May I ask your opinion?

[sthomas]

Hi ladies,

You guys have a great forum here, tons of support. I hope I've posted this in the correct section of your forum and apologize if I have not. I am brand new here and wanted to get your opinion... in general our pediatricians just brush me off, but then again I might be paranoid.

Just to give you an idea of my family history, my sister and 3 out of 4 of my cousins all had cranio and had surgery to correct. Their ages at diagnosis ranged from 6 weeks to 2.5 years old (my sister). These all took place over 20 years ago. I have never been diagnosed with cranio myself, but may have had it in some mild form due to some asymmetry in my face and head. So there is a really strong prevalence of cranio in my family...

Which brings me to this board at the moment. My son is 11 weeks old and I am obviously pretty paranoid about cranio in him since so many people in my family have had it. I've asked our pediatricians to keep a close eye on this since birth, and at every appointment they have assured me that they've checked his head, when all I see them do is briefly run their hands over it. I never see them actually feel his suture lines or fontanels, much less look at him straight on or above his head.

I've noticed a change in my son's face - where once he was nearly perfectly symmetrical, now his left eye seems smaller/lower than the right. His left ear seems further down and lower back than the right. In general, the left side of his face just looks smaller to me than his right. Looking at him from a bird's eye view, the right side of his head seems bigger than the left. I know infants loose their hair normally, but he has lost a LOT of hair when he was born with really thick dark hair, and the baldness is concentrated on the right side of his skull. There is also a strip of hair missing from the back of his head in a line - not sure if this is from him rubbing his head on everything? Also his anterior fontanel was always wide open but now the left side seems much shorter and more closed than the right. I know that suture lines close at different times but it just seems like an odd occurrence with the fontanel change and the facial asymmetry.

Developmentally he is doing really well. I don't see any signs of increased inner cranial pressure, other than he seems to vomit a lot and he is constantly rubbing at his eyes (but this may be sinus related or something). He does like to rub his head back and forth on whatever surface he is on.

The other strange thing is - he was a big baby at birth, nearly 10 pounds delivered vaginally. His body and length have been above the 90th percentile since birth, but his head has never been greater than 30th percentile. Is it just me, or is that strange? I would have thought his head would be more proportionate to his body. The doctor has never seemed concerned even though I've asked several times. His head is growing each time.

My mom is an RN and she has seen all of my cousins and obviously my sister as babies, and she thinks that he might have some fusion on the left coronal suture. I'm making another appointment for the pediatrician to discuss this, but I'm afraid they will just brush it off like they normally do. Do you think I am being overly paranoid? What do I do if they dismiss this again... do I take their word for it that I am just paranoid or do I go out on my own and find someone who specializes in this? Who specializes in cranio now a days? Pediatric neurosurgeons? Cranio-facial surgeons?

If it would help to see a photo of him let me know... Sorry this was so long winded! Thanks for your help!

[mattricia]

Trust your mommy instincts, please (and your mother's...she might have more cranio experience than your ped!) It's a very common theme around here, that peds are are underinformed about cranio. So many of our children's diagnoses followed our insistence that something wasn't right.

With your family history, plus the signs you're seeing (proportion of your son's head to his body percentile, plus the assymetry), you should insist on a CT scan. Yes, it's radiation, which seems to make some peds hesitant, but it's better than finding out it is cranio several months from now, as the assymetry becomes more apparent.

Whether or not it's cranio (and hopefully it's not), we're here for you. Please keep us posted!

[Jennifer]

From what you described, I would guess a coronal fusion (though the missing hair is just a baby thing...not a cranio thing I think :giggle) Of course we would love to see a pic of him. Yes, a pediatric nuerosurgeon or cranio-facial surgeon would be who you would want to see. If you can, just make an appointment with them. If you need a referral- just tell your pedi to write you a referral- if nothings wrong- it's your time, not your pedi's- so no biggy, right?

I hope you don't have to go on this journey, but if you do, it sounds like you already have some knowledge of it and we are here to support if you need it.

What area are you in? I'm sure we have someone in your area that could recommend a specialist....

Welcome!

[dannlark]

Welcome to CK, so glad you found us. Sorry that you've gotten on this crazy rollercoaster, hope that it turns out to be a short ride.

One of the best ways to present your case is in pictures. If you have earlier pictures of his head and take some now, you can use them to compare. I had to do this with my ped. to help her see that, YES!! there was something progressing. AND, it's helpful to you to keep you sane. When you start this journey, all you can do is stare at their heads, it becomes obsessive. You start second guessing yourself allllllll the time... A picture is worth a 1000 words... Take LOTS, at all different angles, top down, angled forhead, side views, etc... And yes, we're all head pickers here and would LOVE to take a gander at your sweetie. Feel free to post some if you'd like.

Ped's don't know everything, and since cranio runs in your family, you have to make sure they are listening to your concerns. The squeaky wheel gets the grease so keep at it. We're here for you! Stay strong Mommy, you're an awesome advocate for you baby!!!

[Tawnia]

It would be easier to answer if we could see a pic. Its important to trust your instincts though!

[Mother of boys]

I agree with the ladies above. I would make an appointment with a neurosurgeon or a craniofacial surgeon. If you have pictures, you can send them to Dr. Fearon in Dallas and he can usually tell just by pictures what is going on. There are many of us here who used Dr. Fearon. My husband was the one who noticed an odd shape at birth and when the pediatrician at Keeson's 2 month checkup look at his head and said don't worry, my husband started his Internet search. That is how we got connected with Dr. Fearon. If you have more questions, feel free to PM me.

Welcome!

[sthomas]

Thank you for the kind words and advice! I am in the Philadelphia area and have looked up the pediatric neurosurgeons at CHOP - do you guys know of anyone in my area that has experience with them?

I'm going to try to attach some recent pictures of my son and hopefully it works. His name is Keenan and most of these pictures were taken over the last week or so. The one where he is over my dad's shoulder was taken about 2-3 weeks ago.

This afternoon we're going to a pediatrician appointment that I made specifically to discuss this. I'm bringing his baby book so they can compare his head and face now to his head and face when he was younger. And I'm bringing my husband, so hopefully we can make some progress with this.

Do you know if Dr. Fearon would look at pictures of him even though we are not local to his area? My mom was also trying to find out if Dr. Walker Robinson was still around, he did the surgeries on my cousins in the 80's.


Let me know if you guys see anything in the pictures. It's so hard for me to tell because I see him all day every day, and I'm super paranoid about it in the first place.

Thanks for your help!

[Lisa]

Welcome and I am so glad you found us.
It sounds like you are already doing all the right things and being a great advocate for your son. He is adorable!!! From your description I would guess a coronal suture is fused. I would strongly suggest your pediatrician reccomend you to a craniofacial surgeon in your area. Pediatricians have proven time and time again on this board to really know very little about cranio and diagnosing. Where are you located? There are many people from all over the US that can suggest some great surgeons. From there you will want them to do a CT scan of his little noggin. They can tell right away if there is any premature fusion.
I wish you the best in your appointment today, and let us know if you have any more questions.

[Jennifer]

He is a doll! In one pictures I see what could be some assemtry in his eyes, but I have to say, to me, the birds eye view he head looks really good. (I can send you Emily's for comparision if you'd like) Of course pictures don't always show what we can feel. I know there are a few on here that have used CHOP- so I hope they pop in soon.

I think when you meet w/ your pedi, one of the first questions to ask would be--- what is your experience w/ cranio. If they've never had a cranio patient that they know of, they may not be the ones to talk to. ??

Good luck at your appointment.

[Wyatt's Mom]

I agree with Jennifer. To me, his birds eye view picture looks great! Sometimes pictures are hard to tell though and if you feel like something is not right, trust your gut.

Good luck at your appointment. Oh, and remember if your pediatrician doesn't know much about cranio you need to get a referral, don't let them brush you off.

Keep us posted!

[dannlark]

Well I think he's such a doll!!! But I was going to say that he looked pretty good until I saw the last one. I don't know if it's his hair at the bottom of the picture, but the head shape looks a little skewed in the back. Is this what you're seeing? I think you are doing the right thing to press the ped for some answers. You have to trust your Mommy intuition, it's always right. And if the ped is useless, ask for a referal, you have that right. Keep us posted!!!! And good luck!

[melsch]

Hi! Welcome to CK...you have quite the handsome little fella! He's a doll baby! I think that following your instinct, especially with your family history is the best thing you can do for him! From my own view, and pictures don't tell everything, I think his little noggin looks good. I'm glad you found us! this site is a great place for support!

[sthomas]

Thanks guys for taking a look! If there is anything going on, it's really slight at the moment. Like I said, I'm not sure if maybe I'm just seeing things because I'm worried due to my family history.



Well I think he's such a doll!!! But I was going to say that he looked pretty good until I saw the last one. I don't know if it's his hair at the bottom of the picture, but the head shape looks a little skewed in the back. Is this what you're seeing? I think you are doing the right thing to press the ped for some answers. You have to trust your Mommy intuition, it's always right. And if the ped is useless, ask for a referal, you have that right. Keep us posted!!!! And good luck!

Yup, that's where I see the asymmetry, at the back of his head the right side looks bigger to me.

I will let you all know what the pediatrician says - thanks again for your help!

[dannlark]

Yes, that's where I was looking... Good luck!! You're not crazy, I see it too...

[AuburnLocks]

He is so adorable!

Hopefully the unevenness in the back is just a touch of positional plagio from sleeping on that side too much. It is so common in kids that age because of the "back to sleep" campaign. Do you ever notice that when he is in bed or in the car seat he tends to favor one side? That can cause the flattening and even the mild facial asymmetry you're seeing.

However, given your family history it sounds like you are right to be concerned about even mild symptoms and it absolutely makes sense to get him checked out ASAP. Why wait and worry. Hopefully your doctor will give you a referral without any trouble.

Hope you get good news!

[evergreenmom]

I surely hope I am wrong, but you are very wise to sort this out asap- the pic and description's you gave are reminding me a little of my boy who has Lambdoid Synostosis the rarest form of cranial fusion. A ct scan is the only way to know for sure. Your son sure is cute though and looks otherwise healthy so try to think positive- he has a bright future ahead regardless!

[sthomas]

Thanks everyone for your help (and for saying that he is a cutie)! Our pediatrician gave us a referral tonight to CHOP's pediatric neurosurgery unit without any problems. She said that everything looks within the realm of normal to her but that it can't hurt to have a specialist check him out. I'll let you all know what happens with this next step.

Do you all know of anyone that has used Children's Hospital of Philadelphia?


Evergreenmom - that's interesting that you say that, my mom had also mentioned Lambdoid to me. What similarities do you see, do you mind me asking? I hope everything is alright with your little one.

[Wyatt's Mom]

I'm glad your pediatrician gave you the referral! Please let us know when you get an appointment!

[Mother of boys]

You asked about Dr. Fearon and whether or not he would look at pictures of someone out of his area. The answer is yes because he is in Dallas and we live in Kansas. My husband found him online, called and spoke to Cindy (his nurse) and she recommended that we send several pictures to him. Dr. Fearon got back to us in less than 24 hours with his personal opinion. He is a specialist in this area and does several of these surgeries a week.

I would have to agree with the moms above. He is a cutie! I used to live in Pennsylvania, close to Harrisburg.

[mattricia]

I definitely remember hearing great things about CHOP, but can't remember who it was...

[evergreenmom]

Evergreenmom - that's interesting that you say that, my mom had also mentioned Lambdoid to me. What similarities do you see, do you mind me asking? I hope everything is alright with your little one.I was reminded of what we have been going through with my lovable little lambdoid boy specifically by your description of differences between your baby's left side and his right. Also, by the vomiting, the eye rubbing, and the hair loss on the "larger" side of his head. From the bird's eye view in your post it does appear to me that your son's head is bigger on the right than the left- however, this could be due to positional plagiocephaly (flattened head syndrome from facing one way while sleeping) in which case he may just need a helmet to correct the shaping. Does he tend to sleep with his head faced left- in which case he may have a touch of tortocollis( also called wry neck- some babies have weak muscles on one side of their neck and tightness on the other side causing them to tilt their heads and face one way mostly).

My son's head had been a bit strange right from birth- I was told he had "a breech head" due to his position in utero. But right when my darling boy was around 2-3 months of age I suddenly became aware that the right side was clearly bigger than the left, and that his left ear was lower and placed more forward than the right. My son had a pretty severe case of tortocollis which actually masked his lambdoid symptoms. Not only my Ped, but the first Dr. we saw at Children's thought he just had positional plagiocephaly. She ordered a Ct scan only after I pointed out the difference in the position of his ears. Unfortunately, in our case the Ct showed the left lambdoid suture to be closed. Fortunately, my son is otherwise very healthy, and developing normally. We are doing physical therapy to correct his tortocollis which is at this point much improved. In addition we have found a surgeon (Dr. Fearon)we are comfortable and confident in and are hopeful that our insurance will pay for his services( still jumping through hoops on that one- send positive thoughts our way please!!) as well as trying to find a way to afford flights and accommodations in Dallas. My husband recently started a new job after being laid off for a few months so the financial impact has just made all of this even more stressful... as if having a baby who needs surgery isn't enough for one family to contend with!!

Anyway, good luck with the neuro surgeon- and again insist on a Ct scan it is the only way to know for sure. Keep checking in here for support- this wonderful forum has really helped me stay sane through all of this- these Momma's rock! Feel free to send me a private message if you have any more ?'s I'm happy to help in any way I can. Best Wishes- Kristin

[Max's Mommy]

I can see that you definately need the advice of an expert at this point. The birds eye view strongly suggests Deformational Plagiocephaly. It appears that the back left looks flattened and the right seems to boss. Of course there are variations of Coronal and Lambdoid that could give a similar head shape so you need to get answers. Either way, deformational when it affects the face is considered a more severe case and also needs to be evaluated and treated by a specialist...not a pediatrician. Does the baby have torticollis?

There are plenty of families that have come and gone through the years that have used CHOP. I can give you an email address of a referal if you are interested. The doctors there are great. The specialist should be able to tell just by looking and feeling the baby's head. With your family history there is a good reson for close follow up even in the case of deformational. With deformational comes the odds of fibrous or sticky suture lines and they need to be watched also.

Good luck. The baby is adorable. GREAT JOB MOMMA! Email me if you want to chat syddesi2@aol.com.
(((hugs)))
Amy

[sthomas]

Thanks for your thoughts guys!

Kristin -You've been through a lot, I'm so glad to hear about your husbands new job. I sincerely hope you guys get your insurance worked out in order to see the surgeon of your choice, and I'm so glad to hear that your son is healthy otherwise!

Amy - thanks for your input! I've wondered as well if it might be just something positional. The only time he is on his back is at night, (and I have him in one of those elevated sleep position things so that I can switch him between his sides and his back) and then when I am changing him. I work from home, so it's just me here with him all day unless I'm at a meeting in which case my mom usually watches him. During the day while I'm working I either have him supervised on his tummy, or I'm wearing or holding him (or breastfeeding). I do notice that if I am changing him he does turn his head to the left more often than the right. When he is sitting upright like in a swing or carseat, I don't notice his head tilting or turned to one side. He seems to have a really strong neck, he has been holding his head up on his own and turning it pretty much since he was born.

mother of boys - thanks for the info! I will definitely do some research about Dr. Fearon, it seems like all of you have wonderful things to say about him.


On Tuesday we have an appointment with Dr. Storm at Children's Hospital of Philadelphia - if you guys know of anyone who has met with him, can you pm me and let me know? Thanks again for all of your help, you ladies are wonderful!

[Mindy]

I used him!!! I can't believe I'm just seeing your thread. I am going to be completely honest with you b/c I did not like him. He made me feel like I was crazy for being there as my child is/was diagnosed as mild with metopic ridging. We first went to see Dr. Bartlett who is the craniofacial surgeon at CHOP. After our f/u with him, he recommended we see the NS just to get confirmation that we didn't need a CT scan. He took one look at Shane and looked at me and my husband like we were nuts for being there. But, that was my experience. I basically wanted him to validate my concerns at least. We new he was mild, but wanted him as a professional to tell us why it would be ok to not get a CT scan and leave it alone. But, he brushed us off so much that it annoyed me. The head of CHOP's neurosurgery dept is Dr. Sutton and I wish I had waited for him, but Dr. Storm had an opening right away and we took it.

If you want to see the thread that I wrote after we saw the NS, here it is:
http://www.craniokids.org/support/showthread.php?t=4522&highlight=shane%27s+appt

I hope you have a better experience than we did. Can I ask why they referred you to neurosurgery instead of craniofacial surgery? I called CHOP myself to book the appt and we were told to see the CFS for this problem first. I LOVED Dr. Bartlett. He is very professional, but still able to answer questions and make you feel like your concerns are validated.

Good luck and keep me posted! If you want to email me directly, my email address is mjlevpt@comcast.net.

[sthomas]

Mindy -

Thank you SO much for responding! I am sorry you had such a bad experience with him. Thank you for sharing with me, I really wanted to hear another opinion before our appointment Tuesday. It makes me nervous to hear about your experience because that is what I'm afraid of as well, being brushed off. I know that anything going on with my son at the moment is really mild, but I want to have someone check it out due to my extensive family history. Our pediatrician just gave us the number for CHOP NS and I took the first available appointment. I'll try not to put too much value in what he says one way or another... and after our appointment is over I might try to get in to see Dr. Bartlett as well.

Did you end up getting a second opinion with another NS?

[Christina's_Mommy]

I'm just now reading this thread. Welcome to CK! My daughter was diagnosed bicoronal when she was 3 mos. old by Dr. Fearon. She had surgery this last Feburary with Dr. Fearon and Dr. Swift. (NS) Good luck to you and keep us posted!

[Mindy]

I didn't end up seeing another NS as I've found that its the CFSs that are most experienced with mild metopics (unless of course there are other neurological/developmental issues going on which there wasn't in Shane's case). Based on Dr. Bartlett's recommendations after our follow-up with him when Shane was 10 months old, we saw Dr. Storm and a pediatric ophthalmologist. Then, our next step was to go see a CFS out of NY who specializes in mild metopic cases if I noticed changes in Shane's head. So, we did that and it turned out great. That is our story.

I'll be anxious to hear how your appt goes with Dr. Storm. Maybe he'll give you more of his ear since you do have such an extensive family history of cranio. I would just be very specific with your questions and if he tells you that its plagio, ask him how he can definitively tell you that its not lambdoid cranio.

Good luck!

[Annie]

<TABLE class=tborder cellSpacing=1 cellPadding=6 width="100%" align=center border=0><TBODY><TR><TD class=tcat></TD></TR><TR><TD class=alt1><!-- icon and title -->
<!-- / icon and title -->:huggHi and welcome to CK...you son is a cutie. I agree if you get brushed off again, i would definitely go see a neurosurgeon or a craniofacial surgeon..it wouldn't hurt, trust your judgement and that of your mom...you have the first hand experience to know about Cranio....keep us posted whether it's Cranio or not.... :pray:hugg:pray
</TD></TR></TBODY></TABLE>

[sthomas]

Hi guys,

I just thought I would update you real quick about the NS appointment. The NS said it is positional because the left side is flattened and the left ear is forward (even though to me it looks further back than the right). He wants us to just keep an eye on it and if his head has gotten worse in 3 months to come back and get a CT scan. He told me that they don't do any surgeries other than saggital prior to 8-10 months. From what I've read though that doesn't seem quite right...? So I guess right now we are just in a holding pattern. I'm not sure what to do from this point, I still feel like something might be wrong and I don't want it to get worse over the next few months, but we're supposed to just wait and see...

[Tawnia]

It depends on the Dr. Ours does them between 8-12 months.

[Mindy]

Hi guys,

I just thought I would update you real quick about the NS appointment. The NS said it is positional because the left side is flattened and the left ear is forward (even though to me it looks further back than the right). He wants us to just keep an eye on it and if his head has gotten worse in 3 months to come back and get a CT scan. He told me that they don't do any surgeries other than saggital prior to 8-10 months. From what I've read though that doesn't seem quite right...? So I guess right now we are just in a holding pattern. I'm not sure what to do from this point, I still feel like something might be wrong and I don't want it to get worse over the next few months, but we're supposed to just wait and see...

So did you like Dr. Storm?

[sthomas]

So did you like Dr. Storm?

Not at all. He was very much like how you described him in your posts

[evergreenmom]

Hi guys,

I just thought I would update you real quick about the NS appointment. The NS said it is positional because the left side is flattened and the left ear is forward (even though to me it looks further back than the right). He wants us to just keep an eye on it and if his head has gotten worse in 3 months to come back and get a CT scan. He told me that they don't do any surgeries other than saggital prior to 8-10 months. From what I've read though that doesn't seem quite right...? So I guess right now we are just in a holding pattern. I'm not sure what to do from this point, I still feel like something might be wrong and I don't want it to get worse over the next few months, but we're supposed to just wait and see...

Once again, I hope I am wrong, but the details continue to remind me of my son's cranio. Xander's left side is "flattened" and his left ear is also forward ( from a bird's eye view it is closer to the front of his face). This is considered somewhat a- typical, and may be related to the fact that he more often sleeps on that side. They nearly didn't send us for Ct scan- they scheduled us for helmet therapy, and then ordered Ct just to "rule out" cranio( in part because his left ear appears a tad lower than the right as seen from behind). After the Ct confirmed it we were told it's like he has lambdoid synostosis, as well as a bit of positional head flattening.

I have read many stories on this forum about parent's having trouble getting a diagnosis from their Ped's and Neuro's, but I don't think I've read of anyone who was wrongly brushed off by a Pediatric Craniofacial Plastic Surgeon. If you are still having that "worried mommy feeling" I would think your next step should be to go see a Craniofacial Surgeon, and insist on a Ct scan. Maybe your Pediatrician could order the Ct scan ahead of time given family history. A Ct scan is the only way to know for sure. I believe Neuro surgeon's are there to assist Craniofacial surgeon's in protecting the brain throughout the procedure however it is my understanding that the Craniofacial Surgeon usually does the diagnosis, and the bulk of the procedure which is the reconstruction of faulty plates. Feel free to pm me with any question's- Best of luck, and again I do hope I'm wrong, and that I'm just being an overly paranoid cranio mom!! Kristin

[AuburnLocks]

:yeahthat
If it weren't for your family history watch and wait might not seem like that bad of an idea since you have a window before either surgery or helmet therapy would be recommended anyway and since Positional deformity is so common and the more likely culprit in most cases like this.

But since this appointment didn't sit well with you and there is a history of cranio in your immediate family, I don't think you would be overreacting to try to get an appointment with a CFS now. Even if they have the same opinion you at least have the surgeon who would be most involved in your sons case either way as the one who is doing the watching. There are some really fabulous neurosurgeons out there but in some of our experiences, cranio cases are kind of small potatoes to them. Keep in mind that they deal with truly life threatening things like pediatric brain tumors on a daily basis. CFSs seem, in some cases at least, to be a bit more attentive when it comes to Cranio and positional plagio. Maybe you can make a case to your pediatrician for another referral?

Good luck!

[btkan5]

TRUST YOUR MOTHERLY INSTINCTS!!! If your ped, won't listen, find one that will!! You are your child's biggest advocate!!!

[Janet]

I agree 100% with Tiffany....if I would have listen to our OLD ped then I would still be observing Fiona's moderate metopic head. Do whatever you have to do.

[sthomas]

Thanks guys again for the support and advice! We have an appointment January 20th with the CFS at CHOP, Dr. Bartlett. Keenan will be just over 5 months old at the time. When he has his next well visit in 2-3 weeks or so I am going to bring up to the pediatrician about ordering a CT so we will see how that goes. Thanks for your help!

[greenprincess]

i agree go see an ns and what they tell you. But from what I say in the pictures everything looks great. But if you have a feeling that somethings is just not right check it out. :)

Amy

[Mindy]

Not at all. He was very much like how you described him in your posts

Maybe that's why he is so available!

Well, I'm glad that you are seeing Dr. Bartlett. He will, at least, give you the time you need and listen to your concerns. Being that you have such a strong family history of cranio, I can't believe that the NS didn't want the CT scan done now. What's the point in waiting? Why not just find out now so you can move on one way or another??

Good luck at your next appt! Keep me posted!!

[evergreenmom]

Thanks guys again for the support and advice! We have an appointment January 20th with the CFS at CHOP, Dr. Bartlett. Keenan will be just over 5 months old at the time. When he has his next well visit in 2-3 weeks or so I am going to bring up to the pediatrician about ordering a CT so we will see how that goes. Thanks for your help!


I'm so glad you are able to see the CFS- hopefully the CT will be normal, and he will put your mind at ease. Best of luck and keep us posted!

[dannlark]

Great news that you're seeing Dr. Bartlett. I hope he ends up ordering the CT for you. It's the cases that don't present boldly that go un diagnosed...that's why science invented the CT!! Good Luck and keep us posted!!!