just diagnosed

[forgvn724]

Hi. I have an 11 1/2 month old son who was just diagnosed with lamboidal squamosal craniosynostosis. He has been being treated for the last 5 months for plagiocephaly when the radiologist missed the closed sutures when he was 6 months old. We are scheduled at Children's Hospital, which is 400+ miles away, this week with the neurosurgeon's CNP to evaluate him and see if he needs to be scheduled with the neurosurgeon earlier then Sep. 20, which is the soonest we could get in to see him. His pediatrician said if it is severe enough they may plan to do the surgery earlier. I am kind of confused though because as I have searched the internet I see that not all cranio babies have surgery, but I also read that it is the only treatment. If anyone has had to deal with this type of cranio please share your experience with me. I am deffinatly concerned and afraid for my son. Thank you. Paula mom of Kevin

[Jennifer]

Paula- I just want to say Welcome again! I am glad you have found us. I personally don't have experience w/ the lamboid suture, so I probably won't be a huge help (though I'm sure there someone here that will!) I believe, more often than not, a diagnosed case of cranio ends in surgery due to the possibility of ICP (pressure on the brain).

This is a very scary journey for us parents to go through, I think it is harder on us than the kids in the long run. The good news is- cranio is fixable and these kids are tough!!!! They are truely amazing.

I hope someone w/ more info on the lamboid suture will post soon for you and please keep looking through the site and asking questions as you need! :hugg

[snickers9246]

Welcome Paula!! So glad you found us! Sorry I can't help much with the lamboid either, I think one of Dillons was lamboid no or was it bi-coronal? I'll see as soon as I leave here I'm sure!! :)

Anyways, there's sure to be someone that can help you!! I just wanted to welcome you and we've had surgery as well. It is the scariest thing I've ever been through in my life. You are constantly thinking "Why us? Why Her?" We made it through, but not for the help of this board!! The Moms and Dad's on here answered any question I had with honestly and made me feel it was okay that I felt like I was going insane and share it with them! :) I do know that the Lamboid is one of the rare sutures to fuse and is the easiest to confuse for plagiocephaly as it has the same look, but you would think that it would have been caught by the radiologist. Were X-rays used or a CT? I know X-rays are very unreliable and not the proper way to diagnose or rule out Craniosynostosis.

But I think I'm rambling now!! :) Again, welcome and any questions you have, ask away. I believe for the most part the surgeries are similar with all the sutures, except a different part of the skull is worked on.

Good lucka nd hopefully you get in sooner and get the answers you need!

[laurensmom]

Hi Paula, Welcome!! I'm so sorry to hear about your son. My daughter too was misdiagnosed with Ptosis and plagiocephaly until we went to see a plastic surgeont. We were diagnosed with right unilateral syntosis though. I'm sorry I cant help you with more information on your condition. We just got done with her surgery last week and it's a really hard journey but thank god it is fixable!

You have found a wonderful place here and the people are just unbelieably helpful and supportive. If you need anything please don't hesitate to ask. My prayers are with you.

Denise

[mom2mykidos3]

:welcome

Just wanted to say welcome. This is wonderful support group. It is my life saver. Just be assured that what you are feeling we have all felt. Miriam my daughter has unicoronal CS. We are having the surgery in October. Our PS said that only about 10% of the CS patients have ICP, but there is that chance, plus he said that the patients faces and heads will be sereverly deformed if you don't get it done. And in day that is enough reason for me. I hope you rely on us to talk to. You are in our prayers.

[forgvn724]

Thank you all for your support. This has been all. very scary for me and it is nice to know that I have support from others who have been there.

[camarosqueak]

hi! I am glad I found you! My name is Mary. I have a 3 month old named Caitlyn who has been diagonsed with the same disorder as your child. It has been a very scary time for me and my boyfriend. My daughter was given the wrong diagnose when I took her into the Emergency room about the back of her head. She has alot of problems with crying and acting like she is in pain alot. I have found out that the form of craniosyntosis that our kids have are the most rare. So not many doctors even know how to treat it. I will be taking my daughter monday for a 3d reconstruction ct scan and will find out wednesday when they will schedule her surgery. The kind of cranisyntosis our kids have has to have surgery to treat it. I hope i helped somewhat and I hope to hear more from you. I hope we can go through this journey together. This is a very hard and strength testing time. Hope you are being strong. You and your family are in my prayers!