Microsoft word - teleseminar transcript from dec. 10 2012 draft.docx

Presenters: Dr. Robert Carmichael and Dr. Marshall Freilich
Meghan: I would just want to start by saying good evening to everybody and welcome to the
Canadian Ectodermal Dysplasia Syndromes Association Dental Management Seminar. I will
start this evening with a few basic administrative rules and would just ask that each of you accept
our presenters. Hit star 6 on your phone, this will mute your line so that we don’t hear the
background noise, out of respect for all the other attendees and the presenters. And we won’t be
able to hear you, so if you have a question or comment we ask that you simply hit star 6 again
and your phone will unmute and we’ll be able to hear you at that time. So can I ask everyone to
do that now please.
Tonight, I am very proud to introduce Dr. Marshall Freilich and Dr. Robert Carmichael who have generously donated their time to share their expertise with us this evening. The program will be an hour long, beginning with a 20 to 30 minute presentation, followed by a question and answer period. We ask that everyone be cognisant of the time so every participant has a chance to ask their question. Dr. Freilich, like many of you on this call, is a registered CEDSA supporter, and he joined us this past September. He is the coordinator of oral and maxillofacial surgery at Holland Bloorview Kids Rehabilitation Hospital and a staff of oral and maxillofacial surgeon at Humber River Regional Hospital and the Hospital for Sick Children. He is joined by his colleague, Dr. Robert Carmichael, who is a certified specialist in prosthodontics and the chief of dentistry and director of the Ontario Cleft Lip and Palate Craniofacial and Dental Program, which is a great program. He is coordinator of the International Team for Implantology Scholarship Centre at Holland Bloorview Kids Rehabilitation Hospital. He is the coordinator of prosthodontics at Sick Kids and he is an assistant professor in dentistry at the University of Toronto. Thank you very much to both of you for joining us this evening, and I’ll now turn the call Dr. Freilich: Great, well Meghan, first of all, thank you very much for inviting us this evening.
I’m going to apologise in advance for my voice which is just this lingering seasonal thing, so if
anybody needs me to repeat anything, please by all means. First of all, can you hear me alright?

Meghan: Perfectly, thank you. Yes, I can. So if anybody can’t, just send me an email or sign
back in.

Dr. Freilich:
Perfect. So, we thought maybe we would begin with some generalized overview
of information. Thank you we do have the list of questions that you provided us with, and
certainly if more come up along the way, it’s kind of an open-forum discussion or we could hold
all the questions until the end, whatever works best in this format.
I think we ventured into this initially with recognition of some discussions that Meghan and I had
that perhaps it might be helpful to us as a reconstructive organization to help make people more
aware of the services that we have to offer to children and families who are dealing with
ectodermal dysplasia. I had the privilege to meet Meghan at a fundraising event back a few
months ago.
One of the things that comes to our attention fairly frequently are comments that our patients say to us that it took a long time to find dental specialists who are familiar with the conditions that our children have. Now Meghan mentioned a little bit about who Dr. Carmichael and I are, but to expand on that theme a little bit, we work in tandem here at the Holland Bloorview Hospital where we have a multidisciplinary team of dental specialists that consist of prosthodontists like Dr. Carmichael, oral and maxillofacial surgeons like myself, and orthodontists. In children with ectodermal dysplasia, those treatments often mandate involvement from all three of those specialities to be able to provide comprehensive dental care. So we’re very lucky to be able to work within a situation where we have all of the specialists under one roof. This can often be a very helpful thing when we meet families who require multiple consultations or for many of the families who travel long distances to our centre to come to see us from distant locations. So we’re able to offer many services directly on-site and we have been involved for a long time in the care of many, many children with ectodermal dysplasia. That’s not all that we do, we treat many other types of situations that are in some ways similar to ectodermal dysplasia but have many other differences. One of the common similarities in our program is the congenital absence of teeth. We specialize is advance reconstruction in children and adolescents with missing teeth. Now some of those reconstructions can involve the use of dental implants and in other situations they still involve the use of conventional dental bridges and removable partial dentures. We’re able to look at every situation on a case-by-case basis and make some recommendations and involve families in the decisions in terms of the treatments that we eventually select for each patient. Every situation, of course, is very different and individualized. We start off by collecting histories and diagnostic information that enables us to arrive at a very case-specific treatment plan. In almost every situation, we’re able to offer several treatment options. When we start off looking at a child who is severely missing many teeth with ectodermal dysplasia, one of the first things that we sit down with our families and do is say: “okay we don’t just have one possible treatment solution, but let’s explore two or three scenarios,” and see what it is that works best for each family.” We look at all the relative advantages and disadvantages of that appropriate treatment plan. I understand, Meghan, from your email that we’re joined tonight by families from several different provinces and possibly from outside of Canada? Meghan: That’s right and so one of the challenges we have found is that there isn’t a consistent
place to go, that we’re aware of, to find out what kind of provincial or territorial funding is
available. We do know about the cranial facial program in Ontario, some provinces have
something else, some provinces don’t have anything. I think that’s a big challenge for some
families because it’s difficult to find.

Dr. Freilich
: And that would I think, as you surmise what I was leaning towards, as we’re very
fortunate in Ontario of course with our current provincial assistance with ectodermal dysplasia,
but I was aware that there were some variations across the country but not very familiar with the
details on that. So, certainly as we know it is a very significant factor and what we always try to
do, of course, is look at different treatment options. One of the realities of what we try to offer is
we have to take financial support, or lack thereof, into consideration in the different types of
treatments we have to offer. That’s not to say that in every situation the most expensive
treatment plan is the best treatment plan, by the way. The financial resources that are available to
us don’t necessarily mean that what we’re offering is necessarily a compromised treatment.
Again, we do consider ourselves very lucky in Ontario to have the support of the provincial
government. It sounds like everyone joining us from Ontario is somewhat familiar with that
program. Now, that program is administered through Holland-Bloorview and so when we meet a
child who has recently been diagnosed with ectodermal dysplasia, one of the very first things we
do is we invite them in to our centre for an eligibility appointment. At that point because, as
you’ve indicated, Dr. Carmichael is one of the directors on the cleft palette funding program,
we’re able to fairly easily and quickly get some turnaround confirmation of funding eligibility. I
guess if there’s one good aspect of this particular diagnosis, from the funding prospective, is at
this point in time the Ministry still provides uncapped funding for the diagnosis of ectodermal
dysplasia. In some of the other conditions that we treat here at Holland-Bloorview have capped
limits on the funding that the government makes available. We still have that protection in the
funding program for this situation, so again we’re very lucky from that perspective. Perhaps at
this time, I’ll turn things over to Dr. Carmichael and ask him to add to what we’ve already
started to discuss.

Dr. Carmichael:
Hello everybody, Dr. Carmichael here. I just wanted to first of all express my
thanks to Dr. Freilich for setting this up because it’s actually something we’ve been talking about
for a long, long time. We’ve relied always on word of mouth and disseminating information
about our program and about where we’re located, over the years. The message that keeps
coming back to us, and it’s taken awhile to sink in, is that the word doesn’t really tend to get out
that way. So we’re actually in the middle of initiating some marketing and promotional programs
to see if we can spread the word a bit. Anyway, that’s just to say that it’s a really good idea that
we were able to come together tonight in this forum. So I’m not sure where our audience hails
from, I gather it’s from all over Ontario?

And we have some members from B.C. and we have somebody from New Brunswick
on the call. A number of the questions have come from across Canada, including Alberta.
Nobody from the territories at this point has sent us in questions, but yes, Dr. Carmichael, our
members are from across the country.
Dr. Carmichael: Well and that of course sort-of underscores a central problem that we have in
treating children with ectodermal dysplasia and that access to care is limited by geography. And
the care of patients with this condition is not something that is taught, or indeed could be taught,
in undergraduate dental programs. If you’re lucky, as a graduate student in oral and maxillofacial
surgery or prosthodontics, or orthodontics, you might see one patient and you might get to take
part in the treatment of that patient.

That was a question that somebody had asked which was “how much training and
teaching is given in dental schools about ectodermal dysplasia?” And you’re saying, at the
undergraduate level, there is very little and maybe only at the Master’s level. I think I can speak
for most of our supporters when I say that they were very used to walking into any kind of
medical specialists office and the reaction is “Oh, I never thought I’d see a child with this.” Or,
they tend to bring other people into the room just because they’ve never treated a child with
ectodermal dysplasia which can be exciting for them, but can be frustrating for us as parents. So,
do you have to specialize in maxillofacial surgery in order to start to really learn about
ectodermal dysplasia? Is it because it’s so complex or is it because at the undergraduate level
you’re getting more of an overview?

Dr. Carmichael:
Now, Dr. Freilich is chomping at the bit to answer this question so he would
like to take the receiver.


Dr. Freilich:
The reason I’m chomping at the bit is because, just to expand on what Dr.
Carmichael has said, I went through my entire undergraduate dental training, an advanced dental
residency in Vancouver, and a residency in maxillofacial surgery at Dalhousie University
without ever encountering this. It was my good fortune to spend a year as a fellow in pediatric
reconstructive surgery and that was where I found this training. I can’t say that it was by any
grand master plan, it was really just a very fortuitous thing for me to be able to fall into this. But
I think that just really touches on the limited exposure that a lot of dental programs – both
undergraduate and graduate levels – have in this condition.

Okay. Well, I’m going to be talking to you a bit about that because I have some ideas
on maybe some things we can change that. For the members, if anybody has any questions and
they want to come on the line, absolutely, come on, hit star 6, and ask your question. One of the
questions that we had sent to us, and this was just touched on by Dr. Carmichael, for example,
my child goes to CHEO and he is approved under the cranial facial program as having
ectodermal dysplasia, but I thought it was capped at $30,000?

Dr. Carmichael:
No, the cap applies only to patients with so-called ‘priority two diagnoses’ and
that would include kids with congenital absence of teeth where it’s not associated with a
syndrome like ectodermal dysplasia.

Dr. Carmichael: So, ectodermal dysplasia is considered for the purposes of the funding program
as a craniofacial syndrome which lumps it together with cleft lip and palette. So for that
classification of diagnoses, there is no funding cap.

Participant 1:
I just have a quick question about that. As far as the priority two classification, I
actually have two kids that are affected by ectodermal dysplasia. My 23-month old, we suspect is
a carrier, and my 10-month old actually has it, but the 23-month old is the one with missing
teeth. So, if he was just diagnosed as a carrier, would that be a priority two classification?

Dr. Carmichael:
Wow, that’s a good one. I think not, I think first of all, any condition where
there is ectodermal dysplasia or cleft lip and palette or a simple congenital absence of teeth
comes in all shades of the spectrum. It varies in intensity and penetration. This is such a difficult
question to answer, it would probably require the input of a group of the dental directors to come
to a reasonable solution. My gut feeling is that if there was a demonstrable craniofacial anomaly
caused by carriage of the gene, and it doesn’t matter whether you have one copy or two copies.
In other words, it doesn’t matter if you’re a carrier or have full expression of the disorder.
Whether or not you’re funded well rely upon the severity of the condition, so if it’s severe
enough that you exhibit some of the signs and symptoms of the anomaly then you would be
funded as a priority one.

Participant 1:
Okay, thank you.

Is it true, Dr. Carmichael, that the funding is available up to age 18?

Dr. Carmichael:
Well, yes, but it’s actually available beyond 18. The trick is to make sure that
the patient is registered with the program prior to their 18th birthday.

Okay, so if my child hit 19 and the work isn’t completed yet, but he’s already been
registered, then we’re still okay?

Dr. Carmichael:
Yes, and they’re entitled under the program to receive one full course of
treatment and we’re encourage to make sure that occurs prior to the 23rd birthday. The reality is
of course that most of our treatment that we conduct on youth and young adults isn’t concluded
until their skeletal growth is complete. In girls, that’s kind of a no brainer because they’re usually
finished growing by 17 or 18. Boys are a different story altogether. Some boys continue growing
through 22, 23, up to 25 years of age.

Okay, so that leads me to another question I might have and it’s in relation to
temporary anchorage devices or we’ve heard them referred to as microimplants as well. There is
some work being done on using those in younger children rather than waiting until they’re older
to get implants. In fact, our son is four and they’re talking about starting him with some implants
on the bottom at age 5, next year, but when I was at the Straumann event, I had a number of
specialists say to me they had never heard of a child that young getting implants. So maybe you
could speak to some of the pros and cons of waiting until they’re a certain age.
Dr. Carmichael: Okay, so there are two issues that need to be addressed. The first is that it is
possible to place implants into a child as young as three and a half but only if they’re placed in
between the sites of the lower canine teeth. The only reason that is permissible is because that
part of the lower jaw does not undergo growth beyond age three or three and a half.

Okay, that’s where they were talking about, so that makes sense.

Dr. Carmichael:
But, the use of the temporary assistive devices, or call them what you will, is
poorly documented in the general population and to my knowledge not documented in children
or children with ectodermal dysplasia. Even if it were documented, you have to regard that
documentation in the context of its scientific rigour, and one case reports or two case reports
occupies the lowest rung on the ladder of scientific evidence. So, at this stage I would say
absolutely not.

Wonderful, thank you very much. Does somebody else have a question they would
like to ask?

Participant 2:
I have a question about funding. I know funding is available for dental treatment
and I know it varies from province to province and the territories, and I’m just wondering if
there’s a single source of information to find out what program there is? And, if so, how families
can access the funding material?

Dr. Carmichael:
Well, what province are you in?

Participant 2:
I’m actually in Ontario and I know about the program available here, but I have a
friend in Saskatchewan and I’m just wondering if there’s funding available there and how they
can access it.

Dr. Carmichael:
Well, I don’t know the answer to that. What I would do if I were your friend is
I would log onto the website for the Saskatchewan health authority and I’m sure it would be
easily accessible.

Dr. Freilich:
The only other thought would be also to see if there is a dental program based in a
pediatric hospital because they should also have some insight and one would think that if there
was a provincial funding program there that they would be registering patients for it on a regular
basis. So that’s the other thing that you could explore.

Thank you very much. Does anybody else have a question they would like to ask?

Participant 3:
I actually have a question. My son has E.G.D. and he is missing several of his
teeth, the others are prone to decay. Is there something other than regular toothpaste that we can
use to try to make his teeth healthier?

Dr. Freilich:
There can be a few things, how old is your son?

Participant 3:
He’s five.

Dr. Freilich:
So one of the things sometimes that a dentist can offer to a five year old child
would be pit and fissure sealants, kind of a very superficial resin material that can help to make
the teeth a little bit more resistant to decay by sealing the pits and fissures and the biting
surfaces. It’s very, very easy treatment to apply in children. Then the other thing would be the
potential for professionally applied fluoride treatments where a tray would be put in his mouth
and the fluoride solution would be applied. Probably those two things would be your best
preventive things in addition to regular fluoride toothpaste. I don’t know how much of a role
there is these days, and the pediatric dentists would probably know this better than I would,
whether systemic fluoride supplements are also a possibility for children who show more of a
susceptibility. So those would be the three things that you could look into.

How long do the sealants last, Dr. Freilich?

Dr. Freilich:
I haven’t placed one of those myself in about 20 years (laughing). Until the baby
tooth falls out!

And, I’m assuming the baby tooth will not fall out if there’s no other tooth under it?

Dr. Freilich:
Well that’s a great point. We’re two supposed experts sitting here, and we’re
talking about congenital absence of teeth and we forgot that point. That’s correct and that would
be one of the challenges. However, I know from the question list that we have several things that
this may segue into. With ectodermal dysplasia, we’d like to try to retain baby teeth for as long
as we can and we may wonder, well why is that if we eventually know that we have to replace
the congenitally missing permanent teeth? The baby teeth sometimes offer us two advantages.
One is for the orthodontists, we need something to pit the movement forces against when we put
braces on the teeth that are already there. But, the other thing is that whatever teeth we have
enable us to hold into some portion of bone to eventually place implants into. So we try, unless
the baby teeth convince that we have no alternative but to take them out, to hold on to them for
as long as possible.

Okay, excellent. Thank you. Does somebody else have a question?

Participant 4:
Yes, I do. My grandson doesn’t produce much saliva and he mouth breathes. He
uses his tongue, I think, to cool himself. What impact does this have on his dental health? Is
there anything we can do to help the dryness in his mouth other than drinking because he
constantly wants juice?

Dr. Freilich:
That is a challenge, as you’re already experiencing. In terms of the decreased
salivary flow, unquestionably we know that will increase his susceptibility to dental cavities. I
think the preventive things that we talked about a moment ago would be crucial for him to try to
protect whatever teeth he has. The other suggestion would be for us to consider looking into
other things that can lead to mouth breathing and some of the more common things would be
inflammation or enlargement of tonsils and adenoids. If there’s any tendency for his airway to be
obstructing, if he hasn’t already been seen by an ears, nose and throat specialist, they’ll be a
consultation that I would suggest to see if perhaps enlargement of the tonsils might be leading to
the mouth breathing.
Participant 4: Part of it is he doesn’t have much mucous so I think his nose gets very dry and
probably membranes get a little swollen, especially when he has to stay inside most of the
summer in air conditioned circumstances.

Dr. Freilich:
(Discusses question with Dr. Carmichael) He is protruding his tongue as a coolant
mechanism, and he doesn’t have a lot of saliva flow and his nasal secretions are compromised.
The question is do we have any suggestions as to what potential impact that may have or other
treatments that may help improve that. I’m just repeating the question to Dr. Carmichael, if I’m
understanding the challenge is that there’s not a lot of saliva production, there’s a tendency for
mouth breathing and tongue thrusting, but more to try to provide extra coolant from the tongue.
We talked about the possibility for tonsil and adenoid enlargement but there’s also a decreased
nasal secretion that might be causing some inflammation. Does that sound right?

Participant 4:
That’s exactly it.

Dr. Carmichael:
Hi, it’s Dr. Carmichael again. You know that of course is one of the really
challenging problems with children with H.E.D. and there really are no suitable salivary
substitutes. Some of them are useful for adult patients who are undergoing radiation therapy or
something like that, or who have some form of xerostomia caused by conditions like Sjogren’s
syndrome, but for young children it’s not a practical solution. I really don’t have a good answer
but I’m well aware of the problems, you know these kids suffer from accumulation of dried nasal
secretions which tend to get so large that they’re unable to be removed other than by a diligent
parent there with a saline rinse and a little plastic syringe to try to irrigate the nasal passages and
trying to soften it up. Not only do these secretions interfere with breathing but what we
discovered about 10 or 15 years ago was that 100% of children with hypohidrotic ectodermal
dysplasia are carriers of staphylococcus aureus which is kind of a nasty microorganism. Not only
do these bacteria interfere with healing but they may also be responsible for leading to a less than
ideal success rate with dental implants, but we don’t know that for sure, we’re just surmising.

Participant 4:
Do the nasal gels that you see across the counter by various brands that you squirt
in the nose. Do you know those products and if they’re suitable?

Dr. Carmichael:
No, I’ve never had anybody tell me about those and I must go investigate.

Participant 4:
Well, I was a nurse so we use to use Secaris on our stroke patients and when I
worked in I.C.U. we used it for people that we ventilated and we put it in their nose.

Dr. Carmichael:
What’s it called?

Participant 4:
It’s S-E-C-A-R-I-S.

I actually use it for my son.

Dr. Carmichael:

Participant 4:

Dr. Carmichael:
Secaris? Okay.

Participant 4:
I just, you know, you don’t want to give it to a three year old or four year old if
it’s only suitable for adults, but I was wondering about that.

Dr. Carmichael:
Well I have no knowledge about that but I’m going to look at that. Now the
other problem with the accumulation of these encrustations in the nasal passages is that because
staphylococcus aureus grows abundantly on the nasal mucosal surfaces these things get pretty
rank and the odour that is emitted is quite offensive. So I think it is important for families to
understand this, to understand where the small is coming from and to do what they can to keep
the nasal passages clear because it becomes a real social issue for the children. It’s something
that just because of the nature of the problem itself, it’s not something that is talked about.

Participant 4:

Excellent, thank you very much, I appreciate that, Dr. Carmichael.

Participant 5:
Meghan, I just wanted to suggest, I just quickly sent you an email as well, a lot of
these questions to deal with the ears, nose and throat specifically were covered in a webinar from
the national foundation last month and that is available online.

Excellent. Thank you.

Dr. Carmichael:
Now, somebody asked me a question a little while ago about access to care and
funding in Saskatchewan and I realized that I took part in this national survey of cleft lip and
palette programs. I’ve just dug it up and was reviewing the section on Saskatchewan.
Unfortunately, it says nothing about funding being available for cranial facial problems like
ectodermal dysplasia, but what I’d like to do is to email a copy of this – it’s a PDF. I can email it
to you and you can then disseminate it to the group.

That would be wonderful. Thank you very much. That would be brilliant. One of the
other questions that we received and were asked to be passed along to you was: how long should
we expect the implants to last? We’ve heard something like 10 years. So you’re looking at a lot
of money and also surgery for something that might only last 10 years. And, if you have to take
care of those implants differently than regular teeth? Those were two questions we got quite
regularly and I’m wondering if you could speak to that, Dr. Carmichael or Dr. Freilich?

Dr. Carmichael:
It just happens to be Dr. Freilich’s favourite question.

Dr. Freilich:
Hi again. It’s a fantastic question and let me start with the premise of course that
every case is different. It’s something that we address with each and every case right at the outset
because of course, as you said Meghan, it is a lot of money, it is a lot of time commitment and
it’s a lot of treatment – both surgical and nonsurgical – to go through when we undertake to
perform these reconstructions. Dental implants have been around now for around the range of 40 to 50 years and we’ve seen a lot of trends that have come and gone. Of course we now benefit from sort-of a mass accumulation of research data. Dr. Carmichael and I participate as fellows in an international team for implantology and we can benefit from this world-wide organization and all of the research consensus that are provided to us. We continue to look at these data that come out of different centres across the world and look for information that helps us to answer those questions and more importantly to try to tweak our procedures and protocols to try and optimize the outcomes. It is very different offering an implant reconstruction to a 19 year old than it is to an 80 year old. I think most of us who do implant treatments in adults as well would be pretty confident telling an 80 year old that their implants will last forever. It’s a much taller order in a 19 year old. In our program, we always start with the premise that we can’t guarantee that implants will last forever. With any implantable device, if we look elsewhere in healthcare, if we look for example in orthopedic surgery, and we know that if for example you have advanced osteoarthritis and you need a hip or knee replacement when you’re at a relatively young age and you’re still leading an active lifestyle, that at some point that implant is going to wear out and likely need replacement. In fact, dental implants are made of almost precisely the same type of material as orthopedic implants. So, we expect that the longer implants are in function, there is the chance that things can happen to them. We also know that if implants maintain their health over the first one to two years, and by that we mean that the bone supporting them is maintained, and the soft tissues remain healthy and they’re free of infection, then that tends to be a really good hallmark that we’ve got a great chance for them to go 20 to 30 years and beyond. So for us it’s always a major challenge in our program to try to engineer our cases for the best chance for longevity. The things that we know are important are things like making sure that these implants have a good housing of bone and gum tissue, and that when we have enough implants embedded in the bone that when people chew on their implants that the implants can shock-absorb that chewing for us and again stay healthy over the long-term. Now a lot of that becomes a judgment call on our part because every case is individualized. We go through an analysis, we look and see teeth scans, we try to come up with our best package of information to say here is what we think is going to give our implants the best chance to survive. The next question is: what kinds of things can go wrong with implants? They’re similar enough to natural teeth that some of the things that can happen to teeth can happen to implants as well. They can develop a form of gum disease called peri-implantitis that can result in swelling of the gums and bone loss around implants, much like teeth develop periodontitis or gum disease. And, implants can fracture and so there’s a list of things that we know that can happen to the implants, even if they’re placed in a relatively healthy mouth. Dr. Carmichael mentioned before the evidence that we have of staph aureus being a concern in kids with hypohidrotic ectodermal dysplasia and the possibility that that can increase the risk to dental implants. That’s something we don’t have direct evidence on but those are some of the risk factors that we can encounter with implants. So, let’s then look at the alternatives for a moment because that’s all very important information but the other alternatives of partial dentures and fixed bridges, while they avoid dental implant surgeries and bone graft surgeries, the problem with fixed bridge work is that a lot of kids with ectodermal dysplasia don’t have enough teeth or the teeth aren’t spaced close enough together for us to be able to perform conventional bridge work. On top of that, bridge work, we know, will eventually decay and doesn’t last as long as dental implants. So the opportunity for that work to have longevity is even less than implants, statistically. What about partial dentures? Well, partial dentures certainly avoid a lot of invasive treatment but they also increase the wear and tear on the supporting teeth that are holding the dentures in place. So eventually those teeth are more prone to caries and gum disease, and eventually they’re lost. We end up adding those teeth to the dentures or, at that point, have to consider implant treatment. One of the things we always have to take into consideration comes back to this availability of funding. We’re constantly asking ourselves, and in Ontario we can start off with a 75% coverage package, but what is going to happen to this child and this family if things get into difficulty, 5 years, 10 years or 20 years when that funding is no longer available? That’s something that we’re very aware of and we try to take that into consideration in every treatment plan that we talk about because it’s a very important consideration. It’s a complex question and we used to consider implants to be forever and then we’ve been doing these long enough now to know that some can be and some can’t be. In all honesty,
we don’t have very predictable ways to tell each family at the outset what their specific risk
factors can be, other than some of the things that I’ve mentioned. We can talk in very general,
generic terms, but we can’t quantify that for each individual case.

And understanding that every situation obviously will be different and it depends again
on treatment care that you come up with in conjunction with the family and the rest of the team,
on average if a family is about to start the entire process and they’re looking at possible bone
grafts or the implants being put in and then maybe some bridge work being done, from start to
finish how long are you looking at? A year, two years, regular appointments once a month for
time commitments?

Dr. Freilich:
Well let’s talk about orthodontics for a moment because most of our cases do
require some form of orthodontic intervention really to realign the existing teeth and to help
regain spaces. In fact, sometimes moving teeth with braces helps to gain bone. One of the nice
things about orthodontic treatment is that when teeth move through bone that force stimulates the
bone to regenerate and so that’s one of the nice side effects that we get from orthodontic
treatment. Now orthodontics and ectodermal dysplasia is not an easy scenario and again that’s
beyond my expertise. We’re very lucky to have some excellent orthodontists on our team here at
Holland-Bloorview, but the fewer teeth we have – and patients often say to us, well the braces
should be easy, there aren’t that many teeth and the truth is the opposite is true because the
orthodontist doesn’t have much pinning or anchorage force to help with the tooth movement.
Orthodontics can range from two to five years and sometimes longer.
One of the challenges, let’s say for example we have a patient that comes to me who has been newly registered in our program and we might intervene with orthodontic treatment, let’s say somewhere around age 10 to 12. Of course, one of the hard things for us to have to tell our young patients, who really want their teeth desperately, is that they have to wait until they finish growing. That’s always a hard thing to kind of absorb because everybody wants to get this finished and socially be able to have their teeth. It’s absolutely crucial, for the reasons that we mentioned earlier, that we wait until skeletal growth is complete. So then we embark on a period of orthodontics as I mentioned of about two to five years, then we do some x-ray analyses and confirm that the children have finished their growth. Most patients with ectodermal dysplasia do need some form of bone graft surgery and the reason for that is when the teeth don’t form and they don’t erupt through the jaw bone, the jaw doesn’t receive its normal stimulation to develop and grow in its proper volume and dimension. So we find that the vast majority of our kids with e.d. do need some form of bone graft surgery. To come back to the main question, those
procedures usually need an average of four to six months of healing time. At that point we
proceed with dental implant surgery and what’s exciting about that is with the newer
advancements in implant surfaces that we’re working with we can usually proceed to the
prosthetic phase of care within six to eight weeks after the implants are placed. So we don’t have
to wait four to six months any longer.

Wow, that’s good. And when you’re doing bone grafts, is there a particular place – I
don’t know if harvest is the right word – where you get the bone from?

Dr. Freilich:
What we’re finding with ectodermal dysplasia is we are still needing to rely, not
infrequently, on harvesting bone from the hip area. Now, as I mentioned before, we’re looking
on a continuing basis on advancements in bone regenerative surgery and we’re finding that a lot
of it depends on the amount of bone that we have to replace and how many sites need to be
restored. Again ectodermal dysplasia tends to be one of the more demanding situations because
of the number of missing teeth and the very severe amount of bone deficiency that we typically
do encounter. So, in most cases, it is still the most predictable way to proceed with harvested
bone from the hip area, most times from the front of the hip but sometimes from the back of the
hip where we can get even a more abundant source of bone. We’re finding that our results are
best when we mix that with a form of CalBone material and we guide the bone regeneration with
different membranes that are animal-derived as well. So we’re using a combination of donor
bone and animal bone with the patient’s own bone to give us the most optimal results.

That’s amazing. So when you do the surgeries, you’re saying even with the hip and the
teeth, it would take four to six months to heal?

Dr. Freilich:
Yes, and when we take bone from the hip and we’re not relying purely on external
or donor sources that actually takes a little bit faster so we like to proceed with implant surgery
four months after bone graft surgery. Then we need about two months on average for the
implants to successfully integrate to the bone. It’s usually about six months start to finish with
me, after the orthodontics are complete and after we know that the growth is finished. Then Dr.
Carmichael takes over and builds the prosthetic teeth.

Thank you very much. We have about 10 minutes left so if anybody else has a
question now would be a good time to ask.

Participant 6:
I actually have a question, my daughter has ADULT syndrome so right now she
does have her full set of baby teeth but we’re not really sure what’s going to happen with her
adult teeth. We actually go to SickKids and they’re kind of taking a wait-and-see approach.
She’s five and a half now so I’m just wondering if there’s any way to kind of know if she’s going
to have adult teeth or what we should be expecting?

Dr. Freilich:
Have they done a panoramic x-ray at SickKids?

Participant 6:
No, they said they weren’t going to do one yet.
Dr. Freilich: Well at age five and a half, oftentimes on a panorex a lot of the permanent teeth, if
they are developing, will already start to show. Sometimes not all of them, depending on the rate
of development of the teeth. They may choose to wait for another year or two to take the x-ray.
It’s frustrating of course because it’s nice to get all the information as quickly as we can.
Unfortunately, the best answer that I can give you is that whether the teeth are there or not there
wouldn’t be very much that could be done interventionally. Who has he seen at SickKids so far?

Participant 6:
I’ve seen two different dentists there. Every time we go we get somebody

Dr. Freilich:
I mean certainly you could ask them about taking a panorex and see what
information comes up on it. That would really be the best way. Having said that, certainly if all
of the teeth aren’t visible on the panorex at age five and a half, I wouldn’t give up hope yet
because some could still start to form.

So are they slower to grow in kids with ectodermal dysplasia?

Dr. Freilich:
Not necessarily but of course every stage of development is different. Sometimes
they can be faster to grow, but again five and a half is young so not all the teeth necessarily
would have started to develop to the point that they would be visible on an x-ray.

Does somebody else have a question they would like to ask?

Participant 7:
I have a question. I have two kids that were recently diagnosed with ectodermal
dysplasia, they also have some other medical issues going on as well. We are in Manitoba and I
know the dentist that they’re seeing right now, I think he has a little bit of an idea as to
ectodermal dysplasia but he doesn’t seem to know a whole lot. Is there a database or anything
that I can kind of find a dentist that knows a bit more about it where I live?

Dr. Freilich:
I’m going to direct that one back to Dr. Carmichael. Truth is, I don’t know the
answer to that.

Dr. Carmichael:
Where have you sought treatment in Manitoba?

Participant 7:
We are just being seen by Dr. Bassey is his name, in Winnipeg.

Dr. Carmichael:
Is that at the cleft palette program there?

Participant 7:
No, he’s just our regular dentist.

Dr. Carmichael:
Okay, so the first thing is to go see whoever’s in charge in Winnipeg. I’m
going to be emailing the information to Meghan and she can send a copy of this PDF to you and
you’ll get all the pertinent information. If you’re not happy with what you hear, here at Holland-
Bloorview we have a Northern Ontario outreach program which pays a visit to Thunder Bay
every September. That might be an option for you just to jump on a plane and come see us in
Thunder Bay.

Participant 7: Yes, my kids are actually seeing one doctor but it’s not a dentist at SickKids. I
know even to get there from Manitoba Health there’s a lot of stuff that has to be done in order for
us to go out of province for care, but that’s always something that we can look at if we have to.

And along those same lines, Dr. Carmichael, we had a member from Hamilton ask,
how do they go about getting a referral to SickKids for her two boys? Can she come from
Hamilton to do that or does her family doctor do that? I actually have an adult member as well,
who obviously can’t go to SickKids, but the member is from Hamilton and can’t find anybody to
help him either. He has never had a full set of teeth, he’s 62.

Dr. Carmichael:
Yes, well I think that a perfectly appropriate place, though Dr. Freilich and I
both see patients at SickKids, we prefer to see kids with ectodermal dysplasia here at Holland-
Bloorview because we’re set-up a little bit differently. So, again, I can send you a PDF of the
referral form and you can distribute that to your membership.

Wonderful, perfect, thank you. But, Holland-Bloorview is just for children, is that
right? What would I recommend for adults? Is there anybody or if you can think of that and send
it on to us, someone that does have experience in treating ectodermal dysplasia for adults. That’s
a huge challenge to, sometimes there’s more out there for kids than there is for older people.

Dr. Carmichael:
Well, as it happens, Dr. Freilich and I both see adults here at Holland-
Bloorview, even though it’s a pediatric rehabilitation hospital.
Meghan: Oh okay, well I will let him know. Wonderful, thank you very much. Does anybody
else have any questions? We only have a few minutes left before we let these gentlemen get on
with their evening. Okay, did you want to add anything or is there any material that you wanted
to give us Dr. Freilich or Dr. Carmichael?
Dr. Carmichael: Well, that’s a lot of information.
Meghan: It was a lot of excellent information.
Dr. Carmichael: Well, I know it’s a profound challenge that’s for sure, especially when it’s
complicated by limited access to care which unfortunately is the norm not the exception. But
we’re always available to respond to questions.
Participant 4: Excuse me, but I have been on the computer and in looking at my notes, I asked
the question before and you told me about the staph aureus in the kids’ noses. Well, that
triggered something from way back and they used to do swabs on all the nurses’ noses. They
gave out an ointment called Bactroban because a lot of nurses that had worked for a long time in
a hospital situation were carriers of staph aureus. So I was looking up, while you were talking,
what they gave, and they gave Bactroban. You put it on a swab in your nose for five days and
then you used it once a week and for some reason I remember asking the question that it always
worked, you didn’t get immune to it. I was wondering if that would help the kids?
Dr. Carmichael: Well, unfortunately, we’ve never even bothered to attempt to try to eliminate
their carrier status because it’s just pointless because they would easily become reinoculated at
home. The staph aureus is probably thriving all over their body so all they have to do is put their
finger into their nose and they’re reinoculated. So it’s a bit of a mug’s game.
Meghan: I have another question that just came in by email, before we left you go. It was: For
kids with H.E.D., are they more susceptible to fluorisis, I think I’m pronouncing it right?
Dr. Carmichael: Fluorosis.
Meghan: Fluorosis, compared to other children. This gentleman says that he read that they can
have thinner enamel. Fluoride is in their local water and he asks if it’s safe if they move to
fluoride toothpaste to help protect the two teeth his daughter has. So he just wants to know if
people with H.E.D. are more susceptible or not.
Dr. Carmichael: Well I would say no. I mean it is true that their enamel is thinner because of
the shape of the teeth. I’ve treated hundreds of kids with fluorosis and hundreds of kids with
ectodermal dysplasia, but never a kid with ectodermal dysplasia and fluorosis.
Meghan: Okay, that’s a good answer, thank you very much. So if nobody else has any questions
I’d like to say thank you very much. Does anybody else have a question? No. Thank you very
much, Dr. Carmichael and Dr. Freilich. I can’t express to you what this has meant to so many of
us when you have to travel to appointments. And, as I mentioned earlier, sometimes wait a long
time and your appointments are limited and you don’t get a chance to ask all the questions or you
can’t remember because you’ve got your child with you and they’re tending to distract you
anyway. So this was an opportunity for all of us that is invaluable and we can’t thank you
enough for your time.
Dr. Carmichael: You’re most welcome, Meghan. I appreciate the opportunity to offer what little
help we could and here’s Dr. Freilich to say goodbye.
Meghan: Okay, thank you.
Dr. Freilich: Once again, thanks very much for joining us tonight. I know, Meghan, there’s
probably other families out there that perhaps couldn’t join us tonight so we certainly are open to
doing this again with you if you feel that there’s kind of more of a demand that we weren’t able
to meet tonight. So we can discuss that further for sure.
Meghan: That would be absolutely excellent and I know I have some ideas around how we can
help you market and promote some of your programs so that the word gets out there. So I’ll be
talking to you about that as well.
Dr. Freilich: Okay, perfect.
Meghan: Thank you very much and have a nice evening everybody. Thank you again Dr.
Freilich and Dr. Carmichael.
Dr. Freilich: Have a great night everyone.
Meghan: Byebye.


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