All this time, Nick and I have suspected something else was going on, something deeper than just a stiff muscle that caused Tristan to tilt his head, and be a little slower than most babies. I used to always compare him to his little friend Isaac, wondering why a baby that was two months younger was leaps and bounds ahead of him. I had been asking to have him seen by a specialist for months, but his pt always said he was fine, he was normal, blahdi-blahdie-blah. I'm glad I kept pushing the issue. Doctors need to listen to their patients better. I guess having worked at Grandview, I was a little spoiled when it came to good doctors, it's hard to get out there and be a patient myself and see the frustration they deal with when having to be subject to egotistical physicians.
Tristan finally had his appointment at Primary Children's today. After waiting for 3 months, well, 5 actually since that's when I started asking to have it. And it was very productive I thought. Still, a little unnerving. See, we went in hoping to get an answer and treatment plan to help with his perpetual head tilt, which we attributed to his being unable to sit up and crawl, and do all sorts of other things. We thought they would do a simple botox injection to loosen the tight muscle and give him time to strengthen the other one. But, we were met with more "answers" than we had prepared for.
After a thorough examination by the NP and the MD......they were concerned about a couple things not necessarily pertaining to the already problematic torticollus, although we won't know till he has a bunch of tests. First they noticed the head tilt, which is odd because they informed us he should have resolved that by now, something else is making him continue to do it, and also his curved/torqued back. They noticed that his eyes were a little off, meaning they didn't track completely in sync. They also noticed that he didn't seem to have any sense of where is located in space. It's called proprioception. He can't sit up without falling over a second later, but the most concerning part is that he doesn't try to save himself. It's like he doesn't know he is falling. So they were concerned maybe about a dysfunction or malformation of a cranial nerve, specifically IV, and also problems with his brainstem. Wow, that's a lot to take in.
Now, these are all just maybe's. No definitive diagnosis yet. Maybe something's wrong, maybe nothings wrong. But we need to have him tested at least. To make sure there wasn't anything structurally wrong that could be causing his perpetuated head tilt, he had a couple x-rays today. Thankfully they came out normal, and the little booger peed all over the table....haha, giggling the whole time. I'm glad he was such a happy baby for his very long appointment. But he has an MRI (sedated.... :( ...) scheduled for Thursday, and an opthalmology appointment for Friday, and hopefully audiology next week. We need to find out why he can't balance himself, why he doesn't try to stop himself from falling, and why he continually tilts his head and torques his body.
We're just super thankful that someone actually listened to our concerns today, and that they cared enough, and had enough expertise in the field to make conscious decions about his care. Hoping that it's something that can be easily treated, but if not, at least we will be seeing doctors in probably the best pediatric hospital in the west.
Getting his x-ray and giggling at the techs
Naked baby!
When you visit Primary's, you get a prize,
and it's way better than a pack of stickers
or a candy, you get an actual toy!! Way
to go chunkie cheeks! One test down, 3 to go
No comments:
Post a Comment
Note: Only a member of this blog may post a comment.