You'll find hundreds of files on cleft lip, cleft palate here on widesmiles.org.
This one is about: Q&A Chat with Dr. Canady, June 30, 1999
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Question and Answer Chat with Dr. Canady
June 30, 1999Joanne: Ok... let's get started.
Dr. Canady: First the disclaimer so the university lawyers will continue to let me do this...
I will be answering questions of a general nature for informational purposes only. Since the practice of medicine dictates a physical exam and since that is impossible in this forum, I will not be practicing medicine. If you have specific medical questions, you should consult you medical practitioner. If you cannot find a medical practitioner to help you, I will be happy to see you in my office. The number for an appointment is 319-356-2168.
Joanne: Okay, first question is from Lori.
Lori: My question involves Spencer's upper lip. It is still 'connected' to his upper gum. Seems to be right between his front teeth, as a matter of fact. When will this be loosened and won't it adversely affect his speech?
Dr. Canady: The structure doing the tethering is called a frenulum and it is normal to have one. Some peoples are more pronounced than others. This rarely causes speech problems (kind of like the frenulum of the tongue which used to be routinely clipped, but is now known not to usually cause problems...As children develop speech, the speech pathologists will put them through a test (actually called the Iowa test because it was developed here and is widely used...) to see if specific anatomical structures are causing a problem.
Lori: So...we won't be 'disconnecting' the frenulum then? Sorry to be so dumb!
Dr. Canady: It's really pretty rare in my experience to have that frenulum cause big problems. I don't like to cut that unnecessarily (ie, if you don't need to to get a good lip closure) because that tissue all has to be eventually elevated to place the bone graft. Generally, I only address it if the speech folks think it is causing a problem.
Lori: Okay, I understand. Thanks.
Dr. Canady: You're welcome. Glad you're here.
Joanne: Ok, thanks. If anyone here has a question that I seem to be missing please private message me. The next question goes to Christal.
Dr. Canady: OK. Hi Christal
Christal: Hi! Jamie's PS is the head of 2 cleft teams in our area, but I haven't met with any "real" members of a team. I had to find her doctors myself. Is this unusual?
Dr. Canady: At Iowa our team sees patients as a group -- ie., the patients rotate between areas of the hospital and then the team meets as a whole when clinic is done and reviews treatment plans for patients who need it. Other teams may work differently, but usually referrals are made within the team by team members. Does that help?
Christal: It does. Thank you.
Dr. Canady: The American Cleft Palate and Craniofacial association would be able to give you some data (self-reported) on how many patients a team supposedly treats and how often they have face to face meetings. You have to remember that teams themselves report this data and no real checking is done. This material lists the team members by name as well. Done.
Joanne: Thank you, Dr. Canady. I have a question now that came to me from the list. This family could not be here.
Dr. Canady: OK
Joanne: This family's child had surgery 12 yrs ago; lip repair. They describe the history as "not the best" scarring. It is raised, a little red. According to the ps, cortisone injections will not help. They want to know your opinion of dermabrasion, and/or laser work on cleft scars.
Dr. Canady: I believe that individual patients are probably genetically coded to form good or bad scars. Within this context there are some things that you can do to minimize heavy scarring, but so far we can't change the genetic scarring "switches" (yet...we're working on that!!!) ANY modality that causes injury -- scapel, dermabrasion, or laser can result in further scarring and there is not a lot of evidence that one modality is clearly superior to all others for all patients. Most surgeons would proceed pretty cautiously in patients with a past hx of heavy scarring--ie., try a test patch first and see what happens before you do the whole thing. Some people (I am one) believe that people being treated with a laser should be pretreated with a protocol of topical medications and oral anti-viral agents (for peri-oral laser) to reduce the chances of complications. Done.
Joanne: Related to that, Dr Canady... what are the prevailing opinions of products such as Mederma?
Dr. Canady: Unfortunately, most of these products have very little true science to back them up. There are a lot of products out there touting lots of benefits so "buyer beware" certainly applies. The most common things used to treat heavy scarring are pressure, massage, steroid injections, and topical silicone sheeting.
Joanne: Ok, thanks. Our next question comes from Debra.
Dr. Canady: Hi Debra
Debra: Hi! :-) Christopher had hard and soft palate closure at 4 yrs. This spring, just before he turned 7, Chris had X-Rays to see if he was ready for bone graft. It looked to me (who has seen very few X-Rays and can't even pretend to know how to read them) that the cleft in his hard palate had closed! Was this a fact or an illusion?
Dr. Canady: Actually, some times if you raise up palate flaps later in life for some reason, you can find a thin eggshell of bone in the area where the cleft was. This is because the flaps, when sewn together form a periosteal pocket and this tissue has the capacity to cause some bony generation. It is important to realize, though that this bone is not essential to any palatal function. The only necessary thing is that the mouth and nose be physically separate -- and soft tissue can accomplish this quite well. Done.
Debra: Thanks!
Joanne: Thanks, Dr Canady. Bonnie has a question for you now.
Dr. Canady: Hi Bonnie.
Bonnie: Hello Dr. Canady! I'm Bonnie mom to Griffin, who is 1 and has a unilateral cleft lip (repaired) and complete palate. I have 2 questions, my first question is in regard to his ear tubes. I know different ENT's have different opinions on whether or not earplugs need to be in place when in the water, we have always followed our ENT's advice and intend to continue by wearing them. However, when Griffin was in the tub and one fell out unnoticed I never panicked. Now that it is summer and we live on a lake and spend a ton of time on/in the water I am quite nervous about them falling out unnoticed. A lake is quite different from bath water. Is there anything I should be aware of, something that I can do in case this happens or do you have any thoughts that might ease my concerns?
Dr. Canady: Let me put on my ENT hat.I have noticed that some kids seem to have a lot of problems with water contamination and some never do...I think this is because of several things... What kind of tube is used, how the tube sits in the eardrum, the type of water, and just plain luck in some cases. I don't recommend custom earplugs to families with kids under 3 because the growth of the ear usually makes them worthless pretty fast and they are not cheap. Kids over 4 do pretty well with custom ear plugs, though -- these can be made by anyone who fits hearing aids. Another product I recommend (and I have no financial interest in this....) is something called "Band It" which is a headband that is made of the same stuff a wetsuit is made of. They come in different colors and the kids seem to tolerate them pretty well. Done.
Joanne: Thanks, Dr. Canady... we now have a question from Down Under; our Dad here tonight, Chris, has a question for you.
Chris: Hi Dr Canady :)
Dr. Canady: G'Day Chris
Chris: LOL - G'Day. What advice do you give your patients' parents about what to tell their child about their cleft repair scar? My daughter Emma is three and has just started to become aware of hers.
Dr. Canady: That's a Great question - this is a long answer so hang in there...
First, I think you should always be honest with your kids, because if you aren't they will never know when to totally believe you and when not to. I would start with simple terms about how the lip needed some help to come completely together and move as quickly as possible to more detailed explanations of how the lip grows together from the sides when you "were growing in mommy's tummy" and sometimes it just doesn't quite get all the way across. When you think that she is ready to watch it, there are several web sites that have MPEGS of facial development that show how the face grows together and kids of surprisingly young age can get something out of watching this. I would always spend time telling her that just because her lip has a scar she can be or do anything that she wants to be and that there are countless examples of adults with cleft lips and palates who are in every position imaginable. As for teasing at school...I usually ask the parents what they were teased about at school and 99.999% will INSTANTLY come up with something -- "too tall, too short, too thin, ears stuck out, etc." and then I point out to them that it seems that they were teased even though they didn't have a cleft and even if I had a magic wand and could eliminate the cleft scar, I couldn't eliminate teasing... This is usually quite a revelation for them and then everyone gets on the page that school teasing probably can't be totally eliminated (which is not the same thing as saying it should be tolerated!!) and brings up the topic of working on other coping strategies -- there is literature in the child psych area to support that kids with facial differences ultimately develop skills that serve them well later in life -- more flexibility, more compassion, etc. So that's a long winded answer that is my opinion only, but that is some of what I use in my clinic here...Done.
Chris: Thanks so much Dr Canady :) Do we have the URL's for those mpeg sites in our links Joanne?
Joanne: Oh, I don't think so. Dr. Canady, could you send me some of the URLs you mentioned?
Dr. Canady: I KNEW you were going to ask that after I hit the return button on that passage -- they're on my computer at work--I will get them to you.
Joanne: Thanks. Okay we are going to switch gears here now. Brian has a question.
Dr. Canady: Brian, please go ahead.
Brian: My name is Brian, I am 37 and have a bilateral cleft lip and palate. My sister in law who is 34 and has a unilateral cleft palate had some serious heart problems last fall, do you know of any relationships between clefts and heart problems?
Dr. Canady: Well, the most common syndrome that has that association is called Velo-Cardiofacial Syndrome. There are some new tests for this that the genetics folks on your team should be able to explain. There are also other syndromes that have both clefts and heart problems as part of their presentation. Done.
Brian: Thanks
Joanne: Also I think, if I am not mistaken, VCFS was not being diagnosed until fairly recently. So that a grown woman with VCFS could very likely be either misdiagnosed or undiagnosed, yet still have the syndrome, right, Dr. C?
Dr. Canady: That's true. There is also probably a range of expression of this syndrome and also the testing for this has gotten a lot better recently and will probably continue to improve as lab techniques improve. Not everyone who has a cleft and a heart problem necessarily has VCFS, but this should at least be considered. Done.
Brian: I am looking at a page about it on the web now, thanks again :)
Joanne: Ok thanks. I have another question for you now.
Dr. Canady: OK
Joanne: Two days ago, I woke up to a family on my porch - mom, dad, and a 4 month old infant with a bilateral cleft. His premaxilla protruded, but not as badly as some. He had lots of skin tissue - there was some right-side rotation of the premaxilla. He had had surgery two days earlier but not on the lip. What had been done was basically done on the premaxilla back to the incisive foramen. Stitches, I THINK, to bring the premaxilla in... the stitches broke out the next day. They took the baby to emergency but obviously nothing could be done. My question is this: what the heck did they do???? I've never seen anything like that before. Do you have any idea? btw.. there was no appliance.
Dr. Canady: That's a tough one. I have not seen someone have a pre max repositioning at that age without something being done to the lip. I don't mean to imply that it was wrong, but it would be a technique I am not familiar with (Which is possible -- after all I'm just a small town kid from Iowa.)
Joanne: So, they did a premaxilla repositioning? Ok, I advised the family to get another opinion before proceeding. I trust that was sound advice.
Dr. Canady: If families have doubts or questions that they think are not being addressed, I always suggest that they get a second opinion. In my practice, I will offer to make it for them so I know they are getting thoughts from someone who is experienced and knowledgeable.
Joanne: Thank you. This one took me by surprise. And the sad thing is, the baby went through a lot for nothing. Our next question is another question now from Bonnie.
Bonnie: Thanks Dr. Canady for the Band It idea! I will give it a try, I hadn't thought of that option. My question is in regard to palate closure. I am the mom who had the question on the Van Langenbach procedure, which BTW Thank you! My Griffin' cleft is quite wide which is why our PS has delayed surgery until he is 15 - 18 months old. Is this procedure the best closure for his width or is there anything that might be done differently using this procedure to decrease the risks of failure? I guess I am concerned because will 3 months give us that much more tissue? Am I correct in believing that this is a 'tissue issue' and not the possibility of closure on its own?Dr. Canady: The choice of procedure really has to be based on a physical exam. Regardless of the actual technique used, it is important at the time of surgery to try to get maximum mobility in the tissues used for closure. 3 months can make a difference in my experience, but mobilizing the tissue is the key at any age. It is also true that in some places (Europe and Scandanavia) it has been common to do palate repairs later than we do them here. There is a lot of conflicting literature on how the age of repair affects the ultimate speech outcome. Probably the best thing you can do to help with a successful outcome is to have Griffin in the best possible shape at the time of surgery -- eating well, gaining weight, no infections, etc. Done.
Bonnie: Thanks Dr. Canady, I really appreciate your information.
Dr. Canady: You're welcome.
Joanne: It looks like we have three questions left if we have enough time. Lori your question is up now.
Lori: Question #2 is in regards to Spencer's nose. I know we have not definitely decided whether or not he'll need any correction to his nose yet. I'm curious about that surgery, should we decide to go thru with it. What's the ideal age? Is the work done on the inside, outside, or both? Much scarring/swelling? How long of a hospital stay for this? If we decide not to do it before school starts, and he wants it later, will the results be as good?
Dr. Canady: In terms of correction of secondary nasal effects, I am pretty much of a surgical minimalist at younger ages. There are two issues as I see it -- the addition of scarring which may cause more deformity as the nose grows and the effects of nasal surgery on the growth of the nose itself. There are certainly cases where I have done some tip repositioning at an early age, but I generally try to wait for any work on the septum until the patient is in his/her teens. You only have one chance to use the cartilage you get for a graft and I would rather use it when growth is slowing down. The hospital stay depends on exactly what is done and the age, but usually it is overnight observation at most and a lot of kids go home the same day anymore. Usually the only additional scar that is necessary is on the columella -- the rest of the incisions are on the inside. Done.
Lori: Gotcha. Thanks again. See you in September.
Dr. Canady: I'll look forward to it -- give Spencer a hug for me.
Lori: Will do....if he stands still. lol
Joanne: Christal, now, has a question, then Deb will. I think that will be all time will permit.
Dr. Canady: Hi Christal
Christal: Hi! Jamie is 9 months old now and the only consonant she pronounces is 'mmmm'. Should I be concerned about speech issues and when should she be evaluated for speech?
Joanne: Her palate is repaired, right, Christal?
Christal: Yes, repaired on Memorial Day.
Dr. Canady: Our protocol is that the speech folks see the kids every 6 months until they are 5. It is hard to do an extensive speech eval with a limited vocabulary, but we think that it is good to have the kids get to know the speech pathologists and the routine right from the start. Are Jamie's other developmental milestones OK? Done.
Christal: Pretty much on target with a few ahead of "schedule" so to speak.
Dr. Canady: I would guess that she will probably do OK. From personal experience as a parent, our oldest boy started talking late, but he sure made up for it. The bottom line is that it is not too early for Jamie to be seen. Done.
Christal: Thank you, Dr. C. We go to the ped. Friday and I will mention it to them.
Dr. Canady: Great.
Joanne: :))) We have such amazing kids...speaking of which -- Deb has a question now. And I think that is probably all the time we will have.
Dr. Canady: Hi Deb
Debra: Hi! I just started my son in Taekwando (spelling?). He loves it. I've discussed my concerns about injuries to the face. From what I hear any danger of this is a few "belts" away. What is your opinion? BTW - Chris is ADD and has Central Auditory Processing Dysfunction. We were hoping this would be beneficial. But, again, more importantly -- he loves it and we are told it is very beneficial for kids with focusing problems. He was focusing in virtual "chaos." Took group direction and individual and peer queing! I was so excited but I'm concerned about later on when the real contact portion of this sport begins.
Dr. Canady: I am a big believer that kids can't live their lives in a glass house and still be kids. I tell my patients to do what they want to do (within reason!!) and enjoy life. Sure, he may get hurt, but he probably won't and even if he did not have a cleft he still might get hurt just as much, but as long as it is a well run dojo and his instructor is a good guy I would certainly permit it if he were my patient. Done.
Debra: Thank you. The dojo is wonderful! This instructor is great!
Joanne: Thanks so much. Remember too, as Blaise Winter once said, "That's what they make helmets for."
Debra: lol!
Dr. Canady: JG -- I'll always take a last question from you if you like.
Joanne: Well we are a few minutes over time. Is there anyone here who had a question that did not get asked? Please let me know now.
Dr. Canady: As usual, I am very impressed with the level of the questions tonight -- this is a lot of fun for me.
Joanne: Well I want to thank you, Dr C. This was, as usual, most informative.
* Joanne smiles.. I am not only proud of the people who come, but I am also incredibly pleased to offer them this opportunity. Thank you very much, Dr. Canady. Your time is very appreciated here.
Dr. Canady: You're welcome.
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