Bryson

[TiffanyS]

Hello everybody . I would like to say that this site is GREAT.
Let me tell you a littl ebit about myself. My name is Tiffany.
My husband and I have 4 kids. Lykeirra 8, Cameron 6, Mattie 3, And Bryson 9mos.
This is wher the story begins. Bryson was born 07/23/06. Normal Delivery no problems. He had a funny shaped head at birth and we were told not to worry, we were told however the next day that he had very small softspots and that wasn't any need to worry about either just something to watch and each time he went for a check up I had the doctor to check it. On his 4mos check up the ped told us that he want us to see a neuro surgeon, so we had xrays done and took them ans the neurologist sais that they looked good, but they wanted to watch has see how his grows over next few months. On our last visit we were told that they wanted like like a 3D scan. Well we got hte results back from that and Bryson has partial fusion of his Lambdoid and partial Sagital.
We a have a possible surg. date of 7/25/07.
I'm not a very good typer sorry!

[Jennifer]

Tiffany- first off WELCOME. I'm glad you found us and hope we can help. I'm sorry your son has to have surgery- it is a very scary time. Try to remember that this is fixable- that always helped me. I hope this site can be of support to you, please post concerns, ask questions or anything you need. Again- Welcome!

[TiffanyS]

Thanks,
I have tons of questions.
I'm kind of worried about his age. He will be 11 mos at surgery time.

You read so much and each thing gives you differnt times that is best to do surgery.

[Jennifer]

As for timing, every doc is different. Mine preferred 4 months, some 6, I know some don't do it until 10 months and some on the board have not had it done until they were over a year old.......

[momof5]

Hi, Tiffany. I'm new to the site too but I wanted to offer some reassurance about the age. My daughter was diagnosed at 5 weeks and her surgical team says the optimal time is at least 9-10 months, yet I see on this site that others differ widely in their opinions of the optimal time to perform the surgery. And I know exactly what it's like to be poo-pooed not to worry - my husband notice her asymmetry the moment she was born and we ultimately ignored our pediatricians and went to a highly recommended neurosurgeon on our own who diagnosed her the moment he looked at her. I learned to trust my instincts.

[TiffanyS]

Thanks, momof5
Yeah, a mom's instinct is strong. I knew something wasn't right with his head, that's why I stayed on the ped about it. I am relieved that we did get referred to two wonderful docs,the n/s and craniofacial surg. I have a little peace of mind in that. I really haven't heard about many cases like what Bryson has.I can find research on other cranios but nothing really on Bryson's type (lambdoid).

[Janet]

Our family Doctor sent us to a pediatrican and he told us that our daughter's metopic fused but not to worry all we have to do is monitor it!!! I knew something wasn't right so I went back to my family Doctor and when I told her what had happend..she admitted to me she's never heard of it and she wanted to do some research on it...she called me at home that night and told me that she was sending a refferal to a n/s at a Children's hospital.. I'm SOOO happy that I followed my gut. Mom's instinct is always right...and we have to be our children voice.

[TiffanyS]

Sorry, for the Greeting again I'm trying to figure out how to fix my typing mistakes.

[mom2mykidos3]

:welcome
I saw you lived in South Carolina and was wondering what hospital and doctor you are going too. I know someone that went to Carolinas Medical Center in Charolette NC. Her doctors were Dr. Scott McLanahan and Dr. David Matthews PS. Her daugher was 12 months old at surgery too. If you want more info I can get it too you just send me a PM. I hope you find the answers you need. We are all here to help. We have all felt the same way that you do right now.
You are in our prayers.

[Katie]

Welcome to Cranio Kids Tiffany! good job following your mommy instinct, it's almost always right. I'm glad that you have found Dr's that you are comfortable with. We have a wonderful and supportive group here, and we look forward ot getting to know you :hugg

[mommy4.0]

Tiffany, welcome to the boards. The families here are fantastic. My son had Sagittal surgery on 4-19 and he's doing wonderfully now. He was 2 months old at the time, but he was also diagnosed at 2 weeks. Try not to read into everything you see online, it can give you heartburn. It's a scary diagnosis, but I know Bryson and your family will get through it. Keep us updated on your appointments and ask away if you need anything.
Sam

[mayashekhina]

Hi Tiffany,

Welcome to the forum my daughter has lambdoid craniosynostosis, we are seeing the PS and NS on Friday and will hopefully be given a projected date then. She turned 1 today, her head is really wonky I have posted photos of it on the board somewhere I think it is under the topic of "still trying to decide" if you want to have a look.

We were told it would be optimal to have the surgery around 10 months but it is not unusual for them to do surgery on older bubs. They do try to stay around the 12 month mark though because their bones start hardening up as they get older than this which can lead to complications- that is how it was explained to me from memory.

We have known about Beths head since our first ultrasound when she was 22weeks gestation, hers must have fused really early, however she has had heart complications as well which has had to take precedence.

Lambdoid is really hard to find out about as it is so rare, I have spoken with a few mums whose children have had it but at the end of the day you have to go on what you feel is in the best interests of your child.

This has been something I have really struggled with because of Beths heart condition but I have had to get down to basics and think what she is going to want as a teenager looking into the mirror.

I am still full of questions myself- 4 pages are ready for the PS and NS. I am happy to share any info I have with you and maybe you will be able to tell me some things I didnt know.