mv3kids
04-24-2008, 05:42 PM
Stijn was born at home, just like his sister. Shortly after birth, we noticed a ridge running down his forehead en his head just looked a bit odd. Nobody paid attention to it, so neither did we.
When Stijn was 4 months, he got an urinary tract infection and we had to go to a pediatrician. We had to come back a week later and then I asked if it was ok that his head hadn't grown in a month. She frowned, looked closer at his head, said that his forehead was triangular-shaped and told us to head for radiology for an X-Ray without any further explanation. When looking at the form, I saw the word craniosynostosis and I had no idea what it was. That evening I started searching on the internet. Later that evening I 'knew' Stijn had metopic cranio and I cried all night. A week later, the pediatrician called us back with some results. She told us everything was fine, all sutures were still open! We didn't have to come back, since it was just a variation of a normal shaped head.
At first I was so relieved, but at the same time me and my husband felt that we weren't really taken seriously.
In the meantime, Stijn wasn't doing well and therefore I decided to go for a second opinion. Stijn is my third child and I never had this nagging gut feeling before. I knew something wasn't right.
The new pediatrician was also very concerned and turned Stijn upside down to figure out wat was wrong with him. Fortunately his blood was ok, but he also didn't trust Stijn's headshape. We were sent to a ps in our national Craniofacial Center and we were told it was indeed metopic cranio.
In October 2007, Stijn had a 3D-CT scan and it confirmed the need for surgery.
Stijn's development slowed down quite a bit, he often cried at night as if he was in pain and he gradually dropped in the growth charts. I feel that somehow it all had to do with his cranio so I was actually quite relieved that he was just about to get some room for his brain.
On November 28th, Stijn had surgery. He did extremely well and his swelling was relatively minimal for a CVR/FOA. His eyes were only shut for a day! Five days after surgery we went home and he acted as if nothing had ever happened. Stijn was just a little more careful than he'd normally be.
That same month, our worries rose again because Stijn ate incredible amounts of food, but he didn't gain weight at all, and even lost over a pound. He cried a lot and didn't seem to be happy. He also hadn't learned to do any new stuff since he was 9 months so we made another appointment with his pediatrician. Once again, his blood was just fine, but we got an appointment with a clinical geneticist.
Then a miracle happened. Out of the blue, Stijn showed an incredible progress just after his birthday. His head had grown quite a bit, and he even gained weight and suddenly grew a lot taller.
And now Stijn is nearly 15 months old, doing great, walking around, speaking in his own language with some recognisable words.
We enjoy every minute of our mr. charming, but deep inside I'm still worried that he'll need repeat surgery or something like that.
It would be so great to have an opportunity to just peek into the future so we all know what we can expect.
Greetings!
When Stijn was 4 months, he got an urinary tract infection and we had to go to a pediatrician. We had to come back a week later and then I asked if it was ok that his head hadn't grown in a month. She frowned, looked closer at his head, said that his forehead was triangular-shaped and told us to head for radiology for an X-Ray without any further explanation. When looking at the form, I saw the word craniosynostosis and I had no idea what it was. That evening I started searching on the internet. Later that evening I 'knew' Stijn had metopic cranio and I cried all night. A week later, the pediatrician called us back with some results. She told us everything was fine, all sutures were still open! We didn't have to come back, since it was just a variation of a normal shaped head.
At first I was so relieved, but at the same time me and my husband felt that we weren't really taken seriously.
In the meantime, Stijn wasn't doing well and therefore I decided to go for a second opinion. Stijn is my third child and I never had this nagging gut feeling before. I knew something wasn't right.
The new pediatrician was also very concerned and turned Stijn upside down to figure out wat was wrong with him. Fortunately his blood was ok, but he also didn't trust Stijn's headshape. We were sent to a ps in our national Craniofacial Center and we were told it was indeed metopic cranio.
In October 2007, Stijn had a 3D-CT scan and it confirmed the need for surgery.
Stijn's development slowed down quite a bit, he often cried at night as if he was in pain and he gradually dropped in the growth charts. I feel that somehow it all had to do with his cranio so I was actually quite relieved that he was just about to get some room for his brain.
On November 28th, Stijn had surgery. He did extremely well and his swelling was relatively minimal for a CVR/FOA. His eyes were only shut for a day! Five days after surgery we went home and he acted as if nothing had ever happened. Stijn was just a little more careful than he'd normally be.
That same month, our worries rose again because Stijn ate incredible amounts of food, but he didn't gain weight at all, and even lost over a pound. He cried a lot and didn't seem to be happy. He also hadn't learned to do any new stuff since he was 9 months so we made another appointment with his pediatrician. Once again, his blood was just fine, but we got an appointment with a clinical geneticist.
Then a miracle happened. Out of the blue, Stijn showed an incredible progress just after his birthday. His head had grown quite a bit, and he even gained weight and suddenly grew a lot taller.
And now Stijn is nearly 15 months old, doing great, walking around, speaking in his own language with some recognisable words.
We enjoy every minute of our mr. charming, but deep inside I'm still worried that he'll need repeat surgery or something like that.
It would be so great to have an opportunity to just peek into the future so we all know what we can expect.
Greetings!