PFFDvsg
Guestbook - 1999
2000 1999
1998
1997
Visitor: Allison
Reference: duh!!!
Location: NAPL
WebSite:
Web Info:
Contact: aferranti@napl.org
Date: Thurs, Dec 30, 1999 at 12:08:47 (EST)
Comments: No comment at this time.....
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Visitor: Greg Adolphson
Reference: Mikey
Location: Ameritech
WebSite:
Web Info:
Contact: adolphsons@hotmail.com
Date: Wed, Dec 22, 1999 at 13:58:51 (EST)
Visitor: Sharon Leger
Reference: search engine yahoo
Location: Crockett, Tx
WebSite:
Web Info:
Contact: Sharon_Leger@Yahoo.com
Date: Sat, Nov 27, 1999 at 05:36:21 (EST)
Comments: No comment at this time.....
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Visitor: Jennifer Dockum
Reference: Previous visit
Location: Hanover, Virginia
WebSite:
Web Info:
Contact: jjadockum@cs.com
Date: Fri, Nov 19, 1999 at 17:53:53 (EST)
Comments: Hello everyone, it has been awhile. We have
a 10 month old daughter named Allie who has been diagnosed with PFFD. She
is being treated by Dr. Hertzenburg in Maryland. She was just recently fitted
with her first prosthesis, which really just looks like her second foot.
She is having trouble keeping it on her leg, even when we have it strapped
as tight as it will go. Did anyone else have this problem? She is scheduled
to have her first surgery this coming summer to fix her ankle and maybe get
some length out of her tibia, before her first lengthening. Thanks for this
website.
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Visitor: Cindy Hussey
Reference: Been here before
Location: Rhode Island
WebSite:
Web Info:
Contact: CindyLou1970@aol.com
Date: Fri, Nov 12, 1999 at 14:25:21 (EST)
Comments: Just dropping in to say hi. Haven't written
in a while. Branden's just over two now- 26 months to be exact. He is finally
starting to attempt walking. He's pulling up on all the furniture and is
trying to cruise, but not quite getting that yet. The other day he was standing
straight up from a sitting position on the couch. Every time he would to
that he fell right over. It was really fun watching his determination. Love
to hear from some of you guys once in a while. Hugs to all the kiddos Cindy
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Visitor: Carol Buffi
Reference:
Location: Utah
WebSite:
Web Info:
Contact: buffce@hotmail.com
Date: Fri, Nov 12, 1999 at 02:38:23 (EST)
Comments: My 5 yr old daughter will be having her first
legthening surgery with an Ilizarov device in about one week. I wish I had
found this Web site sooner. I need more info and advise on what to expect
and how to help my daughter.
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Visitor: Laura Johnson
Reference: browsing
Location: Madison, SD
WebSite:
Web Info:
Contact: Johnson5@hcpd.com
Date: Thurs, Nov 04, 1999 at 00:32:57 (EST)
Comments: Sorry, I apparently left off 1/2 my email address.
Anyways, after reading many of these entries, I am just, well, overwhelmed!
(I use the word a lot!) We just got back from our first visit with Dr. Paley
on Sept. 28. It was just so nice to be around other parents who have been
through this. I saw many children, a few even around the same age as our
18 month old, Hailey, who looked wonderful and HAPPY! I was told so many
horror stories by the Shriners that I was a little worried to say the least.
It's funny how I was so mad at God (?) for a while for doing this to my precious
baby, but now I thank him every day for giving me this wonderful person.
She has just taught us and everyone we know so much.
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Visitor: Laura Johnson
Reference:
Location: Madison, SD
WebSite:
Web Info:
Contact: johnson5.com
Date: Thurs, Nov 04, 1999 at 00:09:17 (EST)
Comments: Our 18 month old daughter has PFFD. It has
definitely been such an overwhelming experience, to say the least.
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Visitor: Sue Walker
Reference: nurses in hospital found you after Keagan's birth
Location: Junau, Alaska
WebSite:
Web Info:
Contact: eviesmom@aol.com
Date: Wed, Nov 03, 1999 at 17:13:36 (EST)
Comments: Here's an update on our son Keagan's progress.
He just turned one year old on Oct 17. He has unilateral PFFD, left leg,
either Aitkin A or B. Two weeks ago we had his x-rays taken and sent to Dr.
Hertzenberg at MLLC and are awaiting THE PLAN for his lengthenings. He's
now got a 5 to 6 cm difference, but is walking a few steps with the aid of
a 4cm shoe lift on his little Nike's - or rather - is walking a few steps
with or without his lift, which seems to make little difference to him. He
is also climbing at an astonishing rate! You see, it is easy to climb is
you only have to get your short leg up first, so the other day I found him
ON TOP of the dining room table, standing up and gabbling away so happy for
himself. We are continuing to be amazed at how well he is doing and how little
the PFFD affects him. Hopefully we soon will know whether he needs any surgery
to correct coxa vera or any psuedoarthrosis prior to lengthening, or if he
can have these defects (we don't know yet if he has these problems) corrected
at the same time as the first lengthening. There still is no sign of a patella
on the affected leg, which we are told isn't much of an issue. His knee
flexibility is great and the hip seems ok, perhaps mildly displastic, but
with a femoral head and acetabulum. We were especially happy to find that
our local ortho surgeon trained under Dr. Hertzenberg when he was a resident
- so they know each other, and we feeel this will improve communications
for this long-distance effort. Sue, Vic, Evelyn and Keagan Walker
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Visitor: Chuck, Karla, Dylan & McKenna
Reference: Divine Intervention
Location: Maple Grove, MN....USA
WebSite:
Web Info:
Contact: Grimbold@Aol.com
Date: Tuesday, Nov 02, 1999 at 23:52:44 (EST)
Comments: Dear Everyone, Hello from Minnesota!!!!!!!!!
Sorry we haven't written in a while, but when you have a 4 year old, and
a 2 year old, you become very old!!!!! Anyway, we just wanted to drop a note
telling you all how great McKenna is doing!!! We had both her hip, and thigh
bone repaired in May, and since then all has gone very well. Now McKenna
uses a new brace that has built in ankle, to help her to get used to using
hers. We have noticed that since the surgery she has much improved mobility,
and balance. One of the best parts was that before the surgery she couldn't
lift her shorter leg to her chest, as it was bent, and twisted backwards,
so forward movement wasn't possible. Now that we have had the bend and twist
fixed, she lifts both legs to her chest, and rolls around. McKenna is now
about 2.5 years old, and we plan to be in Baltimore to see Dr. Paley for
a checkup around some time in Feb. I cannot thank this website enough for
giving us the courage to do what the doctors here in Minnesota said wasn't
possible. Also, we want to thank all of you who have written, and called
to give us support durring the early days. We hope that thru our experiences
we can return the favor. Anyway, thanks so much to all of you, and God
Bless!!!!!!!!! Sincerely, Chuck, Karla, Dylan & McKenna
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Visitor: Tracey Arnold
Reference:
Location: PA.
WebSite:
Web Info:
Contact: arnoldin@hotmail.com
Date: Tuesday, Nov 02, 1999 at 07:34:55 (EST)
Comments: Thanks to everyone who has kept in touch! Our
son has just recently completed his Van Nes Rotation and is doing great.
He broke the (same) ankle a few weeks ago from a fall, but was up and rollin'
again in just two weeks. If anyone wants to talk about the Van Nes, just
drop me a line!
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Visitor: Peter Lindkvist
Reference:
Location: Roskilde - Denmark
WebSite:
Web Info:
Contact: pelind@post9.tele.dk
Date: Mon, Nov 01, 1999 at 17:03:22 (EST)
Comments: Hallo everyone! Here is a little update on
Christian (2.5 years). He is an active boy doing, what a boy at his age wants
to do. He has a platform prosthesis (the second one), and he plays football,
drives bicycle and try to run as fast as possible in the opposite direction
when we ask him to come. We have visited the university hospital several
times during the last 2 years and at the latest x-ray examination it seems,
that it is possible to do the lengthening on Christians leg. It is almost
clear that he has no patella, but the doctor is quite pleased anyway. Due
to a slow growth of his left femur and hip, the doctor adviced us to wait
some years with the first operation. We are planning a vacation in USA, so
maybe it will be a good idea to see Dr. Paley and ask for a second oppinion.
Time will show. Finally I will send a little regard to all the new parents.
Try to look forward and enjoy your children. For us it has been a big joy
to see our christian grow, to see how a little human being is growing forward
and it is no longer the leg that fills it all. It becomes daily life that
he says Dad - leg on or bare foot. For him it is just so - and no question
is asked. We send the best whishes from Christian, Sofie, Emilie Hanne and
Peter
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Visitor: Lori Young
Reference: Internet search
Location: Glasston, ND
WebSite:
Web Info:
Contact: ljyoung@polarcomm.com
Date: Sat, Oct 30, 1999 at 02:12:00 (EDT)
Comments: Wonderful site with much information. When
my daughter was born 8 years ago, she was given term caudal regression. It
wasn't until the past year or so that PFFD was used in regard to her. She
is uni-lateral on the left side. Her natural foot is at about knee level
compared to her right. She has adapted very well to this, and now has a bendy
leg for the left side. (they were able to put in a knee between her natural
foot and her prosthetic one) She recently got out of a spica cast from having
a Salter osteotomy done on her right hip, so she is just learning to walk
again. She is doing very well, considering the only muscles she moved for
6 weeks were in her arms and neck.
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Visitor: Pat Larabee
Reference: searched pffd
Location: Buxton, Maine
WebSite:
Web Info:
Contact: plarabee@webtv.net
Date: Sun, Oct 17, 1999 at 16:08:19 (EDT)
Comments: Hi Our daughter was born prematurely in Nov
1996. She was born with what was diagnosed as a dislocated hip and club foot,
both on the left side. She had to have surgery to put her hip back in joint
at 9 months of age. She also had to have tendon lengthening done at 11 months
of age to correct the club foot. We have been going on with these diagnoses
for over two years. I have not been comfortable with the doctors diagnoses.
There seems to be too many other factors going on. Upon pressuring him he
took a standing x-ray of her legs and determined that she might have PFFD
due to the fact that the left fibula is bowed and much shorter than the tibia.
There does not appear to be a true leg length discrepancy by x-ray but she
walks with a short leg limp. He just wants to wait and see how she progresses
before giving us any surgical options. He is suggesting waiting until she
is 5 or 6 years old before doing a leg lengthening procedure. Have other
people fallen into this type of problem with their children and if so, do
you agree with the wait and see attitude or should we seek someone willing
to do more aggressive treatment? Thanks for any feedback you can give us.
We really apprciate it.
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Visitor: Stephen & Gail Jennings
Reference: surfing the net
Location: Napier, New Zealand
WebSite:
Web Info:
Contact: fergusonunited3@atlasmail.com
Date: Sat, Oct 16, 1999 at 04:25:51 (EDT)
Comments: We have a 3 year old son Tyler with PFFD and
Ulna Hemimelia (Upper limb deformaties) affecting both arms. We have had
a Symes Amputation done when he was 2 & 1/2 years old. Tyler is doing
really well. He got his first prosthesis at 6 months old, and was walking
at 21 months. We hope one day to get a leg with a knee joint that bends.
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Visitor: Mary Lou LaVallee
Reference: searched under pffd in yahoo
Location: Saskatchewan Canada
WebSite:
Web Info:
Contact: lavallee_m_lou@hotmail.com
Date: Fri, Oct 01, 1999 at 13:53:47 (EDT)
Comments: I would just like to talk with any other parent
of a child with pffd. I have been searching for a web page for parents of
pffd children. My daughter is 13 yrs. and we have yet to meet ANYONE (Especially
children) with pffd.
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Visitor: Donna Fowler
Reference:
Location: Iowa
WebSite:
Web Info:
Contact: fowler@ncn.net
Date: Thurs, Sep 23, 1999 at 23:20:30 (EDT)
Comments: Hi again! It's been a while since I've visited
the page. Thomas will be 6 months old next week. He's had 2 evals at one
hospital and a second opinion at a second hospital. We agree with the doctors
that lengthening is not an option and have chosen to go with the amputation
of his foot now and continue to watch the development of his hip. (Besides
the congenital short femur, he has a clubbed foot twisted behind him, and
fibular hemomelia of the right leg. He also has some minor deformity of his
left foot.)His first surgery should be within the next few months. In the
meantime, he has surpassed his twin sister in size and several stages of
development. His sister does not have PFFD. I'm curious if there are any
other cases of natural twins (or multiples) in which only one child has PFFD.?
Thank you to everyone for this wonderful site!!
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Visitor: Rita and baby Angel
Reference: Yahoo
Location: Southern California
WebSite:
Web Info:
Contact: raiono@aol.com or raiono@brighton.com
Date: Thurs, Sep 16, 1999 at 01:39:46 (EDT)
Comments: My daughter 'Angel' was born with PFFD about
2 1/2 months ago. I just found your website last week and I am amazed at
all the stories I have read. Reading the stories has definately given me
the strength and courage that I will need to help my daughter thru her trials
and tribulations that lie ahead of her. To date, she has not been treated,
still getting other opinions. We too, were told that amputation would be
the best for her. Because of your stories, I feel ok knowing that it is alright
to wait and take our time with our decisions. Thank you for sharing your
stories, it has definately put hope in hearts for our little 'Angel'. I will
stay in touch and keep you updated with her treatments an progress.
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Visitor: Michelle Ann Ewer
Reference: My doctor told me about it.
Location: Hamilton, Ontario, Canada
WebSite:
Web Info:
Contact:
Date: Tuesday, Sep 07, 1999 at 16:14:29 (EDT)
Comments: I'm really glad I found you. None of the doctors
here never really talked to me about PFFD. I never knew or had any clue on
how many peaple that have this complicated, confusing and challaging life
as I do. You have givin' me a new look on things, before I thought I was
alone. I was scared of what would happen if the bone that I'm walking on
breaks down and I won't be able to walk on any more. I know that will destroy
me if it does happen. I wanted to know if there was anything that I could
do (meaning some kind of surgury). Now I know I have a chance to SOME-WHAT
IMPROVE my style of living, improve on my self-confidence and glow with
self-esteem. !!!THANK YOU!!!! Just incase you're wondering, I'm 21. I have
blond hair, blue eyes, I'm 5 foot,I have an artificial leg and I have PFFD.
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Visitor: Ron Pierce
Reference: Referred by a friend.
Location: New York
WebSite:
Web Info:
Contact: RPierce77@aol.com
Date: Thurs, Sep 02, 1999 at 21:37:45 (EDT)
Comments: No comment at this time.....
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Visitor: pavongchitr
Reference: find out from yahoo
Location: Bangkok of Thailand
WebSite:
Web Info:
Contact: pavongchitr@yahoo.com
Date: Tuesday, Aug 31, 1999 at 10:57:37 (EDT)
Comments: i just looking for one of my friend Nigel de
Ferranti from England your web. is very interesting and i like it very much.
Thanks. Pavongchitr
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Visitor: Ruth Levine
Reference: regular visitor
Location: Baltimore, MD
WebSite:
Web Info:
Contact: rlevine1@att.net
Date: Sun, Aug 22, 1999 at 20:24:11 (EDT)
Comments: Here's an update on our daughter, Sarah, now
nearly two and a half, who has unilateral PFFD with a large differential
and fibular hemimelia. She just had a pelvic osteotomy and related surgery
at the Maryland Center for Limb Lengthening and Reconstruction, and is doing
extremely well in her spica cast. We are hoping to start lengthening in a
year or so. We'd be delighted to be in touch with other parents at various
points in the journey.
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Visitor: DeNita Dean
Reference: surfing the net
Location: Pittsburgh, PA
WebSite:
Web Info:
Contact: DeNita@Gateway.Net
Date: Tuesday, Aug 10, 1999 at 18:58:38 (EDT)
Comments: I have a 13 month old son with pffd class D,
he has no hip joint and very short femur and a missing fibula. He is scheduled
to have a supramalleolar osteotomy in Oct, then have the Van Ness procedure
done when he is 2. Dr. Paley in Baltimore will be doing the surgery. Any
information about the Van Ness Rotationplasty would be helpful. Has any one
had the prosthesis that looks like there are two feet on one leg, if so what
kind of clothes (pants) did your child wear. Please anyone email me with
any information.
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Visitor: Ken Meyer
Reference:
Location: Columbus, Mississippi
WebSite:
Web Info:
Contact: KMJ9@crawdat.com
Date: Sun, Aug 08, 1999 at 11:45:20 (EDT)
Comments: Son with PFFD. Recently seen by Dr. Hertzenburg.
Thanks for all the help and information.
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Visitor: Linda White
Reference: Infoseek
Location: Ohio
WebSite:
Web Info:
Contact: Raintree1@webtv.net
Date: Fri, Jul 30, 1999 at 11:48:53 (EDT)
Comments: I am currently wearing an ilizarov for a second
time. I am 28 years old and had my left leg lengthened in 1995. I wore my
ilizarov for 11 months. I do not have PFFD, no one has ever been able to
pin point a name for my problem. Now I am haveing my ankle fused. If I can
be of help to anyone feel free to email me. I do not have PFFD, but I am
an ilizarov patient and I know what you are all going through. Keep your
chins up, Linda
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Visitor: Sue Gawler
Reference: referred by a friend
Location: Maine
WebSite:
Web Info:
Contact: susan.gawler@gte.net
Date: Wed, Jul 28, 1999 at 11:19:49 (EDT)
Comments: thank you for this site. Our daughter has
unilateral PFFD, class A but with a large discrepancy. We are preparing for
lengthening via Ilizarov process starting in late Sep. The connections to
other parents here are most helpful. One suggestion - the article describing
PFFD is way out of date in the Lengthening section. Although the author tacks
on a note at the end of that section, he should really rewrite the whole
thing to be much less misleading. The scary things that make up most of that
section are based on a different and outdated lengthening procedure. It would
be a service to readers to correct this.
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Visitor: Joann Bilek
Reference:
Location: Michigan
WebSite:
Web Info:
Contact: joann_bilek@spartanstores.com
Date: Tuesday, Jul 20, 1999 at 17:28:49 (EDT)
Comments: Hello everyone. It's been a little while since
I've checked the guest book, though I've had a number of you contact me about
Van Nes and Jamie's story. Just wanted to post a note to let you know I'm
still around and looking for people to help. A message to Lee, who didn't
leave an e-mail address, take a good look at all your options. If you can
have the lengthening done, it's a great option as far as the outcome is
concerned. My niece had the Van Nes Rotation done because lengthening was
not an option for her. She is doing fine. She is walking well with her ankle
as a knee. She bends it when she walks and it boggles the mind how she can
do it, but little kids are such troopers and quick learners that nothing
seems to stop her from doing what she wants. She jumps on a trampoline, swings
herself, climbs. You name it, she'll try it and she's not even 4 years old
yet. A message to Rick. I'll try to contact you sometime this week to discuss
our experience with the Van Nes. It's not nearly as bad as it sounds. I'm
finding that there are more PFFD kids out there than we thought at first
and they all have different options available to them. It's best to rule
out all but the best for your situation, so I would suggest consulting on
all the options. Everyone take care. I promised Mike that I would get Jamie's
page finished soon. Be on the look out.
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Visitor: Lee Bennett
Reference: YAHOO!
Location: Kentucky
WebSite:
Web Info:
Contact:
Date: Sat, Jul 17, 1999 at 20:14:40 (EDT)
Comments: Hi. I am a 13 year old who has PFFD. I was
born with PFFD in my right leg and my right leg has always been shorter than
my left. Anyway, I am going to Baltimore, Maryland to see Doctor Paley for
an evaluation. I have also had the leg lengthining surgery as well as the
brace called the Illo....Illo..... it's Illo something. My leg is bent at
an an angle and I have trouble straighting it. I need help. Should I A. Have
my leg fused, B. Take the Van-Ness, or C. Try to have my leg fixed by Doctor
Paley. Thanx for your time
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Visitor: Rick Rhoton
Reference:
Location: Bullhead AZ
WebSite:
Web Info:
Contact: reslrranch@hotmail.com
Date: Tuesday, Jul 06, 1999 at 17:35:22 (EDT)
Comments: Well we went and saw the Shriners talked with
Dr.Armstrong, he knows Dr. Paley and suggested that if we wanted to, to go
talk with Dr.Paley. We are still leaning toward the lengthening but we feel
much better about the Van Ness now. Has anyone out there had this procedure
done? If you have can you let me know how yours is doing, please?
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Visitor: Richard Rhoton
Reference: searching for info on PFFD
Location: Bullhead City AZ
WebSite:
Web Info:
Contact: reslrranch@hotmail.com
Date: Thurs, Jun 03, 1999 at 14:12:49 (EDT)
Comments: I know that I have already made an entry today
but I wanted to make another entry after reading some of the other entries
in the guest log. Sam has Type A, I think. We have been to se the Shriners
in Salt Lake City UT and they are very hopfull that they can fix his leg.
They gave us some tough options and we would like some of your input please.
They want to fix the angle of the hip first, and then either lengthen the
leg over several years, amputate the foot and fuse the knee and then he would
wear a prosthesis, or turn the ankle around to be the knee and again fuse
the current knee to be the femur. His feet are perfect and his legs are
symetrical from the knee down. We think that we are going with the first
option but we hate to make the wrong decsion can anyone out there help?
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Visitor: Richard Rhoton
Reference: searching for info on PFFD
Location: Bullhead City AZ
WebSite:
Web Info:
Contact: reslrranch@hotmail.com
Date: Thurs, Jun 03, 1999 at 13:49:30 (EDT)
Comments: My son Sam was born with PFFD adn we were given
some tough options by the doctors. can anyone help?
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Visitor: Chuck, Karla, Dylan & McKenna
Reference: Divine Intervention...
Location: Maple Grove, MN
WebSite:
Web Info:
Contact: Grimbold@AOL.Com
Date: Sun, May 16, 1999 at 12:11:16 (EDT)
Comments: Dear Readers, Howdy everyone!!! We just returned
from seeing Dr. Paley for our first surgery, and all went very well!!! They
used a newer technique to repair the Bend, and also combined that surgery
with a hip repair that will later make lengthening possible. They didn't
use the scaffolding this time, but put a rod inside the thigh bone to keep
it in-line, so no external pins!!!!We will keep you all posted on our progress,
but so far things are going better than expected. Good luck, and God Bless!!!
Sincerely, Chuck, Karla, Dylan & McKenna
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Visitor: Donna Fowler
Reference: internet search
Location: Iowa
WebSite:
Web Info:
Contact: fowler@ncn.net
Date: Sat, May 15, 1999 at 17:03:15 (EDT)
Comments: I have a six-week old son with PFFD. We had
his first evaluation yesterday and will wait several months for another eval;
lengthening is likely not an option. We would like info from individuals
who have gone to Shriners in Minneapolis, Gillette Childrens Hospital in
St. Paul, and/or University of Iowa Hospitals and Clinics. Our insurance
company is trying to limit where we get him treated. Also would like to network
with parents from Northern Iowa or southern Minnesota. Thanks for the helpful
web page!!
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Visitor: Robyn Riley
Reference:
Location: New Jersey
WebSite:
Web Info:
Contact: Robyn72@aol.com
Date: Sat, May 15, 1999 at 15:30:59 (EDT)
Comments: My husband and I have just started down the
long road, we just found out our unborn child whom is due Oct 11 1999, has
pffd, we are going to see a specialist in Philly this Fri. I am looking all
over for as much info as i can get my hands on. Plus looking to talk with
parents who can relate to the fears and questions both my husband and I have.
In the past week I feel like I have aged 20 years. I am thankful she is healthy,
but still quite upset there is a problem. After 2 years of trying to get
pregnant, we were blessed with a positive ept test. But were saddened to
hear the news the other day of pffd. If anyone I am still not sure what some
optins are yet, we will find out this week. But I would like to be prepared
with some knowledge, if anyone has any info, or know of any books for us
to read please send some email. Plus I would love to talk with someone, who
can understand my fears, and just relate to what we are going with. Thank
you all.
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Visitor: Robyn & Chris Riley
Reference:
Location:
WebSite:
Web Info:
Contact:
Date: Sat, May 15, 1999 at 12:32:24 (EDT)
Comments: No comment at this time.....
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Visitor: Tonya Kliewer
Reference: Searched Internet
Location: Benton, Arkansas
WebSite:
Web Info:
Contact: KHenson@aol.com
Date: Wed, May 12, 1999 at 22:34:05 (EDT)
Comments: No comment at this time.....
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Visitor: Todd, Michelle and Liam Hickey
Reference:
Location: Edmonton, Alberta, Canada
WebSite:
Web Info:
Contact: todd.hickey@savillemail.com
Date: Mon, May 03, 1999 at 00:20:15 (EDT)
Comments: Hi to everyone. Just visiting the PFFD site
for the first time in a long time. Our son Liam was born last Mar (3/25/1998)
with uni-lateral PFFD of the right leg. To improve the medical options available
to our son (and for other reasons) we have moved from the east coast of Canada
(Newfoundland to be exact) to Edmonton, Alberta as of Feb 3 of this year.
My new e-mail address is todd.hickey@savillemail.com for those I was in contact
with before and most certainly anyone new! As always, the great information
from the fantastic people using this page keeps on growing. BTW, Liam now
has his platform prosthesis and we are introducing it slowly to him. He has
been navigating the furniture since about 8 months of age and sometimes finds
the extension to be in his way, but I'm sure that he'll do fine, being the
trooper that he is. We'd love to hear from parents (and kids) who have gone
through this stage before deciding the best path to choose. God bless!
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Visitor: Jane Curto
Reference: looking for information re: PFFD
Location: Easton, Pa
WebSite:
Web Info:
Contact: jmc2@fast.net
Date: Tuesday, Apr 27, 1999 at 15:59:06 (EDT)
Comments: My son Lamaer was born with PFFD in 1976. It
has been a long road. He is 23 now and has had one lenghtening done by Dr.
Paley. He does not want to have this procedure done again. He is back to
wearing the prostheses. He gets around fairly well, however, is currently
have pain in his foot. Anyone know of any good orthopaedic surgeons in the
eastern PA area that follow this problem. He did go to Shriners in Philadelphia,
but he is too old now. Don't know if we should continue to see Dr. Paley
because he does not want lengthening. Any information would be helpful. Good
Bless.
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Visitor: Chuck, Karla, Dylan, & McKenna
Reference: Divine Intervention
Location: Maple Grove, MN
WebSite:
Web Info:
Contact: Grimbold@AOL.Com
Date: Tuesday, Apr 20, 1999 at 19:38:40 (EDT)
Comments: Hello Everyone, We want to thank you all for
your support!!! McKenna is going in for her first surgery on May 04, 1999.
We will keep you posted on how things go. Wish us luck!!! Sincerely, Chuck,
Karla, Dylan & McKenna
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Visitor: Chuck, Karla, Dylan, & McKenna
Reference: Divine Intervention
Location: Maple Grove, MN
WebSite:
Web Info:
Contact: Grimbold@AOL.Com
Date: Tuesday, Apr 20, 1999 at 19:37:06 (EDT)
Comments: No comment at this time.....
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Visitor: Joann Bilek
Reference: search for pffd
Location: Battle Creek, Michigan
WebSite:
Web Info:
Contact: joann_bilek@spartanstores.com
Date: Thurs, Apr 15, 1999 at 17:42:01 (EDT)
Comments: Hi guys. Thought I'd give a quick update on
Jamie since I haven't had a chance to update her page since her surgery.
She's walking around great on her new bending knee prosthesis, but hasn't
quite figured out that she can bend it like her other leg. She still walks
stiff legged, the way she learned to walk. She knows how to bend it and does
really well when she's jumping on the trampoline. She just doesn't realize
it'll bend just as good when she's walking. The scar healed nicely(as good
as a 12 scar can look), and quite honestly, the foot being backwards doesn't
phase her or anyone who knows and loves her. To all of us, this is normal,
for Jamie. Well, I'll get working on finishing Jamie's page and give more
details, but for now, I wanted to let everyone know that Jamie's doing great.
She's a real trooper.
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Visitor: Mims and Rebeccah Adams
Reference:
Location: Alabama
WebSite:
Web Info:
Contact: cadams@mindspring.com
Date: Wed, Apr 14, 1999 at 10:29:02 (EDT)
Comments: It has been a long time since I sent an update
on Rebeccah! She is doing great (finally)! She has been in a spica cast the
last month and we are scheduled for removal next Mon. She is praying that
she will have a built up shoe for the first time in her life since she is
6 inches off the ground now. She has worn prosthetic devices up til now.She
had problems with the bone healing so this lengthening took 13 months from
beginning until end and we only gained 4 inches instead of the 6 we hoped
for but what a miracle 4 inches is! We are all looking forward to the break
between lengthenings but Im sure by next spring we will be ready to move
on. I have really enjoyed all the email from Rebeccahs story and appreciate
being able to pass on all we have learned through this experience. I promise
to be better at keeping in touch! Mims and Rebeccah
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Visitor: Beth Anne Simpson
Reference:
Location: Burleson, Texas
WebSite:
Web Info:
Contact: BBLMS@aol.com
Date: Mon, Apr 12, 1999 at 23:06:09 (EDT)
Comments: Hello everyone, I thought that I would update
you all on Michelle's progress. She is starting to run a little bit on her
new Van-Ness prothesis !!!!!!! yea...... Thanks for your support.... Beth
Anne... P.S. To the lady in Crowley that I spoke with at the ball game, I
hope you found our page and It's helpfull.... Email me anytime.....
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Visitor: GINETTE
Reference:
Location: ENGLAND
WebSite:
Web Info:
Contact: Teppu@tmarlow.swinternet.co.uk
Date: Sat, Apr 10, 1999 at 11:47:19 (EDT)
Comments: HAS ANYONE GOT ANY INFORMATION REGARDING THE
ALBIZZIA NAIL USED AS A METHOD OF LENGTHENING IN TREATING PFFD
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Visitor: Jesse Bennett
Reference: Search Engine
Location: Louisville, Ky
WebSite:
Web Info:
Contact: jhb@iglou.com
Date: Thurs, Apr 08, 1999 at 22:38:34 (EDT)
Comments: Courious about options that are open for my
thirteen year old son who has had the leg lenghting done but now has another
doctor who wants to do the van ness rotation plasty. Would like to hear from
other people who has or are being faced with this delimena.
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Visitor: Brittany
Reference: email from Stephen Ferranti
Location:
WebSite:
Web Info:
Contact: bpaige88@hotmail.com
Date: Wed, Apr 07, 1999 at 22:45:38 (EDT)
Visitor: Chuck
Reference:
Location:
WebSite:
Web Info:
Contact:
Date: Tuesday, Apr 06, 1999 at 22:40:10 (EDT)
Comments: No comment at this time.....
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Visitor: Delia Tavares
Reference: Did a search for Limb lengthening
Location: Toronto, Canada
WebSite:
Web Info:
Contact: d.tavares@oecta.edu.on.ca
Date: Tuesday, Mar 30, 1999 at 16:31:36 (EST)
Comments: I have been visiting your site for about a
year now. I would like to say thank you for all the information and help
this site has given me. I have met wonderful people through here that have
listened to me in happy and sad times. My Son Connor will be 5 years old
next month and he had his first lengthening a year ago. Cause of this site
I got to talk to others in the same situation and whom understood all my
fears. It really helped me to get ready for the surgery and now it gives
me hope when I hear from all of you. Connor had 5 surgeries in 5 months cause
of so many complications occured during the lengthening. The outcome was
not what we hoped for him, but, we should be happy that he gained 5 cm. He
is now at approx. 6 cm difference and wears a leg brace and shoe lift. I
find that his leg looks worse now ...... but, the important thing is that
he walks, runs and is HAPPY. Please feel free to contact me if you have any
questions or just need someone to talk to. All the best to all and God Bless.
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Visitor: Brian Day
Reference:
Location: Raleigh, NC
WebSite:
Web Info:
Contact: brian.day@pobox.com
Date: Thurs, Mar 25, 1999 at 23:50:57 (EST)
Comments: Erin has bilateral PFFD and is 2&3/4 years
old. Her right leg has no femur and her left leg's fermur is incorrectly
angled such that she is in a squatting position when standing. She is scheduled
for surgery on 4/21 to break and pin her femur so that full extension is
posible. Soft tissue release will be done in the hip and knee areas. Dr.
Dror Paley will be doing the surgery in Baltimore. After email requests for
clarification, he explained that he will decide whether to use Ilizarov or
internal pin (for realignment of the femur) during the surgery. She will
be in a 'spica' cast for 6-10 weeks. Dr. Paley says that P.T. will not be
necessary. Does anyone have experience with this sort of femur realignment?
Specifically, we are concerned with how soon she will be able to walk again
(muscle growth, proprioception...). We would like her to start preschool
in Jul (need to commit a downpayment) but are not sure she will be mobile
and re-potty trained by then. Thanks, Brian & Terry Day Brian.Day@pobox.com
919 556-7129
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Visitor: aunt lisa
Reference:
Location: litchfield
WebSite:
Web Info:
Contact:
Date: Sat, Mar 13, 1999 at 12:03:43 (EST)
Comments: keep up the good work! we lovw you!
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Visitor: Beth Anne Simpson
Reference:
Location: Burleson, Texas
WebSite:
Web Info:
Contact: BBLMS@aol.com
Date: Wed, Mar 03, 1999 at 21:50:55 (EST)
Comments: Hello everyone. Michelle's cast came off yesterday,
and her leg went on... She took off, and is doing well, Beth Anne
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Visitor: Tricia
Reference:
Location: Texas
WebSite:
Web Info:
Contact: jvaglica@aol.com
Date: Wed, Mar 03, 1999 at 17:56:36 (EST)
Comments: Son Jared born 4/91,pffd left leg,between type
c and d.Had symes amputation at 9 months.Was in prosthesis by 11 months and
walking by 20 months. At six years had surgery to fuse knee to pelvis to
act as a hip joint. Does wonderful!!! Swims, rides bikes, roller blades,
etc.Very pleased with foot and ankle amputation.We are getting new prosthesis
tomorrow from Texas scottish rite hospital that is multi- colored. How exciting!!
Hope I can help any new families that are just taking all of this on.
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Visitor: jean berry
Reference: My sone, Michael berry, found your site just last week.
Location: bloomsburg PA
WebSite:
Web Info:
Contact: jberry@husky.bloomu.edu
Date: Wed, Mar 03, 1999 at 16:25:30 (EST)
Comments: I just read the right answer about Adam. I
could identify with so many points in her story that I wrote to her just
now. I'm urging my son to write to your website (I know he did an e-mail
last week) to tell his story. He was 23 years old when we found Dr. Paly
and I think his story would give other older children and adults some hope
or options. His e-mail is mikedb@enter.net
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Visitor: suzanne
Reference:
Location:
WebSite:
Web Info:
Contact:
Date: Sat, Feb 27, 1999 at 06:52:57 (EST)
Comments: No comment at this time.....
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Visitor: Beth Anne Simpson
Reference:
Location: Burleson, Texas
WebSite:
Web Info:
Contact: bblms@aol.com
Date: Thurs, Feb 25, 1999 at 21:19:23 (EST)
Comments: Hello everyone, I just wanted to update you
all about Michelle. As you may know she had the van-nes surgery last Jul.
She was doing great until she fractured her little leg just above the ankle.
She should get her cast off this comming Mon........... Love, Beth Anne p.s.
Hey John, I hope you found this website!!!!
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Visitor: Tom & Dawn Rause
Reference: email correction
Location: Raleigh, NC
WebSite:
Web Info:
Contact: rause@flash.net
Date: Tuesday, Feb 23, 1999 at 21:22:31 (EST)
Comments: oops! this is our correct email address!
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Visitor: Dawn & Tom Rause (Jesse Rause)
Reference: Bookmark for PFFD
Location: Raleigh, NC
WebSite:
Web Info:
Contact: trause@flash.net
Date: Tuesday, Feb 23, 1999 at 15:45:44 (EST)
Comments: We signed the guestbook almost 2 years ago
when we first found the website - what a thrill to finally find some info.
about pffd. Our son Jesse is 3 1/2 and has pffd in his left leg. He is getting
ready for his first lengthening surgery with Dr. Paley in Mar. We are very
excited and anxious at the same time. Jesse had a femur osteotomy to reposition
his hip/femur when he was 18 months old and we've been waiting for everything
to heal and be ready for the first lengthening. He is walking with an almost
5 inch shoe lift right now. He hops everywhere (he hates wearing his big
shoe and brace). Right now he wants more than anything to ride a big bike.
We have 4 children under age 8, so life is always crazy around here, but
it sure gives Jesse plenty of inspiration. We have met others with pffd and
know that the only way to get through all that is ahead is with the love,
guidance and moral support from others and lots of faith! Right now our biggest
challenges are how to juggle our family, how long to stay in Baltimore, is
it necessary to stay in Baltimore for therapy and what's best for Jesse.
We'd love to hear from anyone just starting down the pffd road or an experienced
veteran of pffd.
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Visitor: Ginette Mckenzie
Reference:
Location: ENGLAND
WebSite:
Web Info:
Contact: Teppu@tmarlow.swinternet.co.uk
Date: Sat, Feb 20, 1999 at 07:29:30 (EST)
Comments: My son Michael has pffd I would like to speak
to anyone who has experience of a lenghtening of more than eight inches.
Michaels right foot is level with his left knee does anyone know if a lengthening
to this extent is possible ? Michael is 6 months old Thank you Ginette
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Visitor: SARA GIBBS
Reference: TYPED IN PFFD
Location: BUFFALO NY
WebSite:
Web Info:
Contact: THEGIBBS@HOTMAIL.COM
Date: Thurs, Feb 18, 1999 at 10:31:02 (EST)
Comments: I WOULD LOVE TO GET IN TOUCH WITH OTHER FAMILIES
WITH A CHILD WHO HAS PFFD. MY DAUGHTER HAS PFFD AND IS GOING TO HAVE HER
FIRST LENGTHING NEXT MONTH!!!!!!!!!!! VERY NERVOUS.
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Visitor: Mary Clark [Mary Williams Clark MD]
Reference: via I-CAN list
Location: Toledo OH
WebSite:
Web Info:
Contact: mclark@mco.edu
Date: Sun, Feb 14, 1999 at 20:06:37 (EST)
Comments: Thanks for putting my piece from In Motion
onto your info page! I hope people find it helpful. I have read a good deal
of the rest of your 'place' and think you've done a great job. I'll refer
my patients to you. I do think perhaps someone could write about the
non-limb-lengthening approaches to PFFD. They aren't as antiquated as they
have been made to sound, and perhaps an explanation about the mechanical
problems PFFD poses [especially in some of it types] and the reasoning behind
the reconstruction that includes amputation or rotationplasty would help
people understand why some orthopedists do consider and recommend these options.
(I'm not necessarily suggesting I should do this, as my experience on I-CAN
has been that terrific explanations very often come from parents or mentors
on the list.) Anyway, very nice site--congratulations! mary clark
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Visitor: Melissa Arnold
Reference:
Location: Baltimore
WebSite:
Web Info:
Contact: inch-by-inch@juno.com
Date: Sun, Feb 14, 1999 at 12:44:10 (EST)
Comments: Hi everyone! I just stopped by to see what's
new and to say hello. I don't get any time to write, but I wanted to let
you know everything is going great. We're ready to schedule surgery to remove
Adam's Ilizarov. Then it's two months in a cast and 6 months to a year of
therapy. Then we're done for awhile. Finally we'll have a stretch of time
when we have nothing medical happening. That'll be strange! Hope everything
is going well for all of you. We think of each of you often! Peace to you,
Melissa....Adam's Momma
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Visitor: Vicki Davis
Reference: Bookmark after my husband searched the web.
Location: Herreid, South Dakota
WebSite:
Web Info:
Contact: prcdrcus@valleytel.net
Date: Thurs, Feb 11, 1999 at 23:15:12 (EST)
Comments: I am writing tonight mainly to correct the
spelling of my name. I mis-spelled it on my message on Jan. 22, 1999. It
should be DAVIS, not DAIS. I check the guestbook at least once a week. I
like reading the new messages to see if there are any that I can send a note
of encouragement or help to. Someday I hope to write Ben's whole story. But
our life if quite full with homeschooling Ben, who is 9, and Hannah, who
is 7, and also having to keep Sarah entertained. She is almost 5 and will
be added to our school next year. As I said, Ben is 9 years old and has PFFD
on his right leg. His discrepancy at last measurement was 8.2 cm. He uses
a shoe lift and has since he was standing as a baby. He also alternates that
with a over-the-leg prosthesis. He has had 2 surgeries within the last 16
months. The first to correct the curvature in the bone and rotate it forward.
The second to remove the metal after the bone was healed. Both were done
successfully and with no complications at Shriner's Hospital in Minneapolis,
Minnesota. We are anticipating his first lengthening within the next 2 years.
They will lengthen 5 cm., allow that to heal for about a year, and then lengthen
another max. of 5 cm. If needed, they will slow growth on the left leg. They
have discussed amputation with us, but we don't think that is feasible (neither
does Ben). The doctor is concerned that too much lengthening could cause
joint (knee) problems and weaken the bone. As our doctor said, I have to
look myself in the mirror, and I would not want to cause anymore damage than
is already there. I respect her views and opinions. We will take a surgery
at a time. Talk to you at a later date. Please feel free to contact us with
any questions or just to chat. Remember that God loves you and your children.
We would never be able to get through all of this without that knowledge
and faith in Him. Take care.
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Visitor: Frank Gratke
Reference:
Location:
WebSite:
Web Info:
Contact: Gratke@execpc.com
Date: Thurs, Feb 11, 1999 at 11:23:59 (EST)
Comments: corrected email address
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Visitor: frank gratke
Reference: kevin born 5-5-92 PFFD aiken class d right
Location: Milwaukee,WI
WebSite:
Web Info:
Contact: gratke.execpc.com
Date: Thurs, Feb 11, 1999 at 11:21:13 (EST)
Comments: Kevin, born 5-5-92, aiken class D, Right LEG,Have
decided to wait and see. Have x-rays at Paley's, Shirners, Childreds and
John Hopkins.Believe bone growth stimulators will be the solution.Makes for
a lot easier healing. Believe with there advance the hip,leg and knee can
be made close to normal. Kevin makes school with a brace now!
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Visitor: Gineete McKenzie
Reference:
Location: www.charitynet.org/~limbassoc
WebSite:
Web Info:
Contact: teppu@tmarlow.swinternet.co.uk
Date: Wed, Feb 10, 1999 at 21:37:02 (EST)
Comments: Ginette has said that all the information you
have kindly sent her so far has been a great help, and she thanks you for
all your support. Ginette is hoping to also contact people in the UK, who
have experience of PFFD. (signed by Gary at Limbless Assoc for Ginette)
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Visitor: Christy Horton
Reference: searching web @ pffd
Location: Edwardsville, IL
WebSite:
Web Info:
Contact: dch@iw.edwpub.com
Date: Tuesday, Feb 09, 1999 at 12:08:57 (EST)
Comments: This is a great idea I plan to check regularly
for new stories! My daughter was born with pffd to her left leg. It is good
to know we're not alone.
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Visitor: Ginette McKenzie
Reference:
Location: UK
WebSite:
Web Info:
Contact: Teppu@tmarlow.swinternet.co.uk
Date: Thurs, Feb 04, 1999 at 21:54:48 (EST)
Comments: RE: Michael, aged 6 months My Son Michael has
been born with severe Proximal Focal Femoral Deficiency (PFFD), the suggested
treatment is amputation. Michael’s right thigh is almost missing, his
right knee is level with his left hip and his right foot is level with his
left knee. I would really like to contact anyone who has been born with the
same condition - of any age who would be happy to share their experiences
with me and offer practical advice. I feel this would help Michael and I
greatly. Ginette McKenzie
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Visitor: Jennifer Dockum
Reference: searched for you
Location: Statesville, N.C.
WebSite:
Web Info:
Contact: jjdockum@i-america.net
Date: Thurs, Feb 04, 1999 at 10:53:34 (EST)
Comments: We gave birth to a daughter, Allie, born 1/11/99
with PFFD. We are trying to find all the information we can to help her.
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Visitor: Krystine Hilton (Dylon's Momma)
Reference: been here plenty of times before
Location: New York
WebSite:
Web Info:
Contact: hiltonk@hartwick.edu
Date: Sat, Jan 30, 1999 at 00:44:26 (EST)
Comments: Just a quick note very appropriate thought,
it was a year ago today that Dylon started his first lenghthening at Children's
Hospital in Philadelphia. It was a long year but it already seems so long
ago we are pretty much all better. We thought we would check on some of our
friends since we are doing so well. The wounds have all healed and we are
running around quite well again. I hope all is well with all of you especially
the many friends we have made before. Dylon is a true test that these children
really do bounce back. Other than some stiffness in the morning or in the
night he is back to his old self. Talk to you all soon.
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Visitor: Vicki Dais
Reference: PFFDvsg
Location: Herreid, South Dakota
WebSite:
Web Info:
Contact: prcdrcus@valleytel.net
Date: Fri, Jan 22, 1999 at 00:15:33 (EST)
Comments: Everything I have read so far is very informative.
Some of it scares me, but then I read further and I receive encouragement.
Thank you for taking your time, Mike and Cindy, to make this available to
us. We are currently receiving treatment through Shriner's, but it is nice
to see what other options are out there if necessary.
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Visitor: Stacy Maxwell
Reference: Searching for help with my son's PFFD
Location: Alaska
WebSite:
Web Info:
Contact: stacymaxwell@hotmail.com
Date: Thurs, Jan 21, 1999 at 20:27:41 (EST)
Comments: My wife and I read the story about Rebeccah,
and had the same reaction when the doctor from the Seattle Childrens clinic
told us that his foot would most likely have to be amputated. He was born
with a perfect little foot....and it's going to stay that way!! This web
site has finally given us some hope about keeping his foot. Thank You so
much and God bless! -Stacy Maxwell & Amanda Lee
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