Daughter and possible Hydrocephalus?

[MacKenzieLeigh]

Here is my dilemma. I am hoping that someone will have some insight for me. My daughter Jocelyn's pediatrician wants to have a CT scan done on her head b/c it is large. She has already had an Ultrasound done when she was 4months old and it came back perfectly fine. But she is 6 months old now and her head grew another inch from 4-6 months. I really need a second opinion. But obviously a Specialist won't give me one without the CT scan and that is what I really don't want to do. It would require traveling to University of Michigan Hospital, a two day stay, and sedation. I really don't want to go through all of that if it isn't necessary. I have been doing many many days of research on Hydrocephalus, so I am not an uneducated mother that just "doesn't feel like traveling with her daughter to the hospital" or "a mom that just doesn't care or isn't concerned". I strongly feel that this is an unneccessary procedure. I am very uneasy towards the sedation part, obviously because she is so young. Here are Jocelyn's stats. I will also post pictures of her head. I will also post pictures of my head at the same age and a little bit older.

Jocelyn: born 6 weeks early due to preeclempsia
4lb 4oz 17" long and a head cir of 12"
Jocelyn NOW: 6 months and 1 week old
14lb 12oz 25" long and a head cir of 18" (pretty much an inch for every month)

She DOES NOT have: any irritability, hard time eating, fussiness whatsoever, bulging soft spot, lethargic.

she is developmentally on track with being 6 months old (she has already caught up from being a preemie)
And her head circ matches her widest part on her chest, which I read online that from the age 6 months to 2 years a childs head size is usually the same size as their chest measurement. From 4-6 months I have been measuring her head/chest each month. And it has been equal each month. My head was ALWAYS off the charts growing up.  Notice the resemblance in head shape. Large in the back smaller towards the front. If anyone can be of any help I GREATLY appreciate it.

I have pictures on my blog of her head and my head in comparison. www.mackenziesmasterpiece.blogspot.com

[maggiemag]

My son had the same thing!  When he was 3 months old, he went for a routine well child visit and the poor pedi kept measuring and re-measuring his head.  She must've measured his head at least 20 times as she couldn't believe the number.  She thought he might have spina bifida occulta as he also had a tuft of hair at the base of his spine.  He also had major head lag as his head was so heavy and huge. I went for another opinion and they concurred.  He had a CAT scan at age 3 months and did fine.  I don't remember that they sedated him but they must've.  The ventricles WERE enlarged and we were sent to a neuro at the local children's hospital.   The VERY FIRST thing she did was measure my head and his father's.  It turns out that my husband also has a huge head.....familial megencephaly........*big head like Daddy's!*  I had never really noticed either.  The child was followed anyway every 3 months for a year at the neuro clinic.  I have to tell  you, and also brag, that this child turned out to be very highly gifted and a National Merit Scholar and is now a software engineer at Microsoft at age 23.  If I were you, and your insurance will pay for it, I would go ahead and get the CAT.  It will put everyone else's mind at ease, and you will have further evidence.

[Quixotic1]

Oh.....your post makes me wish I was still practicing pediatrics!  First off, and I know you know this, I can only offer you my opinion and you should not rely on it.  BTW, Jocelyn is adorable!  And, no, all large heads do not indicate hydrocephalus.

A story - I am known here on the forum for going on and on, but humor me.

When I was a new, pediatrician in general practice, I had a sweet little baby in my practice who had a large head.  At birth it was near the top of the curve, but grew to well above the curve by about 2 months and stayed there.  Her initial ultrasound was normal. At every visit it was the same amount above the curve, so it was grwoing along, but above, the curve.  She, too was developing normally, but I could not handle my worry and finally insisted on a CT.

The day of the CT, before I got the results, I ran across the mom, the baby and a couple of older (toddler) cousins of the baby.  THEY ALL HAD THE SAME LARGE HEAD!  They were all normal, too.  I told the mom, "If only I had seen you all yesterday!  I'd have never have ordered the CT."  And, yes, the CT was normal.  Benign Familial Megalencephaly. (Normal Big Brains/heads that Run in Families)  Remember that the top line is the 95th (98th) %ile and that means that 5% (2%) of normal kids will have a larger head.  I practiced for 23 years and learned a lot about careful evaluation of growth curves.

Here is are a couple links:

http://www.aafp.org/afp/980700ap/legler.html

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=314781&dopt=Abstract

Note that the 2nd site is from the National Library of Medicine and the National Institutes of Health.  It discusses children whose heads are larger than the 98th %ile.

The first link is very cautiously phrased and only discuss the heads above the 95th%ile.

I have to state that it is the pediatrician's job to recognize and rule/out potential problems.  Thus, I do understand your doc's concern.  But, if Jocelyn's head circumference is not increasing it's distance above the curve, and there are no other concerns like fussiness, vomiting, bulging of the fontanel when she is upright and relaxed, and her development (given her 6 weeks of prematurity) is normal - I would probably be okay with that...I'm not sure.  I was VERY conservative.  Certainly if a parent voiced her objections, and I knew that she understood possible risks, I would likely just follow her and give the mom a list of all concerning signs.  No one can guarantee you, though, that there is not something more ominous going on.  It's just unlikely.

You may have other reasons though for looking for a new pediatrician.  Ear pain/itching/pulling during teething is a VERY normal thing.  The same nerve that innervates the gum sends a branch to the eardrum.  The brain misses up the signals.  Unless the ear was obviously infected, if I felt the gum and there was an erupting tooth on that side, I would watch the baby instead of throwing antibiotics at it.

Your pediatrician also seems to be very wrapped up in her ego, and you're clearly not happy with her.  Consider changing.

Good luck, Quix