Braelyn's Story

[RSUDDUTH]

I'm a nurse in our local Emergency Department. Several months ago a kid walked in my triage office with a prominent ridge (it was very narrow like a fish fin) from the crown of his head to his nose. The mom stated that his suture line had closed prematurely and they were "watching it for problems". They may or may not have covered cranio in nursing school, but it was a new concept to me. So, of course when I got home I started feeling my 2-3 month old daughter's head. I thought I might have felt a ridge, and as luck would have it she developed her first fever & ear infection the next day. So, during that pedi visit I mentioned the "head thing" and the pedi said her head felt and looked fine. So we went on with life.

Over the past month, I've noticed that the ridge became more prominent and so I brought it up during her 9 month well check. The pedi agreed to order a CT. The CT reading was "normal". It did state that the metopic suture was fused--no mention of the small, but noticeable ridge. The next night at work I had the CT tech bring up the images for me. There is a definite, yet small, ridge that extends from her fontanel to her nose on the 3D views. Although, it is only palpable and visible (externally) from the fontanel to the hairline. Her forehead feels flat. When looking down on her head, the back is definitely wider than the front (kinda like a trapezoid). It does not come to a point, nor do her temples dip in much. Her eyes look normal distance apart to me.

I'm hoping that we will be one of those "ridge without Trigonocephaly that does not require surgery". But after reading about all the little ones that did require surgery, whose CT reading was also "normal", I feel the need to exhaust all resources to be reassured. I don't want her to have to have surgery, but I also don't want to overlook something and have her end up with developmental delays, vision problems, seizure disorder, etc.

I acknowledge her forehead does not look like most of the metopic kids' foreheads on these sites. Her protruding occiput does concern me a bit, as other's CTs I've seen on the sites demonstrated a wide and rounded occiput. Not to mention the fact that the CT tech said "That's what looks odd to me." This is someone that looks at hundreds of these day in and day out.

Dr Jimenez in TX has agreed to look at her CT and photos for me. I will talk to him about the need for an opth. consult. That is our next step at this point in time. Will update with more info as I have it.

Below I have choosen the two views from her CT that best show her ridge and her occiput (back of the head) for you to see.

http://www.hurricanetrack.com/ct/bss_ct_1.jpg

http://www.hurricanetrack.com/ct/bss_ct_2.jpg

[xl1200c]

Welcome again, and thanks for sharing. I hate that we moms are made to feel like we are looking for a problem, when in reality we are looking for peace of mind. In so many cases it is the mom's own instincts that have led to the diagnosis - as if moms didn't have enough to figure out on their own...

I think you are being very reasonable about your questions and research. I too hope that your child won't need surgery. Either way, we're all here for you and happy to help.

[three.little.boys]

Hello- Welcome to CranioKids. My son, Quintin is metopic. My son's head presents differently then most metopic's heads do. You can see and feel a ridge on his forehead, but is not that severe. BUT- Quintin's head has bulges over his ears , among other strenge shapes. I am concerned that Braelyn may be presenting as metopic like my son Quintin.This is how I explained it to another mom (I copied and pasted so I don't have to type it again!):

"Have you noticed how some metopic kiddos have VERY pointy foreheads, but the rest of their head is pretty round. On the other hand, Quintin's forehead is not so pointy, but the rest of his head is misshapen. Dr. Fearon said that metopics usually take one of those 2 forms. Either the brain grows and pushes out the metopic suture even further to a major point, or the metopic suture can't budge at all, so the brain must push out on the remaining sutures. This causes the lambdoidal, coronal and sagital sutures to expand and the skull gets bigger in the back and taller on the top. Dr. Fearon said that Quintin's type of head is perferred as it is easier to fix. He said that the flatness will still be there on Quintin's head after surgery. But, since his surgery will allow his metopic suture to expand, then his head will eventually "round out" as it grows...there will not be that added stress on the other sutures afterwards. Hope this helps you understand!!"

#1: I am not an expert...but there is NO WAY that your daughter's metopic suture is not fused!!! There should be a visable line there, as in her other sutures...and it is not there.

#2: I am very concerned about how her skull bulges way out in the back (seen in photo #2). I fear that perhaps Braelyn's brain, like Quintin's, can not expand any more in the front, so it is pushing out where ever it can...and in your daughters case, it looks like it is pushing way out in the back.

I am not an expert, just a mom who has looked at a million photos and CT scans. Please do not let what I said scare you. Press further to find out for sure. Our surgeon, Dr. Fearon in Dallas, allows anyone to e-mail CT scans and he will give you his opinion. His e-mail address is: cranio700@aol.com (http://www.thecraniofacialcenter.org/Work/cranio700@aol.com) . His web site is full of great info. Browse through it if you have time; http://www.thecraniofacialcenter.org/deformities.html

Good luck. You are doing the right thing by seeking out more answers. If you ask most of us, you will find that we had to diagnose our kiddos ourselves!

Keep us posted, please!

Sincerely,
Sadie

[RSUDDUTH]

Braelyn's skull does bulge a little above her ears. I'm beginning to think she definitely has some form of metopic craniosynostosis. I'm hoping she's a "mild form" that won't require surgery, but worried she's just in the beginning stages and might. I had e-mailed your doc in addition to Dr. Jimenez, but only heard back from Dr Jimenez. I'll try your guy again. Can't have too many opinions, huh.

[xl1200c]

What was Dr. Jimenez's feedback?

[three.little.boys]

Can you post a pic of your little cutie??? Do you have a CT Scan from the front angle?? My son's CT Scans are on the "quintin's story" page (see link on my siggy)....if you want to compare CT scans. Also, your daughter does have a nice big open sotft spot...Quintin has ZERO soft spot!!

Sadie

[mrs j]

Hi again Becca, thanks for sharing your story so far, you are doing a great job by pursuing this, i def agree with Sadie, the back of her skull is a bit worrying, Bradley's skull is very flat at the back, but bulges out quite a bit at the top corners on both sides at the back of his head, i dont have any ct pics to show. You are doing a good job, please let us know how you get on.xx

[RSUDDUTH]

The CT & photos are going in to Fed Ex today to Dr Jimenez & Dr Fearon (I had an e-mail from him this morning, Sadie :icon_mrgr ). I will let you all know what they say when I hear from them.

[Tawnia]

She is definitely metopic. Whether or not it needs surgery will be up to the Dr. but I do agree that the back of her head seems to be compensating and if that is true it will get larger and more prominent as her head grows...it won't just "go away"

[three.little.boys]

so what happened????

[RSUDDUTH]

I haven't heard from the TX MD's yet. I'm almost scared to answer the phone, for fear of hearing what I don't want to hear! Anyone else out there that sent CT's to Fearon or Jimenez, how long did it take them to contact you and did they communicate by phone or e-mail?

[jennifer kichar]

How long ago did they recieve them?

[RSUDDUTH]

Thank you for your patience to all of you that keeping asking to see photos of Braelyn. Unfortunately life has continued to go on for the rest of my troop, and so between work, school, soccer, basketball, dance, etc. etc. I have not been able to sit down and format these...until now.

I acknowledge her forehead does not look like the typical metopic forehead. And, her prominent occiput is not as obvious in these photos. Notice how her "trapezoid shaped head" from the top looks a little long? What do you all think?

BTW, Dr Fearon called and left a voicemail on Friday. So, hopefully I will have an official specialist's opinion soon!
http://www.hurricanetrack.com/ct/brae1.jpg

http://www.hurricanetrack.com/ct/brae3.jpg

http://www.hurricanetrack.com/ct/brae2.jpg

[Amy K]

I think she looks great! I have daughter who had/has a prominent occiput..in fact most of my kids do. When she was a baby we always thought it looked odd. But she didn't have any narrowing of her temples or bossing of her forehead. So I think some people just have heads like that.

Now that Camden has had the back of his head worked on, it's more flat than it probably should be for him, genetically speaking.

[RSUDDUTH]

After a week of playing phone tag with Dr Fearon, I still have not spoken with him. However, I did get an e-mail from Dr. Jimenez's nurse. Here is what it said:

"Dear Becca,

I just got Dr. Jimenez' response. He states, "No
Trigonoephaly (Metopic), has a minimal ridge. No surgery required, normal brain." Good news isn't it? I know you are happy to hear this. If there is anything else I can do for you, please let me know.

Sincerely,
xxx xxx, RN
Case Manager
Dept. of Neurosurgery
xxx-xxx-xxxx"

I'm sure it's just the neurotic mom in me that is worried that something might get missed, but I'm still not relieved. I think her ridge might be getting bigger--again, probably the neurotic mom in me. I think I'm realizing that waiting for these long distance consults to try to avoid a day trip to the nearest pedi NS/PS is not going to save me a day trip after all. I think I'm going to need to have someone lay hands on her and give the same opinion before I can let this go.

[Amy K]

I totally understand wanting a surgeon to actually examine her. I'd want that too. This is interesting because Camden's metopic suture has started to make a "ridge". (He had sagittal surgery 5wks. ago) As long as it stays like it is, I won't worry. It can be felt, but not seen. Well you when his hair is wet you can just see a slight point on the top of his forehead. I guess it's one of those things that you just have to give time and see if it gets worse or better. Hang in there!

[RSUDDUTH]

Okay, got an appointment set with Dr Fuchs at Duke for the 25th, they offered me an appointment for tomorrow--but I couldn't rearrange things that quickly. I'm open to any suggested questions I should ask during the visit.
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[three.little.boys]

Don't know what to say except for good luck!! Seeing the top of your daughters head makes me feel better about her needing surgery. If you click on ther link below on my siggy and go to "Quintin's story" you will see that his head was very triangular. Your daughters head actually looks pretty good! The only thing that still concerns me is how far back her head goes over her back??? Sounds like you are on the ball with this, so I am sure you will have answers soon! Great job, mom!

[RSUDDUTH]

Unfortunately, we have to reschedule our appointment. And so, I get to wait another month for someone to lay hands on her head and tell me she'll be fine. Thanks so much to those of you that checked on us to see how the (missed) appointment went.

[RSUDDUTH]

Dr. Fuchs confirmed my suspicions of mild metopic cranio, and because she is mild should not need surgery or even follow-up. I'm kinda uneasy about the no follow-up plan with all the stories about mild metopic kids that ended up with autism or developmental delays or chiari malformation, etc. But he feels my pedi can monitor her progress, and she probably can. So, there you have it!