My daughter is 15 months old and has Pierre Robin and was premature. 
Her main medical issue right now is her reflux disease.  She has had
two fundoplications, a full fundo called a Nissen and a partial called
a Thal.  Both have failed and she continues to reflux.  She is also on
Prevacid and Carafate to protect her esophagus and try to cut back on
the acid.  She was on Zantac but it was stopped because it had no
apparent effect on her condition.  Despite these treatments the reflux
is destroying her esophagus.  She has a severe stricture (tight band
of scar tissue) that the doctors have been dialating on a regular
basis and she has ulcers in her esophagus that sometimes bleed. 
During her last scope this week the doctor was unable to dialate her
because he was afraid he would tear the esophagus.  Just in the last
month her esophagus has become even more scarred and strictured and
the ulcers are worse.  The doctors have talked about removing that
part of the esophagus and replacing it with part of her colon and even
talked about being as drastic as removing the esophagus completely. 
If possible we want to avoid major surgery especially to the point of
removing the entire esophagus.

The main things I need to find out are:

1. Are there any GI doctors or surgeons out there that specialize in
tough cases like my daughters and how do I get in contact with them?

2. Are there more cases like hers and if so how were they treated?

3. What other ways might there be to treat the reflux when medication
and fundoplication surgery fail? (obviously this goes with #2 but it
is more specific as to the part of her case I'm curious about)

We are desperate for more ideas to take to her doctors or to find
different doctors who have delt with tough cases and may have
other opinions for us.

I would really like the focus to be on finding cases like hers and how
they were treated and finding doctors that treat the tough cases and
those doctors' contact information.

When I have searched for failed fundoplications is tends to bring back
things about trying another one or the lack of failure.  She has
already had a second one and they both failed.  Also when I search for
GERD treatments is talks about medications and fundo surgeries, I want
to know if there is anything else besides those two things, even other
medications we haven't tried or surgeries that may work in kids with
failed fundos.

This information is very important to the quality of life for our
daughter and her having the ability to learn to eat without a feeding
tube.

Thanks for your time.

---

Request for Question Clarification by crabcakes-ga on 18 Mar 2004 20:22 PST

Hi treenie,
First, I want to say how sorry I am for your little girl! My heart
goes out to you for her!

I just started researching your question, but I have a few questions.
Where are you located? 
Are you willing to travel, and is your daughter able to travel?
 
Thank you!
Sincerely,
crabcakes

Hi treenie,

I?ve found just a few alternative treatments for your daughter?s
condition. Please be aware that only your child?s doctor?s can advise
as to what is best for her. Any information posted in my answer is for
informational purposes, and is not intended as a diagnosis or a
recommendation for treatment of any kind. Additionally, if you contact
some of the hospitals I have included, the specialists there will
evaluate your daughter?s condition. Because these hospital?s 
physicians specialize in conditions like your daughter?s, they will be
up on the latest and best treatment.

Alternatives to fundoplications:

The Stretta Device made by Curon Medical. This is done by endoscope
using radio frequency. ?The physician places the catheter through the
mouth and into the valve between the stomach and esophagus. The
electrodes are placed into the tissue and radio frequency energy is
delivered to create well-defined areas of coagulation around the
electrodes. Water delivered through ports in the catheter irrigates
the surface mucosa during treatment. The device monitors temperature
readings to assure safety and precise control during treatment. The
physician repeats this sequence along the length of the
gastroesophageal junction. Over the next few weeks, the coagulated
tissue reabsorbs and shrinks, increasing resistance to reflux.?


Another option is the EndoCinch made by Bard. ?Using an endoscope (a
tube that?s inserted in your mouth and down through your esophagus),
your doctor lowers the suturing system to the site where the esophagus
and the stomach meet. Your doctor then places a series of stitches to
create a pleat in the sphincter. This pleat alters the gate or valve
to reduce the backflow of acid from the stomach up through the
esophagus? (I?m not sure this procedure would help your daughter.)

http://parent-2-parent.com/FUNDO/alternatives.htm

Here is Curon?s site, where more can be read about the above device.
http://www.curonmedical.com/

Bard?s web site is here.
http://www.gerdinfo.com/pages/home.html

Resident and Staff Physician has some different therapies:
http://www.residentandstaff.com/article.cfm?ID=66

Complications families should be warned about regarding fundoplications
·	Post operative pain/discomfort ? according to 61% of surgeons 
·	Retching ? 68% surgeons 
·	Failure to effectively reduce reflux ? 60% 
·	The need to ?re-do? the procedure ? 77% 
·	Gas bloat ? 79% surgeons 
·	Dumping ? 42% surgeons 
·	Worsening of feeding difficulties ? 47% 
·	Wrap may be too tight and need stretching ? 45% surgeons 
·	Others; inability to burp or vomit, adhesive intestinal obstruction,
tight wrap can lead to aspiration pneumonia, migration of wrap, early
dysphagia which is self-limiting.
Tracheo-Oesophageal Fistula Support
http://www.tofs.org.uk/news_aug01_fundos.htm

Other children with similar conditions:
There are several stories on this page. I didn?t read through all of
them, but Andrew?s Story sounds similar to yours. (I e-mailed this
mom, but the e-mail came back as being an invalid address.) Wesley?s
story also has an e-mail link.
http://parent-2-parent.com/FUNDO/stories.htm


This adorable little girl, named Astrid, has Aicardi Syndrome, which
is a completely different disease, but she has had 2 failed Nissen
fundoplications. An esophagogastric dissociation seemed to have helped
her a great deal.
?My biggest health problem has been reflux, which has also caused me
to have trouble breathing at night. I have had two Nissen
fundoplications, both of which failed within about 6 months. In early
spring of 2002, I had a new procedure called an esophagogastric
dissociation in order to solve my reflux. This involved detaching my
esophagus from my stomach, and attaching my esophagus directly to my
jejunum. My stomach is also still connected, and I am fed entirely by
g-tube. Because I have some trouble swallowing, I?ve been eating by
tube since I was about a year old, so this was not a big change for
me. This new surgery is working very well, and has permanently solved
my reflux. I am breathing much better at night now, though I still
always sleep on a pulse oximeter just to be sure.?
http://www.aicardisyndrome.org/oddpage.php?pname=meetus/pages&fname=Astrid-Glasmacher
Shae-Lynne?s reflux story
http://www.infantrefluxdisease.com/story.htm

These children have similar, though not identical disorders:
http://www.refluxinchildren.com/myrefluxers.html



Hospitals and Doctors:


Milwaukee Institute of Minimally Invasive Surgery.  Drs. Lyle Henry
and Charles Koh, are co-Directors of the Institute
Columbia St. Mary's Columbia Campus
2025 E. Newport Avenue
Milwaukee, WI 53211
Toll Free Phone: (800) 37-SCOPE
Fax (414) 291-1449
e-mail  mimis@columbia-stmarys.org 
http://mimis.us/procedures/nissenFundoplication.html
To request more information from this hospital, fill out this form, and submit.
http://mimis.us/contact/index.html


University of Washington
University of Washington Dept. of Surgery
Center for Videoendoscopic Surgery
1959 NE Pacific Street, Box 356410
206-616-1711
Seattle, WA 98195-6410
e-mail  cwesterg@u.washington.edu 

To request disability accommodations, contact the Office of the ADA
Coordinator at least ten days in advance of your course at
206/543-6450 (voice); 206/543-6452 (TDD); 206/543-3885 (fax); or
e-mail them at access@u.washington.edu.

http://depts.washington.edu/cves/location.html
http://depts.washington.edu/cves/lapnis.html
(Although UW specializes in successful Nissen fundoplications, they
are experts alternative procedures too)
http://depts.washington.edu/cves/procedures.html


Children?s Hospital of St. Louis
One Children's Place
St. Louis, Missouri 63110 USA
314.454.6173
http://www.stlouischildrens.org/articles/kids_parents.asp?ID=206
This page can help you find a doctor at Children?s Hospital
http://webserver01.bjc.org/slch/KidsParents/ParentsKids.htm?http://webserver01.bjc.org/sfnet/slch/physiciansearch.asp


Children's Hospital of Philadelphia, The University of Pennsylvania
School of Medicine
34th Street and Civic Center Boulevard
Philadelphia, PA 19104-4399
215-590-1000
http://www.chop.edu/consumer/index.jsp
http://www.chop.edu/consumer/your_child/condition_section_index.jsp?id=-8600
Contact Information
http://www.chop.edu/consumer/contact_us/index_page.jsp


Children?s Hospital, Boston
300 Longwood Avenue
Boston, MA 02115
617-355-6000
http://web1.tch.harvard.edu/cfapps/CHprogDisplay.cfm?Dept=Neurology&Prog=Center%20for%20Pediatric%20Sleep%20Disorders
Dr. Athos Bousvaros
Primary Office Location
Children's Hospital Boston
Division of G.I./Nutrition, Hunnewell - Ground
300 Longwood Avenue
Boston, MA 02115 
Phone: 617-355-6055
Fax: 617-730-0495
http://cgi.photobooks.com/scripts/troll.cgi?dbase=children&setsize=10&page=2&layout=public&department=Gastroenterology/Nutrition&pict_id=9901820

Dr. David Stoeckle, specializes in pediatric esophageal surgery
820 Hospital Drive,
Blacksburg, VA  24060
(540) 552-0005
http://newriversurg.com/pages/MDnews.shtml




Here are some commonly used GERD medicines, some of which you mention
already having tried.
http://www.refluxinchildren.com/medicines.html


GERD Medications:
Prilosec
Prevacid
Protonix
Aciphex
Nexium
Nizatidine

Motility Medications
Reglan (Metoclopramide) 
Bethanechol (Urecholine) 
Erythromycin?antibiotic that has been successful in aiding motility if
given in low doses.
Motilium (Domperidone)?I do not believe this is currently available in the US.
Tissue Protecting Drugs
Carafate (Sulcralfate) 
Cytotec (Misoprostol) 


Additional Information:

You probably already know about these sites, but I?ll include them
anyway, just in case!

Pierre Robin Network
http://www.pierrerobin.org/index.html

Contact a Family
http://www.cafamily.org.uk/Direct/p24.html
National Organization for Rare Disorders
http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Pierre%20Robin%20Syndrome

Pierre Robin Support Group
http://www.pierrerobinuk.org/

Gut Instincts
http://gut-instincts.com/

Pager-Pediatric Adolescent Gastroesophageal Reflux Association
 http://www.reflux.org/
http://www.eparent.com/resources/associations/pager.htm
State by State Parent Groups
http://www.eparent.com/resources/directories/pti.html


Office of Rare Diseases 
http://rarediseases.info.nih.gov/html/resources/info_cntr.html


Acid Reflux and Nissen Fundoplication
http://www.suite101.com/article.cfm/6530/45221

?Children with motility disorders don't do as well after a
fundoplication as children with normal gastric motility. Children with
delayed gastric emptying will sometimes have a pyloroplasty (or
pylormyotomy) done when the fundoplication is done. The pyloroplasty
involves cutting the pyloric muscle (the muscle at the bottom of the
stomach). This allows the food to move out of the stomach faster. The
pyloroplasty comes with the risk of dumping syndrome (the stomach
empties too quickly) so it isn't routinely done for every child having
a fundoplication.?
http://www.infantrefluxdisease.com/fundo.htm

Reflex Roller Coaster, by Roni MacLean, and Jean O?Neil, is a book
about coping with GERD.
http://www.infant-reflux.com/

Acid Reflex Forum
http://www.infantrefluxdisease.com/forum/

Articles:

Axya Medical Suture Welding Technology Used in GERD Procedure.
You?ll need to sign up for a free trial to read this entire article.
Your doctor may already have an account here.
http://www.highbeam.com/library/doc1.asp?docid=1G1:73415347

Esophageal stenting for fundoplications: is it necessary?
http://www.ssat.com/97ddw/ddw4.htm

An abstract on the myth of  the short esophagus. The entire article costs $12 USD
http://www4.infotrieve.com/newmedline/detail.asp?NameID=14625746&Session=&searchQuery=fundoplications&count=210


Once you let me know where you live, I?ll be happy to find medical
centers closer to your home, along with any additional information I
may find. If any part of my answer is unclear, please request an
Answer Clarification, before rating, and I will be happy top assist
you further.

Warmest Regards,
crabcakes

Search Terms
Failed fundoplications 
Pierre Robin Syndrome
Alternatives fundoplications 
GERD medications

---

Clarification of Answer by crabcakes-ga on 19 Mar 2004 10:11 PST

Hi again treenie,

I wanted to add a bit more information that I found this morning. I
also got back a very nice e-mail from one of the mothers (Wesley's
mom) on the Parent 2 Parent site. She said she will be pleased to have
you write her. Her child's fundo also failed.

Here are a few more hospitals that specialize in pediatric GERD:

Central DuPage Hospital performs two alternates to the Nissen procedure

Stretta - Outpatient procedure using controlled radiofrequency energy
to       tighten the lower esophageal sphincter, the muscle connecting
the          esophagus with the stomach.  (You should feel its full
effects within six      months.)
Endoscopic Gastroplication - Outpatient procedure where an endoscope  
       is used to tighten or cinch the esophageal sphincter from
inside the          esophagus.

Central DuPage Health 
25 N. Winfield Rd.
Winfield, IL  60190
Voice: (630) 933-4234
Fax: (630) 933-1300
E-Mail  cdh_information@cdh.org
Appointments:
877-933-5800
630-933-5800
http://www.cdh.org/cdhframe.asp?f=/gerd.htm


Texas Medical Center performs a minimally invasive fundoplication, by robot!
http://www.tmc.edu/tmcnews/12_01_99/page_03.html


This Texas A&M extension site discusses non-surgical techniques, as
above: ?Some non-surgical procedures have been developed to help GERD
patients, where lifestyle changes and medications cannot. Endoscopic
procedures (i.e., using an endoscope - a small, flexible, lighted tube
with a mini-video camera on the end - passed through the mouth into
the esophagus and stomach), are less invasive than surgery and usually
considered prior to surgical procedures. These procedures include:
-Endoscopic dilation - used to relieve esophageal stricture by passing
a balloon down the esophagus and inflating it.
-Endoscopic suturing system - places stitched in two different areas
near the weakened LES creating barriers to stomach acid reflux.
-Endoscopic Stretta system - uses controlled radio-frequency energy to
heat and melt (coagulate) tissues within the esophagus where the valve
is malfunctioning and at the junction of the esophagus and upper
stomach (Mayo Clinic, 2000a)."
http://fcs.tamu.edu/health/Health_Education_Rural_Outreach/Health_Hints/2001/mar-apr/mar-apr-2001.htm#13


University of Virginia
1215 Lee Street
Charlottesville, Va 22908
For appointments  (434)924-3627 or (800)251-3627
Patient Representative   434-924-8315
http://www.healthsystem.virginia.edu/internet/pediatrics/

Regards,
crabcakes

---

Request for Answer Clarification by treenie-ga on 22 Mar 2004 10:32 PST

Hi there!  Wow!! who knew there was so much pertinent info in the
jumble of stuff I kept getting back.  To answer your questions I am in
East Tennessee just outside of Knoxville.  I am willing to travel and
Annika can travel by car but I don't know about by airplane (we have
never had a reason to so I haven't asked the doctor).  We have a
Children't Hospital here but information on other Children's Hospitals
or even regular hospitals with the right specialists is helpful.  I
only have one question about your answer so far.  The hospitals and
doctors that you listed, are those some you found that had specialists
in the area of Annika's problems or are they ones that have GI and
surgical specialists in general?  Does that make sense? I hope so.
Have a wonderful day and I look forward to hearing from you again.

Thanks!!
Treenie

---

Clarification of Answer by crabcakes-ga on 22 Mar 2004 10:51 PST

Hi treenie,

Thank you for letting me know where you are located. Have you contaced
St. Jude's Hospital yet?

The hospitals I listed are pediatric esophageal specialists,which
covers your daughter's condition. If you can be patient with me, I can
make some phone calls, during the day, and see if I can find more
specific information. I'll post as soon as I have more information!

Regards,
crabcakes

---

Clarification of Answer by crabcakes-ga on 22 Mar 2004 12:12 PST

Hi treenie, I have placed some calls and also sent off more e-mails. I
thought I had included St. Jude's in my anwswer, but I see I did not.
I have left a message with St. Jude's as well, as they are in your
state, and have an excellent reputation, for most pediatric
specialties.

All the facilities I gave in my first answer indeed specialize in
pediatric fundoplications and GERD, under which any alternative
treatment to fundoplications would fall.

I'll keep you posted! Thank you for your patience!

Sincerely,
crabcakes

---

Clarification of Answer by crabcakes-ga on 22 Mar 2004 12:40 PST

Hi treenie,
While I wait for other's responses, I wanted to forward this name on
to you. This is a woman doctor, in Hackensack, NJ. I came across the
name in my latest search. I spoke to a very friendly woman, by the
name of Helen, who tells me Dr. Elaine Moustafellos is indeed the kind
of specialist you are seeking! Perhaps you can give them a call. Helen
did tell me it may be another month before you can get an appointment.
Specialists are always busy! Judging by Helen's demeanor, this sounds
like a very worthwhile lead!

Dr. Moustafellos is a partner to Wendy Jeshion, M.D.
Co-Chief of Pediatric Gastroenterology. 

Elaine Moustafellos, M.D.
Debora Kogan, M.D.
Hackensack University Medical Center
Department of Pediatrics
Center for Pediatric Gastroenterology and Nutrition
30 Prospect Avenue
Hackensack, NJ 07601
(201) 343-3732

Hackensack University Medical Center
30 Prospect Avenue
Hackensack, NJ 07601

http://www.jeshion.com/

I'll post as I hear back!

Regards,
crabcakes

---

Clarification of Answer by crabcakes-ga on 23 Mar 2004 11:32 PST

Hi again treenie!   :-)

So far no one has answered my many e-mails, or calls, except St. Louis
Children's Hospital. Avery kind woman, named Kim called me and asked
me to give you this name and number:

Kathy, in the Pediatric Gastroenterology Department.
314-454-6173
or, toll free at 1-800-678-KIDS (5437) If you call the toll free, ask
them to connect you to the 454-6173 extension, and ask for Kathy.

According to Kim, its best to call and discuss your daughter's
situation with them directly. By doing so, they can best determine if
thay are able to help you. If they can not, they can direct you to
someone who does. It appears likely that someone st St. Louis
Children's Hospital can help.

Please note that when there are relatively few cases of any particular
disorder, there are relatively few specialists. Most doctors that
treat cases similar to your daughter's are gastroenterology
specialists. These doctors keep informed of the latest treatments and
often are in touch with the actual researchers and specialists, who
may consult with them. When you call, you can ask them about
alternative treamtments, such as I described above.

I'll post as soon as I hear back from St. Judes, Medatlantic, and others.

Sincerely,
crabcakes

---

Clarification of Answer by crabcakes-ga on 24 Mar 2004 10:06 PST

Hi again, one more time, treenie,

I received an e-mail from a Dr. Kirschner, at the University of
Chicago Hospitals. She suggested that you contact Dr. Victor Fox, at
boston Children's Hospital.

I looked up Dr. Fox's contact information for you:
Primary Office Location
Children's Hospital Boston
Division of G.I./Nutrition, Hunnewell - Ground
300 Longwood Avenue
Boston, MA 02115 

Phone: 617-355-6064
Fax: 617-730-0495
E-mail: victor.fox@childrens.harvard.edu

http://cgi.photobooks.com/scripts/troll.cgi?dbase=children&setsize=10&page=2&layout=public&last=fox&pict_id=9901850

I had already given you Boston Children's Hospital, but I'll repost it here:

Children?s Hospital, Boston
300 Longwood Avenue
Boston, MA 02115
617-355-6000
http://web1.tch.harvard.edu/cfapps/CHprogDisplay.cfm?Dept=Neurology&Prog=Center%20for%20Pediatric%20Sleep%20Disorders

I hope this helps you and your daughter out! I wish your daughter a
speedy recovery! Again, please request an Answer Clarification, before
rating, if you need further assistance.

Regards,
crabcakes

Fantastic answer.  Very complete including phone calls to hospitals
and doctors in order to be sure they were worth recommending. I now
have the information I need to find help for my daughter and I saved
the time it would have taken to sort through the information searches
bring back.