Retts Syndrome-Scoliosis -Summary
Mike O'Donnell
Description
Collection
Title:
Retts Syndrome-Scoliosis -Summary
Creator:
Mike O'Donnell
Date:
9/20/2002
Text:
ORIGINAL POST:
Need some input for bracing a child with a 35 degree scoliosis, single long
curve.
I have been on the web but little information about how to brace.
I have taken the Boston & Charleston Courses, but do not know if in this
situation a standard TLSO, either ranterior or posterior, or bivalve would
be as appropriate.
Will likely be making a decision 9/16/02 about how to proceed.
Michael S. O'Donnell, C.P.O., FAAOP
RESPONSES I have included the names for other list serve members use. Thank you all for your responses.
I believe I got all of them included.
I am not familiar with Retts, but the CBB is very effective with single
curves.
Jim Hoehne, C.O
I have had experience with Rett syndrome patients with scoliosis, and
have used the Boston Scoliosis TLSO. I have been pleased with the
results. I would be pleased to speak with you concerning your case. I
can be reached @ 617-636-0643
Tom Colburn CO, FAAOP
Director of O&P, NOPCO @ Tufts New England Medical Center
Director of Education, Boston Brace International
I imagine the child is in a wheelchair. If this is true, I'd go with an
anterior opening jacket for an easier don/doff perspective. However, if the
child is likely to take it off because of the anterior opening, then you
should go posterior. A bivalved jacket would be my last choice as it doesn't
give you as much rotational control as an anterior or posterior jacket. The
only thing I know about Rett's syndrome is that it is progressive. In this
case, I'd guess that the curve will be progressive as well. So I'd go with
23 hour bracing vs. Charleston.
Contact Tom Coburn at NOPCO?? he seems to be the expert extraordinaire on
Boston Brace.
JenLee, CO
Good luck.
I have a patient with rett's syndrome that is pretty involved that also has scoliosis. I casted her on the risser table using a trunk shift to obtain in orthosis correction. I did this to avoid too much pressure in one area. I think the most important thing is that it be custom molded as well as avoiding too much pin point pressure. Good luck.
Keith M. Smith CO
314-567-7775
Something the parent can actually put on is recommended. Theoretically, a
one-piece full wraparound is best, but if the bivalve will be used more,
then do that. An abdominal opening (with liner intact) to facilitate
eating and breathing is usually good too; you may have to conisder
accomodating a G-tube also given this condition. Otherwise, it all
depedns on where the apex of the curve is how low a profile you can use.
Most of our kids with neurologic disorders and long C-curves seem to need
axillary height.
Vikki Stefans, M.D., pediatric physiatrist (rehab doc for kids) at UAMS
and Arkansas Children's Hospital. Working Mom of Sarah T. and Michael C.,
and wife of Henry Stefans, travel agent extraordinaire. Every mom is a
working mom!- OK, dads too. Other address: <Email Address Redacted>
I would venture to say the curve apex is around the T12 area, I would need to know for sure to make a positive suggestion. Our ped. orthopedist likes to use the Charleston, especially on a child that is under 13 years old. The orthotic intervention will be for a long duration and the Charleston is tolerated the best, our experience has shown. I prefer anterior opening. For the record, we have had excellent results and very good compliance. Bill DeToro
believe that the behavioral aspects of Rett's syndrome will be the
most challenging. In my experience, the torsos of these girls are not
deformed, nor does the writhing include the trunk. Therefore, I would
recommend that you treat this curve as you would if she had idiopathic
scoliosis. Understand, however, that you will have to rely on
observation of her skin condition to assess the fit, as she may not
communicate discomfort.
Sincerely,
Kevin Felton, CO, LO
Education Coordinator, Orthotics Department
Texas Scottish Rite Hospital for Children
2222 Welborn Street
Dallas, TX 75219-3883
voice: 214-559-7440
fax: 214-559-7473
website: www.tsrhc.org
email: <Email Address Redacted>
i think the TriaC scoliosis brace from SPORLASTIC could be a good solution
for your patient if she is able to walk and to do active correction of the
extension.
you can chack the TriaC onder www.sporlastic.de
Matthias Roller CPO-D
Stuttgart Germany
Need some input for bracing a child with a 35 degree scoliosis, single long
curve.
I have been on the web but little information about how to brace.
I have taken the Boston & Charleston Courses, but do not know if in this
situation a standard TLSO, either ranterior or posterior, or bivalve would
be as appropriate.
Will likely be making a decision 9/16/02 about how to proceed.
Michael S. O'Donnell, C.P.O., FAAOP
RESPONSES I have included the names for other list serve members use. Thank you all for your responses.
I believe I got all of them included.
I am not familiar with Retts, but the CBB is very effective with single
curves.
Jim Hoehne, C.O
I have had experience with Rett syndrome patients with scoliosis, and
have used the Boston Scoliosis TLSO. I have been pleased with the
results. I would be pleased to speak with you concerning your case. I
can be reached @ 617-636-0643
Tom Colburn CO, FAAOP
Director of O&P, NOPCO @ Tufts New England Medical Center
Director of Education, Boston Brace International
I imagine the child is in a wheelchair. If this is true, I'd go with an
anterior opening jacket for an easier don/doff perspective. However, if the
child is likely to take it off because of the anterior opening, then you
should go posterior. A bivalved jacket would be my last choice as it doesn't
give you as much rotational control as an anterior or posterior jacket. The
only thing I know about Rett's syndrome is that it is progressive. In this
case, I'd guess that the curve will be progressive as well. So I'd go with
23 hour bracing vs. Charleston.
Contact Tom Coburn at NOPCO?? he seems to be the expert extraordinaire on
Boston Brace.
JenLee, CO
Good luck.
I have a patient with rett's syndrome that is pretty involved that also has scoliosis. I casted her on the risser table using a trunk shift to obtain in orthosis correction. I did this to avoid too much pressure in one area. I think the most important thing is that it be custom molded as well as avoiding too much pin point pressure. Good luck.
Keith M. Smith CO
314-567-7775
Something the parent can actually put on is recommended. Theoretically, a
one-piece full wraparound is best, but if the bivalve will be used more,
then do that. An abdominal opening (with liner intact) to facilitate
eating and breathing is usually good too; you may have to conisder
accomodating a G-tube also given this condition. Otherwise, it all
depedns on where the apex of the curve is how low a profile you can use.
Most of our kids with neurologic disorders and long C-curves seem to need
axillary height.
Vikki Stefans, M.D., pediatric physiatrist (rehab doc for kids) at UAMS
and Arkansas Children's Hospital. Working Mom of Sarah T. and Michael C.,
and wife of Henry Stefans, travel agent extraordinaire. Every mom is a
working mom!- OK, dads too. Other address: <Email Address Redacted>
I would venture to say the curve apex is around the T12 area, I would need to know for sure to make a positive suggestion. Our ped. orthopedist likes to use the Charleston, especially on a child that is under 13 years old. The orthotic intervention will be for a long duration and the Charleston is tolerated the best, our experience has shown. I prefer anterior opening. For the record, we have had excellent results and very good compliance. Bill DeToro
believe that the behavioral aspects of Rett's syndrome will be the
most challenging. In my experience, the torsos of these girls are not
deformed, nor does the writhing include the trunk. Therefore, I would
recommend that you treat this curve as you would if she had idiopathic
scoliosis. Understand, however, that you will have to rely on
observation of her skin condition to assess the fit, as she may not
communicate discomfort.
Sincerely,
Kevin Felton, CO, LO
Education Coordinator, Orthotics Department
Texas Scottish Rite Hospital for Children
2222 Welborn Street
Dallas, TX 75219-3883
voice: 214-559-7440
fax: 214-559-7473
website: www.tsrhc.org
email: <Email Address Redacted>
i think the TriaC scoliosis brace from SPORLASTIC could be a good solution
for your patient if she is able to walk and to do active correction of the
extension.
you can chack the TriaC onder www.sporlastic.de
Matthias Roller CPO-D
Stuttgart Germany
Citation
Mike O'Donnell, “Retts Syndrome-Scoliosis -Summary,” Digital Resource Foundation for Orthotics and Prosthetics, accessed November 8, 2024, https://library.drfop.org/items/show/219698.
