Recently we were told by our family Dentist that our son Robert, who is now 28, and has Prader-Willi Syndrome. would need possibly ten crowns on his back teeth. Robert's teeth cleaning twice a year is covered by Medical Assistance, but dental restorations are generally not covered. Medical Assistance would cover extracting the teeth, not a good soution. I spoke with our dentist about finding some sort of financial help, as we were looking at possibly twenty thousand dollars worth of dental work. We live in a state that has a dental program at our state University. That would be one option, but with this amount of restorations, the appointments could be staggering. Our Social Worker had no other suggestions, as well as our dentist.
I have worked many years as a caterer and remembered a member of our church and a client Jim Wiltz started Patterson Dental, a company that manufactures dental restorations. I called to see if he had a suggestion. Jim told me he had been involved with Dental Lifeline, a program that will pay for the dental work, that people with disabilities need done. He advised me to go online and fill out the application form.
Robert's application was accepted, and the program began looking for local dentist's that volunteer there time to help him. When I spoke to my husband Carey about finding help for Robert I said " Aren't we so blessed that we have so many people in our life who will help us?" Carey replied "I will tell you how we are blessed, having you to look for these kinds of programs for our son." Of course that brought tears to my eyes, It's always nice to be appreciated!
Dental Lifeline was started over forty years ago in Colorado by Larry Coffee who is a dentist, and had special needs sister. Initially be began by educating people in the dental profession on how to better serve people with disabilities. Often their lack of motor skills and motor memory can hinder proper cleaning
The Dental Lifeline Network now treats people with disabilities, the elderly and the medically fragile. They have served over 117,000 patients. The network has over 15,000 dentists and many laboratories, like Patterson Dental, who donate their services. Dental Lifeline relies on their volunteers, so services vary from state to state. Program coodinators screen and match patients.
To get started you need to fill out eligibility forms on line. We were quickly informed that we qualified. Robert had his first appointment with Dr. Kevin Anderson in Oakdale. Molds were made of his teeth and a treatment plan was created. Dr Anderson had us consult with an Orthodontist to see if Robert's teeth alignment were at fault for the erosion. Dr Admott, the orthodontist, took more impressions and suggested that braces might be an option. He also felt that Robert's saliva may be causing problems, as it is extremely viscus. The idea of braces did not seem practical for the amount of correction Robert needed. He does not have the best oral hygiene and forgoing sticky candy would never occur to him.
Our next visit was with Dr. Angela Rake DDS at Dakota Valley Dental who volunteered to remove Robert's four wisdom teeth. She would do this with local anesthesia, as some people with PWS can have problems with being put to sleep. This is what really impressed me with the program. All the the people who are treating Robert are really informed about his medical issues. The syndrome is relatively rare and it's sometimes hard to get the best information. Robert's teeth were extracted in record time. They were fully erupted and easily removed. We will now move on to the restoration part of the care plan. Several crowns and restorations will need to be done, about eight teeth are involved.
Robert is a cooperative patient. It is hard to know how much pain he feels. He was never able to identify whether shoes were too small or if he was getting sunburned. Donated Dental has impacted his life in a very positive way. All of the services that he is receiving would have had to be paid for by our family. Until very recently Robert had only about fifty extra dollars a month spending money from his SSI check. He has a small Special Needs Trust that he uses for skiing and camp. Of course we would have paid for his dental work, but are extremely grateful that we don't have to. Teeth are so important to quality of life.
We want to say Thank You so much to all the people who have helped us at Dental Lifeline Network, \\http:\dentallifeline.org. They are doing great work for people who really need their help. Navigating the health care system can be a real challenge. Our coordinator Catherine did all that work for us. As Robert's guardians /parents we face many hard decisions on how to manage this difficult syndrome. We are so grateful for the helping hands that keep us moving forward.