My son, Drake, is 7 months old and has been diagnosed with Metopic Synostosis.
We are awaiting a surgery date, though expect it to be fairly soon...Doc just has to tie up some loose ends etc.
I am interested in hearing from other cranio moms...particularly metopic.
A few oddities I have noticed about Drake and wonder if anyone else has experienced similar...in no particular order of significance.
1) He was much smaller than expected..only 5lbs 12oz, with a peculiar small head. Our other son has quite a noggin on him...so the small head size was/is shocking. It is not considered microcephalic b/c it grows on the curve, but the curve is something like the 10th percentile give or take. Wondering if the small head is common for Metopics?
2) My first pregnancy with my other son was one of chaos...preterm labor and lots of intervention. So, for this child, we took "preventative" measures. I had a cerclage (cervical stitch) placed at 13 weeks and had progesterone P-17 (?) shots weekly from 20-some-odd-weeks on. Anyone out there with similar pregnancy "complications" resulting in cranio?
3) On account of ultrasounds every 2 weeks, we knew he was head down from VERY EARLY on. He was also wedged over on the right side of my uterus...well, at least it felt like that. He never seemed to move on the left side of my uterus. Anyone else with similar experience?
4) He has had the sound of congestion (I call it "snurggles") from day one. Sort of a raspy rough breathing sound, with or without actual mucus. It is always present and no docs have given any definative reasoning...but, my very unprofessional and unqualified hypothesis is that on account of the midline suture closing...there is some kind of nasal obstruction that is not necessarily easy to be seen on films. Anyone else?
5) His hair pattern and texture is different where it covers the suture. Right front and center, his hair is much thicker than the rest of his head (where the suture is) and actually grows longer there...curling on the forehead in sort of a cupie doll type of "do". Wondering if anyone else noticed this phenomenon?
6) He grabs at his eyes and head...and has even as a very small baby. After testing to rule out eye issues and no obvious correlation to sleepiness etc., it is projected that this behavior is response to pain. However, that theory occasionally gets "dismissed" by some of the doctors he sees, as they say that babies don't respond that way to pain...they just cry. I believe it is DEFINITELY related to the cranio and wondered if anyone else had any insight?
7) He has always been a very peaceful baby for the most part and when we brought him home and for the months to follow...he was such a good sleeper and so mellow that we almost felt something was wrong. Well, now, though he is still good for sleeping a stretch at night from about 12:00am-5:00am....all other "naps" are very short. 20mins...if we are really lucky 30-35. It's as though his sleep is interrupted. Anyone else?
8) On examination for the cranio...the neurosurgeon felt a lump in the rear of Drake's head. The lump had been there and was growing, but I was told it was an "occipital lymph node". The neuro wasn't so sure, so ordered an MRI. The MRI showed really nothing...so it was just called a "fat mass" or something of that nature and the pediatrician still believes it is a lymph node. All of that being said...the lymph (or mass) has been there ALWAYS...anyone else with odd masses or enlarged nodes with cranio kids?
9) When the CT and MRI scans came back, the doc saw an issue with Drake's ear. He wasn't sure what it was...believed it might be "chronic inflamation/infection" ...the bones weren't very clear and the cavity "blurry"...so said he wasn't sure and referred me to ENT (willl be 2 months before he can see me!) Anyway...the baby has no signs of infection or irritation...some wax drainage out of both ears, but absolutely nothing that would indicate an infection etc. He'd had his ears looked in a million times by millions of doctors and no one EVER saw anything abnormal. Even now, the ped says that all he can really see with the "ear thingy scope"...is some additional swelling in that ear, but couldnt' see much more. Sooo...since the two ears are VERY different on CT scan yet it is not obvious from basic exam, I was simply wondering if anyone else had experienced something similar with their cranio kids?
10) And finally...at least for now, because I have lots of observations/questions....
Drake is only 7 months and shows an extreme left side dominance. He has been to a neurologist etc. and they don't see any physical reason for it nor do they suspect any "dystrophies" or "sclerosis" at this time. However, all agree that such an extreme preference for his left hand, left foot etc. is rare at such a young age. Anyone else with cranio kids who seemed dominated by one side earlier than the norm?
I'm glad I found this site and look forward to hearing from y'all.