OT: Any craniosynostosis families out there?

[RichNKatHolly]

Just thought I'd take a chance on the DIS since I feel more comfortable here than on other boards geared towards this deformity.

Anyway, my son is 6 years post-op and his head does not look right (large indents on either side of the eyes and no brow protrusion). He said he's getting teased and several of my newer friends have commented.

Anyone out there familiar with this and know of someone who needed a second surgery? If so, at what age did they do it? Our Dr. had said at age 16, but I can't see letting my son go through another 9 years of teasing!!

Thanks in advance!!

 

[belle&beast]

I am a speech pathologist in the public school preschool. I don't have an answer to your question about a second surgery, but I do have a suggestion to help your son with peers. I have worked with many parents of kids with disabilities and at the beginning of each school year, many would come to the classroom and along with their children explain why they look or act differently. It was very helpful and I can honestly say that inthe school where this was common, I never heard of children being teased for being different. for you and your DS.

 

[Princess Stitch]

Maybe the doc is worried about doing too many surgeries while your son is still growing and figured by 16 he'd be pretty much adult size?

I'm sorry I can't offer any more help on the issue, but I can suggest you try posting on the disABILITES board. You might get more of a response there.

 

[RichNKatHolly]

I am a speech pathologist in the public school preschool. I don't have an answer to your question about a second surgery, but I do have a suggestion to help your son with peers. I have worked with many parents of kids with disabilities and at the beginning of each school year, many would come to the classroom and along with their children explain why they look or act differently. It was very helpful and I can honestly say that inthe school where this was common, I never heard of children being teased for being different. for you and your DS.

You know, this is the second time someone suggested such a thing. DS starts a new school next fall and this may work out great.
Thank you for taking the time to respond!!

 

[RichNKatHolly]

Maybe the doc is worried about doing too many surgeries while your son is still growing and figured by 16 he'd be pretty much adult size?

I'm sorry I can't offer any more help on the issue, but I can suggest you try posting on the disABILITES board. You might get more of a response there.

Yes, I do believe you are right. I went ahead and scheduled another follow up with our surgeon for next Friday. I just want to be sure that besides the "look", there is nothing physically wrong with his head, etc.

I will check out the disAbilities board tonight too.

Thank you so much for the info!!

 

[EmmaLuvsPooh]

I'm sure it depends on the severity of what form of cranio he had. My daughter only had the front right section (right front coronal)so not as bad. She also had surgery at 51/2 months so it was corrected very early before a ton of movement occured. Her doctors had said though even before surgery that there was a possibility of a second surgery.You didn't give any details so its hard to say but you can never predict what will happen and how the head will grow. And did the indents just occur recently? It seems strange that it would happen so long after the surgery???

DD also had tortocollis in her neck which caused flattening on the back side of her head. She still has some flattening but that is unrelated to the actual cranio problem. She had NO problems post surgery with any facial indents or movement. She goes yearly now just to the plastic surgeon and he has alway said she has a very slight indent on the top bridge of her nose(which we can't tell) and she could have plastic surgery again when she's older(yeah right!) I think he's just a perfectionist and I say no more surgery. The only thing we notice now is when her head is growing because it pulls and scabs a tiny bit periodically just in one spot usually. We can also still feel the screws which are reabsorbable and they said would take about 3 years to dissolve?

I'm sorry he's having trouble. He must have had a more severe form of cranio. I don't think there's anything to worry about if it's purely cosmetic. There's not really anything you can do until he gets older. I would think you can't cosmetically fix anything until his head/face and done growing or he would need multiple surgeries. You'll just have to explain to him why it's like that and hope that he can be more accepting of himself than others. My daughter already at age three knows why she had the surgery and why she's getting checked. All I can offer is positive thinking. I'm thankful everyday that we have the most wonderful little girl and she has no cognitive problems. She's going to have to live with the scar on her head and the nose indent-it's part of her. The part that reminds us how lucky we are to have her.

Sending you best wishes and pixie dust-

 

[RichNKatHolly]

EmmalovesPooh - that you so much for your story. I'm sorry you had to go through the awful first surgery as we had. What an awful day - so not looking forward to going through that again.

Anyway, to me, my son is perfect. Heck, when he was born I didn't even notice the way his head was growing. He had multiple sutures closed. Saggital and coronal (I think??). He ended up with a ridge on the top of his forehead and his head started to grow only upwards, not to the side or back (like a cone). They did the surgery at 9 months and did say that he may need another at age 16 or so, but that it would be up to him.

My concern is not only that he's getting teased (I would never condone another surgery for that reason alone), but I am worried that the indents on either side of his eyes could be causing pressure, etc. We do have another follow up with the surgeon on Friday so I'm hoping to have all my fears put to bed then. He also does excellent in school, has no other "problems", etc.

I was nice though to hear from another family who had gone through the same thing so thank you for your post!

One quick question - do you ever wonder how this happened in the first place? My second child had no defects at all. I just always wondered if it was something I did, how I sat too much or something. Just curious to see if I'm the only crazy one.

 

[Brenda in CA]

My sister was born 33 years ago with craniosynostosis. They did surgery on her when she was about 11 months old. Her head was growing front to back but not out to the sides. It was creating pressure on her brain. She had a bulging forehead.

She never needed any further surgeries and looks great! In fact, she's beautiful! The only remembrance of the surgery is the scar that she has running down the center of her scalp.

When I was pregnant with dd1, I was asked about birth defects in my family. I could only think of my sister, so I told the geneticist about her. My babies have been fine, but he told me that my sister would have a 50% chance of having a child with craniosynostosis and that they could detect it in utero when she finally decides to have children (which hopefully should be soon!!!).

As for the teasing, I'm a first grade teacher. I had a little boy this year with very mild cerebral palsy. He walked on his toes. He also had a deformed arm (arm was shortened with a club hand and no fingers - more like little toes). The first day of school I read a book about how everyone is different and unique. Then we talked about how it's okay to be different than the next person. The little boy with CP came to the front of the room so we could show the class his arm/hand. He showed how he could do most anything that anyone else could do. He let the kids ask him some questions. We discussed how he was born that way and that it was okay that he was born different and that we shouldn't make fun of anyone that is different. Anyway, I was amazed at how accepting the kids were of this little boy. A couple of times when we got new students, the new students would make comments, but the other children were quick to explain to them about acceptance. It was great!

Good luck to you. I hope you find the answers you need with your doctor.

 

[EmmaLuvsPooh]

Do you wonder how it happened???

All the time. I was going crazy thinking I did something but of course I didn't. Our geneticist said that cranio usually is genetic and occurs more frequently with boys. Well we don't know of anyone in our family having it and we had a girl with it so who knows. They said I could participate in a study and testing(at my own expense) and they could possible determine my chances of having another baby with the same thing. Also dd's chances of being a genetic carrier. I said no because I was having another baby regardless and I sure didn't want to be stressed over the possibility the whole time I was pregnant. Anyway I did have my ds who will be a year old this friday and he had absolutely no problems at all.

The strange thing is my pediatrician said that her kids had tortocollis(tightening in their neck) from not having enough room in utero. My dd had the same and cranio and my obstetrician also said my uterus was small after I delivered dd. So I concluded that DD was cramped in there and that caused all the problems. But now after DS I guess not because he didn't have any.
So then I'm back to the original-I have no idea how she had cranio!!!

We wish you the best and hope you get some positive news on your next visit. I can't even imagine having to go through another surgery. It was horrible.

 

[Blueeyedcreations]

My son Gabe has had 2 surgeries for his craniosynostosis. His first surgery was at 15.5 months and at the time that thought that just his metopic suture was involved. Around 2.5 years old he started complaining of ringing in his ears, headaches, he started regressing educationally and we also noticed that his headshape changed. His head again became very egg shaped.

We went into our neurosurgeon's office and he immediately sent us to the plastic surgeon. Gabe had a CT Scan and a spinal tap. He had increased intracranial pressure at that time. He had his second surgery at 36 months. At that time they noted that his metopic and both coronals were causing the problems. He had a second surgery done.

Gabe now also has some other issues that are not related to the cranio, but he still has issues with increased ICP (intracanial pressure).

I would definetely follow up with his surgeon. I would also monitor him for signs of increased ICP. Gabe was very indented on the sides of his forehead before his second surgery. If you have any other questions or would like to see pics please feel free to email me. twinsmommy@mchsi.com

 

[RichNKatHolly]

EmmalovesPooh:

Thanks again for the info and the pixie dust!! Perhaps our uterus' were small and those first kiddos stretched them out so our second children could come out just fine.

My DD was born without any issues. DS was my first so of course I was just stunned and in total disbelief as to what we were going to go through.

Anyway, in a few more days we'll have more answers!!!

 

[RichNKatHolly]

My son Gabe has had 2 surgeries for his craniosynostosis. His first surgery was at 15.5 months and at the time that thought that just his metopic suture was involved. Around 2.5 years old he started complaining of ringing in his ears, headaches, he started regressing educationally and we also noticed that his headshape changed. His head again became very egg shaped.

We went into our neurosurgeon's office and he immediately sent us to the plastic surgeon. Gabe had a CT Scan and a spinal tap. He had increased intracranial pressure at that time. He had his second surgery at 36 months. At that time they noted that his metopic and both coronals were causing the problems. He had a second surgery done.

Gabe now also has some other issues that are not related to the cranio, but he still has issues with increased ICP (intracanial pressure).

I would definetely follow up with his surgeon. I would also monitor him for signs of increased ICP. Gabe was very indented on the sides of his forehead before his second surgery. If you have any other questions or would like to see pics please feel free to email me. twinsmommy@mchsi.com

Ugg, I'm so sorry you had to go through the surgery again so soon. Do they say that he may need another in the future?
If you don't mind, I will be emailing you when I get home later. It's very hard to find other families with this issue. Most I've come to realize have children with some very serious issues in addition to the cranio, some with minor (like it seems your son is having) and then some like mine with no other issues (at least not that have surfaced in the last 7 years).
Thank you for your story and I hope little Gabe is feeling/doing better now.

 

[Blueeyedcreations]

Gabe will need another surgery in the future to fix his scar. It is a little thick. Our plastic surgeon is a perfectionist and Darren (my husband) and I have decided to wait until Gabe is older to allow him to make that decision to fix the scar.

When Gabe had his first surgery they told us that generally 1 in 30 of all cranio cases will need a second surgery. In February Gabe was diagnosed with Chiari Malformation. June 27th he will be having a chiari decompression surgery. Some cranio cases can cause chiari malformation, however in our case 2 of my children have chiari.

There is an awesome site at capps kids . org and there are women there that can also answer your questions also. They have been a great source of help to me! Email me when you have the time.

Michelle

 

[Brenda in CA]

EmmalovesPooh:

Thanks again for the info and the pixie dust!! Perhaps our uterus' were small and those first kiddos stretched them out so our second children could come out just fine.

My DD was born without any issues. DS was my first so of course I was just stunned and in total disbelief as to what we were going to go through.

Anyway, in a few more days we'll have more answers!!!

My sister, who was born with craniosynostosis, was the third child for my mom. There were four of us in all, and she was the only one to have the cranio.

 

[Blueeyedcreations]

Gabe and his twin sister are my first. They were born 6 weeks early and spent 5 days in special care. I definetely think that craniosynostosis can be familiar or just because. I have had 2 children since. Hannah does have a metopic rigde, but did not have any issues due to that. She also has chairi malformation. Fayeth does not have cranio either.

 

[RichNKatHolly]

My sister, who was born with craniosynostosis, was the third child for my mom. There were four of us in all, and she was the only one to have the cranio.

Welp, so much for that theory. I was kind of just kidding though. I'd like to believe there is some reason that DS has it but DD didn't - I wish they would do more research as to the causes, etc. Before DS, I'd never heard of cranio!

 

[bigbabyblues]

We found out our 2nd DS had craniosynostosis when he was 15 months old; he had surgery to correct it when he was 18 months old. His was the sagittal suture and the metopic also. He has titanium plates across his forehead, but other than his scar now that we buzzed his hair for summer, you'd never know it.

His plastic surgeon and neurosurgeon both agree that he most likely will not need another surgery, and I'm grateful for that. I know how hard it is to find other cranio families, and I agree with the poster that suggested cappskids.org. I found a bunch of great people there for support.

Sorry I can't help much, but he's in my prayers.

Steph

 

[RichNKatHolly]

We found out our 2nd DS had craniosynostosis when he was 15 months old; he had surgery to correct it when he was 18 months old. His was the sagittal suture and the metopic also. He has titanium plates across his forehead, but other than his scar now that we buzzed his hair for summer, you'd never know it.

His plastic surgeon and neurosurgeon both agree that he most likely will not need another surgery, and I'm grateful for that. I know how hard it is to find other cranio families, and I agree with the poster that suggested cappskids.org. I found a bunch of great people there for support.

Sorry I can't help much, but he's in my prayers.

Steph

Thank you! I've got to check out capskids again. I did so almost 7 years ago when DS was first diagnosed and really haven't been back.

I'm so glad your DS is going so well. Gotta love that scar. We told DS it was kinda cool and he'd always have a story to tell. He doesn't seem to mind it and there is only one spot where his hair seems to grow in a funny way around it. We spike it alot to cover up - and he's cool with that too .

Thank you for responding with your story. It is very comforting to know that you are not alone.