Our guest chat host tonight on January 22, 2001 is Sally J. Peterson-Falzone, PhD. Dr. Peterson-Falzone is a Clinical Professor in the Department of Growth and Development and Speech-Language Pathologist for the Center for Craniofacial Anomalies at the University of California, San Francisco. She and Mary A. Hardin-Jones, PhD, and Michael P. Karnell, PhD, are the authors of CLEFT PALATE SPEECH(3rd Edition), a text covering the assessment and treatment of speech-language problems associated with cleft lip and palate as well as other craniofacial anomalies. This text reviews and critiques the pertinent literature regarding surgical, prosthetic and behavioral management of clefts and related problems. Dr. Peterson-Falzone will chat tonight about speech problems in cleft palate and other congenital craniofacial birth defects. <LB> how many of you actually have worked with children with CP? <Anonymous99> I would like to work with children with CP <Adrienne> 99, have you had any personal experience with CP children? <Jessica> I am just curious about the field. I haven't actually worked with any kids? <Jessica> Please refresh us, what is the incidence of CP currently? <SPPetersonFalzone> Adrienne: SLP's should be key in surgical decisions about when to close the palate, and when to attempt further surgery if the initial palatoplasty has not provided VP closure. <Adrienne> what would cause you to suggest not closing the palate? <SPPetersonFalzone> Jessica: If we pool all clefts together (which is epidemiologically dangerous), the incidence in Caucasians is roughly 1/750. But incidence varies with race, sex, type of cleft, etc. <Robin> at what age is the palatoplasty usually recommended? <SPPetersonFalzone> Robin: If the baby is normal in all other aspects and thriving, most teams in the US like to try to get the cleft closed somewhere between 8 and 12 months of age, but there is a lot of disagreement. <LB> looking at pragmatics, do other social disorders (i.e. anxiety, depression, etc.) develop/show up later in life due to difficulties communicating early on? are many studies conducted which address this? <SPPetersonFalzone> LB: You betcha. There is a huge body of knowledge now about psychoeducational and emotional findings in individuals with clefts and other craniofacial anomalies. You'll find a lot of info and references in Cleft Palate Speech. <Marlow> How does a baby with an unrepaired cleft survive in the first 8-12 months if they are unable to suck sufficiently? tube feed?? <Adrienne> good question! <Marlow> Do they have a gag reflex? Do the aspirate easily? <SPPetersonFalzone> Marlow: Cleft palate and craniofacial teams have nurse-practitioners who deal with the feeding problems. These babies can be fed very efficiently, grow like weeds, etc. And we DON"T tube feed.. turns a kid off to normal nippling and suckling - can result in horrendous oral aversion. <Marlow> That makes sense!! <Adrienne> that's interesting! <SPPetersonFalzone> Also Marlow: Kids with clefts certainly have gag reflexes, but the feeding issues become non-issues when the correct professional addresses them. <LB> if there is evidence that these social disorders do show up, are there steps/therapeutic techniques which help address & prevent these later on? <LB> I mean, techniques used in early childhood, not later in life. <SPPetersonFalzone> LB: Techniques for minimizing social and psych problems? <LB> yes...techniques used early on to prevent those from happening or do you feel that that is what therapy in general strives to accomplish in one way or another? <Adrienne> wouldn't a psychologist do most of that? <SPPetersonFalzone> LB and Adrienne: Yes, this falls to the team psychologist to handle. If you want to start reading about it, look at CPS3 and go from there. And there are lots of psychologists with teams across the country. Several teams have devised special program for kids and teenagers to teach them how to handle teasing, for example. <Jamie> I am an undergrad in SLP who happens to have an unrepaired CP. I'd like to work with children with the same difficulties. <Adrienne> from your point of view Jamie, is there anything you would have wanted an slp to tell you or do for you? <Jamie> I worked with an SLP for two years and now have perfect speech! <Adrienne> awesome! <Robin> excellent!!!!! <LB> yea for Jamie and her SLP! <SPPetersonFalzone> Everybody: I'm going to be off this screen for about 30 seconds. Keep the questions coming. I"ll be right back! <Adrienne> ok! <Jessica> Jamie, what type of CP did you have? <Jessica> or rather do you have? <Jamie> Unilateral, but very severe. I use an artificial speech prosthesis. <Jay> is it a palatal lift? <Jamie> yes <Jay> Do you have any trouble with it? <Jamie> I have had no trouble with it <Jay> Any pain initially? <Jamie> I was too young to remember <Jay> so.. did you have to get new lifts over the years? <Jay> do they slip/move, etc? <Jamie> I had to get "re-fitted" with a new one every few years as I grew <Adrienne> we are talking about Cleft palate, Dr Peterson Falzone will be back in a minute to answer questions <SPPetersonFalzone> I'm back. <Robin> any more questions for Dr. Peterson-Falzone? <Robin> while you were away from the screen, Jamie told us that she wears a speech prothesis.....how frequently are the protheses used? <SPPetersonFalzone> It used to be the case, several decades ago, that speech prostheses were very common. But surgeons have become better and better at what they do, so now we rarely see prosthetic cases. <Adrienne> Dr. Peterson-Falzone, do CP patients spend a long time in therapy? <SPPetersonFalzone> Adrienne: Kids with clefts should not have to spend long periods in speech therapy (not any more). And if they are in long-term therapy to cure "nasality," someone has misunderstood the problem. <LB> Dr. P-F: on a more personal note, may I ask how you first become inspired to work with persons with CP? <SPPetersonFalzone> LB: When I was finishing my MA at the U. of Illinois, there was a position available as an "audiologist" at the U of I Cleft Palate Team in Chicago. I took it, and got hooked. <Adrienne> what do audiologists do with CP? <SPPetersonFalzone> Adreinne: Kids with clefts are HIGHLY prone to ear disease. Audiologists and ENTs are very important parts of cleft palate care. <Marlow> Today in my CP class, we were talking about a client who goes to the ENT to have their ears cleaned out bi-weekly?... <Adrienne> I don't understand the ear thing... does it have to do with the Eustachian tube backing up? <Marlow> I understand that she could get liquids into her eustachian tubes but how could they remove the backup from the EAM? <Jay> antibiotics and pe tubes <Jamie> Are there adequate jobs for those interested in working with CP kids? <SPPetersonFalzone> Marlow: I don't know wny the client you described has to have his or her ears cleaned out so often, but it must be an external ear wax or debris problem. <Marlow> From cleft palate? <Marlow> Or a separate issue? <SPPetersonFalzone> Marlow: Back to the ear questions you have. Any kid can have too much wax, too much debris in the outer ear, etc. That's not a cleft thing. But problems in the function of the middle ear is a cleft thing. Very well documented in extensive literature. <SPPetersonFalzone> Adrienne: Yes, it is a eustachian tube problem: The muscles that open the eustachian tube are part of the palatal musculature, and they cannot do their job properly in most infants with clefts. <Adrienne> ok, is that something you would work on in therapy? <Jay> so it's not a problem of having too much open tube? <SPPetersonFalzone> Adrienne: You mean the eustachian tube problem? No, that's a surgical and ENT issue. <Jay> what about feeding? <Adrienne> so no surgery wouldn't be an option for those cases <Jay> are there recommendations? <SPPetersonFalzone> Jay: Check some of the earlier communications in this evening's chat. Feeding issues are handled by team nurses, usually very successfully. <LB> I am awed by the obstacles children with CP have to overcome. watching them struggle to speak/be understood/just communicate really makes me examine my own words and how I waste so many of them by nagging, complaining, etc. what an inspiration they are! as well as all of you! more power to you and your endeavors! thank you for the conversation, good night! <Robin> how quickly are cleft palates diagnosed these days? You said that the incidence was slightly higher due to improvements in this area <Marlow> Thank you for your time!! Good night <Robin> good night, LB, please join us again...we meet every monday night at 9:00pm EST <LB> and many thanks to you Dr. P-F for your time and patience this evening! <Jamie> Are SLP CP specialists commonly hired in hospitals? <SPPetersonFalzone> And Jamie: CP specialists are not that common in regular hospitals. Check out University-based medical centers. <Jamie> Thank you <Jessica> I have a question regarding nasality. Why would the problem be misunderstood if someone is in long term therapy for nasality? <SPPetersonFalzone> Jessica: Because "nasality" usually means hypernasal resonance and/or nasal emission on pressure consonants. Either of these is usually due to a physical problem, and will not be amenable to therapy <SPPetersonFalzone> unless the nasal emission in phoneme-specific. <Jessica> That makes perfect sense. <SPPetersonFalzone> Jessica: Thanks. It's nice to have a compliment to end Monday. <Jessica> Thanks for you time. :) good night! <SPPetersonFalzone> Any more questions? If not, just a reminder that all of you have a constant source of help through the American Cleft Palate-Craniofacial Association, hotline number 1-800-24-CLEFT. <Adrienne> Thank you for signing on with us tonight Dr. Peterson-Falzone, You answered our questions wonderfully! <SPPetersonFalzone> No problem. My pleasure. If anyone else contacts you with questions on this stuff, give them my e-mail. Thanks, and goodnight. |
