vol. xvii, no.1, January, 1996
The Children’s Hospital and
Medical Center of Seattle will be holding their Arthrogryposis clinics
for 1996 on the following dates:
- January 31st
- May 29th
- October 23rd
For appointments, contact Shannon
at 206-526-2180. For information on the clinic, call Lyn Sapp, clinic
coordinator, at 206- 526-2000.
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Ireland Covers Arthrogryposis
The Muscular Dystrophy Society of
Ireland provides advice and support services to those “with
all neuromuscular conditions including the motor neurone diseases
and spinal muscular atrophies...and myopathies such as arthrogryposis.”
(From MDI’s home page on the Internet). MDI can be contacted
at: Muscular Dystrophy Ireland, Head Office, Carmichael House, North
Brunswick St., Dublin 7, IRELAND, Telephone: (+353 1) 8721501, Fax:
(+353 1) 8724482 or e-mail: email@example.com.
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Gabriele Hendrichs, who has been monthly holding
“chats” on America On-Line for those interested in arthrogryposis,
is organizing a meeting as well. The tentative date is August 1-4,
1996, in Memphis, Tennessee. If you are interested in attending,
contact Gabriele at 1507 Alabama Ave., St. Cloud, FL 34769. Her
fax number is 407-957-7880. Gabriele can be reached on-line at GabyH@aol.com.
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AVENUES on the WEB
AVENUES now has a home page on the World Wide
Web. It can be reached at: http://www.avenuesforamc.com.
We have the current issue of the AVENUES newsletter, general information
on arthrogryposis, listings of Support Groups, etc.
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MIR for Hip Diagnosis
and Maria Sims
I have just returned from Nemours Children’s
Clinic getting the results of our six-month-old son’s hip
MIR. The intention until now was to schedule hip surgery in the
coming months based on a previous sonogram indicating it was necessary.
However, the MIR clearly shows his hips are in their sockets, and
surgery is not necessary. Billy’s is now to be a case study
and warning to doctors/clinics proceeding with hip surgery based
only on sonogram analysis. MIR on the hips must be done prior to
any surgery performed. Please pass this information on.
If you need any additional information, or would
like to talk to our doctors directly, please call us at 904-464-1346
(my work) or home at 904-399-3826, or e-mail: firstname.lastname@example.org.
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Are They Necessary? (part II)
11095 CR 6850
Moody, MO 65777
I am responding to your July 1995 newsletter inquiry
concerning muscle biopsies. I have a five-year-old son, Dustin,
born with arthrogryposis. This is our story of muscle biopsies:
Dustin was born 1-12-90 by C-section due to breech
position. He was TTN (breathing distress) and appeared to have kidney
problems along with physical problems of fixed joints. He was rushed
to a larger medical facility 100 miles away. During his two- week
stay at the neo-natal unit, he underwent many tests and was examined
by several specialists. Dustin’s genetic tests were normal
as was the EMG. He received P.T. and O.T. while in the hospital
and I continued range-of-motion exercises at home with the supervision
of weekly P.T. visits. I also read everything I could get my hands
on concerning AMC, at one point shoving a copy of AVENUES under
the nose of an orthopaedic surgeon who refused to prescribe physical
therapy saying, “It probably wouldn’t do any good.”
This comment frustrated me and we began to look for a new doctor.
Our search led us to Memphis, Tennessee.
We began seeing an orthopaedic surgeon who recommended
no surgery for my son’s hip contractures due to the probability
of dislocation and loss of muscle strength during the twelve weeks
of casting. He also recommended we see a neurologist at the University
of Tennessee. The neurologist repeated the EMG and NCV (nerve conduction
velocity) tests with normal results. He assured us that he could
give us an accurate diagnosis if he were allowed to perform a muscle
biopsy. After much soul searching, we decided to proceed with the
biopsy to finally get answers and put our minds at rest.
The doctor said the muscle sample from Dustin’s
right biceps as this was his weakest area. Two long weeks dragged
by as we waited for the “final” diagnosis. During the
four-hour drive, I mentally prepared myself for the very worst and
practically fainted in the doctor’s office when we were told
once again that the results were normal. How could that be? We questioned
the doctor for over an hour and were reassured that although this
test did not indicate the problem, it did rule out many diseases
and disorders and would not need to be repeated. We were relieved
and disappointed at the same time. We are still asking the question,
“what is Dustin’s diagnosis?”
So, to answer your question, “what new information
can muscle biopsies give us?” our answer (based on our experience)
is “none.” “Can a diagnosis be made without them?”
Apparently a diagnosis cannot always be made with them. “Are
muscle biopsies really necessary?” In our case I must answer
NO. Not only did we fail to receive answers, but we now have even
M. Strathy, M.D.
Gillette Children’s Hospital
200 East University Avenue
St. Paul, MN 55101
I noticed in a recent issue of AVENUESa question
regarding muscles biopsies. To my knowledge, muscle biopsies are
not diagnostic of arthrogryposis. However, in the infant the diagnosis
of arthrogryposis can sometimes be difficult. The use of muscle
biopsies and other forms of neuromuscular testing can sometimes
be beneficial in ruling out other types of neuromuscular disorders
or in making a diagnosis other than arthrogryposis. The decision
to do a muscle biopsy is dependent upon several factors including
the clinical appearance of the child, any pertinent family history,
and the availability of a laboratory able to do the appropriate
testing on the muscle itself once it has been biopsied.
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Around The World
10319 Main Street
Thonotosassa, FL 33592
I am a single mother to a wonderful 31/2 year
old boy with AMC. I did not know of his condition until he was born,
as with most people. By the way, his name is Justin. Justin was
born with his shoulders internally rotated, elbows fixed in extension,
wrists flexed, and his fingers very stiff and jumbled together.
His hips were flexed all the way up to his head, his feet were also
turned inward and his toes flexed. Aside from his physical impairments,
he was and is a very happy and gorgeous little boy.
This is my first and only child. Being a mother
at the age of nineteen was a very big adjustment for me, not just
because of the demands of motherhood, but the enormous responsibility
of being a mother to a very “special child.” I would
love to correspond with other families with an arthrogrypotic child
or someone themselves who has arthrogryposis. I haven’t had
the opportunity to see or speak with anyone in the same situation.
I would also like to share any information I may have with someone
else who might need it.
Justin receives O.T. and P.T. through United Cerebral
Palsy twice each week. He is also followed by Shriner’s Hospital
for Crippled Children for leg braces, arm splints, and any surgeries
for the future. So far, the only surgery he has had is the Achilles
tendon lengthening which has enabled him to walk with braces called
AFOs. He currently wears splints on his arms to keep his wrists
in a good position. He is unable to feed himself because of his
arms being fixed in extension. Which brings me to a question. I’m
hoping there is someone (doctor, therapist, or person) out there
who can help me find out information. I have heard of a surgery
that can be done which will put one arm in a fixed flexion to enable
a person to feed himself, groom, etc....If anyone has heard of this
or has any information, please contact me at the above address or
phone number. It is of great importance to myself and my son to
get any feedback we can.
13626 S. Springs Drive
Clifton, VA 22024
Michael is sixteen months old and has arthrogryposis
in his arms and hands. I was twenty weeks pregnant when I found
out about his clenched wrists. I had gestational diabetes and was
on insulin. My first son, who has no physical disabilities, had
a virus around my fifteenth week of pregnancy, and he couldn’t
walk for one day because his legs were hurting. His CPK muscle enzyme
was elevated. Then I got the virus infection. Doctors can’t
answer what caused Michael’s condition but one thinks that
it could have been the virus (polio-like).
Michael is a wonderful, very good child. He’s
very happy, always smiling and persistent. He crawled when he was
twelve months and started to walk at fifteen months. He hardly had
any movement in his arms at birth. Now he’s able to pick up
toys, eat green beans, french fries, and rice cakes on his own at
the high chair. His two thumbs and index fingers have movements
but not the rest. He has slings/straps/velcro around his wrists
and on the back of his high chair to help him with elbow flexion.
He has no active elbow flexion and the doctors at DuPont (Delaware)
say that he may go through muscle transfer surgery by age eight.
if he still does not have any elbow flexion. Michael loves to walk
now but he has no wrist extension and no protective response. My
husband made a special harness to hold him up in case he falls.
This harness prevents me from getting a backache.
It took me a long time to share this information
because I had no idea what to expect. Now that I see improvements
in Michael, I have strong feelings that he’ll be just fine.
We have been very fortunate to have his O.T. and P.T. who are very
It still hurts once in a while to think about his
disabilities but I remind myself that he’s a very happy boy,
bright and improving. I hanging on to all the hopes/dreams/prayers.
I pray to God every night, thanking Him for my two babies as I had
to go through fertility workup to have them.
If anyone is interested in the harness, please
feel free to contact me. I’d like to get some tips to help
Michael with his protective response in case he falls. He uses a
helmet during walking all on his own.
2321 84th Place S.E.
Bothell, WA 98012
Hello! I am a twenty-nine-year-old with arthrogryposis.
I would like to speak with young women who have had children. Did
your child have AMC? Was pregnancy hard on your body? Were you able
to handle the infant? My husband and I would like to ask you questions
and gain insights you would be willing to share. Please write or
call. If your hands are hurting then just call-collect too, if that
helps. Are any of you exploring gene-therapy or fetal surgery? That
interests me too.
P.S. Does anyone with AMC drive a car?
9219 Day Flower Drive
Tampa, FL 33647
Our daughter Valerie is now three years old. She
has made tremendous progress since we first wrote to you in 1992.
She has had two heel cord surgeries and also had an open reduction
of the right hip. She is now under the orthopedic care of Shriner’s
Hospital here in Tampa and they have been great. They have provided
her with orthotics and a walker. She receives her therapy at Children’s
Therapy Center. Valerie’s weekly schedule includes 61/2 hours
of P.T., O.T., S.L.T., and soft tissue therapy. We have also had
success with cranial sacral therapy. Valerie works with wonderful
therapists. They have taught her so much—she can sit, pull
up to a bench or furniture, scoot along furniture, and feed herself.
We are currently working on standing and walking using an HK-AFO
Valerie talks well even though she does have some
oral motor problems that restrict some consonant sounds. She is
also learning to swim which has been great exercise for the muscles.
She loves to play with her older brother and friends. She is involved
with a weekly playgroup and library storytime. Valerie will attend
preschool next year.
If anyone has had success with any other types
of therapy or treatments, please let us know. Also, if there is
anyone in the Tampa Bay area with arthrogryposis, please contact
us. We have met one child so far.
and Kim Oliphant
22520 14th Place, West
Bothell, WA 98021
It’s hard to believe our little girl has
just turned three! The time has gone so quickly since her birth.
What a vast world of knowledge we have gained from this special
little person in our family. Now that Nicole is a “young lady,”
she is quickly becoming aware of her “differences” in
comparison to her “typical friends.” She wonders and
notices them play, running and walking. She always tell us, “I
will walk someday!” She has great ambition—part of which
I know keeps us all going. We are anxious for Nicole to meet more
children with AMC. We are planning a picnic/Summer BBQ in August
of ‘96, for any families in the Washington area or those who
may be visiting at this time. Please call or write by April ‘96
if you would be interested in joining the fun! I know the kids (of
all ages) will enjoy being together...
Nicole recently had knee releases to help straighten
her legs. We went from -70deg. in both to -30deg. and though they
aren’t completely straight, they are functional for bracing.
She will have KAFOs. Does anyone have information on the types of
braces or treatment for scoliosis and the effects this has on learning
(and the ability) to walk? Nicole’s spine may need support
when she is in her KAFOs.
We are also very concerned about how kids with
AMC do their schoolwork. Nicole’s fingers are pretty stiff.
Aside from the computer, does anyone have any devices or success
stories on how to teach Nicole to write independently? Nicole uses
her mouth and her hands (in sling suspension) for coloring but is
not steady enough for letter formation. What does kindergarten have
is store for us? Please write.
A special “Thank You” to Jerry Faraino,
who is president of N.A.F.I., for the wonderful video “Coping
with Arthrogryposis.” We shared it with Nicole and did her
face light up when she saw what other children with AMC were doing!
We’re on our way!
3348 Princeton Avenue
Philadelphia, PA 19149
Our daughter Vicki will be twenty-one in December
and cannot depend on treatment from Shriner’s anymore. Please
send a list of doctors interested in arthrogryposis in our area.
1606 2lst Street
Manhattan Beach, CA 90266
I am the mother of an eleven-month-old son, Sean,
who was born with arthrogryposis. In addition to the arthrogryposis,
he has other problems. This past year has been one of joy and sadness.
I am now looking to the future which requires more information.
I was recently given your address by a social worker. I would like
to somehow get in contact with other mothers like myself. I have
spent numerous hours at the Biomedical Library at UCLA and have
a lot of medical information. I am searching for information and
advice of families like ours plus doctors who have medical education
and experience with patients. I want someone to talk to that knows
what living with a child with this condition is all about. I hope
to learn from others and teach them what I have learned. I hope
you can help.
and Lucille Ford
1021 Woodmont Boulevard
Nashville, TN 37204-3235
We would like to bring you up to date on our son
Paul’s accomplishments, which should provide some encouragement
to children of our support group.
You will recall from previous letters that Paul
is a quadriplegic from birth due to AMC. He has very limited use
of his arms and legs. A number of months ago he was evaluated and
it was determined that he had enough push and lifting ability in
his legs as well as lateral movement in his arms that would allow
him to operate a highly modified van.
The Braun Corporation, of Winomac, Indiana, did
the lowered floor, door, and ramp and the Ahnafield Corporation
of Indianapolis, Indiana did the driving equipment. As he quoted
from the ADAPT bumper sticker “We proudly go where everyone
else has gone before.”
Paul continues to be employed by the State of Tennessee.
He has advanced to a Systems Analyst III, a programmer/analyst in
computers, for the Department of General Services. He is well adjusted
and very involved in several disability organizations. He is on
the Board of Directors for the Center for Independent living of
Middle Tennessee and Access Services of Middle Tennessee, a clearing
house for information on technology for the disabled, and he is
a member of The American Disabled for Attendant Programs Today (ADAPT),
an advocacy organization.
and Cathy Sidebottom
P.O. Box 38
Anton, CO 80801
Our daughter Nicole is now 12 1/2 years old. How
time flies. She is eagerly awaiting junior high in the fall. She
also was matched a year-and-a-half ago with a beautiful Canine Companion
named Carole. She and Nicole are the best together. Nicole has never
lacked for confidence, but with Carole by her side, nothing can
stop them. Nicole has done numerous demos and speaking engagements
for CCI (Canine Companions for Independence). How thankful we are
for reading about CCI in AVENUES. You have touched many lives. Our
prayers go out to you.
and Mrs. Richard E. Aumick
9777 E. 450, South
Walton, IN 46994
I am writing to thank you for all the good work
you are doing and for all the encouragement your paper has brought
When our son was born with arthrogryposis on August
5, 1975, we were devastated. But we immediately decided to do everything
in our power to see to it that he had the most normal life that
In the beginning, numerous student doctors told
us we should prepare for Tony to be in a wheelchair as he wouldn’t
be able to walk. But we were lucky and had a very good orthopaedic
surgeon that kept encouraging us that anything was possible if we
didn’t give up, so we kept on with the exercising of the legs,
After several surgeries on his feet, knees, and
back, to bring his heels down, stretch his muscles, and straighten
his back from the scoliosis which he also had, he was able to do
nearly anything he wanted. He was only four feet, one inch tall
and weighed about sixty pounds his senior year in high school.
His body was very badly twisted from the scoliosis,
and his muscles were contracted so he could not stretch out, so
he was unable to participate in the sports he enjoyed, so he was
manager of the boys’ tennis team all four years of high school,
and manager of the boys swimming team his senior year.
As he was too short to drive just any car, he was
unable to take Driver’s Ed, so his dad extended the pedals
for him, put cushions around him to put him in the position, and
taught him to drive. And I believe what he was proudest of was that
he was able to drive a normal car without having to have hand controls
or anything that marked it handicapped.
Tony did not believe he was handicapped, he was
only limited, as he could do almost anything, he just had to figure
out a different way to accomplish some thing. Many of the so-called
normal people around Tony were far more handicapped than he was.
On May 5, 1995, Tony was finishing his first year
of college when he got congested, and his body just couldn’t
seem to fight it off. He just lay back on his bed, and went to sleep
for his last time.
While we miss Tony dreadfully, we have found that
he touched more peoples lives in nineteen years than many people
do in a full lifetime. Through Tony, we learned the key to success
is not money and power. It is love of people and of God. No matter
what they may look like on the outside, what’s inside is what
counts. Hundreds of people have been in touch with us to express
their loss also.
Tony wasn’t a quitter, and taught us not
to be. His faith in his doctor was unending, as was his trust in
God. Many times we could very easily have not put Tony through the
pain of exercises or surgery, but we wanted what was best for Tony,
and that was to be able to stand on his own two feet. And at fout
feet, one inch tall, he was one of the tallest men I have ever known.
Had Tony just had arthrogryposis, he could have
lived a very long and happy life. The scoliosis made it much harder
and shortened it considerably. But we are very thankful for the
time we had with Tony, and very proud of his success in life. He
truly made every day count.
1 Whispering Hills Drive
North Branford, CT 06471
I am writing to you in the hopes of getting some
information about arthrogryposis. My son was born in January and
diagnosed with arthrogryposis. His lower body is what is mostly
affected. He has severely clubbed feet and is unable to bend his
knees on his own. He has been seeing a pediatric orthopaedic doctor
at Yale New Haven Hospital, and has had leg casts on since he was
one week old. We are now waiting for his feet to get bigger so he
can have surgery. His left wrist was also affected, but is getting
better with physical therapy and the help of a splint.
I would be interested, if possible, to talk with
other families who have been affected by arthrogryposis.
92 West Van Ness Street
Newburgh, NY 12550
I enjoy the stories from people around the world
and have decided to share mine. I was born May 3, 1946 with arthrogryposis;
it affected my arms and legs. Luckily, I was born to wonderful parents
who devoted their lives to helping me cope. My father was a hard-working
decent man who followed my mother’s lead; she was the aggressive
one. Mom was determined to get me the help I needed. Her search
led me to Dr. Robert Carroll at Columbia Presbyterian Hospital in
New York City. As a youngster, mom, dad, and I made numerous visits
to the man who gave us hope: the feeling that much could be done
for me. Braces and exercises were the daily routine until I was
in my teens and ready for a series of surgeries. Mom brought me
up to think and feel “normal.” She fought for me to
get into elementary parochial school where I eventually skipped
two grades. From there, I went on to a public high school, then
college. All the while, my mother assisted my exercises, tutored
me, guided me, and provided unconditional love. She passed away
in 1986, three days before Christmas—part of me died that
day too—but I had to go on.
Halfway through college, I decided I wanted to
be a social studies teacher. When I went for job interviews, principals
were cordial, but I could tell none were ever going to give me a
chance. I had a 3.4 cum (3.6 in history), along with top recommendations.
People less qualified than me always got the job. This was before
affirmative action, accessible buildings, and reserved parking spaces.
Finally, on November 16, 1974, the call came. The Newburgh Board
of Education was going to try me at the local junior high school.
I was told that I wasn’t wanted there and no one thought I
could control a class. It is twenty- one years later, and I’m
still teaching at the same school.
In an otherwise successful fight against AMC, one
thing has eluded me—true love. I was married for four years,
but my physical problems, combined with her mental ones proved too
much weight for our relationship to carry. I still am looking for
love. Being disabled cuts the field tremendously; not driving cuts
it even more. I continue to search. If someone can offer advice
on how to find love in spite of AMC, please contact me.
11095 CR 6850
Moody, MO 65777
Several newsletters ago you published a letter
from Tedd Mallasch indicating his desire to donate a used Irish
Mail to a child with AMC. I wrote this very generous gentleman and
told him about my five-year-old son, Dustin, who has arthrogryposis.
In a very short time, the car arrived and Mr. Mallasch refused to
allow me to reimburse his shipping costs. Since then, Dustin has
spent many happy hours zooming around on his new
I would like to publicly say “Thank You”
to Mr. Mallasch for his generosity and continued support. Thanks
also to AVENUES for bringing our families together. Keep up the
23409 Gilmore Street
West Hills, CA 91307
I spoke with you on the telephone several months
ago, after being told that my unborn child would have arthrogryposis.
You were extremely helpful and reassuring to me. I want to thank
you for the copies of AVENUES that you sent to me along with other
My daughter, Leslie Caron Petersen, was born on
May 11, 1995, at thirty-five weeks gestation. Leslie spent twelve
days in the NICU, mainly for feeding problems. Doctors in the NICU
initially diagnosed distal arthrogryposis, but at a subsequent consultation
with a Pediatric Geneticist we were given the diagnosis of arthrogryposis
secondary to amyoplasia.
Leslie’s upper body is the area most affected,
with significant weakness in the shoulders and elbows. At birth
she had wrist contractions that were very fixed. Her hands were
extended at the MP joint with very mild contractures at the IP joints.
We began splinting the wrists at five days of age. We have noticed
very good improvement in the contractures with markedly increased
flexibility, although she now has some ulnar deviation of the wrists.
Leslie is able to control her left arm fairly well, but she has
some trouble supinating her right arm. Fortunately, she can bend
both arms at the elbow to get her hands to her mouth.
Leslie has strong hip and knee muscles and no contractures
at those sites. Her feet were severely bilaterally clubfoot. We
found an orthopaedic surgeon willing to try serial casting after
first meeting with two surgeons who recommended surgical treatment
alone at about one year of age. The casting has gone well, however
we recently learned that surgery will still most likely be necessary
We are interested in trying a modified Dennis Browne splint. Do
you know of anyone who has used one of these?
ln addition to problems with her extremities, Leslie
has great difficulty with sucking. She has managed somehow to suck
well at the breast, but cannot yet successfully use a bottle. We
are currently using a softcup feeder and are just introducing solids.
We hope that this will free me a little from the job of feeding
Leslie, since she now nurses every one to two hours.
Learning about Leslie’s condition and possible
treatments, taking her to be evaluated and to therapy appointments
is nearly a full time job at this point. Your newsletter has done
much to assist me in learning more about arthrogryposis.
1873 Appaloosa Drive
Naperville, IL 60565
My son Alex, who is almost two years post club
foot release surgery is doing well. He is no longer wearing AFOs,
runs and rides his bike and has good hand strength. The left foot
still turns in a bit, and he may need a tendon transfer in the future.
He had some finger anomalies as part of his AMC, and although the
fingers are shaped regularly, they lay “differently.”
He is left handed, and when using the left hand his thumb pops in
and out of the socket. Also, his legs are very thin between the
knee and ankles with no thickening on the calf. We are wondering
if there is a way to work towards developing the calf muscles a
bit. I have read that Kristi Yamaguchi, the Olympic Gold Medalist
figure skater was born with both club feet requiring surgery, yet
I note that she has a regular contour to her legs.
E. Missoula, MT 59802
Matthew is our very special little boy. He is
soon to be five years old. He was diagnosed with arthrogryposis
at birth. The first things that we noticed about Matthew was that
he was really stiff and he wouldn’t eat. It took about four
hours to feed him a little four-ounce bottle. At about three months,
we began gavage feeding and then at about seven months we switched
to a feeding tube which he is still using.
Matthew’s arthrogryposis affects both his
upper and lower extremities. He sees a physical therapist, an occupational
therapist and a speech therapist weekly. At times he has difficulty
breathing. He has been in the hospital at least twenty times in
his four short years—mainly with pneumonia. Sometimes our
home seems like a miniature hospital. We have a breathing machine,
a suctioning machine, a feeding pump and are soon to get a hand
held chest percussioner. On the other side of all of this Matthew
has had many good days. A significant difference in his health was
noticed after he had his tonsils and adenoids out which was about
one year ago.
Matthew loves music and he has a head switch and
a jellybean switch so he can activate his music and some of his
toys by himself. He loves being around people. He likes being outside,
playing in his swing and going through the sprinkler at the park
in his wheelchair. He’s been going to preschool three days
a week and this year he will be going four. He likes being with
his friends and doing what they’re doing. He rides home from
school on a little yellow bus.
When he gets home from school it’s time for
chest percussions, feeding and stretching. Before you know it’s
time for a bath and bed. Then at the end of the day as I stand watching
him sleep, I remind myself that special children are a gift from
God and I say to Matthew, “We love you very much and we’ll
see you in the morning.”
and Mel Ginsburg
356 Idaho Street
Ashland, OR 97520
First, thanks for everything you do to help so
many families! We’ve learned more about AMC through AVENUES
and the contacts we’ve made through you than anywhere else.
A brief update on our child with amyoplasia, adopted
in 1992 from Brazil: Morgan turned four on August 28, 1995. He had
surgery at Seattle Children’s in the fall of 1992 to release
one hip and both feet. No other joints are affected. He began walking
with crutches in April, 1995, and we changed from posterior shells
to anterior floor-reaction AFOs in June. By August he’d taken
twenty-eight at one time without crutches or holding onto anything.
We credit the support in front of the knee. He began preschool in
September and is doing great. toileting and relinquishing the bottle
are current concerns. We welcome any feedback or suggestions.
Now, a plea: In July we became aware of a baby
girl (born 8-21-93) in Brazil with amyoplasia, both arms and legs.
Tami seems very bright. You can see how beautiful she is! Adoption
is the child’s only chance for medical treatment and a functional
life. She is available immediately. We can provide photos, video,
and detailed reports on her condition. Anyone interested can call
us. If you leave a message on our answering machine, we will call
Mary, Meghan and Emily Workman
900 S. Meridian Street, Apartment 42
Washington, IN 47501
Last time I wrote, our daughter, Meghan Elizabeth,
was just a baby. Now she is 31/2 years old. She can do just about
anything a three-year-old normally does except walk and go potty
in the big potty. She can color, feed herself, take her shoes and
socks off, and turn pages in her books. She has absolutely no muscles
in he arms but she can do all these things with her feet.
She learned to do this all by herself. I set a
plate with cut-up fish sticks on the floor by her with her fork,
which I forgot to take with me, and she picked it up with her foot
and brought her foot to her mouth and thus can feed herself now.
She can say her ABC’s and count to ten. Many
of the Barney songs she can sing by herself. I always thought she
would be a little delayed in her mind also, but she isn’t.
She can ask questions and answer questions asked of her. She is
so beautiful. Her arms are smaller than everyone else’s her
age—particularly from having no muscles in them. Her legs
are tiny also, but there she has muscles. her feet are still club-footed,
and as long as she decides to use them as her hands, no surgery
will be done to correct them.
We had taken Meghan previously to Riley Children’s
Hospital in Indianapolis, but they were so concerned with getting
her on her feet and walking that we were just too concerned about
her learning things which she does with her feet. Riley told us
she would have her feet in casts around 6–8 weeks. She would
have gone crazy not being able to anything. Her feet are her hands
to her. So, we took her to Shriner’s Hospital in St. Louis.
They were all for keeping her feet the way they are until she has
adapted to using her hands. They said that she wouldn’t be
a good candidate for muscle transplants because she didn’t
have tendons. That we didn’t know until then.
We are very proud of Meghan and all she has accomplished
this far in her life. Up until recently, she would do anything,
or at least try it, but now she has adopted the phrase, “I
can’t,” whenever she can’t do it the first time.
How do you get her to try these thing again? I am just so helpless
when it comes to these things with Meghan. My husband and I have
recently been blessed with another daughter, Emily, and Meghan just
loves her. Meghan is especially interested in Emily’s hands
(Emily has no medical problems). Meghan never looks strangely at
them or anyone else’s hands but is just fascinated. She is
always saying, “Look at Emi’s hands.” Recently,
I took Meghan to the park and she just wanted to play with the rocks,
but you could see her looking at the other kids running around,
and she couldn’t. I just can’t trust other children
to take her away because they knock her down and are basically are
just mean to her because she can’t defend herself. I just
wonder if other parents had to decide something when it came to
other siblings. Do I limit the things Emily does when she gets older
because Meghan can’t, or do I let Emily do things and watch
Meghan sit on the side? I am so lost on how to handle things now
that Meghan understands just about everything, except why can’t
she? She never acts like anything is different and maybe I am being
overly protective about hurting her feelings, but I just want to
avoid situations that may make Meghan feel less than another child.
She attends a preschool for developmentally delayed
children, but none of them have the problems Meghan has. All of
them can walk and get around and can use their arms. She has taught
them how to paint with their toes. Most of the time the other kids
get frustrated and just do it with their hands and Meghan will laugh.
Meghan can get around by scooting on her bottom.
She has tremendous balance on sitting up. She was fifteen months
old when she finally sat up by herself. She had a wonderful therapist
that worked with her every time until she could do it herself. She
started off sitting up for five seconds and then twenty. Until one
day at home I sat her up (still supporting her) and let her go and
she sat up for fifteen minutes! I felt like she had taken her first
step. The doctors had told us, when she was first born, that she
would walk and sit up like other children. I have noticed in letters
that doctors have told them their children wouldn’t do things
and they do anyway. Have parents been told their children would
do something and yet they still haven’t? What were the ages
of the children when they started walking?
Meghan was also born ten weeks prematurely. She
weighed two pounds, nine ounces. Have any other parents had children
born prematurely that had arthrogryposis? has their weight gain
been slow? Meghan weighs nineteen pounds and is quite tall when
standing. She also doesn’t really have an appetite—until
she started feeding herself. Now she wants to do it herself.
Meghan has a chromosome disorder called Trisomy
X. She has three female chromosomes. They said the type of person
from this disorder is usually average intelligence to slower learning.
Behavior problems also go along with that. Meghan, to us, is above
average in social, academic, and creative ways. I just think she
is the smartest child anyway.
I had one family with a little boy named Matthew
write to us some time back and the envelope was never found with
the return address on it. I would like to say “thank you”
to her for writing me, and the other people also. They gave great
ideas to try. Still, we haven’t seen any muscle development
at all, except for her shoulders. We are still hoping for some help
for Meghan, but if not, she has her feet. She will still be able
to everything she needs to do with her feet. She can even pull hair
bows out of her hair. I never thought that would be possible. She
sits against the couch and swings her leg up and pulls until it
comes out. Strange things that children love to do. She cannot keep
her hair out of her eyes yet she loves having it there.
I also have a question about going to the bathroom.
Have any other children had problems potty training? Meghan’s
pediatrician seems to think maybe Meghan doesn’t have the
muscle to control her bladder. Have any other parents had problems
with this? Please put my family’s name on the list of interested
parents and I hope people with questions will write or call us.
We would be happy to talk with anyone.
Also, Shriner’s Hospital in St. Louis is
trying to get together an arthrogryposis clinic as soon as everything
is sorted out. We also would like to hear from parents that have
taken their children to Shriner’s in St. Louis. We have seen
a lot of parents that have taken their child to a Shriner’s
Hospital but have yet to see any from St. Louis.
Thank you, AVENUES, for being there to listen and
help us support each other.
and Paula Vokoun
1257 Rockinghorse Lane
Lake Oswego, OR 97034
Our son Scott has arthrogryposis involving both
arms and legs. He is ten years old and has been treated since birth
at the Portland Shriner’s Hospital. He has done quite well,
is a happy and outgoing kid, and is involved in many activities.
Although he has his limitations, he is able to ski through an adaptive
ski program and he drives a quarter midget race car. We are seeking
information to help us in making a decision regarding treatment
of his arms. His arms are inwardly rotated at the shoulders; elbows
are in extension with about 45- 60 degree passive motion; and hands
are pointed away from the body. He has good fine motor skills and
is able to write. However, because of the position of his hands
he is unable to access his mouth for feeding or brushing teeth.
We consulted with Dr. Ed Almquist, a hand specialist at Children’s
Hospital in Seattle. He recommended that Scott undergo bilateral
triceps to biceps transfers and a rotational osteotomy on the right
to bring his hand into a natural position of function. If anyone
has experience with these procedures, we would love to hear from
you (medical personnel, parents, or patients). If you know of anyone
who has had this done, or considered it, we would like to hear about
it. What are the pros and cons of these procedures? What function
can we expect to gain and what can we expect to lose? What is the
post- op recovery period? Should we get another opinion? If so,
who and where? Any input on this would be greatly appreciated.
and Carla Whitesell
10020 N. Edington Place
W. Terre Haute, IN 47885
I have been receiving your newsletter since my
daughter Ella was diagnosed 31/2 years ago with AMC. I am writing
to you now because I am looking for some support that I have not
seen in you news letters before. Ella passed away on October 14,
1995, very unexpectedly. She had no indications of any actual health
problems other than her obvious orthopedic and low muscle tone.
She did, however suffer at one time from what her pediatrician called
a vagal response. Her bowels were not moving appropriately and put
extreme pressure on her vagus nerve causing her heart to stop suddenly.
We seemed to remedy that with daily doses of mineral oil to keep
her intestines lubricated. She never had another episode of that
again. She was a very beautiful child with a great disposition.
Always happy, but a typical three-year-old too. She taught us many
things about life and love. I received an e- mail from Gabriele
Hendrichs a few daysago. She said that she seems to remember hearing
of this happening to a couple of other families. She is trying to
locate some families for me. I didn’t know if AVENUES knows
of this happening either. We are very heart broken, and just need
to talk to someone I guess. I was very excited when I found your
newsletter on the Internet.(I am very new at being on line!) I wish
I had had access to it sooner. My husband and I also have another
daughter, Olivia, who is eight. She misses her sister very much,
and I am not sure that I am helping her cope very well. I am trying
my best, but it is hard to tell if you are doing the right things.
Do you have any info about helping siblings cope? I hope that I
am not asking too much, it just helps writing this to you. I have
always loved receiving AVENUES, and plan to continue doing so. Maybe
someday, I can be of help to someone else.
34 Pierce Avenue #2
Beverly, MA 01915
I am a thirty-year-old recently married with AMC.
I really do not know much about this disease except that it is congenital.
Arthrogryposis affects all of my limbs. Now that I’m married,
my main concern is to research arthrogryposis as it relates to me
becoming pregnant. Of course, it will not be easy for me to carry
a child due to my handicap. I’m sure with extra weight to
carry, my balance could become more off than usual. My doctors have
all told me they see no problems with me conceiving a child. I am
already certain I will most likely deliver by C-section.
I have read some entries from others who have this
condition in the AVENUES newsletter and frankly, I am a bit scared
to try to get pregnant. I have been told all my life that it is
not hereditary. However, in the newsletter, I read of a woman who
had two girls four years apart who were both born with AMC. Another
was the address and birthdates of a man and his son, both with AMC.
Please inform me of the facts! I do not want to get pregnant if
there is a risk of AMC being hereditary.
Would someone be kind enough to send me e-mail
back pertaining to my inquiry, or, send me some specific information?
Is there a genetic counselor who specializes in AMC that I can talk
with? I look forward to hearing from someone soon!
2565 Edgewater Drive
Napa, CA 94559
My daughter, Jessica, is thirteen with a mile
case of AMC, amyoplasia type. It is mostly in her arms and hands.
Her arms were contracted a birth in flexion, her hands too. She
wore leg and arm braces for years but does not now. We have not
met anyone with a case as mild as hers. As the years go on, she
seems to be gaining more strength. She is still limited in some
areas. It has been especially difficult in regular PE (she refuses
adaptive PE). Last year, she was flunked in the track unit for only
running nine out of ten events (ten was an “A” and nine
was an “F”), even though her IEP stated she should do
80% of the activity requirement. It was a terrible battle that we
finally gave up on. The principal refused to intervene. She didn’t
want to go to a fair hearing and testify, and we didn’t want
to put her through that. Some people have no heart!
She would love to write to someone else with similar
problems in her age group. I am interested in hearing from anyone
that has a mild case of AMC like hers. Basically, her legs are fine
now. She has very floppy hands, weaker arms. Can’t push up
on her arms if she is on her stomach. She is a can-do person, but
is still in a lot of denial that she has any problem. She is starting
to open up now. Also, any new conferences coming up in California?
My four-year-old daughter, Claire, has started
to make phone calls to her friends to invite them over. Does anyone
have any ideas about low- tech adaptations so that she can begin
to make these phone calls herself. I suspect she will insist on
making them in the next year. I thought I could probably find a
telephone with big buttons and memory, but I couldn’t imagine
that Claire’s young voice would carry over well on a speaker
phone. Any suggestions?
8100 W. Quincy Avenue N-23
Littleton, CO 80123
I am mother to Randell C.L.K. Starker who was
born with x-linked lethal arthrogryposis. Randy represents the 30%
of the arthrogryposis community that receive it as a genetic disorder.
Randy has since moved on to bigger and better things. Having moved
on to his next life, he left me as his voice.
Today I found out through a phone call (from a
doctor in Florida who is working hard to find the gene to this)
that they are close to an answer to the questions our family has
had for many years. But, sadly and happily, I also out that our
family is not in fact the only carrier of this most profound strain
of this disorder. Rather, one of three families. Happily, because
we are not alone in the first time in over twelve years, but sadly,
because by not having anymore children, we prayed that we would
be able to wipe this off the earth.
Our family is a four generation family, seven sons
affected and three carriers left. My great-grandmother and grandmother
had one boy each with it and many normal sons. Then, somehow it
changed. My mother had two boys with it, both having different fathers
and two daughters who were both carriers. My sister, Chris, lost
two sons and I lost Randy after twelve months, three weeks. Randy
had the least medical problems and the best chances and he lived
the longest. With our sons all of the joints are affected, most
were born with broken and dislocated bones, brittle bones, deformities
in the internal organs, paralysis including the vocal cords, among
countless other things...
There is so many wonderful things happening with
finding a cure for this and so many of the families who have worked
with doctors and geneticists to get us here. But there is still
so much we need to do. Now more than ever, the letters, phone calls,
and over-bearing parents are needed. All of us should thank our
lucky stars for our little Randys who give us our biggest challenges
and our greatest compliments.
585 Grace Way
Scotts Valley, CA 95066
Please put me on your list to receive AVENUES.
I got your names and addresses from Anita Connor—we share
a hairdresser. I am fifty-eight years old and have arthrogryposis.
I have never met another person who has it. I am particularly interested
in information on arthrogryposis and aging. Until about five years
ago, I ticked along fairly well. I owned a cane which I used for
emergencies. Out of nowhere, I started getting occasional episodes
of extreme weakness in my thighs and hips where I nearly fell over.
After each one, I had less and less recovery. Now I can barely walk
with two canes and sometimes must use a wheelchair. My doctor referred
me to Stanford Orthopaedic Clinic last summer. They’d only
seen two children with arthrogryposis some time ago. Last month
I had to retire from my job as a secretary because I was just too
exhausted to keep up.
Do you know how I can find out what happens to
children when they grow up? Is there any information on arthrogryposis
and aging? My doctor and physical therapist want to know, too.
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From The Medical
G. Wiltshire, M.D., F.R.C.S.(C).
175 Chemin Stillview Road, Suite 100
Canada, H9R 4S3
We had our first arthrogryposis clinic at the
Montreal Shriner’s Hospital last week. It was a fascinating
experience for all the staff and the patients certainly seem to
appreciate and benefit from it. We are looking forward to having
monthly clinic from now on.
D. Pizzutillo, M.D.
St. Christopher’s Hospital for Children
Erie Avenue at Front Street
Philadelphia, PA 19134-1095
As of July 1, 1995, Dr. Dean MacEwen, formerly
the Medical Director of the Alfred I. DuPont Institute and the Chief
of Orthopaedics of the New Orleans Hospital for Children and I have
relocated our practice to the Orthopaedic Center for Children at
St. Christopher’s Hospital for Children in Philadelphia, Pennsylvania.
Both Dr. MacEwen and I are pediatric orthopaedic surgeons who have
had substantial experience in dealing with children and adults with
arthrogryposis. The Orthopaedic Center for Children provides not
only orthopaedic evaluation and care, but is supported by Sue Boltz,
physical therapist, and Amy Levin, occupational therapist, the capability
for spinal bracing and splinting, seating service, as well as a
state-of-the-art gait laboratory. Our plans are to continue with
the care of this patient population and to expand our services.
Marshall Hospital Home Care
670 Placerville Drive, Suite 3C
Placerville, CA 95667
916-626-4960 or 916-626-8169
I am a P.T. who has recently begun working with
a youngster who has been diagnosed with distal arthrogryposis. Because
I have a lot of experience with geriatrics and my only work with
pediatrics was many years ago and only with one arthrogrypotic child,
I have been very happily challenged by working with this bright
and personable two-year-old.
Bryan has very stiff knees and probable vertical
talus in both feet. He has very high-riding scapulae, but his main
involvement of concern to me and his adoptive family is his congenital
kyphoscoliosis (high thoracic) with a lower thoracic lordosis. After
a long-awaited consultation with a scoliosis specialist, his parents
came away without a lot of information. I would, therefore, like
to help them gather some practical information regarding the prevalence
of scoliosis in arthrogryposis and the general management which
you as parents or professionals working with these children might
have to share with us. Does anyone have experience with bracing
these curves? How are they affected by growth, gravity, and has
therapy been effective in reducing or slowing their progression?
Has anyone tried massage of chiropracty? Any information would be
Bryan is very small and is developmentally on target
for his age except for those more demanding physical skills. He
has recently begun walking and is learning to get up from the floor
by pushing into an inverted-V but has difficulty with it due to
his stiff knees and limited shoulder range. it seems bracing at
this stage might hold him back physically, though his spunk and
enthusiasm could see him through! We were also wondering if anyone
has any suggestions for sit-on push toy to encourage use of his
Raynor, Ph.D., O.T.R.
The National Arts and Disability Center, UCLA UAP
300 UCLA Medical Plaza, Suite 3330
Los Angeles, CA 90024-6967
The National Arts and Disability Center (NADC)
is a federally funded project of the UCLA University Affiliated
Program. The NADC is a resource center which provides technical
assistance and training to promote the full inclusion of children
and adults with disabilities into the art community. Dissemination
of information and training is available to artists, families with
a child with a disability, the art community and community support
personnel. Information is available on art schools, centers and
programs; art and disability organizations and foundations; relevant
city, state and federal departments; assistive technology and software;
and full inclusion. We are interested in acquiring information about
the experiences of children when fully included in art programs
or classes. We would like descriptions of children’s successful
experiences as well as the obstacles faced when participating in
art programs or classes.
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