New From Michigan

[Haileys Mommy]

Hi Everyone!. I went ahead and snooped through some threads, the surgery pictures threads in particular. You all have such beautiful children.

I am a mother of 1, her name is Hailey. She was due on December 7th, 2006 but was 15 days late being born on December 22nd, 2006 and I had to be induced.

After Hailey was born the doctors found that she had a cleft in her palate. It was repaired at 4 months old. When she was 1 month old it was brought to the pediatricians attention that she has torticollis. She went through therapy from 2 months old until 10 months old for it and no longer has that problem.

At 6 months old the pediatrician said he wants her to go to the neurologist because her head slowed down growing a lot. The appointment was made 3 months after he suggested it. I don't know why the appointment was 3 months later, but it was. When the neurologist looked at her he said he wanted to send her out for a MRI and after that a CT Scan. The MRI came back good. The CT Scan I just got the results for a week ago. Hailey has a fused Metopic suture. I never noticed it before until the doctor asked me to put my finger on the center of her forehead and rub it backwards onto the top of her head. I felt a 2-2.5 inch bump going back. He said by looking at the scans her brain has growing room so he doesn't think surgery is necessary. I am not a doctor but I still beg to differ since her head has to grow a lot more still and it has slowed down a lot on growing. On November 5th we are going to see a Neurosurgeon in Detroit ( 2 hours from here ) and he is going to make the final decision. Me and her pediatrician were looking at her percentile chart for weight, height and head circumference. I asked him how much bigger would her head have to be for it to be considered normal for her current weight, height and age. Well, we both figured 1 - 1.5 inches bigger circumference for it to at least hit a normal range for her. I have my fingers crossed that within the next 10 days I can get an answer whether it means surgery or not.

[Annie]

Good luck with everything. My son Timothy who is now 5 months has Sagittal Cranio (surgery scheduled for this tuesday 30th), so i can't really comment on the Metopic. Just wanted to say welcome and good luck.:welcome

[Haileys Mommy]

I wish your son TONS of luck on Tuesday he will be in my thoughts for a speedy recovery:hugg

Good luck with everything. My son Timothy who is now 5 months has Sagittal Cranio (surgery scheduled for this tuesday 30th), so i can't really comment on the Metopic. Just wanted to say welcome and good luck.:welcome

[xl1200c]

Welcome ! What a journey you've had so far...

I think it is appropriate for you to be getting the second opinion. My son's metopic is fused as well. We were often told that the metopic is the first to close so it may be fine. We were also advised that when there is triangulation in the forehead or the overall head size is small, it should be investigated further.

She looks gorgeous in her pictures, and all may be fine - but if your gut says check it out further, then go for it, you deserve the peace of mind. Either way, please keep us up to date, we'll be thinking of you.

Welcome again.

[Katie]

Welcome to Cranio Kids! Your daughter is beautiful :adore Which NS are you going to see? Dillon sees Dr. Zakalik out of Royal Oak Beaumont, and his craniofacial surgeon is Dr. Ian Jackson out of Providence. This area has a lot of great Dr's who are familiar with craniosynostosis. Good luck at your appointment, please let us know how it goes!

[Haileys Mommy]

Welcome to Cranio Kids! Your daughter is beautiful :adore Which NS are you going to see? Dillon sees Dr. Zakalik out of Royal Oak Beaumont, and his craniofacial surgeon is Dr. Ian Jackson out of Providence. This area has a lot of great Dr's who are familiar with craniosynostosis. Good luck at your appointment, please let us know how it goes!


For the Neurosurgeon she is going to see Dr. Sood in Southfield. I looked him up online and I guess he is pretty darn good with Pediatric Neurosurgery, he has won a lot of awards and was voted the best in 2002.

Her Neurologist is Dr. Kadurahh out here in Flint at the Mott Childrens Hospital.
Her pediatrician picks her doctors and then I try to find all out that I can online and if I don't like something I pick my own doctor for her. But so far her Ped. seems to be pretty good at it and I have no complaints. The Detroit area and Ann Arbor always has the best doctors, at least thats what I think and I hear it all the time.

Has Dillon had surgery yet? What form of Craniosyntosis does he have?

[jenniferann75]

Hi and welcome to Cranio Kids! I hope you find some answers out soon. I know how hard the waiting can be.

[Haileys Mommy]

Welcome ! What a journey you've had so far...

I think it is appropriate for you to be getting the second opinion. My son's metopic is fused as well. We were often told that the metopic is the first to close so it may be fine. We were also advised that when there is triangulation in the forehead or the overall head size is small, it should be investigated further.

She looks gorgeous in her pictures, and all may be fine - but if your gut says check it out further, then go for it, you deserve the peace of mind. Either way, please keep us up to date, we'll be thinking of you.

Welcome again.

I am glad I am getting the second opinion. she doesn't have the triangulation to the forhead yet. Right now the bump starts infront of the soft spot ontop of her head and goes to the very end of her hairline. I never remember that bump being there before, so I don't know if I over looked it and if so, for how long did I over look it. Or did it appear fast. Her head is basically in the 0 percentile. When I type her height, weight and head into the percentile chart online her height is in the 95th percentile, her weight is in the 50-75th percentile and it always says her head is below the 5th percentile. If you look at a percentile chart from the doctors and you try to figure out what percentile her head lies in I would say 0 percentile and if negatives exsisted on a percentile chart it would be -3 percentile. So it is pretty far down on the chart. In her pictures her head looks like a good size, and it does in person too, but when I sit her next to another kid around the same age as her it makes you do a little jump back and realize her head actually is small, or does this other kid got a big head?

I'm hoping if surgery is needed that this will be the last thing she has to go through.

I will keep updates for sure!

[mrs j]

Hi and welcome, my son has metopic, and we are hopefully getting a second opinion very soon,as our ns seems to be really slow as my son was diagnosed at 4mths and now is nearly 3, the waiting is really hard, but hopefully like me you will get the peace of mind you deserve, and she is absolutely gorgeous. xx

[Jennifer]

Welcome to the sight! She is absolutely adorable! Good luck at your NS appointment. There are lots of metopic mom's on the board, so they should be able to help you w/ specifics. Glad you found us!

[Katie]

Has Dillon had surgery yet? What form of Craniosyntosis does he have?

Dillon is multi-suture (metopic and bi-coronal) syndromatic. He had his cvr/foa when he was 4.5 months old (we're close to three years post op!) but he will, in the future be having a second surgery. Providence is in Southfield, don't know if that's where you going, but it's a great hospital!

[Jenny]

Hello! Welcome to Craniokids! I'm Katie's Sis-n-Law, and Dillon's cousin, my daughter, is also a craniokid! My daughter also saw Dr Sood. I would say he is a pretty good physician. Her Plastic Surgeon was Dr Rozelle, out of Children's Hospital in Detroit. They together did an awesome job! Hope everything goes well for you!

[charliesmummy]

:welcome to cranio kids. Hailey is beautiful & what a journey you have been through alredy. My son is/was Metopic & had surgery 7 weeks ago but he had the typical triangular head and not just the ridge. Hopefully Hailey wont need surgery and her head will grow but if she does end up having surgery then i can say for sure that she will recover very quickly as they are so resilient. Good luck with your appointment x

[melsch]

Hello- Our son Logan was born with metopic, but his was noticeable from day one. Your daughter is beautiful! Such a cutie! I wish you all the best with your second opinion! Let us know how it goes. Welcome!

[Janet]

Welcome to cranio kids!!! Glad you found us. My baby girl had metopic surgery 1 month ago. There are a couple of kids on my side of the family that had a cleft palate.

[Tawnia]

Welcome to Cranio Kids! I met you on Sparkpeople remember? My daughter just had her metopic surgery 3 weeks ago :o)

[Haileys Mommy]

Welcome to Cranio Kids! I met you on Sparkpeople remember? My daughter just had her metopic surgery 3 weeks ago :o)

Yep, I remember! Thank you so much for giving me this site. I had a few e-mails from some people on here that have helped me out a lot and there are a few people in here who know the Doctor Hailey has to go see. I am looking forwards to getting to know everyone in this group.

Your daughter is so cute! Everytime I see her picture she reminds me of a cabbage patch kid doll I had growing up :giggle

[Candice]

:colors Glad to have you here! I hope your second opinion gives you the answer you are looking for. :hugg You have been through so much so far, I wish you luck.