My son is 3 1/2 yrs old w/ Sagittal Cranio

[manderson]

Hi

My name is Maria and my son's name is Xavier, he is 3 will be 4 yrs old in November. He was first diagnosed with Cranio when he was close to a year. His forehead popped out a little bit nothing major. I just thought he had a big head. Finally a nurse practitioner noticed his head was narrow and referred him to get a CT. They said it was Cranio but the Neurosurgeon said it was a Metopic Ridge. I was relieved. A year and a half later, the nurse practitioner referred him to get another CT and a Neurosurgeon in San Diego says its Cranio and he needs surgery but there may be complications because of his age. He kept mentioning to do it for looks, he wasn't sympathetic but more excited. I know that looks matter to some extent but I need to know that he needs it for real. I am thinking I should get a third opinion. I don't want to put his life at risk. I am so scared and I honestly don't know how anyone could go through seeing their child that way. You are all brave!!
I am also angry because almost 3 years later and we are still going through this. How is it that no one could give me an actual answer until now. Now he is 3 going on 4 and there is more risk with the surgery because they waited so long. He could have had the surgery a long time ago. INCOMPETENT DOCTORS!!!!!

Is there anyone who had the surgery at my sons age or have anymore info on Cranio in children my sons age?
Thank You for reading this and to those who respond THANK YOU

Sincerely
Maria

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[mommyjamieof2]

I have not had the surgery but I do have a older child that has not had surgery with metopic. It is a very hard decision to make there are more risks involved with a older child but he is also still pretty young. My son is 7 our neuro told us it would have still been much easier to treat at 2 when we found out because the bones are still some what pliable but the older they get the harder the bones are to work with. You might try emailing a few other sugeons and getting some more opinions I did and they were all very nice and provided me with their opinions and the information I needed. Finding a surgeon that has experience with older children would be the best thing to do.

[mommyjamieof2]

By the way he is a cutie and welcome :) Before you edited the pics is it his dad in the picture? I only saw it for a minute but it looked like they had very similar head shapes does he have the pointed forehead also? Do you have a baby picture of your son I would love to see if you would share one.

Does your son have any issues you are concerned with other then just the shape of his head? Any delays?

[josh'smommy]

Hugs momma! My son is 3 and is scheduled for surgery for metopic on June 30th. I know how hard it is to hear that this should have been corrected a long time ago and now you are facing a more difficult decision and potentially more difficult surgery. I talked to 3 neurosurgeons and 2 cranio-facial surgeons before I felt comfortable with our decision for surgery. Thankfully, my son has other extenuating medical issues that have also factored into this decision so his is definitely being done for medical need and not cosmetic purposes which removed some of the weight off my shoulders about making the right decision. Follow your mommy instincts!! As Jamie said, make sure to ask the surgeon about their experience with surgery on older children and if need be, find one who does have that experience to get their opinion.

[manderson]

Thank You so much for all of your advice and wonderful support. I am so sorry for whats going on in your lives and family.

[manderson]

To Josh's mommy. I pray that all goes well and GOD bless.
To jaime I will gladly post a PIC and yes that was my husband. Its weird because i have the cone on top of my head like my son and my husband's head looks as if he has knots on his head ill post a pic of him.

[manderson]

This is what I found of Xavier.
To answer your question there is nothing else that I am worried about. He seems fine.2379

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[Nichole]

your son is beautiful! good luck with everything. xo

[manderson]

Thank you Nichole. I wish you luck as well. GOD BLESS
Your son is so adorable.
by the way I was born and raised in the bronx.. :)

[Kate Carey-Trull]

There is a mom on here whose son is around your son's age and recently had surgery, so she will probably chime in. Curious if you have a shot of your son from above, I see the slightly bossy forehead, but his head doesn't look as long and narrow as some, like my son originally had.
Are there concerns about intercranial pressure? If it makes you feel better, I say definitely go for a third opinion and ask about the pros and cons at this point.
Good luck in your decision!

[Amy K]

I'd get another opinion too. I see a metopic ridge, but his head shape looks normal in these views...can you get a bird's eye view? He's adorable! :)

[Nichole]

thank you! where in the bronx did you grow up? we are having JDs surgery here at Monti's children's hospital.

[Nezzy]

There is a mom on here whose son is around your son's age and recently had surgery, so she will probably chime in.

You can find her story in the stories section. I think it is called Jeremiah's Story.

[manderson]

Good morning all

To Nichole, I grew up in the South Bronx, under the train stop in Jackson Avenue.
I USED TO GO TO THAT HOSPITAL, ITS REALLY GOOD. I pray that all goe well. He is such a cute child.

To Heather
Thank you for the info.

To Amy thanks for the advice and I will try to post the pictures of xaviers head tonight.

and

To Kate thank you for the info and support and I willtry to get those pics for you tonight, ty again and God Bless

[Ghadeer]

Hi All,

My name is Ghadeer and i'm a mom of 5 month old baby boy, my son is cranio sagittal baby and I have consulted more than 5 doctors for now about his case and i have 2 different opinions, soome of them are recommending a surgery and some others are advising me not to go with it. I'm really confused and lost and i don't know what to do. what do you think? God bless all your kids:pray

[Ghadeer]

You can find her story in the stories section. I think it is called Jeremiah's Story.
Hello Nezzy,
I have seen your son video and i was really touched and amazed with the results, God bless your angel. My son is Sagittal Synostosis too and I'm flying to USA/Texas next month to see doctors. Can you provide me with your son's surgent contact details and the hospital name so I can contact them and book an appointment with them at the following email address: gkheshen@gmail.com

your co-operation in this matter is really appreciable.

[Katy]

Your son looks wonderful. Such a beautiful little boy. I´m afraid I can´t give any constructive opinion but hope that someone can. If you feel you need a third opinion, I´d go for it. Mummy instincts are often well worth listening to. You could also try emailing one of the surgeons who give an unofficial opinion based on pics and what you write. I wrote to Dr. Fearon in Dallas. Best of luck and I´m so sorry that you´ve been given the run-around.

[andrews mommy]

My son is 6 months and bicoronal, when i read your post i couldnt help but wonder if your dr is the same as ours- Dr.Cohen at Rady??
-erika

[manderson]

Hi Erika

I have heard of Dr. Cohen. I think my sons Dr. wants me to see him. His name is Dr. Meltzer. I am sorry to hear about your son. Are they going to Operate??

[manderson]

To Katy
Thank you for reading my ad and for responding. Your son is so gorgeous. I love his hair color. Thanks for your advice. I have also wrote to Dr. Fearon. Has he responded to you???

[manderson]

To ghadeer

I am sorry to hear that your going through that. I know that must be hard and stressful. I would say get more opinions. You have contacted 5 and only two opinions, I suggest you get a few more. Write to some Dr's. Hopefully you will find an answer. What was he diagnosed with?? Do you have pics??

[andrews mommy]

Dr. meltzer is our Neurosurgeon and Dr.Cohen is the plastic. They're the craniofacial team at rady. Yes they'll be doing surgery on aug. 10th. I knew you had to have met with the same drs as us by your post..Dr meltzer never really acted like it was cosmetic he was pretty quiet actually explained the procedure and we left...i got the cosmetic impression more from cohen, but if you haven't met him yet i would talk with his nurse julie. She is the BEST seriously i wish she was doing the surgery but dr.cohen is good at what he does and me and my fiance are okay with the fact that they dont treat us like were family as long as they know what they're doing and give our son the best care. Also Cohen trained 20 yrs ago under dr kawamoto who is the head at UCLA and is also very known. That too made us feel good to know. will your son be getting surgery?

[manderson]

To andrews mommy.

Thanks that info was helpful but I am not sure yet about the surgery. I want more opinions, I guess!! I am scared and I am looking for really great doctors. I heard of an invasive procedure in New York. So I am trying to find info on that. I pray all goes well on his surgery. Keep me updated on it, I would appreciate it.

Thank you and god bless

Maria

[ethans mom]

Maria-
I just finally responded to your private message.

We, too, used Drs. Cohen and Meltzer, and I agree-call Julie (Cohen's nurse). If you need the number I can send it to you. She is a wonderful and compassionate woman. We really like Dr. Cohen, and I would go see him over Meltzer any day. He should be able to give you some answers. I agree with what someone said, though, that he is definitely most concerned with cosmetics, since he is the plastic surgeon.

Also, from the pictures, I notice the metopic ridge in your son's head but I don't think it is so pronounced to need surgery (only my opinion, and only based on those photos). Did you say he was diagnosed as sagittal, though? Are there other areas of his head and it's shape that they are concerned about?

Sorry you are going through this. Getting the run-around from doctors is the worst when you just want what is best for your baby. :-(

Gretchen

[manderson]

To Gretchen
I will post more pics. of his head. His head is a bit weird...

[manderson]

Xaviers pics of 2 days ago and 3 cat scans


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[Kate Carey-Trull]

When did he have the CAT scan?
To my uneducated eye, it looks like the metopic and saggital were both never open, ie you can't see where they closed like you can on the other sutures. Which I'm sure further complicates things, and your decision. But it almost looks like this kept your son's head wider at points (not sure if that makes sense, but his head is not as narrow as my son's was with saggital but obviously my son was much younger)
You can definitely see ridges and such from the above shot, but the forehead looks pretty broad, ie not trig from the metopic closure.
Best of luck with finding more opinions and your decision.

I was never sure how to attach shots from our CAT scan disc.

[Amy K]

Ok, now these views show a little bit different head...I can see your concern. It looks like metopic cranio from the bird's eye view. And the CT definitely shows the fusion of his metopic and some of the sagittal.. Let us know what you find out and what you decide to do!

[manderson]

To Kate
He had the CT in Oct 2008. I inserted the disk and took the picture with my iPhone and emailed it to myself. Thank you for responding and for your advice, it's very much appreciated.
To amy thank you for responding. I will definetly keep you updated. His CT scan is this Friday and his appointment with plastic surgeon is on July 28. Thank you all!!!!

[Josiah'sMommy]

Maria-
Welcome to CK, as soon as I saw your story I had to respond. My son Josiah just recently had surgery in April at 3 years of age to correct sagittal and metopic closures. Without going into my entire story here, please visit the Our Stories Board and look for "Josiah's Story". We chose to have the surgery for several reasons, one being that he experienced many developmental delays and his head continued to get more narrow around his temples and the shape become more "exagerated" and noticeable as he grew. We nor could any doctor explain to us how his brain was not or would not be impacted while being forced to grow in an abnormal space. That along with the questions from other children as to what was wrong with his head made it clear to me what decision was to be made. In looking at your son's pics I do see his profile reminds me of Josiah's. Please visit my profile and look at my album of Josiah. You will be able to see his progression from the time he was diagnosed at 1 years old until the surgery just after his 3rd birthday. I cannot tell you what is best for your son but if you do choose to go forward with surgery I can tell you I am glad Josiah was older when it was done. He was able to communicate everything he was feeling from the moment he came out of surgery and recovered so quickly I was truly amazed. Feel free to visit our caring bridge page or send me a private message if you have any questions. God Bless you and your family while you make your decision.

Desiree

[manderson]

Hi Desiree

Thank you for that. It meant a lot. I read your story and I am so happy all is well with your son. Thank GOD...
My husband and I have spoken about it and we have decided to go through with surgery but it still hasn't hit me yet. The doctors gave us a choice because all looks good but they're worry was that they're may be pressure later on and his head will get more abnormal. I haven't set the date, I am pretty scared, buy I know it has to be done. What I would like to know is how you got through it. Letting him go and seeing his appearance when he returned???? Thank you

Maria

[Josiah'sMommy]

Maria-
Sorry for the delay in my response. The way I was able to get through was by knowing that I was doing what was best for him and for his future. I was very blessed because my faith in God gave me complete peace. I felt very lucky that Josiah had a condition that was treatable and we had access to medical care. Also, his appearance after the surgery didn't bother me either. Even when he was swollen I was just so thankful we were moving forward. Just holding him and laying next to him kept me calm and happy. Please feel free to send me a private message if you would like to talk more as your surgery gets closer. I wish your family the best!