Bleep. Bleepity-bleep bleep bleep. Bean needs dental surgery. Bleep!
If you are familiar with Williams syndrome, you know that dental problems involving enamel and shape/spacing among other things are very common.
From the moment Bean's first top teeth popped through, even before his WS diagnosis, we knew that his teeth looked different. They looked marble-y, if that makes sense, and they were oddly spaced. We asked some of his doctors about going to the dentist repeatedly, even after receiving the diagnosis, and they suggested holding off since he is so young, uncooperative and he has a severe oral aversion. I went along with it. I shouldn't have. But I did.
About one or two weeks ago, I noticed that his two top incisors were beginning to crumble. They were literally falling apart. And the two top front teeth looked like they were soon to follow. So, I called and scheduled him with the pediatric dentists at Children's. They specialize in kids with special needs (though they do treat typically developing kids, too - Baby J will be going there soon!).
Bean was (really) unhappy through the (brief) exam. The dentist confirmed that he has enamel issues and his top four teeth are in bad shape - probably made worse when his reflux was uncontrolled. The two incisors need to be extracted and they are going to try to save and cap his two front teeth (with white resin caps - not metal caps, thank goodness). She felt the rest of his teeth look good but she wasn't able to get a great look.
Because he is so young and so uncooperative, they need to do the work under general anesthesia. They will do any/all repairs/extractions at that time and they will also do a cleaning and x-rays. This is a good thing, I guess.
He has been under anesthesia twice before (pre-diagnosis) - once for an MRI and once for an upper endoscope - and he did fine but it still makes me nervous.
Any time a child goes under anesthesia it is risky (and scary!) but it's even riskier for someone with Williams syndrome and associated congenital heart defects. The good thing is that we met with his diagnostic referral physician yesterday, too and she is consulting with Bean's cardiologist and she is setting up a meeting for us with the anesthesiologist to make sure we have everything covered. In the meantime, I am reading up on the risks and protocols so I can properly advocate for him.
The surgery is scheduled for early September unless he gets an infection, in which case we will bump it up. I'll be updating as the date gets closer.
At the referral doctor, we also got orders for another kidney ultrasound. The one we had in February was not done with doppler so they did not look for renal artery stenosis - another common concern for WS patients. Renal stenosis can be a contributing factor or cause of hypertension. In the past Bean's blood pressure has been high and they need to rule it out. Fortunately, his bp was reasonable yesterday. Hopefully it will stay that way. Regardless, we will be having the ultrasound done when we get back from vacation.
Bean had a rough day and he was exhausted when we got home. He's doing much better today and we are resolved to not letting us stress (too much) about his upcoming surgery.