View Full Version : Welcome Katie's Mommy
01-07-2007, 10:59 PM
:welcome to Cranio Kids, I am glad you found us.:hugg
01-07-2007, 11:01 PM
Glad your here! I hope we can be of help to you! :welcome
01-07-2007, 11:18 PM
Thank you so much for welcoming me! I have no idea how to use these things, so you'll have to forgive any mistakes I make. I am brand new to all of this, I suspect my one year old daughter of having a fused metopic ridge. She is being 'unofficially' seen by a dr. tomorrow morning and an appointment on Wednesday with our family doctor. I am scared to death and have been crying for 3 days. My husband is currently out of town, and will be so for the next 3 month. I feel like I am all alone and don't know the next steps to take. I have a millions questions and noone to ask.
01-07-2007, 11:24 PM
I guess some of my questions are....does a fused metopic suture require surgery all the time? It is only visible right at her hairline and a little further back, but I can feel it under her skin all the way down almost to her eyebrows. How much danger is there of having pressure on her brain? Will it get any worse if we opt to not have surgery? How common is this kind of surgery and can only very specialized surgeons do it?
01-08-2007, 10:58 AM
Again :welcome! You've found a good place! :hugg No worries on mistakes- we can be full of them :giggle
I didn't have a metopic baby, so I don't have as much knowledge as some on the board (I'm sure they'll find this post soon!) So, I'll just answer the parts about the surgeons- Usually a team of surgeons performs the surgery- a neurosurgeon (NS) and and a plastic surgeon (PS). Each team seems to work differently- for some the NS is there only to 'protect' the brain and watch that part of it and the PS does most the work, for some the NS does most all the work and for some it's a complete team effort. I believe all 3 scenarios work- once you find the right docs for you. The surgery is actually a little more common (weird as I'd never heard of it before having Emily)-than you might think- my NS/PS do 1-3 per week and we have another group in the area that does about 1 a week also.
As for pressure on the brain(that also seems to be debateable w/ single suture fusions)- is she showing any symptoms? Is she reaching her milestones?
Good luck w/ your appointments. To get a true diagnosis, are you meeting w/ a nuerosurgeon at some point? They would be the ones to give you the most accurate diagnosis. If you need help w/ questions, we do have a list that you can print out to take w/ you.
Please continue to ask all the questions you want. We're here to answer what we can, offer support, be a place to vent your fears, worries, frustrations and a place to show off your baby!
01-08-2007, 11:44 AM
Welcome! these people are incredible! I am not n authority but will help you all i can. My son is in surgery now....coronal-so not familiar with yours...
01-08-2007, 12:10 PM
Welcome, I'm so glad you found us!
I would think that surgery would depend on what the results of a scan showed, and how an MS feels about it. I wish I had more answers for you, but there are some great questions listed in the testing and surgery forum that you can ask your Dr.
Again, welcome! :hugg
01-08-2007, 02:21 PM
01-08-2007, 11:51 PM
Thank you all for welcoming me! It's nice to find a place where people can understand my fears. I reread my post and realize I sounded a little hysterical, but it's been a long few days! I have been researching a lot (still) and am coming to believe that Katie may not need surgery, but that she will always be a little different, (variety is the spice of life, right?) I have no idea how to post a picture on here to show you more knowledgable parents what her forehead looks like, but I don't think it's too bad, just been staring at it too long! I have found some valuable advice on my next steps and can't begin to express how much relief and peace it is to know a course of action. I will be pushing for her to see a pediatrician, and was told by a dr today that in my town, it only takes a few days to see one, and in a larger center that is about 1 1/2 hours away, they have pediatric neurosurgeons and plastic surgeons, so help is close at hand, and now I know how to get it.
Thank you all again for your support in this and hope I can come back with some good new about my beautiful baby girl! She has been meeting all her milestones, but no first 'actual' word yet! For Frankies mom, my thoughts and prayers are with you, I'm sure all will turn out fine. I'll check in again soon.
01-09-2007, 04:12 PM
Welcome Karri! Craniokids is a great place for support! They have helped my family through a lot! My daughter had metopic and coronal craniosynostosis. Her metopic "ridge" was not real prominent. I do know that some are very pronounced. A 3d CT scan would help to diagnosis your daughter. I would definitely recommend seeing a neurosurgeon regardless of what your pediatrician says. The neurosurgeon is a person who sees cranio more often. I had a specialist tell me one time that the pediatrician is there to let you know if something is not right with your child. They can refer you to the appropriate specialty and from there the specialist is able to coordinate your childs care. My thoughts and prayers are with your family. The cranio journey is a hard road but craniobabies are so strong and beautiful. They are a group of children and families like no other!! They are amazing! Keep us posted and let us know if you have more questions.
01-09-2007, 09:45 PM
Welcome to Cranio Kids! This is such a great site for info and support. I am with Lisa, the NS is a good place to start. Good Luck.
01-10-2007, 12:56 AM
I just wanted to let you know you are not alone. I know sometimes it can feel that way. My daughter had coronal CS and had surgery in October.
The only thing I can stress is too get the doctors opinions that you are comfortable with. Find the best doctor for your family and little one.
We are all here for you.
01-10-2007, 09:27 PM
Well, we saw our gp today and he has referred us to a pediatrician. He did feel the ridge on her head after I pointed it out to him, and did agree that it wasn't normal, but didn't seem too concerned about it. Mentioned that lots of kids have lots of different shaped heads, which made me feel like saying 'DUH', but of course I didn't! He thought that it wasn't too big of deal, but thought that I should see a pediatrician because he had never seen a case of this before. Hopefully the pediatrician has.
Katie's dad also has a ridge on his forehead, but it isn't as sharp and can't be seen at all. Has anyone here NOT had surgery for metopic? Or heard of a ridge getting smaller or less noticeable over time? If it isn't fixed, will it get bigger and bigger as her head grows? I will ask the pediatrician these questions, but if anyone has any experience with a single metopic suture, I would love to hear from them. The gp felt the rest of her head and didn't notice any other ridges.
I've read that for the metopic, surgery is mostly for cosmetic purposes and will only be performed if there is danger of intracranial pressure. Has anyone here had only a visibly mild case with icp? Since she is already a year old, the suture may already have closed, or started to close, naturally, according to everything I have read. What are the signs of icp? She still has an open fontanel on the top of her head, but I'm not sure of the rear one. I am eager to hear anyones opinions!
01-10-2007, 11:47 PM
Again, not an expert in metopic.....It seems this is one of the more 'contriversal' types- as the suture does fuse earlier? I've heard of some saying it's cosmetic only- but I've also heard that once in there, they have found signs of icp when they previously didn't think it to be there (not always!)... Signs of ICP....I think we should create a post with a list of signs-I can think of crying/signs of headaches/banging head/regression in development....but I know there are more out there. When you meet with your pedi- ask if he/she has had any cranio babies before- it seems alot of pedi's haven't dealt with cases of it before (or didn't know what it was- therefore not diagnosis it) I'd also ask if the pedi can refer you to a NS that deals with cranio- they will give you the most expert opinion....
01-11-2007, 11:45 AM
Hi Karri, I would see a neurosurgeon. Although the pediatrician may see some cranio kids it is not their specialty. I would want the experts opinion. I agree that not all metopic kids need surgery but if the metopic fusion is causing ICP or medical concern then it does need to be fixed. I think a visit to the NS and a CT would be the best way to be sure.
01-20-2007, 12:46 AM
Thanks for everyones replies! I have been reading and reading and actually talked to one mom who's story sounds like mine, a ridge that showed up later, not a mishapen head. She said that her pd told her that it was the opposite of fusion, that her suture was really loose and her bones were riding up on one another like techtonic plates. Since then I have been MORE obsessively feeling her head, and it might just be me, but it seems like at different times, the ridge is bigger or smaller. Has anyone ever heard of this?
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