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
<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
<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
<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
<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.