new here with questions

[ameenasmom]

hi mamas i'm new here i think my daughter has cranio no diagnosis yet but her soft spot is close she is 5 months old she will turn 6 months at the end of the month.i always notice that her head is long and narrow every time i bring to the pediatrician he dismiss it but on her 4 month check up i brought it again he told me it's because she is a preemie and they all have long and narrow heads and hers should get better when she starts sitting also her eyes are far apart and slanted her forehead is sticking out her nose is flat which make me believe she has down syndrome but the pedi doesn't think so.does any of you moms come across a kid with cranio and downs? what should i ask the pediatrician?should i just wait and see or just don't say anything? she was 7 weeks early weight 2 lbs 10 oz.thank you so much ladies.

[brynnsmom]

My daughter has a craniofacial syndrome called craniofrontonasal dysplasia, which is very rare so chances are a general ped. wouldn't be able to diagnosis it. Our ped. had never heard of it before Brynn... there are many craniofacial syndromes though that all have different features. My daugher has a flat wide nose and wide set eyes. She is developing very normally and has no major issues other than the craniosynostosis and some mild issues with her bone structure and face structure. Do you have a picture of her you could post?

[AJ's Mommy]

If your pediatrition is blowing you off I would consult a different one for sure!! He should take you seriously! Mommas know best. Keep pushing for answers. Do you have any pics that you could post for us to see and give you some opinions on? Im so sorry you are having these concerns!!

[ameenasmom]

thank you for welcoming me and replying it means a lot to me i gon't know how to post pictures here and the pictures that i have are on my phone but i can e mail them.my e mail is koitahairsister@gmail.com

[jamiesmom]

Hi. I am sorry you are having no luck with your pedi. I don't think many of them are that familiar with cranio and associated syndromes. We were lucky b/c my daughter was born at a teaching hospital in Boston and they have geneticists etc on staff and were able to diagnose her quickly. But, even there, the pedi knew something was wrong, but not what is was-he needed the specialists to sort it out further. You might want to try to go to a specialist-possibly a craniofacial plastic surgeon or a neurosurgeon who has seen cranio. They could tell you for sure, I would think. If that isn't possible, why not seek another pedi and maybe ask for imaging of the skull to be sure?
Good luck!

[ameenasmom]

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[ameenasmom]

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[JIC0930]

Welcome to CK! I'm sorry your concerned about your little cutie. I dont see anything concerning in your picture. A birds eye view would show more in terms of cranio. Either way follow your insticts momma and keep pushing for the referral. :hugg