are so random. There were severl times Brendan was measured wrong and they decided his head hadn't grown since he was born (he didn't inherit the big head). So they had several doctors come in and measure him. They took the biggest measurement so that they could chart that his head had grown. Followup visits his head measured as shrinking.


Ryan's head has been off the charts since birth, and his doctor hasn't been worried because it's been a) consistently big and b) is growing in proportion to the rest of his body. The doctor said some kids just have big round "Charlie Brown" heads and that my kid is one of them (yeah, noticed that when I delivered him, that's for sure!) but as long as he's hitting developmental milestones and we're not noticing anything odd, she's not worried.

I totally agree with Dana- the measurements in the doctor's office are random. More than once Ryan's head "shrank" and they re-measured and got a completely different number.

Has Ada always had a large head? If so, and since Gabe also had a large head, I wouldn't be too worried, but I know it's so hard not to. Hopefully the CT scan results will provide you with some peace of mind. Will be thinking good thoughts for you.

I think it was sweetpea whose daughter had to have a CT scan for a large head...

[JenZen]

Thanks, everyone. I'm trying not to worry, but you know how it goes ...

gertdog - I thought that was sweetpea, but I haven't seen her on the boards for a while ...

Ada has been above the top curve since she was born, but it moved up a little more at this last visit. And, I know what you mean about the measurements not being so accurate. Every time I go, the nurse measures it and then dr. does it again because he doesn't think the nurse is right. For what it's worth, Ada is also in the top percentiles on height and weight. She just dropped down in the 85thish percentile on those, but she was up in the 95 percentile.

I'm still amazed that I didn't tear when I had her. 9.5 pounds plus a big noggin' ...

[BucknellAlum]

My DS had a huge head - it felt like a cork popping when he was born! (sorry if TMI!) Then when I had my DD, I realized what a "normal" size head felt like during delivery.

Anyway, they kept a close watch on it at every visit and talked about doing testing, but ultimately did not. He is more than fine now, and he was always off the charts on head circumference and height.

I am sure they are just being extra cautious, but I agree it is no fun to have your baby have to have tests.

[HeidiD]

My son (who turns 15 soon - how did that happen??) was born with a big head. My OB was predicting I'd have a 9-10 lb. baby, based on how the head felt, but Andrew was only 6 pounds, 13 oz. My pediatrician did ask us the next day if big heads ran in our families, and while I was shaking my head no, my husband piped up, "Oh yeah, we all have really big heads in our family - none of us can wear normal-size hats." Hmm, would have been nice to know that ahead of time. ;-)

Maybe doing a scan is more a sign of the times -- that technology was not as readily available back in 1992. Since Andrew continued growing along the same curve, we were never asked to pursue anything further like a head CT. As a toddler, he did finally "grow into" his head, so it didn't look as disproportionate to his body as it did when he was a baby. Now of course I can't really tell anything about the shape of his head because he's got a full head of really long hair that goes along with his black t-shirts and electric guitars. The good news is, he's very bright, was invited to take the SATs in 7th and 8th grade, and is doing well in high school.

I hope you get results that indicate normal development and an 'all clear' for Ada. I recently toured a CT imaging center for work and was very impressed at how quickly scans can be done these days.

Heidi

[sweetpea]

Hi jen! it was me who had the big headed baby. she was way off the charts for a while so at 9 months we did an ultrasound that was unsuccessful b/c her soft spot had started to close...so then the next week we did the CT. she was fine, no big deal, but i will tell you the experience was a nightmare. and mainly b/c the CT tech was a jerk and wouldn't listen to me and i didn't stand up for myself. so i am going to prepare you :) emma had to lay down on her back and they wrapped her up tight like a burrito then laid the heavy blanket on her (to protect her). she of course was a bit freaked out but not crying. then they made me leave the room. the tech turned off all the lights and left the room leaving her alone in a dark new scary room. she freaked. the tech then informed me that he was going to wait for her to fall asleep (it was 7 p.m.--she could have slept at home, but not there!). i knew it. the child never sleeps anywhere but at home (at that time, thank goodness that changed!). so i tell him, "she isn't go to sleep" and guess what, she didn't. so after an hour of sitting in the waiting room and still being able to hear her scream. not cry but scream...i went in there and said enough was enough and to just run the darn scan.
the tech assured me she would fall asleep and i said no. finally stood up for us! so he went ahead and as soon as he turned on the machine and the lights starting moving over her head she went still and was in total awe. she was totally entransed (sp?) and got the scan done first try in 30 seconds. if only we would have done that from the beginning! it was so frustrating. i couldn't help but say "i told you so" to the tech. i mean, i AM her mom. i was so upset by the whole experience.
SO now that i have total you this horrible story and you are all freaked out :eek: don't be freaked out. i didn't tell you that to scare you, but to make sure you know what it's goign to be like and to just have them run it. and be done with it. don't endure the stress i did. i could hear her screaming thru 3 sets of closed doors, down a hallway. ugh. anyway, i was told that many children have big heads as infants and it is 99% of the time just a big head, but at least they are checking it now and have been paying attention. it's usually just precautionary. i'll be praying for you all and feel free to email/pm if you need anything! although after all that you are probably not wanting to know anything else :) i will admit it was the worst experience of her first year of life--even beat out my wicked post partum depression!

[Andrea_2]

Both of my kids have big heads, and always have. It seems to be a genetic thing. Recently one of the doctors at the pediatricians office insisted on doing a CT scan too for my daughter. I refused. None of the other doctors have ever expressed any worries (there are about 6 doctors in the practice), and I just have big concerns about exposing my kids to unnecessary radiation. My fears about this may be a little irrational, as I have had thyroid cancer, but I had a lot of xrays and other types of scans as a kid, and I'm absolutely convinced that that was what caused it. I should mention that my doctors disagree with my theory, but until they come up with one of their own, I don't think they'll be able to convince me otherwise.

Did her doctor say what they were concerned about? Is there only one doctor? Or did others agree with the need too?

[JenZen]

Hi all,

Well, we're back from the scan. It wasn't that bad, actually. Sweetpea, you had me a little scared. :) It only took a few minutes, and we had a really nice tech who stayed with her and soothed her. I won't know what the results are until tomorrow, I guess.

Ada was strapped to a foam thing during the scan, and she cried until the machine turned on ... then, she was fascinated by the sounds and lights.

Andrea - I guess the concern is that there could be excess fluid on the brain. That's what they're checking for. I only see one dr., and I trust him a lot, but if this turns out to be nothing, I may mention that it was stressful and I would have appreciated the option of declining. I guess I never question tests enough. My DS had three echocardiograms done his first year because of his heart murmer. In hindsight, I should have turned down the one done at 6 months because it made no medical difference. We knew what was causing the murmur, and we knew it was still there, and we knew we were going to have one done at 1 year to check if it had improved at all. So, I, to this day, think the one at 6 months was unnecessary.

Anyway, thank you all for your thoughts and prayers. I hope we can put this behind us soon.

Jen

p.s. Before the scan started, the tech asked me if I could be pregnant. I said, "I sure hope not!" She made me stand inside the glassed area anyway. :)

[sweetpea]

oh i am so glad it went smoothly! i didn't mean to scare you, just wanted you to be able to say "no" if you needed to and i need to be prepared to say "no" or i just go along for the ride. i'm sorry that i scared you.:o And i am glad it went so well--emma loved the lights too :) so glad you had great techs and you got to be nearby! yay! any word yet?

[wallycat]

Just thinking about you and hoping results are all good.

I know many European babies have bigger heads than US babies..not sure why.
I've seen pictures of me and WOW on that head size!

Best to you!

[JenZen]

Hey sweetpea! I was just coming on here to post the results ...

Everything is normal. I just talked to the nurse, and she said the report says there's a little excess fluid, but it's common at this age and will probably be reabsorbed. The recommendation is to have the scan redone in 6 months to a year. I have to talk to my doctor yet after he reviews the report.

Pheww. Glad to have that done with ...

ETA: thanks for thinking of us, wallycat!

[Debralynn]

So glad to hear the good news. Stop worrying! Noone had a bigger head than my newphew when he was born and it kept gettingbigger, way out of pororoption with the rest of his little legs and arms. He is now 12 and is finally growing into his head, I should mntion that he is the smartest kid I have ever known., and I come from a huge family!!!!! He reads everything and is into science and talks about thnings that none don't understands. He takes college courses at the local college on weekends, JUST FOR FUN!!!!!!! When he learned how to talk, around one year old, he started singing the ABC's BACKWARDS ! because he was BORED with the smae old ABC song that everyone else was singing. I favor big heads! These kids are the ones that will come up witha cure for cancer and aids some day................. :) Debbie

[Kristilyn1]

Just thought I'd pop on as the mom of another big headed kid. My pediatrician told me that while Daniel had a head bigger than most grownups (both my kids wear adult helmets and hats) that you pretty much have your adult size head by age 5 or so. It does a little growing after that and then you are pretty much done. If that makes anyone feel better......

Kristi

[JenZen]

So, this topic has reared its head again ...

At Ada's 9-month WBV, her head jumped up a bit, and now she's in no-man's-land on the chart way above the top curve. So, we have to see a pediatric neurosurgeon. I am worried sick. My dr. is talking about this like it's almost a sure bet she has hydrocephalus and will need a shunt.

So, please say some prayers for us. I'm angry and scared and everything else right now ...

Jen

[Andrea_2]

Sorry to hear about your concerns, Jen. I hope everything turns out fine for your daughter. Maybe they are just trying to be absolutely certain they don't miss anything. I know I mentioned before on this thread about my kids having big heads. In fact, my 17 month old who was born 8 weeks early is in the no-man's land too. Her height and weight are at about 10%, and she still hasn't learned to walk, but her head size is off the charts. Only one of the doctors in the practice ever expressed any concern about it. So, maybe different doctors just have different approaches. I hope you get some answers soon. Let us know how everything turns out.

[Debralynn]

Hi Jen, My prayers and thougths are with you. I hope everything is ok with your daughter. Maybe the doctors just want to make sure they are not missing anything and want to search every avenue of possibilites. Just hang in there and try not to worry. It sounds like you are getting the excellent medical care and these dotors just want to rule out any possible diagnosis they have missed. Hang in there. Hugs and prayers to you and yours. :) Debralynn

[PoppyJ]

Jen, my thoughts and prayers are with you and Ada.

[KathrynY]

Jen, you and Ada will be in my thoughts. I hope that you are able to get some answers soon that put your fears to rest.

[wallycat]

I am so sorry you are dealing with this!!!
Please let us know how everything goes.

I know how maddening it is waiting for results that you have no control over.
I will pray and send good thoughts!

[buffygirl]

Prayers, Jen, sorry you all are going through this.

[mst]

thinking of you and Ada.

[gertdog]

Jen, many good thoughts and prayers coming your way- for you, DH and Gabe, and especially for Ada.

[MinEaston]

((((Jen, Ada, Gabe, DH))))

Our best man is a pediatrician - PM me if you want me to ask him any questions or advice on the questions to ask!

[MelissaAS]

Jen- Thinking of you and sending positive vibes your way! Sometimes I wonder about all of this fabulous technology- it's great when it saves you but sometimes it's just too much information resulting in needless worry for something that just works itself out. Hope the latter is the case for you. Take good care of yourself and be gentle with yourself during this stressful time!

Melissa

[JenZen]

Thank you all so much for your prayers ... it means a lot.

We have an appointment with a pediatric neurologist tomorrow. I can't believe we were able to get in so soon. At first, they set us up for Aug. 20, but then someone canceled, and we were able to get in tomorrow, which I'm so happy about because I can't imagine waiting weeks while I'm worrying this much.

I'm clinging to the fact that the pediatric neurosurgeon felt he didn't need to see her so he passed us on to the neurologist (not that I know the difference!).

I'll update as soon as I know something.

Jen

[mgs]

Jen - good luck to you all. I certainly hope that little Ada just 'has a big head' and everything is fine. I hope you can rest assured that she is developing normally and meeting milestones and that can give you a little peace.

Please let us know how it all turns out. I will be thinking of you tomorrow!

Meg

[MinEaston]

I'm clinging to the fact that the pediatric neurosurgeon felt he didn't need to see her so he passed us on to the neurologist (not that I know the difference!).


Probably, the neurologist doesn't do the surgery. I would imagine that if any surgery is required you will consult with a neurosurgeon beforehand. So, the fact that you are starting w/the neurologist may mean that they don't think anything urgent is required. I'd take comfort in that, too!

[JenZen]

So, here's the update:

Yesterday went really well. I felt quite reassured after the appointment.

We found out that DH's head is over the 97th percentile for adult males, and mine is over the 95th percentile. So, big heads run in our family. The dr. said Ada's genes are pretty loaded for a big head. I also obtained Gabe's records before the appointment, and he is currently over the 95th percentile.

The neurologist spent a good deal of time with us. She went over development, my pregnancy, Ada's health, all sorts of stuff. Then, she did a lot of reflex testing and had Ada use her pincer grasp and that sort of thing. She watched Ada move on the floor and play for a while, and then she did a head exam and measurements. Ada is above the 97th percentile right now, but that isn't so much a concern as her overall growth is. If she stays on the same percentile, the dr. said she'd be happy. They just don't want her jumping higher and higher with each appointment.

So, I will be measuring her head every month and calling in the measurements for the dr. to plot. Ada goes back in three months for a followup, and if her head continues to grow in leaps and bounds, they will schedule her for an MRI. Even that doesn't mean anything ... it could just be normal growth for her.

The neurologist said she sees no signs of hydrocephalus right now, but she did tell us what to watch for. She said she was very reassured by everything she saw in Ada.

So, that's the scoop. Although this isn't behind us yet, I feel much better today than I did a week ago.

Jen

[wallycat]

YAY!!!!!!!!!!!!!!!!!!!!!!!!!!
I'm so happy for you and your family!!!

[Robyn1007]

Jen, I've been watching this thread with nothing to offer but am so glad to hear that the appointment went so well! Hugs to you and Ada. :)

[Debralynn]

Wow Jen, So happy to hear good news for you! Good luck. Debralynn

[mom2threeboys]

Hello,

I just found this thread and wanted to see if anyone could give me any information. JenZen- I wanted to see if you could tell me what your DH head measured. We are hoping big heads run in our family too.

We are worried because we just found out our baby's head had been growing too fast. His head measurement for 9 months was 19 1/8-19 1/4 inches. The doctor had said we need to get a CT scan to rule out hydrocephalus. We are hoping he just had a big head but don't know if DH or my head is considered big. He doesn't seem to have any delays cognitively. He does have acid reflux or at least that's what he was diagnosed with. As I read info. on the internet one symptom of hydrocephalus is vomiting so then I started to worry......I'm sure you all know how it goes.

Any information would be greatly appreciated. My baby's CT scan is scheduled for Tuesday.

Thanks.

[JenZen]

mom2threeboys - Scary, huh? I know exactly how you are feeling. I'm looking at my neurologists notes, and it says DH's head was 60.5 cm with a height of 181 cm. I think adult head circumference goes off of height. Mine was 57 cm with a height of 160 cm. My son, Gabe, also is off the charts. He hasn't been measured in a while, so I took a measurement a few nights ago, and he's above the 95th curve. Should be interesting to see what my dr. says at DS's appointment after all of the worry over Ada's head.

The CT is really fast and pretty easy. I'm sure everything is fine. The more I read about this, the more cases I'm running in to where everything turned out normal.

Our neurologist said to watch for the soft spot bulging, bulging veins on the head, vomiting upon waking and unparellel development.

Ada actually spit up when she woke up this morning, which freaked me out. But, I had just fed her a bottle about an hour before, so I'm thinking that it was from that ...

PM me if you have any questions.

Jen

[mom2threeboys]

Thank you so much for your reply. I feel better. I'm hoping the CT scan is fast and they don't make him wait too long. I'm glad I heard "sweetpea's" story so that I am prepared if it doesn't go fast. My husband's head measured about 24 inches and he is 5' 9" so it seems like he has a big head too :) Good luck to your little girl too.

Jennifer

[JenZen]

Mom2threeboys - Any updates?

[mom2threeboys]

We had the CT scan yesterday and it was fairly simple. The techs were very nice (thank goodness). I still had tears in my eyes when they strapped him down though. He didn't cry until they taped his head to the board. He was definitely scared but hopefully won't remember it. My husband was able to stay beside him the whole time. We're waiting for the results.
I hope all is well with your daughter. I will write when we hear more. Praying the results are normal!

Jennifer

[Debralynn]

Jennifer, I hope all goes well and you get good news. My prayers are with you. Debralynn :)

[mom2threeboys]

We got the results back today and they are normal. Thank Goodness. I asked the doctor why his head is large and she said that he just has a big head which I think my husband does too. So much worry, but thank God it turned out alright. Thank you for all of your prayers. :)

Jennifer

[JenZen]

Updating again ...

We saw the neurologist again last week, and it was a very reassuring appointment. We were only there for about 15 minutes or so, and the dr. basically said, "Forget about this. You have a beautiful little lady." She said Ada is right on track with her development and there are no signs of hydrocephalus., even though her head continues to grow off the charts. The dr. said Ada is basically creating her own growth curve, albeit way above "normal."

We go back once more when Ada is 18 months, and then the neurologist will '"release" us. (Such a funny term!)

We then saw our regular dr. on Friday, and I had to bring him up-to-speed on everything because he hadn't seen any reports from the specialist (Grrr...). He still didn't make me feel that great about the situation, so I'm not sure if I want to continue seeing him. He has stressed me out! I told him I wasn't too keen on how he handled Ada's 9-month visit (with talk of brain shunts and whatnot) and his response was that he felt he had to bring those things up because I kept asking questions. I mean, he actually said at one point that Ada had a 50-50 chance of needing a brain shunt. He also told me that because her soft spot wasn't closed, "something must be wrong."

So anyway, I'm torn about whether I should continue seeing him because until now, I've agreed with him on important matters (Breastfeeding, antibiotics, etc). He's delivered both of my kids and been my dr.

So, that's it from here for now.

Jen

[Debralynn]

So happy to hear good news !!!!!! Now, as you said, this doctor is stressing you out, go with your gut and go with a new doctor. He isn't helping, he is stressing. That's my opinion. He should have had all of the reports from the specialist, that was his responsiblity not yours. Time to switch. Thrilled about the good news for you and yours. :) Debralynn

[Gecko]

Jen that is great news. I think it may be time to change Dr.'s too. Even if you were asking a lot of questions that does not give him the right to scare the heck out of you. All he had to say was that he understood that you were concerned but that he couldn't answer anything until after Ada had some testing and saw a specialist. In times like this, where it is easy to stress out over the what may be's, I think you need a doctor who is the voice of reason, not the devils advocate.

[Robyn1007]

Oh, that is wonderful news! I agree with the other ladies that it's time to start looking for someone new. This is a much better time to do it now that you are more calm and educated about your daughters health situation so you're not feeling frantic. Take the time to seek referrals from trusted sources and interview the doctors about their treatment philosophies and their bedside manner. That way, heaven forbid, something comes up later you'll have a trusted ally in your children's health. (((Jen and Ada)))

[RunnerKim]

Great news! What a relief.

I agree with everyone else and your own gut instincts about finding a new pediatrician. My kids have a couple of (somewhat minor) chronic health conditions and I can't tell you how important having a great relationship with their pediatrician has been. You need someone who really listens and knows how to answer your questions appropriately. AND it would be a huge red flag to me that he hadn't followed up on his own over what were obviously very important tests (if he was really thinking there was a 50% chance for a shunt) - and if he wasn't really that worried about it then he lied to you. That's perhaps too strong a word - misled or whatever. So either he should have been so concerned he was following up himself or he shouldn't have portrayed the situation as drastic as he did. Either way I would have a hard time continuing to see him.

Kim