Monday, March 03, 2008

Headbanging

I don't think I've ever mentioned this before, but Bat Girl has a flat head.

To be precise, she has mild positional plagiocephaly--the rear right quadrant of her skull is flattened and the rear left quadrant pushes out very slightly. We first noticed the flat spot when she was around three months old, but in retrospect it's likely she came out of the womb that way, given the cramped conditions and her breech positioning. (Her right ear was also smushed and folded almost double for the first few weeks of her life.) She has always favored turning her head to the right, so it's also possible that she had very mild torticollis, especially in light of her resistance to nursing on my right boob (i.e. turning her head to the left). If she did, it was very mild, as she has no problems with range of motion now.

At her four-month well baby visit, we pointed out the flat spot to the pediatrician. She was unconcerned and recommended that we do some repositioning (bolstering Bat Girl when she slept so she turned to the left, etc.), which we had already already doing, and we left it at that. However, by this point Bat Girl was already rolling over and mostly slept on her tummy or side. Everything I read about plagio said that mild cases usually resolved themselves once the child started rolling and crawling, so I wasn't worried and pretty much forgot about it. We made an effort to keep her off the flat spot when we remembered, but it wasn't an obsession or anything.

By the time Bat Girl was 9 months old, the plagio was definitely no better, and in fact I worried that it was getting worse. Was her head bulging out to the left? Were her ears still misaligned? (Earlier, her right ear was visibly set further forward on her head than the left.) I brought it up to the pediatrician again, who took another good look at Bat Girl and said, essentially, yes, she has a flat spot, but it's not that bad, she doesn't need a helmet, and once she grows some hair you won't even notice it.

But I kept obsessing about it, on and off. I'd go through periods where I thought, oh, it's not so bad, you can't even tell. Then I'd catch sight of the top of her head in a mirror and think, holy crap, and then spend two or three days googling pictures of pre-banded plagio babies' heads until I worked myself into a panic. But I thought it was probably too late to do anything about it, and to be honest, I really did not want Bat Girl to wear a helmet. I just didn't. So I stuck my head in the sand.

Over the last month or two, though, I've read about Statia's battle to get the Mini banded, and have emailed with her about her experience, and I started to think, why not just see a neurologist and get it checked out, just for peace of mind? So last week I prepared myself for battle and called the pediatrician. Who, of course, gave me no hassles at all about it and gave me the names of 4 pediatric neurologists. Only one of them accepts our insurance, so I called the office to make an appointment. Here is how it went:

Me: I'd like to make an appointment with Dr. Fancypants.
Bitchy Receptionist: What's the diagnosis?
Me: Plagiocephaly.
BR: And how old is the infant?
Me: Actually, she's a year old.
BR: Oh, Dr. Fancypants doesn't see plagio patients older than 10 months. Why are you just calling now?
Me: Our pediatrician felt it might get better on its own, but it hasn't really improved, so--
BR: Well, it's never going to improve. It's too late, her skull has hardened.

AARGH! Setting aside the fact that YOU, BITCHY RECEPTIONIST, ARE NOT A DOCTOR, AND IN FACT HAVE NO MEDICAL TRAINING WHATSOEVER, I have read of plenty of cases where children have been banded as late as 18 months and shown improvement--not as much as if they were banded before 9 months, true, but it's not totally unheard of. Also, WTF?!?!?!?!? Why not just tell me, "I'm sorry, Dr. Fancypants doesn't see plagio patients older than 10 months"? You could even add, "He feels that after 10 months is too late for treatment." There is no need for you, bitchy receptionist with no medical training, to editorialize and diagnose MY child over the phone. Ugh.

Unfortunately, my default reaction in cases such as these is to fall apart and start to cry, rather than opening up a can of whoop-ass as this woman so richly deserved. So instead of ripping BR a new one, I hung up and felt like the worst mother in the world. Why hadn't I pushed for a referral sooner? Was Bat Girl's head going to be fucked up for the rest of her life, and would she resent us forever for not fixing it?

I'm still debating whether to call around and see if one of the other neurologists our ped recommended will see Bat Girl. It will probably cost around $350 for the appointment (that's average for a non-insurance-covered office visit around here) and it seems likely that another doctor will tell us there isn't much they can do, given that BG has passed the optimal banding age. The money is definitely a factor--obviously if it would help BG, there's no amount of money I wouldn't spend, but if it's just to be told "Sorry," I don't know if it's worth it. The head shape looks bad from some angles, but other times it seems fine, and honestly I've been looking at it so much, I don't know what to think anymore. Her ears have definitely evened out, so maybe it's getting better.

My main concern is that it not cause other problems for her down the road, and it seems like long-term effects are usually in severe cases where there's facial asymmetry. BG doesn't have any facial asymmetry due to the plagio--back in September she was diagnosed with mild ptosis, but after the Bitchy Receptionist encounter I called the pediatric opthalmologist we saw back then (whom I LOVE, btw, if anyone needs a ped. opthalmologist in the Big City area) and he assured me that the ptosis was "100%" not caused by any head shape irregularities. (And I believe him, because I also have a slight asymmetry between my eyes, as does my dad.)

In the end, it comes down to the guilt, as always. Guilt for not noticing sooner, guilt for not being more aggressive with repositioning--we turned her so her head faced the other way when she was lying down, sure, but we could have also changed the way we held her during feedings, etc. etc. On the other hand...we did tons of tummy time, she spent no time in a car seat and very little in a bouncy seat or swing (was in-arms practically constantly her first three months of life), she rolled over and crawled early, so what else could we have done? Other than call a doctor and get her banded, of course.

At the very least, this is another fun thing we can blame on my stupid uterus. (Intrauterine crowding due to twinning, uterine anomalies, and/or breech positioning can lead to plagiocephaly. Too bad our pediatrician didn't know that, or didn't mention it when BG was two weeks old and I told her I had a UU and asked if there was anything we should watch out for in BG as a result--she said, "Nope, nothing!") And we like blaming things on my stupid uterus.

I don't know...forgive all the rambling. What would you do?

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23 Comments:

OpenID scarredbellybutton said...

I'd give cranio-sacral therapy a try, could even work out cheaper than going the neuro route.

2:53 AM  
Blogger Meg said...

I would lie to the receptionist and try to see the doctor directly. Or else call the pead and get even more numbers of specialists - may be there's another one you can use through your insurance, even if you have to travel a bit?? (Sorry, I don't know the health care system in the states, I am jsut guessing...)Bring papers showing the cases where banding was done on older children.

EL - I know how distressed you must be. this isn't meant to be a platitiude, i promise. But if worse comes to absolute worse and no one will do anything, I honestly think from the picture that once she grows real live big girl hair, it will hardly be noticeable.

4:37 AM  
Blogger Rachel Inbar said...

This comment has been removed by the author.

7:53 AM  
Blogger Rachel Inbar said...

I don't know if this is what you want to hear, but her case is very similar to my daughter's. I always knew that her head was somewhat lopsided & when I talked to the doctor about it, he said that surgery would expose her to unnecessary risks and that since it is purely a cosmetic issue that we just recommend (to her) that she never shave off her head... Since it made sense to me, I didn't pursue it. She is now 14 and the only difference it has made in her life is that when I made her pigtails on both sides of her head one had a little more hair than the other... I don't regret not having interfered. I think that if the issue is only cosmetic and that even that is minor, I would just drop the subject and wait for her hair to get a little longer.

BTW, my daughter is fully aware of the fact that her head is slightly misshapen and she really doesn't care. I just asked her what she would do & she said definitely leave it because it's so meaningless...

8:00 AM  
Blogger MoMo said...

I am sorry I can't really add anything helpful in this subject. But maybe call the peds again and see if you can get a few more names of specialist. It is such a big city, there is at least another doctor who accepts your insurance. And looking at the picture, I can't even tell, so maybe once she grows her hair you won't be able to tell. My dad has this issue-back then they didn't see this as a problem. And you can't tell(plus my dad has super fine asian hair!!).

9:45 AM  
Blogger BrooklynGirl said...

I'd go to another doctor--even one that doesn't take your insurance if you have to--just for another opinion.

(Or maybe you could keep calling Dr. Fancypants to see if you get a less bitchy receptionist?)

10:14 AM  
Blogger Meira said...

One of my twin's head's is like that -- I wondered about it, but then decided it wasn't bad enough to be meaningful -- and now you've got me doubting myself, lol!

But really, I would probably ignore it. That said, if you're not going to ignore it, I would totally do as Meg suggested & lie to BR!!! Just for the pure joy of getting one over on her, even! And then swear that she never said anything to you about that! Really!

I'm really very excited about the idea of this. My life is obviously very small, lol.

11:25 AM  
Blogger Becky said...

Oh, you poor thing. Parental guilt is the worst.

Here's what happened to my son (The Big One, who is now 6). After years of laying flat on his back, his head is still slightly flat on the back (looks a wee bit like the picture of your daughter), but unless his hair is wet, it is undetectable.

That said, raise holy hell with the receptionist of the neuro who takes your insurance, or keep calling back until you get someone else. If the MD can do nothing else once you've actually seen him, you'll know that you tried.

I'm a nurse, and if you want me to call and give this stupid chick hell for you, I so will. I would be MORE THAN HAPPY TO DO SO.

11:45 AM  
Blogger Jody said...

ONLY because you are still anxious, I would get that appt with the in-network neuro. Several approaches come to mind: (1) Phone back, explain that your doctor INSISTS the neuro see your child, and you MUST have an appt, regardless of age -- don't hang up w/o slot. (2) Phone pediatrician and find out what magic words you can use to get referral from in-network doctor, call back again. (3) Phone pediatrician, explain problem, beg them to make appt for you.

Okay, so with peace-of-mind logistics out of the way (because any way that appt goes, you're going to walk out knowing you did the very best you could for your child), I have to tell you that one of our girls had a benign form of hydrocephalus that left her with a large, misshapen head. She's the only one of the kids who has, for lack of a better term, the classic preemie head (flattened on both sides). Does it bother me sometimes? Yeah, a little. But it doesn't bother her, and it's certainly not affecting her amazing gorgeousness. I just wish she was 120% perfect, instead of 100%.

Good luck, there's no reason why you can't get the appt your pediatrician thinks you need.

12:38 PM  
Blogger May said...

I'd call the insurance company directly and get names from them of doctors you could see. You'll feel better if a specialist tells you to leave it alone, which is what I imagine they'll do, but I think it's worth hearing.

2:10 PM  
Blogger gaelen said...

How caring of that receptionist to go to medical school but take a job as a receptionist just so she can dole out medical advice over the phone, saving you both time and money.

Ugh! That receptionist is a cow. How dare she?

Anyway, I think Bat Girl's head looks fine. My baby's head isn't perfectly round either and, in fact, looks a little like Bat Girl's head. I've seen a lot worse where you can SEE that the baby needed the helmet, but I bet if I were to see Bat Girl in person, I wouldn't even notice it.

Having said that, you might feel better to hear a doctor's opinion. At least you won't keep wondering what would have happened had you spoken to a doctor. Barrel your way through the bitchy receptionist or make an appt with another doctor. If you're still wondering about Bat Girl's head, certainly don't let that receptionist be the last word.

3:53 PM  
Anonymous Ewokmama said...

If it's purely cosmetic, I wouldn't worry about it. It doesn't look that bad and I'm sure once her hair grows it will be completely undetectable. How many people even get that view of a head, ya know?

If you want to try the neuro again for your peace of mind, perhaps your ped will be willing to call him directly.

7:01 PM  
Anonymous Anonymous said...

Hey, it's Ornery...remember me? I've fallen off the blogging radar, but still try to check my favorite blogs whenever I can, though I've gone back to lurker status and rarely comment anymore. However, I'm delurking because I wanted to let you know that I actually have a pretty bad case of plagiocephaly...if I feel around my head, it's quite the fascinating topography. There's a cone-shaped protrusion at the top right side, a wide ridge just below it, and then a palm-sized pancake portion smack dab in the middle. I also have some very mild facial asymmetry (one cheek is fuller than the other) that may or may not be a result of the plagiocephaly.

I know this makes me sound like I'm some sort of deformed monster, but really, I'm not! No one has ever noticed anything about my head or facial asymmetry. And, to be honest, I actually kind of like having such a weirdly shaped head that no one knows about except me. Of course, I'm terrified of going bald, but otherwise, the plagiocephaly has not affected my life one iota.

I mention this not to dismiss your concern. Hell, if anyone knows about parental guilt it's me! I think that the advice the other posters gave you is wonderful and don't have any more suggestions to add. I just wanted to let you know from the perspective of the plagiocephaly "victim" that, at least for me, my weird head has never been an issue.

1:03 AM  
Blogger Thalia said...

I dunno. You probably don't NEED to do this in a purely medical sense, but I imagine you aren't going to feel happy until you've had her seen by a specialist, so I'd follow some of the strategies suggested to get an appt with this doc. Have you tried googling him to find articles he's written? The articles usually have the email address on them so you can get in touch with him directly and avoid that horrible woman.

But her head really looks fine to this uninformed observer.

6:17 PM  
Blogger TeamWinks said...

That was not exactly best business practice by the receptionist. Hell, it wasn't even decent human being common courtesy. Sorry that she was so awful.

I agree with Meg. Once she has more hair, it won't be as noticeable.

7:37 AM  
Blogger B said...

I just wanted to pipe in that, much like Ornery, I also have a misshapen head, although I never knew anything about it your post. I have the same indentation on the left side of my head that your daughter has. It looks as if it is almost even the same depth and size comparably.

Besides realizing that I can never shave my head if the urge strikes me, it hasn't affected me. I don't have any known facial assymetry, but I'm open to a reevaluation if someone wants to stare at me for a while.

Sorry about the receptionist. I think the other commenters have given you some great advice about where to go from here.

9:49 AM  
Blogger statia said...

You should join the plagio board on yahoo. They've been a WORLD of help, and honestly, her head is kind of shaped the same way as the Mini's. Email me. We can talk more.

I will say though, that it's complete BULLSHIT that babies can't be banded after 10 months. While the Mini's head isn't perfect, we banded at nearly 11 months and even after a month, we've noticed a difference. Not perfect, but we're already happy with it.

11:54 PM  
Blogger statia said...

Oh and dude, Ornery? You have a misshapen head? You're right, never would have noticed. Also, where the hell have you been?

11:56 PM  
Blogger Isabel said...

To me, your kid's head looks very, very slightly lopsided. I don't think I would even have noticed if I weren't trying to see it. Please don't beat yourself up over it.

12:02 AM  
Anonymous Kath said...

Dear Electriclady, I looked at the picture for about three minutes straight, and of that time I could see it, sort of, for one minute total, and for the other two minutes I couldn't tell at all. And this was me actually searching for a problem, on a head covered with fine baby hair. I don't want to dismiss your concern at all -- and can imagine what a lovely flavor guilt is adding to the mix -- but I honestly don't think it will be noticeable to any but the most non-casual observers when her baby hair is replaced by the more grown-up version.

That receptionist is a class-A bitch. She obviously gets off on that small bit of power she is able to wield. I would try to find some way of letting the doctor know his "help" is doing this.

1:58 AM  
Blogger Watson said...

I thought I'd commented last week but I guess not, sorry I am such a doofus.

I'd try for the app't anyway and take scarredbellybutton's suggestion of looking into cranio-sacral therapy, I have heard good things about that.

I will be checking back because Jackson has the SAME EXACT problem, same side of his head and same exact shape as you show in the photo.

At his 2 month the doc didn't seem too concerned and even though we've tried repositioning he still sleeps on that side and so I better get off my ass and look into it since he's almost 4 mos. now.

You, Statia, The Waiting Line, so many dealing with this now -- CRIPES. Good luck and I know this is a hard decision/thing to be dealing with!

7:09 PM  
Blogger Kbreints said...

Sam's head is similar and after asking my doctor about it have decided to forget it. Once kids get their hair-- it will not be as noticeable anyway-- until then imagine all of the adults that have heads like that and you cannot see it b/c of the hair. Heck-- I have a flat spot onteh back of my head.

1:02 PM  
Blogger YA said...

Fellow UU here. My son's head is like that actually is was really flat when he was 6months and his right ear was pushed forward some and his forehead was protruding some on the right. When I went to the head shape clinic here they scored him a 5 out of 10 and said they do not do the helmet unless they score a 7 (I thought his head was bad) he is now just a yr and he is not as flat but I'd say a bit bumpy his ears are almost lined up. I was at the Dr the other day and she said that by the age of two his head should be back to good because the head still is growing.

I tried to get a photo of it but he would not stay still for me.

Be the mama bear if you feel it needs to be fixed, don't feel guilty.

My son still has days that he is tight on that side because his head will be tilted that way.

1:19 AM  

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