User login
LONDON – , pediatric dentist Susanne Krämer told attendees at the first EB World Congress.
While it may not be the first thing on the minds of families coming to terms with their children having a chronic and potentially debilitating skin disease, it is important to consider oral health early to ensure healthy dentition and mouth function, both of which will affect the ability to eat and thus nutrition.
When there are a lot of other health issues, “dentistry is not a priority,” Dr. Krämer acknowledged in an interview at the meeting, organized by the Dystrophic Epidermolysis Bullosa Association (DEBRA).
Something as simple as brushing teeth can be very distressing for parents of a child with EB, she observed, especially if there is dysphagia and toothpaste may be getting into the airways accidentally.
Oral health was one of the topics that patients with EB and their families said would be good to have some guidance on when they were surveyed by DEBRA International. This led the charity to develop its first clinical practice guideline in 2012. Dr. Krämer was the lead author of the guidelines, which are about to be updated and republished.
The “Oral Health for Patients with Epidermolysis Bullosa – Best Clinical Practice Guidelines” (Int J Paediatr Dent. 2012;22 Suppl 1:1-35) are in the final stages of being revised, said Dr. Krämer, who is head of the department of pediatric dentistry at the University of Chile in Santiago. Although there is not much new evidence since the guidelines were first published, “we do have a lot of new technologies within dentistry that can aid the care of EB,” she said.
An important addition to the upcoming 2020 guidelines is a chapter on the patient-clinician partnership. This was added because “you can have fantastic technologies, but if you don’t have a confident relationship with the family and the patient, you won’t be able to proceed.” Dr. Krämer explained: “Patients with EB are so fragile and so afraid of being hurt that they won’t open their mouth unless there is a confidence with the clinician and they trust [him or her]; once they trust, they [will] open the mouth and you can work.”
Dr. Krämer noted that timing of the first dental appointment will depend on the referral pathway for every country and then every service. In her specialist practice the aim is to see newly diagnosed babies before the age of 3 months. “Lots of people would argue they don’t have teeth, but I need to educate the families on several aspects of oral health from early on.”
Older patients with EB may be more aware of the importance of a healthy mouth from a functional point of view and the need to eat and swallow normally, Dr. Krämer said, adding that the “social aspects of having a healthy smile are very important as well.”
Oral care in EB has come a long way since the 1970s when teeth extraction was recommended as the primary dental treatment option. “If you refer to literature in the 90s, that said we can actually restore the teeth in the patients with EB, and what we are now saying is that we have to prevent oral disease,” Dr. Krämer said.
Can oral disease be prevented completely? Yes, she said, but only in a few patients. “We still have decay in a lot of our patients, but far less than what we have had before. It will depend on the compliance of the family and the patient,” Dr. Krämer noted.
Compliance also is a factor in improving mouth function after surgery, which may be done to prevent the tongue from fusing to the bottom of the mouth and to relieve or prevent microstomia, which limits mouth opening.
“We are doing a lot of surgeries to release the fibrotic scars ... we have done it in both children and adults, but there have been better results in adults, because they are able to comply with the course of exercises” after surgery, Dr. Krämer said.
Results of an as-yet unpublished randomized controlled trial of postoperative mouth exercises demonstrate that patients who did the exercises, which involved using a device to stretch the mouth three times a day for 3 months, saw improvements in mouth opening. Once they stopped doing the exercises, however, these improvements faded. Considering the time spent on dressing changes and other exercises, this is perhaps understandable, she acknowledged.
Prevention, education, continual follow-up, and early referral are key to good oral health, Dr. Krämer emphasized. “If there is patient-clinician partnership confidence, they can have regular checkups with dental cleaning, with a fluoride varnish, different preventive strategies so they do not need to get to the point where they need general anesthesia or extractions.” Extractions still will be done, she added, but more for orthodontic reasons, because the teeth do not fit in the mouth. “That is our ideal world, that is where we want to go.”
LONDON – , pediatric dentist Susanne Krämer told attendees at the first EB World Congress.
While it may not be the first thing on the minds of families coming to terms with their children having a chronic and potentially debilitating skin disease, it is important to consider oral health early to ensure healthy dentition and mouth function, both of which will affect the ability to eat and thus nutrition.
When there are a lot of other health issues, “dentistry is not a priority,” Dr. Krämer acknowledged in an interview at the meeting, organized by the Dystrophic Epidermolysis Bullosa Association (DEBRA).
Something as simple as brushing teeth can be very distressing for parents of a child with EB, she observed, especially if there is dysphagia and toothpaste may be getting into the airways accidentally.
Oral health was one of the topics that patients with EB and their families said would be good to have some guidance on when they were surveyed by DEBRA International. This led the charity to develop its first clinical practice guideline in 2012. Dr. Krämer was the lead author of the guidelines, which are about to be updated and republished.
The “Oral Health for Patients with Epidermolysis Bullosa – Best Clinical Practice Guidelines” (Int J Paediatr Dent. 2012;22 Suppl 1:1-35) are in the final stages of being revised, said Dr. Krämer, who is head of the department of pediatric dentistry at the University of Chile in Santiago. Although there is not much new evidence since the guidelines were first published, “we do have a lot of new technologies within dentistry that can aid the care of EB,” she said.
An important addition to the upcoming 2020 guidelines is a chapter on the patient-clinician partnership. This was added because “you can have fantastic technologies, but if you don’t have a confident relationship with the family and the patient, you won’t be able to proceed.” Dr. Krämer explained: “Patients with EB are so fragile and so afraid of being hurt that they won’t open their mouth unless there is a confidence with the clinician and they trust [him or her]; once they trust, they [will] open the mouth and you can work.”
Dr. Krämer noted that timing of the first dental appointment will depend on the referral pathway for every country and then every service. In her specialist practice the aim is to see newly diagnosed babies before the age of 3 months. “Lots of people would argue they don’t have teeth, but I need to educate the families on several aspects of oral health from early on.”
Older patients with EB may be more aware of the importance of a healthy mouth from a functional point of view and the need to eat and swallow normally, Dr. Krämer said, adding that the “social aspects of having a healthy smile are very important as well.”
Oral care in EB has come a long way since the 1970s when teeth extraction was recommended as the primary dental treatment option. “If you refer to literature in the 90s, that said we can actually restore the teeth in the patients with EB, and what we are now saying is that we have to prevent oral disease,” Dr. Krämer said.
Can oral disease be prevented completely? Yes, she said, but only in a few patients. “We still have decay in a lot of our patients, but far less than what we have had before. It will depend on the compliance of the family and the patient,” Dr. Krämer noted.
Compliance also is a factor in improving mouth function after surgery, which may be done to prevent the tongue from fusing to the bottom of the mouth and to relieve or prevent microstomia, which limits mouth opening.
“We are doing a lot of surgeries to release the fibrotic scars ... we have done it in both children and adults, but there have been better results in adults, because they are able to comply with the course of exercises” after surgery, Dr. Krämer said.
Results of an as-yet unpublished randomized controlled trial of postoperative mouth exercises demonstrate that patients who did the exercises, which involved using a device to stretch the mouth three times a day for 3 months, saw improvements in mouth opening. Once they stopped doing the exercises, however, these improvements faded. Considering the time spent on dressing changes and other exercises, this is perhaps understandable, she acknowledged.
Prevention, education, continual follow-up, and early referral are key to good oral health, Dr. Krämer emphasized. “If there is patient-clinician partnership confidence, they can have regular checkups with dental cleaning, with a fluoride varnish, different preventive strategies so they do not need to get to the point where they need general anesthesia or extractions.” Extractions still will be done, she added, but more for orthodontic reasons, because the teeth do not fit in the mouth. “That is our ideal world, that is where we want to go.”
LONDON – , pediatric dentist Susanne Krämer told attendees at the first EB World Congress.
While it may not be the first thing on the minds of families coming to terms with their children having a chronic and potentially debilitating skin disease, it is important to consider oral health early to ensure healthy dentition and mouth function, both of which will affect the ability to eat and thus nutrition.
When there are a lot of other health issues, “dentistry is not a priority,” Dr. Krämer acknowledged in an interview at the meeting, organized by the Dystrophic Epidermolysis Bullosa Association (DEBRA).
Something as simple as brushing teeth can be very distressing for parents of a child with EB, she observed, especially if there is dysphagia and toothpaste may be getting into the airways accidentally.
Oral health was one of the topics that patients with EB and their families said would be good to have some guidance on when they were surveyed by DEBRA International. This led the charity to develop its first clinical practice guideline in 2012. Dr. Krämer was the lead author of the guidelines, which are about to be updated and republished.
The “Oral Health for Patients with Epidermolysis Bullosa – Best Clinical Practice Guidelines” (Int J Paediatr Dent. 2012;22 Suppl 1:1-35) are in the final stages of being revised, said Dr. Krämer, who is head of the department of pediatric dentistry at the University of Chile in Santiago. Although there is not much new evidence since the guidelines were first published, “we do have a lot of new technologies within dentistry that can aid the care of EB,” she said.
An important addition to the upcoming 2020 guidelines is a chapter on the patient-clinician partnership. This was added because “you can have fantastic technologies, but if you don’t have a confident relationship with the family and the patient, you won’t be able to proceed.” Dr. Krämer explained: “Patients with EB are so fragile and so afraid of being hurt that they won’t open their mouth unless there is a confidence with the clinician and they trust [him or her]; once they trust, they [will] open the mouth and you can work.”
Dr. Krämer noted that timing of the first dental appointment will depend on the referral pathway for every country and then every service. In her specialist practice the aim is to see newly diagnosed babies before the age of 3 months. “Lots of people would argue they don’t have teeth, but I need to educate the families on several aspects of oral health from early on.”
Older patients with EB may be more aware of the importance of a healthy mouth from a functional point of view and the need to eat and swallow normally, Dr. Krämer said, adding that the “social aspects of having a healthy smile are very important as well.”
Oral care in EB has come a long way since the 1970s when teeth extraction was recommended as the primary dental treatment option. “If you refer to literature in the 90s, that said we can actually restore the teeth in the patients with EB, and what we are now saying is that we have to prevent oral disease,” Dr. Krämer said.
Can oral disease be prevented completely? Yes, she said, but only in a few patients. “We still have decay in a lot of our patients, but far less than what we have had before. It will depend on the compliance of the family and the patient,” Dr. Krämer noted.
Compliance also is a factor in improving mouth function after surgery, which may be done to prevent the tongue from fusing to the bottom of the mouth and to relieve or prevent microstomia, which limits mouth opening.
“We are doing a lot of surgeries to release the fibrotic scars ... we have done it in both children and adults, but there have been better results in adults, because they are able to comply with the course of exercises” after surgery, Dr. Krämer said.
Results of an as-yet unpublished randomized controlled trial of postoperative mouth exercises demonstrate that patients who did the exercises, which involved using a device to stretch the mouth three times a day for 3 months, saw improvements in mouth opening. Once they stopped doing the exercises, however, these improvements faded. Considering the time spent on dressing changes and other exercises, this is perhaps understandable, she acknowledged.
Prevention, education, continual follow-up, and early referral are key to good oral health, Dr. Krämer emphasized. “If there is patient-clinician partnership confidence, they can have regular checkups with dental cleaning, with a fluoride varnish, different preventive strategies so they do not need to get to the point where they need general anesthesia or extractions.” Extractions still will be done, she added, but more for orthodontic reasons, because the teeth do not fit in the mouth. “That is our ideal world, that is where we want to go.”
REPORTING FROM EB 2020