New from Arkansas

[Waylon'smommy]

Hey everyone. I am new to this whole posting thing. So please forgive me if it takes me a while.
My name is Donna and I am a mother to two children. Jamie is 9 years old and Waylon (Metopic) is 2 years old. When Waylon was born we noticed right away that he had metopic synostosis. (the cone shaped head with the very noticable ridge in the front) My cousin's son was born with the same thing so I kinda new a little bit about it. My husband on the other hand had never heard or seen anything like it. We were seen by the Neurosurgeon (Dr. Burson) and the plastic surgeon (Dr. Shewmake) in the hospital. We were told that he would have surgery when he was 7 months old. We had the surgery done on June 19, 2005 @ Arkansas Childrens Hospital. Everything went really good during and after surgery. They had told us to except 3 day in ICU but we were only in there for a little over 24 hours. Once we got to go home I was so scard and nervous to have him to our selves again...but of course everything is great now. Dr. Shewmake says that they will probably have to do another surgery when he is 4 but it is nothing major. He says they will just have to go back in and smooth some of the bumps. The doctors we were referred to was great. I could not have ask for better people to help my child. As I said before i am new to this but I was wondering if anyone esle had this same thing in their families? My concern for this is that I have two sisters and one is expecting her second while my other sister has 3 children. Her youngest one has a flat spot on the right side of her head and go to the doctor (a specilist different from the one that we used)the 19th to see what he thinks about the CT scan that was done by her reg. doctor.

Thanks
Donna
http://i95.photobucket.com/albums/l132/jamiewaylon/lake1004.jpg

[charliesmummy]

:welcome to Cranio Kids Donna and thank you for sharing your story with us. My son Charlie had surgery for Metopic 5 weks ago at the age of 14 months and is doing GREAT. There are a lot of Metopics on this site at the moment and most of them have just had surgery within the last couple of months.
There are parents with cranio that have gone onto have children with cranio on this site so im sure they will get intouch.
There is also a mum on CAPPSKIDS that has metopic that runs in her family. Would love to see some bigger pictures of your children. Welcome again xx

[Candice]

:colors Donna! Thanks for sharing your story! Has anyone in your family gone to a geneticist? It might be something to look into with it showing somewhat of a pattern. Welcome again to the family Donna, glad to have you here!! :hugg :hugg

[Janet]

Hi Donna~
Welcome to cranio kids...I'm also a metopic mommy!!! My daughter Fiona had surgery almost 3 weeks ago. I think in some cases it is genetics. There is nobody on either sides of my family and my husband's with any cranio issues...it was a fluke that it happened to Fiona, as our p/s and n/s said...it's just something that happened and they can't explain why.

[sarahob]

Hi Donna. Thanks for sharing your story and welcome to CranioKids. I am a saggital mommy and it is also not genetic in our family. Our doctors (same as Fiona's) also said it was just a fluke.

[Tawnia]

Welcome! I am Tawnia. My daughter Azia just had surgery for metopic cranio 6 days ago! As far as we know it isn't genetic in our case but DH is adopted so we really will have no idea unless we see it again. There are none in either side of my family.

[Konnersupport]

Hi Donna! I have a 3mnth old that has metopic as well that will be having surgery in Jan! I have a 4yr old and a 2yr old as well neither of them have a cranio case. When I had asked the surgeons about our case, with it being on neither side of the family or things like that he thought it was more of a fluke as well. Keep us posted!

Tiffany

[Pocket]

Hi Donna
I have a two and a half year old, Patrick, who is metopic and we are waiting for a date for surgery. None of my family or my husband's have ever come across this before. I guess having learned so much about it myself now - I would probably be more proactive about suggesting pushing for check ups if I noticed a ridge on a new baby relative. It has to be a good thing to spread awareness and get peace of mind too. How many mums on here have said we always knew our babes had different shaped heads but didn't know it meant anything. A lot of paediatricians missed it too. I guess when you have been through it you are more aware of potential cases in close relatives. It can't do any harm to rule it out and get peace of mind.
Welcome to the site.
Sam

[Waylon'smommy]

Thank you so much for all the welcomings :) I am really glad I found this site. And I will diffenently have to look into a geneticist. I will try to figure out how to post more pictures and bigger one of my kiddos. All of you guys kids are so cute!! I also have a myspace page that you guys are more than welcome to see the different pictures of my family you can also ask to be friends if you have one. My page is WWW.myspace.com/jamiewaylon (http://www.myspace.com/jamiewaylon) . Thank you again it is so nice to know you are not the only ones out there.

[charliesmummy]

What a beautiful family you have, Waylon is a real cutie x

[Waylon'smommy]

Thank you. He is a handful but wonderful at the same time.

[xl1200c]

Hi Donna,

My son David also has metopic, his surgery will be in December. We don't have a history of this in our families. I tried to find a reason, just to make sense of it all, but the doctors say it just happens sometimes.

Could I ask what type of surgery your son had? I am presuming CVR because he was 7 months, but I just wanted to check out of curiosity.

Welcome!

[btkan5]

Hello Everyone!! Like Waylon's mom, I too am new to this site, and not quite sure where to post questions, concerns, etc. Our son Nolan, was diagnosed 2 weeks ago with sagital craniosynostosis. He is just over 3.5 weeks old now. Shortly after giving birth to him I felt in my gut that something was not right. I had had two previous c-sections and was not buying the "he has a birth canal head shape" answer I was getting. When Nolan was almost one week old, our pediatrician (who is wonderful) said that we could get an x-ray if we felt something was not right. We did, and then the CT scan followed shortly after.

We are going to decide in the next week which surgeon we will be using. We have already met with the surgical team at Cincinnati Children's Hospital, and will be going to Boston to meet that group next week. They each want to perform the surgery when is he is 6 to 8 weeks old. Each wants to perform the endoscopic strip. Nolan does not have an overly embossed forehead, and each believes that the endoscopic strip is the best option for him. The key difference between the two surgeons is that one says helmet therapy and the other does not. At Cincinnati, they believe that by opening the suture and allowing the brain to help shape the skull is best, plus his age and catching it so early will allow for the brain to naturally shape the skull. Any thoughts?

In the short time I have learned of this condition, I have found this site to be the most helful and comforting. I have read this site forwards and backwards, and though I have not met any of you in person, I feel as though this is the one place I can come and all of you know how I feel.

Thanks,
Tiffany

Kayla - almost 5
Addison - 2 1/2
Nolan - 3 weeks--Sagital Cranio

[mrs j]

Welcome Donna and Tiffany, i have a metopic boy, he is 3 after christmas, we have had no members of our family with this, and it came as quite a shock when he was diagnosed, Tiffany i cant tell you anything about the surgeons different choices of treatment but im sure theres plenty of people on here that can, this site is amazing i have found out so much info on this condition, and you dont feel like your travelling this journey on your own, good luck to the both of you. xx

[jenniferann75]

Hi and welcome to both Donna and Tiffany. :) My little Andrew had surgery for sagittal cranio in July.

Tiffany...I received your email and just replied.

[melsch]

Hi Donna and Tiffany, Our son Logan has metopic cranio. His surgery is scheduled for Nov. 7. :nervous This is the first case of cranio that I am aware of in my family. I have found this site to be wonderful! Such a great group of people and tons of support.

[Waylon'smommy]

Sorry it has taken me so long to get back to here.

"Hi Donna,

My son David also has metopic, his surgery will be in December. We don't have a history of this in our families. I tried to find a reason, just to make sense of it all, but the doctors say it just happens sometimes.

Could I ask what type of surgery your son had? I am presuming CVR because he was 7 months, but I just wanted to check out of curiosity.

Welcome!"


Cathy I am not sure what the name of the surgery was. I am so sorry. He had the one that they cut from ear to ear just like the other ones i have seen on here. I will keep you and you family in my thoughts and prayers. I know your little David will be just fine. I wish you guys the best.