In November we had a developmental checkup for Olivia at the High Risk Clinic at MUSC in Charleston. Dr. Papu was one of the doctors overseeing her care when she was in the NICU, so it was nice to show Dr. Papu how far Livia has come since last year.
At that time we also had an evaluation by a pediatric dentist. Livie has 8 teeth, and 3 out of the four top ones were not completely formed. I learned that teeth are one of the last things formed in the womb and they grow in rings, like trees. When a traumatic event occurs, like a premature birth, the body puts effort into healing rather than growing. Along with the antibiotics given to her during her NICU stay, her teeth did not form properly. They looked like slivers of teeth and she was diagnosed with dental hypoplasia. You could see some of the interior of the tooth and the dentist was worried about dental caries. I was very impressed with the knowledge of the dentist at the time, and she took detailed pictures of Olivia's mouth before setting us up with a follow up appointment for today.
Traveling with Livie to a doctor's appointment is always tricky. Her primary source of nutrition is still Neosure from a bottle. She can't drink from a cup and she won't drink anything that isn't exactly the right temperature. If it is a neutral weight and temperature, it almost seems as if she can't feel it in her mouth or recognize that she needs to be eating. It takes about 45 minutes to an hour to feed her most times. Doctor's appointments away from Beaufort, even just one of them, usually takes all day to complete. It's a two hour drive, so we have to leave early enough to feed her there before the appointments so we can do the requisite waiting around in busy offices, and then feed her afterwards before the drive home. And the doctors there are excellent - they take their time with you and your child so you are often there for some time.
Olivia will always have some mouth/teeth issues. One of the presentations of PWS for her is reduced saliva. Her teeth and mouth need to be brushed often, her breath is often stinky, her saliva is thick. Her dentist mentioned that we would need to work harder on preventing cavities with her and that regardless of her future diet, she should eat (when possible) her carbohydrates first, followed by proteins and fat. Apparently this helps neutralize the sugar from the carbs and reduces the likelihood of cavities by creating a more acidic environment. So interesting! I asked her about some toothpaste I had recently picked up in KC (Tom's of Maine) because I wanted less sugar in the girls' toothpaste. She agreed that it was a good one for Olivia, and will give me some feedback on other items I purchased after I send her the labels from them. I picked up a natural mouth spray with xylitol in it - she was thumbs up on the xylitol but wanted to know more about the spray.
The dentist had recently gone to a conference on Pediatric Dentistry after meeting Olivia in November. It was encouraging to me to hear that she specifically sought out more information on the issues facing Livie. When she mentioned that she looked for PWS dental pictures on the internet but couldn't find them, I told her that she was welcome to use the pictures she kept taking of Livie's mouth in any way that would help other dentists. Next visit, I will sign consent forms for her to use Olivia's data for research or other purposes. During the conference, she asked about Biotene for babies and children (to help with salivary issues). Dr. Miller recommended it for use with Olivia, but there are no protocols for children under 12. When I called the company, they refused to even discuss possibilities with me due to FDA regulations (understandable, of course). Our dentist sought out many experts at the conference asking about this and was told there was nothing out there but it was an interesting concept. So I told her if she could figure out something that worked for Olivia, she could get rich and famous!
The conversations with the dentist were extremely informative and interesting; she really knows her stuff. They ended up giving Olivia two different treatments that resulted in her having normal looking teeth, and covering up the weak areas so the teeth don't further deteriorate. We'll go back in 3 more months for a follow up.