[Dysphagia] cleft palate quest.

[kbreese at stny.rr.com (kbreese)]

Velvet -

 I'm willing to take a shot at an answer, since this kind of kid is "up my 
alley".  I would suggest referring her to a Craniofacial/Cleft Palate clinic 
if she isn't already being followed by one.  They may have some valuable 
input, esp. regarding the suggested series of probable surgeries.

Most likely the alveolar ridge surgery you refer to is a bone graft, which 
in my area is usually done sometime before the permanent teeth errupt, 
around 6 yrs. (The surgeons/dental folks assess readiness with xrays).  The 
kids we see at our team that need further surgical management for VPI with a 
pharyngeal flap, for example, often have the fistulas repaired at the same 
time.  In my area, this type of surgery is typically done anywhere from late 
preschool-early elementary age.

In terms of any management you can do now directly regarding the VPI, from a 
speech perspective is minimal - HOWEVER - you can do a lot in terms of 
teaching her correct articulatory placements so she doesn't develop 
comepensatory articulations, which are very hard to eliminate once learned. 
I realize she is very young.  You would of course, take a very play based, 
language approach, emphasizing correct placements as needed.  So, prior to 
any additional needed surgery, she is most likely going to be hypernasal - 
but being hypernasal with good artic. placements is preferable to being 
hypernasal with abberant articulations.  Then, hopefully when the structure 
is fixed, the nasality will decrease.  Parent education is key in terms of 
why they hear what they hear when she talks.

 In terms of her nasal loss of food/liquid, take a close look at what she is 
doing.  I have seen many kids who have a completely open (unrepaired) cleft 
who manage amazingly well with a variety of of foods and liquids.  Others 
with only a relatively small fistula complain of being uncomfortable with 
nasal reflux.  So, see if you can analayze exactly under what circumstances 
this is occurring - what type of food, what position is she in, is it more 
frequent when she is tired, excited, etc.  If she is really struggling, the 
dental folks on the team may be able to recommend some type of palatal plate 
(I can't think of the correct term right now...) that also acts as a arch 
support.  In my area, they often fit infants with wide clefts with them to 
keep the maxilary arches from collapsing prior to the surgery.

Regarding the oral hypersensitivity - is there any hx. of GERD?  If so, 
could it still be occurring and be at least part of the reason for the 
coughing/choking/nasal reflux?

We often see the type of tongue postion you describe with kids with 
significant oral hypersensitivity - "protective posturing".  I would suggest 
addressing this issue as you would with any child with oral 
hypersensitivity - work through it slowly within the child's comfort level, 
advancing diet as tolerated.  It takes time and patience!  But definately 
advance the diet as she safely and comfortably tolerates, you don't want her 
to get "stuck" on only tolerating softer foods.

I'm not sure what you mean by no suck reflux after 9 mo. surgery. 
Typically, they are not allowed to suck from a bottle directly after the 
surgery due to risk of sutures pulling out.  Or maybe she still had some 
numbness, which can last for awhile.

Hope that was what you were looking for - good luck.

Kathy
----- Original Message ----- 
From: "Velvet Balmer" <vbalmer@consolidated.net>
To: <dysphagia@b9.com>
Sent: Monday, October 11, 2004 11:49 AM
Subject: [Dysphagia] cleft palate quest.


> Joan, Suzanne, anyone?!?
> (Ladies, I mentioned you specifically because I have your books and 
> appreciate the wealth of information you have shared.)  First, the 
> scenario:  15 mo. old with complete bilateral cleft lip and palate, 
> surgical repair of lip  and second surgery at 9 mo of palate.  Surgery 
> closed palate but not completely successful, two remaining holes and uvula 
> that was formed is no longer present .  Child was not referred to OT or ST 
> until now.  Significant oral hypersensitivity to temperature and textures 
> as well as sensory issues with hands and head.  Lower  extremity 
> hypotonicity but trunk and pelvic support adequate for sitting without 
> support.  Tongue retracted and thick.  Nasal emission of food and liquids. 
> Some coughing/choking during oral intake - no suck reflex after 9 mo. 
> surgery, drinks from very soft sippy cup lid.  Incomplete labial seal and 
> weakness of lips.  No pitting of lips.  Planned, but not yet scheduled 
> surgery for alveolar ridge.  Questions:  What, if any, course of action 
> would you take to address the VPI prior to attempt to repair the palate? 
> Is advancing his diet something you would consider before next surgery (he 
> eats pureed items with a couple of finger foods (crackers, animal 
> crackers, etc.) but due to tongue retraction, tends to push food out of 
> mouth and has poor bolus control. Any other input you would have for me?
> Thanks in advance for any input,
> Velvet
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