Sebastian's Story... Metopic Cranio w partial coronal closure
byon 05-30-2012 at 09:51 AM (1455 Views)
Sebastian was born Nove 28th 2010, but his due date was Dec 30th... so we were sent to the NICU bc he was in respiratory distress. We stayed a total of 2 weeks there, and then i finally got to bring my baby home but it was RSV season so i was told pretty much never to take him out... so i stayed home for literally 6 months with him and his 14 month old brother (talk about going crazy)... Somehow he ended up with RSV anyways... He NEVER slept at night... he would CRY CRY CRY if laid flat... doc said he had reflux but the EXPENSIVE meds did absolutely nothing for him. We started working with a physical therapist bc he wouldn't turn his head to the left so they thought he may have slight torticollis, so we did neck stretches, but his physical therapist thought it was the strangest thing that he wouldn't lay on his bad either... bc honestly most babies HATE tummy time... but if you put sebastian on his back he would immediately roll to his tummy. Well around 4 months i noticed that i didn't feel a soft spot and felt a ridge... thought i was crazy so i waited till his 6 month checkup to mention it... our pediatrician is always rush rush, and she was in and out and i forgot to ask so i told the nurse to send her back in, when she came in she told me that she feels for the soft spot discreetly as she does the ear exam... i told her to recheck for my sanity... thats when she sent us down to xray.. which then led to a Ct scan, which confirmed closure of the metopic suture and partial closure of the coronal suture... but at this point docs say its just cosmetic, so i breathed a sigh of relief, and took my baby home. He continued to scream at night... and even during the day he would grab his head and just screammmm!! soo i took him back to craniofacial who said everything looks fine but he would order another CT scan and an appt w the opthamologist... CT scan showed no change... but the opthamologist was concerned bc his vessels are dialated, he said that means there is or was pressure... so he wants him monitered bc if the pressure continues the vessels can explode... so after that appt we went to the neurologist who said what the opthamologist said is no big deal... that it doesn't mean there is pressure, but ordered an MRI... the MRI came back normal... but we have since had another opthamologist appt where the vessels have gotten slightly bigger since the last one, but he said its nothing to be super alarmed about and said come back in 6 omnths... the neurologist wants a 2nd opinion from the opthamologist which is wierd to me bc the one we went to is one of the best in our area. I do notice the ridge going down his forehead, and his head has been in the 3rd % consistantly. Its killing me bc nobody seems concerned about my baby... craniofacial and neurology didn't wanna make follow ups to moniter him or nothing... i get the "its cosmetic" and kicked out the door. NObody seees my baby scream the way that I do... and the fact that the opthamologist sees something and its like they don't believe him that they want a 2nd opinion... I don't know its just been a stressful thing trying to get doctors to take their time with him. Is there anybody out there who's baby's head has been as small as the 3rd%, with ridge and slight triangular shape, pain and screaming etc that has just been told its cosmetic?? and also IF it is just cosmetic... does anybody know of older people who have craniosynostosis who didn't have the surgery and know what they look like now... will it be a "lifechanging" cosmetic problem where he will be made fun of etc??