Carters Story In NS

[cartersmommyNS]

I delivered carter by C-Section On july 26th 2010. C section was performed to reduce risk since my first son was an emergency C section so it was scheduled.
Anyhow..
He came out a happy healthy baby 7 pds and 10 ounces.. and 21 and some inches long, Cant remember as I have two babys within a year of one another lol
About 4-8 weeks after he was born and he also had bad acid reflux, we noticed that he always tilted his head to the right, and then slowly noticed at about 4 months his right side of his head was becoming larger and the crown was turned and his head was "twisted". We took him to the IWK because we were concerned, they gave us info on physitherapy and considered it to be torticollis, We never went to physio as we knew this wasnt what it was since he had a large crown on the back of his head other than just a tilted neck.
We went to see his Family doctor who sent us for xrays just over a week ago, and the xrays had come back and we were told that a part of his skull had fused, and it caused the twisted head and tilted neck..
We did not get a CONFIRMED DIAGNOSIS, so we are going to call the family doc tomorrow who has the results. We have been referred to the NEUROSURGEON. And from everything we have been reading we can safely say our son has left lambdoid cranio(think is how you spell it)
We will find out more soon, but this is the start of our soon to be long journey I think.. Here is some photos of our son.

this is the most recent one, you can tell his right side is different in symetry to the left side


this is a photo of him at 3 months, you can notice he always has one side turned like hes looking somewhere else, but this is him looking at you.


this is a photo of the torticollis, which is a result from the twisted head causing weight on his little neck.

[evergreenmom]

Again sorry you are on this journey but glad you found us- we will keep you company as you face this! Carter is just adorable!

[InfinityRogue]

I'm sorry you'll be making this journey, but he'll do fine. It will seem like a roller coaster of emotions but we're here for you and will support you through this. Any questions you may have or if you just want to vent, feel free to do so. This community helped me through my journey. Good luck with everything, and keep us updated!

[cartersmommyNS]

Thanks soo much with everyones help on here. I am hoping to get in to see his family doctor tomorrow and hopefully we get all the answers we have been looking for. I am going to inform him of the exact diagnosis i think my son has. Hopefully he agrees and we can move on from there and continue my sons road to getting better and a quick recovery.

[cartersmommyNS]

Ok, got an Appt for this afternoon at 4 pm. Its 120 om now.. so oinly a few hours away and hopefully well have some sort of diagnosis.. He first wrote on the chart scoliosis.. weird. But that was ruled out at the day of the xray, now he has a "diagnosis" from the xray tech who looked at his xrays after we had left the hospital. I wouldnt even had known my doctor has a diagnosis from the rxray tech, but I called the hospital where he had it done at and they said that they had sent a paper to him letting him know what they thought it was.. NO PHONE CALL TO ME! argghhh. So disappointed in canadas healthcare system. How could you now call the mother waiting so nervously and let her know the diagnosis?
Anyhow.. I am seeing our family doc this afternoon and we are hoping its the proper diagnosis, and they just dont blow it off. Like every time we were there when he was younger.

[Carmen77]

Oh he is precious!! He has the same tilt my son Lucas has..but the opposite side.. he has tort and plagio and is in a helmet!! Well not currently because its not fitting properly.. But any how thats a different thread!

I've been kind of worried he has been misdiagnosed, im going to have Mateo (cranio baby) Neurosurgeon look at him when we see him in 2wks.. So im kind of glad helmet is off..

Good luck!!

[cartersmommyNS]

we were told that one of his sutures had fused, were u told that as well?

[Carmen77]

No, but my son didn't get an xray, his ped just diagnosed him with tort/plagio.. Now I'm kicking myself in the butt because I should have asked her to refer to a specialist. I should no better!

[cartersmommyNS]

My son had an xray, before we even thought about cranio. Only because they wanted to check for torticollis, and they checked his skull at the same time. The doctor on duty there explained to us he had a shortended neck muscle.. and that one of his sutures had fused in his skill, which caused the head to mishappen. And that he would send the results to my pediatrician who sends us to the NS. I went to the pediatrician today... only results he got from the hospital was the neck xray. And he wasnt aware of the skull xray.. so long story short. I pulled out my paper and showed him what I had thought my son has. He quickly tried to brush it off, and said this would be my first time in 40 yrs I had a case like this. And I said well now this is your first.
And I demanded to see a Neurosurgeon and have another skull xray done to ensure that his suture is in fact fused. I informed there is a limited opportunity to get this done as my son is approaching 12 months next month. And would prefer it to be done now if they are doing surgery. He didnt know what to say. I think he was in shock because I basically told him I will sit in emerg everyday until my son gets to see a Neurosurgeon because I want him diagnosed. I want the results.So, on friday we are headed back to the IWK for more xrays.. And we will get the results right away.

[Janet]

X-rays don't always show cranio, a trained cranio-facial or neurosurgeon should be able to diagnose it, or a CT for sure.