4 mo. old id. twins both with metopic

[Juls]

Hello all, I have been reading the posts while waiting for a diagnosis. I am so frightened. I have 4 month old identical twin boys (Lucas and Dylan) and they were both diagnosed with metopic. My pedi noticed the ridge on their forehead, which lead to x-rays and then a ct scan. Now he is sending us to a pediatric neurosurgeon. I just can't even imagine both of my little boys having to go through this. They look so perfect to me and I would have never noticed anything ....
I know I will have great support here. Does anyone know a good doctor in NY/NJ? Any information anyone can give me is greatly appreciated.

Juls

[Janet]

First of all Welcome to Cranio kids...you'll get all the support you need here. My daughter had surgery just over 2 months ago, she was also metopic, it was the hardest time my life, but my baby girl suprised me, she was so strong, she did great, we were home in 4-1/2 days, she started walking 2 weeks after the surgery. I know how terrified you are right now, I know that there are mom's in your area (were from all over the world).
Keep us know how the nureosurgeon appointment goes. Were all here for you. :hugg :hugg

[xl1200c]

Welcome to the boards, and congrats on your two new babies.

We're out near Boston, so I'm not sure who is in NY or NJ, but I'm sure another member will chime in on it.

Check out this list of questions for the neurosurgeon: I found it very helpful. http://www.craniokids.org/support/showthread.php?t=31

Keep in touch.

[marisajo]

Welcome! So sorry to hear you are facing this, with not one, but both twins. There are lots of twin parents, but only one other that I can remember going through it with both. Haven't seen her around in awhile, but I can probably put you in touch if you want.

Montefiore is the place I've heard the most good things about in that general area or the country. NYU has also gotten some positive remarks. Sending hugs!

[sky16cb]

Hi and welcome. I am from NewYork but we are upstate. My little girl had her surgery done at 3 months of age. She had her done and we where home in 3 days. Her surgery was done at Golisano's Children's Hospital in Rochester New York. OurPediatric Plastic Surgeon Is John A. Girotto. Our Pediatric Neurosurgery is Howard Silberstein. They did a great job with Autumn. I would check they out if you can. They even have a place you can stay in the hospital if your from out of town. I thank god for them every day they helped out my baby. Hope this will help. Let me know where you are from. Maybe I can help you look for someone.
Cat

[melsch]

Welcome to the site. My son was metopic and had his surgery 1 mo. ago today. It was the most difficult experience leading up to the surgery date, but babies truly are little miracles and he healed so quickly. Unfortunately I am not up to speed on doctors up your way, I live in the DC area. I am so sorry you have to face this with both of your boys, but I know they will do great! This site is so great! You'll find all the support you need.

[Elizabeth]

Welcome! When is your boys' birthday? Logan (previous post) and my Isaac are both also 4 months old.

I struggle enough with one baby...can't imagine dealing with TWO babies with these problems!! You are blessed. Good luck and certainly keep us posted!

[charliesmummy]

Welcome Jules to Cranio Kids. Im so sorry you are having to go through this with your 2 little boys but we will all be here to support you. My son Charlie was opperated on for Metopic 13 weeks ago & no-one can even tell, he is completely 100% back to normal. It's much tougher on us parents but believe me when i say you will find the strength to get through this & we will be with you every step of the way. Would love to see a picture of your boys x

[Maji312]

Hello
I had twins b/g, only my son had saggital suture closed and had surgery 2 months ago. We went to 4 different dr. for opinions. The DR we saw and loved was Dr. Feldstein, he did the endoscopic surgery so my son has only 2 small scars not the scar that goes from ear to ear. If you want to talk further please so not hesitiate to email me.
Melissa

[Juls]

Thank you everyone for your support! We went to 2 different doctors and got the same opinion - they do not think it is synostosis and think that the radiologist may have misdiagnosed our babies. They want to see them again in 2-3 months to make sure nothing has changed and if not, we are on the clear.

Melissa, one of the doctors we saw is Dr. Feldstein and we loved him.

Thanks ladies again, you were a big help.