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[Dysphagia] Freeman Sheldon Syndrome and microstomia



We have seen a couple of children with microstomia.  Stretching has not
done much.  The children have also had difficulty with jaw movement and
have require TMJ surgeries because the joints have become fused.  Jaw
movement exercises(stretching) has been implemented following the
surgeries.  Plastic surgery has also been completed to improve the
opening size of the mouth.

Scott

Scott Dailey, PhD, CCC-SLP
Speech-Language Pathologist
Department of Otolaryngology-Head & Neck Surgery
University of Iowa Hospitals and Clinics
200 Hawkins Dr. 21219 PFP
Iowa City, IA 52242-1078
(319)356-7030

-----Original Message-----
From: dysphagia-bounces at dysphagia.com
[mailto:dysphagia-bounces at dysphagia.com] On Behalf Of Ubben, Polly
Sent: Wednesday, July 07, 2010 7:25 AM
To: dysphagia at dysphagia.com
Subject: Re: [Dysphagia] Freeman Sheldon Syndrome and microstomia

Does anyone have experience with Freeman Sheldon or "Whistling Face"
syndrome for microstomia management?  We are using a small Similac
specialty nipple but this is a case of a premie who only has about an
inch of mouth opening-would labial stretches help or is there an
appliance that can be used.  From my research, plastic surgery may be
what is needed...
Any help is greatly appreciated!!

Polly Ubben, M.A., CCC-SLP/L
Speech Pathology
Saint Elizabeth Regional Medical Center
575 S 70th St., Ste. 300
Lincoln, NE
68516
(402)219-7498 (w), (402)219-7327 (f)
pubben at stez.org

-----Original Message-----
From: dysphagia-bounces at dysphagia.com
[mailto:dysphagia-bounces at dysphagia.com] On Behalf Of
dysphagia-request at dysphagia.com
Sent: Tuesday, July 06, 2010 1:00 PM
To: dysphagia at dysphagia.com
Subject: Dysphagia Digest, Vol 80, Issue 4

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Today's Topics:

   1. side effects of Ranitidine/long term use of Miralax (Heidi Sloan)
   2. Re: side effects of Ranitidine/long term use of Miralax
      (Hoge, Christopher O)
   3. Re: side effects of Ranitidine/long term use of Miralax
      (Dailey, Scott)
   4. Re: side effects of Ranitidine/long term use of Miralax
      (Nmlestz at aol.com)


----------------------------------------------------------------------

Message: 1
Date: Tue, 6 Jul 2010 07:29:22 -0700 (PDT)
From: Heidi Sloan <hjsloan at yahoo.com>
To: Dysphagia List Serve <dysphagia at b9.com>
Subject: [Dysphagia] side effects of Ranitidine/long term use of
	Miralax
Message-ID: <65033.21427.qm at web51307.mail.re2.yahoo.com>
Content-Type: text/plain; charset=iso-8859-1

Hi - 
I am working with an almost 3 year old little boy with severe
constipation issues.? He was placed on Ranitidine (generic form of
Zantac) for reflux.? The first possible side effect listed for this
medication is constipation.? Has anybody had any experience with this
medication and if so, has constipation been an issue?? Two different GI
doctors have recommended to mom that she does not change any of his
medications, including this one.

Related to this child, does anybody have any input regarding the long
term use of Miralax?? Does long term use impede/impact the body's
natural peristalsis?

I am currently?seeing this little boy for issues related to limited food
intake and limited food repertoire.? He is in the 5th% for weight and
10th% for height.? He has always been a very slow eater.? History of
reflux and constipation.? As of this week he has begun to refuse milk, a
main source of calories (still on whole milk).? Stomach can get
extremely bloated/distended (hard to the touch).? Two different GIs want
to do an upper endoscopy.? Would it make sense to do a lower as well??
Any other ideas/input would be appreciated!? He has made progress within
therapy with regards to the variety of foods he will try, but quantity
is very limited.

Thank you!


      

------------------------------

Message: 2
Date: Tue, 6 Jul 2010 09:36:08 -0500
From: "Hoge, Christopher O" <Christopher.Hoge at Mercy.Net>
To: "Heidi Sloan" <hjsloan at yahoo.com>,	"Dysphagia List Serve"
	<dysphagia at b9.com>
Subject: Re: [Dysphagia] side effects of Ranitidine/long term use of
	Miralax
Message-ID:
	
<2AA49D12B54550418ED9BE94A7D4D33706EB202D at stl-pmailusrp03.smrcy.com>
Content-Type: text/plain; charset="iso-8859-1"

One of my kiddos has some constipation issues, not severe, but enough
that our pediatrician recommended Mirilax on a daily basis.  I asked her
if it was safe to take over an extended period of time and she said that
it was, so I'm only basing this on what I was told.  It's certainly
helped!

Chris

Christopher O. Hoge, MS, CCC-SLP
Speech-language Pathology Director 
St. John's West Region
417 678-7887 Aurora
417 847-6085 Cassville
 
ST. JOHN'S 
One of the Nation's Top Integrated Health Systems
P Please don't print this e-mail unless you really need to.

-----Original Message-----
From: dysphagia-bounces at dysphagia.com
[mailto:dysphagia-bounces at dysphagia.com] On Behalf Of Heidi Sloan
Sent: Tuesday, July 06, 2010 9:29 AM
To: Dysphagia List Serve
Subject: [Dysphagia] side effects of Ranitidine/long term use of Miralax

Hi - 
I am working with an almost 3 year old little boy with severe
constipation issues.? He was placed on Ranitidine (generic form of
Zantac) for reflux.? The first possible side effect listed for this
medication is constipation.? Has anybody had any experience with this
medication and if so, has constipation been an issue?? Two different GI
doctors have recommended to mom that she does not change any of his
medications, including this one.

Related to this child, does anybody have any input regarding the long
term use of Miralax?? Does long term use impede/impact the body's
natural peristalsis?

I am currently?seeing this little boy for issues related to limited food
intake and limited food repertoire.? He is in the 5th% for weight and
10th% for height.? He has always been a very slow eater.? History of
reflux and constipation.? As of this week he has begun to refuse milk, a
main source of calories (still on whole milk).? Stomach can get
extremely bloated/distended (hard to the touch).? Two different GIs want
to do an upper endoscopy.? Would it make sense to do a lower as well??
Any other ideas/input would be appreciated!? He has made progress within
therapy with regards to the variety of foods he will try, but quantity
is very limited.

Thank you!


      
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------------------------------

Message: 3
Date: Tue, 6 Jul 2010 09:57:11 -0500
From: "Dailey, Scott" <scott-dailey at uiowa.edu>
To: "Heidi Sloan" <hjsloan at yahoo.com>,	"Dysphagia List Serve"
	<dysphagia at b9.com>
Subject: Re: [Dysphagia] side effects of Ranitidine/long term use of
	Miralax
Message-ID:
	
<825A13A34899AB40A5039B9E1B71939F06C5CF62 at HC-MAIL12.healthcare.uiowa.edu
>
	
Content-Type: text/plain;	charset="iso-8859-1"

If you look at most prescription medications, constipation and diarrhea
are listed as side effects so it is always difficult to tell which came
first or if any of the symptoms a person has are directly related to the
medication. 

We have seen many children with constipation and reflux for feeding
issues.  Our GI docs indicate they are related and it makes sense if you
think that the child is full of stool then reflux is going to happen
because things can not move along.  The reflux may still persist when
the constipation is resolved.  Our docs use Miralax frequently with few
side effects.  The balance is trying to get just the right dosage for
the child and involves a little titration after the child gets to very
soft stools.

Constipation and the discomfort with GI cramping are very negative
experiences and often associated with feeding issues in young children.
We recommend all medical issues be fully treated so we can make some
progress with feeding otherwise we feel we are just working against the
child's discomfort which can make the feeding issues worse.

Scott

Scott Dailey, PhD, CCC-SLP
Speech-Language Pathologist
Department of Otolaryngology-Head & Neck Surgery
University of Iowa Hospitals and Clinics
200 Hawkins Dr. 21219 PFP
Iowa City, IA 52242-1078
(319)356-7030

-----Original Message-----
From: dysphagia-bounces at dysphagia.com
[mailto:dysphagia-bounces at dysphagia.com] On Behalf Of Heidi Sloan
Sent: Tuesday, July 06, 2010 9:29 AM
To: Dysphagia List Serve
Subject: [Dysphagia] side effects of Ranitidine/long term use of Miralax

Hi - 
I am working with an almost 3 year old little boy with severe
constipation issues.? He was placed on Ranitidine (generic form of
Zantac) for reflux.? The first possible side effect listed for this
medication is constipation.? Has anybody had any experience with this
medication and if so, has constipation been an issue?? Two different GI
doctors have recommended to mom that she does not change any of his
medications, including this one.

Related to this child, does anybody have any input regarding the long
term use of Miralax?? Does long term use impede/impact the body's
natural peristalsis?

I am currently?seeing this little boy for issues related to limited food
intake and limited food repertoire.? He is in the 5th% for weight and
10th% for height.? He has always been a very slow eater.? History of
reflux and constipation.? As of this week he has begun to refuse milk, a
main source of calories (still on whole milk).? Stomach can get
extremely bloated/distended (hard to the touch).? Two different GIs want
to do an upper endoscopy.? Would it make sense to do a lower as well??
Any other ideas/input would be appreciated!? He has made progress within
therapy with regards to the variety of foods he will try, but quantity
is very limited.

Thank you!


      
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Dysphagia at dysphagia.com
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------------------------------

Message: 4
Date: Tue, 6 Jul 2010 11:28:49 -0400 (EDT)
From: Nmlestz at aol.com
To: hjsloan at yahoo.com, dysphagia at b9.com
Subject: Re: [Dysphagia] side effects of Ranitidine/long term use of
	Miralax
Message-ID: <c75c3.7cd56c2e.3964a5b0 at aol.com>
Content-Type: text/plain; charset="US-ASCII"

This may seem like an "out there" recommendation, but has this kiddo
been  
seen by a naturopath?  Many of the children I see have  
feeding/gut/attention difficulties and have been to traditional
allergists who  find nothing. 
Then these same children go to a naturopath who finds numerous  food 
sensitivities. Once these foods are eliminated from the diet I have
often  (not 
always) seen some really nice changes.  Dairy products are frequently  a
culprit, 
especially milk proteins.  It would be really hard to convince a  child
to 
increase their variety and volume of intake when all that causes them
is 
pain!
 
Good luck, and please keep us posted.
 
Nancy
 
Nancy Lestz,  MA, CCC-SLP
Pediatric Speech & Language Associates
710 NW Juniper St  Suite 110
Issaquah, WA 98027
425-392-2631
FAX:  425-392-4631

------------------------------

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