PFFDvsg

Guestbook - 2001

2000 1999 1998 1997

  Visitor: r.e. clifton
Reference: GOOGLE
 Location: wooster oh.
  WebSite: 
 Web Info: 
  Contact: RECLIFTON@JUNO.COM
     Date: Tuesday, Dec 04, 2001 at 20:30:38 (EST)

Comments: I WAS DIAGNOSED WITH PFFD IN 1960 WHEN I WAS BORN .I DID NOT HAVE ANY CORRECTIVE SURGURY BUT I HAVE WORN A LIMB EXTENSION ON MY LEFT LEG SINCE 1972 AND LIVE QUITE A NORMAL LIFE.IF YOU HAVE ANY QUESTIONS E-MAIL ME- BY THE WAY BOTH OF MY CARS HAVE A CLUTCH AND I KNOW HOW TO USE THEM!

  Visitor: Dr.Veklich
Reference: http://network54.com/Forum/message?forumid=87713&messageid=1005564616
 Location: Ukraine, Kiev
  WebSite: 
 Web Info: 
  Contact: ladisten@carrier.kiev.ua
     Date: Wed, Nov 14, 2001 at 04:09:53 (EST)

Comments: Dear parents! During I was searching the Web I found this Virtual Support Group. I have treated children with PFFD in Ukraine and I did never amputate the leg of a child. As I know it is normal medical practice for surgeons of UK. But it is not normal! I can help this children but lot of parents do not know about the way to save the leg. I have information on site about PFFD treatment, please, look at it: http://www.orthopaedic.com.ua/english/pffd.htm Could you help me to give this information to parents? Please, do not ignore this message you can help me save children. If you need any information from me. I am ready to answer all your questions. Hope to hear from you soon Dr.Veklich ladisten@carrier.kiev.ua

  Visitor: Frank Gratke
Reference: 
 Location: Wisconsin
  WebSite: 
 Web Info: 
  Contact: Gratke@execpc.com
     Date: Wed, Nov 07, 2001 at 23:01:31 (EST)

Comments: Son kevin born 5-5-92 PFFD Aiken Class D right leg, Have had new brace , swinging below foot with a flex foot at bottom, he can move very nicely, the swinging motion and the action of Flex foot make him reralitivily mobil, waiting for elctronic stimulation technics to approve before any surgery. The new brace has made waiting possible.

  Visitor: Frank Gratke
Reference: 
 Location: Wisconsin
  WebSite: 
 Web Info: 
  Contact: Gratke@execpc.com
     Date: Wed, Nov 07, 2001 at 23:00:57 (EST)

  Visitor: Frank Gratke
Reference: 
 Location: WIsconsin
  WebSite: 
 Web Info: 
  Contact: Gratke@execpc.com
     Date: Wed, Nov 07, 2001 at 22:55:20 (EST)

Comments: No comment at this time.....

  Visitor: Frank Gratke
Reference: 
 Location: WIsconsin
  WebSite: 
 Web Info: 
  Contact: 
     Date: Wed, Nov 07, 2001 at 22:54:42 (EST)

Comments: No comment at this time.....

  Visitor: Frank Gratke
Reference: 
 Location: 
  WebSite: 
 Web Info: 
  Contact: 
     Date: Wed, Nov 07, 2001 at 22:54:20 (EST)

Comments: No comment at this time.....

  Visitor: Tatum Slade
Reference: 
 Location: Arizona
  WebSite: 
 Web Info: 
  Contact: djslade@Qwest.Net
     Date: Sun, Nov 04, 2001 at 18:12:58 (EST)

Comments: Tatum is a 7 year old girl in the 1st grade. She has a short right leg and has had the van ness rotation at Shriners hospital in Utah about 2 years ago. She does everything my other children can do but on crutches. If you have any suggestions how to get her to wear her prosthesis I would be very thankful.

  Visitor: ginette mckenzie
Reference: 
 Location: north west england
  WebSite: 
 Web Info: 
  Contact: mckenzie@pffd.fsnet.co.uk
     Date: Fri, Oct 19, 2001 at 10:03:30 (EDT)

Comments: my son just had surgery which had been planned to correct the angle of his hip however they discoverd he had a psuedo arthtosis, a false fibros joint , which has now had to be pinned and we are awaiting it to heal so we can go on to correct the angle of the hip we are told this could ruin his chances of being a candidate for lengthening, as his discrepencey is quite big anyway has anyone had a similar experience, has this happened to any children that have then gone on to have lengthening? Michael has a website, www.tum.pwp.blueyonder.co.uk please visit,email me with any comments or advice

  Visitor: Ludmila Worman
Reference: 
 Location: California
  WebSite: 
 Web Info: 
  Contact: worman@iccas.com
     Date: Mon, Oct 15, 2001 at 23:06:15 (EDT)

Comments: Hi, everybody! We have a different E-mail now, use to be worman@dreamsoft.com. My granddaughter Kasity has PFFD in her right leg. She is 11 months now, she has her first 5'high shoe and is not doing too good on it, but we have a great hope for her. I wanted to ask, does anybody have his chind on disability and what does it do for a child? If it needs to be done, where should we start? Thank you for all your support, God bless you, Love, Lu

  Visitor: Pavel Korsun
Reference: www.yahoo.com
 Location: Ukraine
  WebSite: 
 Web Info: 
  Contact: ladisten@carrier.kiev.ua
     Date: Mon, Oct 15, 2001 at 09:31:56 (EDT)

Comments: Dear parents! Veklich Vitaliy do the operation for children with PFFD. Here all information: http://www.orthopaedic.com.ua/english/question.htm Pavel pavel@nort.kiev.ua

  Visitor: Falina Ali
Reference: 
 Location: Trinidad West Indies
  WebSite: 
 Web Info: 
  Contact: printart@tstt.net.tt
     Date: Thurs, Oct 11, 2001 at 21:59:44 (EDT)

Comments: I saw my name on the guestbook in 1998, just wrote to inform everyone that my email address changed to printart@tstt.net.tt. Keep up the great work you all are doing. My daughter Sidi is now 13 years old and doing great after two leg lengthening and numerous other ones. She will be having another lengthening at 16 years old (her choice). We are open to questions or comments.

  Visitor: YVONNE TOBIN
Reference: 
 Location: AIRDRIE, SCOTLAND
  WebSite: 
 Web Info: 
  Contact: 
     Date: Thurs, Sep 20, 2001 at 08:54:53 (EDT)

Comments: Declan is doing great. His walking and confidence is getting better every day.We still can't decide on what type of surgery would be best for him. Declan's dad is convinced that the Van Nes is the best way forward however I'm still not convinced. JIL from AUSTRALIA, it was great to hear about your son Jesse. I have not ingnored your message. I just don't have email at the moment. I will contact you as soon as I do. Hopefully this will be very soon. I only know of one person in Scotland who has had the Van Nes done however this child did not have PFFD. He had this done because he had cancer. I really look forward to speaking with you and Jesse.

  Visitor: Angela Davyduke
Reference: research
 Location: Alberta, Canada
  WebSite: 
 Web Info: 
  Contact: n/a
     Date: Mon, Sep 17, 2001 at 13:16:24 (EDT)

Comments: I think this is an excellent web site for I to have PFFD. I am first in the world to have what I had done... in conjunction with PFFD. I really apreciate this web site for now I know I am not alone. Thank-you.

  Visitor: mirjam mooij
Reference: 
 Location: Holland
  WebSite: 
 Web Info: 
  Contact: mirjam@hacom.nl
     Date: Mon, Aug 20, 2001 at 18:07:24 (EDT)

Comments: Hello, I am so glas with this internet-site. I live in Holland and our son is born at 11 mai 2001 with BIlateral PFFD. We have so little information about this. It was a shock for us. Every support and information about bilateral PFFD is welkom ! Mirjam Mooij

  Visitor: Stephanie Pecora
Reference: My son has pffd i looked it up on msn
 Location: Elko nevada
  WebSite: 
 Web Info: 
  Contact: Special_one99@hotmail.com
     Date: Thurs, Jul 19, 2001 at 19:10:30 (EDT)

Comments: No comment at this time.....

  Visitor: Stacey
Reference: 
 Location: 
  WebSite: 
 Web Info: 
  Contact: 
     Date: Wed, Jul 18, 2001 at 09:31:39 (EDT)

Comments: No comment at this time.....

  Visitor: Robyn
Reference: 
 Location: NJ
  WebSite: 
 Web Info: 
  Contact: Robyn72@aol.com
     Date: Wed, Jul 11, 2001 at 21:03:33 (EDT)

Comments: Hi everyone, things are well here. I was just wondering for everyone who has seen Dr. Paley, could you please tell me how it works if you have him treat your child? What if you arent from Maryland? Allison is now 21 months old, and she is all over the place! We take her down to Philly next month, she needs a higher lift for her shoe now. If anyone has any information that you think would help me, I would love to hear from you. take care.

  Visitor: Donna McVeigh
Reference: Google search
 Location: New York
  WebSite: 
 Web Info: 
  Contact: DNPCOFFEE@hotmail.com
     Date: Sat, Jun 30, 2001 at 23:42:46 (EDT)

Comments: Hi we are new to the group and just wonted to say thankyou. Our son was born with short femur syndrome(his right leg is short and bent)and (his left leg is short with a small bow in it) We are very glad to have found this group it took a while.We have Doctors telling us the have seen short they have seen bent but not a short bent femur.We were woundering if anyone else has seen this.

  Visitor: marsupial
Reference: google search
 Location: washington
  WebSite: 
 Web Info: 
  Contact: marsupialius@yahoo.com
     Date: Fri, Jun 29, 2001 at 22:24:25 (EDT)

Comments: i was born w/ pffd, i'm 25. i had my foot amputated when i was three. i'm an artist, activist, performer, musician... the thing that i want to say to parents is 1) have faith in your child's intelligence; 2) help your child nurture a connection and love for her or his body. it is really hard to go through traumatic medical treatments when you are so little, and be constantly told to get over it and cope. there is no language for us to talk about our experiences. people look at us and think we're weird so we spend all our energy trying to prove we're normal and ignoring our personal reality. i hope this makes sense. let your child cry. tell them they're beautiful, and loved.

  Visitor: jil
Reference: i forget
 Location: australia
  WebSite: 
 Web Info: 
  Contact: 
     Date: Thurs, Jun 28, 2001 at 23:07:36 (EDT)

Comments: particularly in reply to yvonne tobin's post - my son jesse is 24. he had a van nes at age 8. he's doing very well. a fine young man, he drives a car, rides a bike, has a very good job. yvonne, if you want to email me on the decision issue about van nes vs amputation, please feel free. jilly@bigpond.net.au

  Visitor: Tiffany Brown
Reference: Researching PFFD
 Location: Louisville, KY
  WebSite: 
 Web Info: 
  Contact: tffbrown@hotmail.com
     Date: Thurs, Jun 28, 2001 at 16:47:27 (EDT)

Comments: Hi my name is Tiffany and I have a daughter who was born 09/06/1998 with PFFD unilateral left leg. She is going to be starting the lengthening process early Sept. 2001. I am so happy to have found this website it has enlightening me on a lot of things. I had been searching for other people with PFFD. It is such a rare defiency. Please feel free to e-mail me at tffbrown@hotmail.com

  Visitor: YVONNE TOBIN
Reference: 
 Location: AIRDRIE, NORTH LANARKSHIRE, SCOTLAND
  WebSite: 
 Web Info: 
  Contact: NO ADDRESS/ TEL  01236 830848
     Date: Thurs, Jun 28, 2001 at 08:25:30 (EDT)

Comments: Declan was born 29/08/99 with unilateral PFFD left leg and was fitted with his first straight leg prosthesis at the beginning of the year. My husband and I could not imagine him ever walking with this leg however like always he proved us wrong. Declan starting walking within weeks holding our hands and in the last month he has started walking by himself. He is so full of life and devilment, you just can't keep up with him. Declan has 3 options - Van Ness, Symes or to continue using the type of leg he has already. We are considering the Van Ness option but feel that we do not have enough information. We would love to hear from anyone who has gone through the Van Ness or Symes and at what age this surgery was done. Declan's consultant at Yorkhill would like to start surgery before the end of the year, no matter what option we finally decide on.We feel that he will be too young to go through all that however pyschologically we think it may be better. LOUISE FORD, We have not heard about the Albizzia nail as leg lengthening is not an option for Declan, but please lets keep in contact.

  Visitor: federica  koller
Reference: i was surfing the web for info on pffd
 Location: i live in germany (munich)
  WebSite: 
 Web Info: 
  Contact: f-koller@t-online.de
     Date: Wed, Jun 27, 2001 at 16:58:28 (EDT)

Comments: my son was born in 1992. he has pffd - he had a lengthening operation in 1997. the next operation is approaching. i wanted more information on hip dysplasia and on operation techniques with regars to pffd/ hip abnormalities

  Visitor: Chuck, Karla, Dylan & McKenna
Reference: Divine Intervention!!!
 Location: Maple Grove, MN. - USA
  WebSite: 
 Web Info: 
  Contact: Grimbold@aol.com
     Date: Wed, Jun 27, 2001 at 02:17:38 (EDT)

Comments: Sorry it took so long to post...for some reason my new cable modem service had problems...anyways, McKenna and Karla have been home since Apr 21st, and so far everthing is going great!!! See next post.....

  Visitor: Chuck, Karla, Dylan & McKenna
Reference: Divine Intervention!!!
 Location: Maple Grove, MN. - USA
  WebSite: 
 Web Info: 
  Contact: Grimbold@aol.com
     Date: Wed, Jun 27, 2001 at 02:08:32 (EDT)

Comments: Hello Everyone!!! Our little McKenna has just finished her first limb lengthening and is home recovering!!!! We just wanted to drop a note telling you all thank you for your emails and support to Karla & McKenna while they were in Baltimore with Dr. Paley. It helped to keep their spirits up while they were there. All in all we gained about 2.625 of length, short of our final goal by .5, but we just put a rubber insert insider her shoe, and she now wears 2 REGULAR SHOES!!!! The process took from Jan. 10th 2001 till Apr 23rd 2001. Even though they are home, she still has the Illiz. device on. Anyway McKenna is scheduled to have the device removed in either late Jun or early Jul depending on how the bone hardens...We would love to talk to anyone who wants more info. on this process...Just email us at Grimbold@aol.com, and we will share all we know to date....We owe all of our success to this website and the people who visit here and post their life stories for all of us to share... General rule of thumb...For every Doctor visit, for any medical condition...Trust yourself, do research...get second opinions, and trust in a higher power...Whatever that may be...We have been blessed to get through this part, and we have met some wonderful people online, in Baltimore, and around the world... We know that we are stronger as a family, and together we can get through anything!!! Thanks again!!! Good luck & God Bless!!! Chuck, Karla, Dylan & McKenna

  Visitor: Chuck, Karla, Dylan & McKenna
Reference: Divine Intervention!!!
 Location: Maple Grove, MN. - USA
  WebSite: 
 Web Info: 
  Contact: Grimbold@aol.com
     Date: Wed, Jun 27, 2001 at 02:06:06 (EDT)

Comments: Greetings all!!!

  Visitor: Julie Honeycutt
Reference: back again!
 Location: Grand Rapids,MIch
  WebSite: 
 Web Info: 
  Contact: jhoneycutt@mfbrc.com
     Date: Wed, Jun 13, 2001 at 07:44:52 (PDT)

Comments: Hello, I am the same physical therapist on here again. I have a new address though since my last entry. I am still interested in any adults with PFFD who might want to share their stories of their porcedures and what issues they may be facing, such as pain etc. I am working with a woman in her thirties with PFFD who underwent a VanNess Rotationplasty when she was 4 or 5. She is having some back and hip pain, and is now pregnant. She is excited , but I am looking for some more information or people who encountered similar sitations so I can help her the best I can. After pregnancy pain may be an issue for her too. Please contact me if you have nay ideas, suggestions, resources, stories, etc! jhoneycutt@mfbrc.com

  Visitor: DENNIS REHBOCK
Reference: INVOLVED WITH PFFD PATIENT
 Location: JOHANNESBURG - SOUTH AFRICA
  WebSite: 
 Web Info: 
  Contact: drehbock@surfnet.co.za
     Date: Sun, Jun 10, 2001 at 07:26:04 (PDT)

Comments: I an a podiatrist that is involved with the treatment of a PFFD patient. If anyone has any experiences with shoe midsole lifting / raising to help the PFFD patient walk better, please contact me on my e mail address. I am presenting a case history at our local podiatry congress and would like some help or experiences. MANY THANKS. DR

  Visitor: DENNIS REHBOCK
Reference: INVOLVED WITH PFFD PATIENT
 Location: JOHANNESBURG - SOUTH AFRICA
  WebSite: 
 Web Info: 
  Contact: drehbock@surfnet.co.za
     Date: Sun, Jun 10, 2001 at 07:25:57 (PDT)

  Visitor: Scott and Stephanie Capone
Reference: 1999-Found site through search engine
 Location: Bayport, Long Island, New York
  WebSite: 
 Web Info: 
  Contact: sshc1@netzero.net
     Date: Thurs, May 03, 2001 at 19:52:22 (PDT)

Comments: Hi Folks, My daughter Hailey was born on Jun 4, 1999. She has left PFFD (level 3a-Paley classification) Dr. Dror Paley, who as far as we are concerned is an angel from God is Hailey's doctor and will be doing her lengthening. Hailey's condition is severe. Dr. Paley will be performing the first of 5 operations starting with a soft tissue release and knee reconstruction with an external fixator Jul 18, 2001 at Sinai Hospital. We plan on detailing the course of events with PFFDvsg. My wife and I have also registered the domain name www.pffd.org We have started an organization dedicated to understanding of this condition as well as support and roads to turn to including Dr. Paley. We are currently seeking funding. We will be applying for several corporate grants as soon as the legal-non profit end is taken care of. We hope to have the site launched soon. PFFDvsg has helped us tremendously. We have spoken with many parents whose children have PFFD because of this site. We hope to partner with PFFDvsg. Our prayers are with all of you and we hope to hear your feedback.

  Visitor: Shannon
Reference: From my Dr.
 Location: Kentucky
  WebSite: 
 Web Info: 
  Contact: Silkbrownsugar@hotmail.com
     Date: Mon, Apr 30, 2001 at 13:48:06 (PDT)

Comments: I thank the Lord for sending me this wed site. I was looking for something or someone's story that I can relate to. Well I have found it now. God Bless, Shannon

  Visitor: JASON  SMALLWOOD
Reference: ASKED JEEVES
 Location: SWINTON   SOUTH YORKSHIRE  U.K.
  WebSite: 
 Web Info: 
  Contact: NONE  29 CORONATION RD SWINTON  S.YORKSHIRE  S64 /8AL UNITED KINGDOM.
     Date: Thurs, Apr 26, 2001 at 06:49:09 (PDT)

Comments: OUR DALE STARTED FULL TIME SCHOOL ON MONDAY 23/04/2001. THEIR IS NO STOPPING THIS BOY HE LOVES IT. LIMB RECONSTRUCTION DUE THIS YEAR /LENGTHENING RIGHT PROXIMAL FEMOUR DISCREPANCY NOW APPROX 6CM. I CAN NOT BELEIVE HOW FAST HE HAS GROWN UP AND HOW FAST THIS OPPERATION IS COMING. MYSELF,LISA DALES MUM,AND DALE WOULD LOVE TO HEAR FROM ANY FAMILIES LIKE OURS. KEEP SMILING I KNOW HOW YOU FEEL. BYE...

  Visitor: JASON  SMALLWOOD
Reference: ASKED JEEVES
 Location: SWINTON   SOUTH YORKSHIRE  U.K.
  WebSite: 
 Web Info: 
  Contact: NONE
     Date: Thurs, Apr 26, 2001 at 06:45:12 (PDT)

  Visitor: JASON  SMALLWOOD
Reference: ASKED JEEVES
 Location: SWINTON  UNITED KINGDOM
  WebSite: 
 Web Info: 
  Contact: NO ADDRESS/  U.K. O1709  589919 TELEPHONE
     Date: Thurs, Apr 26, 2001 at 06:19:34 (PDT)

Comments: MY SON DALE OWEN SMALLWOOD AGED FIVE WAS BORN WITH P.F.F.D

  Visitor: JASON  SMALLWOOD
Reference: ASKED JEEVES
 Location: SWINTON  UNITED KINGDOM
  WebSite: 
 Web Info: 
  Contact: 
     Date: Thurs, Apr 26, 2001 at 06:15:08 (PDT)

Comments: No comment at this time.....

  Visitor: JASON  SMALLWOOD
Reference: 
 Location: 
  WebSite: 
 Web Info: 
  Contact: 
     Date: Thurs, Apr 26, 2001 at 06:13:23 (PDT)

Comments: No comment at this time.....

  Visitor: Louise Ford
Reference: steps website
 Location: Carlisle England
  WebSite: 
 Web Info: 
  Contact: fordlouise5@aol.com
     Date: Fri, Apr 13, 2001 at 08:22:36 (PDT)

Comments: hi my daughter charlotte was born with pffd she is four and half and her leg is about 12cms short.Last year she had a hip operation which went well and the next step is lengthening.Has anyone had their leg lengthened using the Albizzia nail?Yvonne Tobin from Airdrie i,d be interested to hear from you as you dont live far away from me.

  Visitor: YVONNE TOBIN
Reference: 
 Location: AIRDRIE, SCOTLAND
  WebSite: 
 Web Info: 
  Contact: 
     Date: Thurs, Apr 12, 2001 at 04:18:38 (PDT)

Comments: LOOKING FOR INFORMATION ON VAN NES ROTATIONPLASTY. STILL TRYING TO MAKE A DECISION. AMPUTATION OR VAN NES???

  Visitor: Mike Starbuck
Reference: Dr. Paley
 Location: Vermont
  WebSite: 
 Web Info: 
  Contact: mstarb8172@aol.com
     Date: Tuesday, Apr 03, 2001 at 13:07:10 (PDT)

Comments: My son, age 9 will going through a lengthening procedure this summer. Looking for help/ideas/patterns with clothing modification. He has a right short femor.

  Visitor: Frank Haines
Reference: search
 Location: Virginia
  WebSite: 
 Web Info: 
  Contact: Idoitmyself@msn.com
     Date: Tuesday, Mar 20, 2001 at 16:03:23 (PST)

Comments: My son,Gavin was born with PFFD on 10/29/97.My wife and I are always looking for others to talk to, and get advice.

  Visitor: Liam's Dad
Reference: Been here before...
 Location: Canada
  WebSite: 
 Web Info: 
  Contact: todd_hickey@stratos.ca
     Date: Thurs, Mar 15, 2001 at 20:19:04 (PST)

Comments: Hello all. Just dropping in on the vsg after being disconnected for some time. We are back on the east coast of Canada once again. Liam was born 3/25/1998 with unilateral PFFD (Aitken class B) rt leg. Liam will be 3 yrs old next week and what a little boy we have! He's an inspiration to me every day, and certainly to everyone who knows him (he's quite the popular little boy at daycare!). Liam has been using his platform prosthesis (he calls it his 'buddy')and walking independently since 16 months. He runs, skips, falls, runs skips, falls...yunno typical 3 yr old playing hard. Absolutely nothing stops him, and I know we certainly will not either. The latest 'plan' we've been given from specialists has been to look at surgery for Liam around age 5. We've been considering Van Ness rotationplasty as the best option, but of course that 'decision we have to make later' is coming at us very rapidly it seems. I am very interested in hearing from parents/kids who have gone through the Van Ness. Although Van Ness has been our preferred approach for Liam, I really have to be convinced it will make life better for him. He is extremely mobile and independent now with his straight-leg platform prosthesis; I do not want to risk him losing that mobility and freedom for very long. Does Dr. Paley perform Van Ness if lengthening is not an option? I'm sure all of us on this group can relate to what this 'life-long' decision means for our kids and that it's quite a gut-wrenching experience. Needless to say, I am not at all looking forward to my little boy going through any pain, especially pain that Daddy can't make go away. Looking forward to hearing from you. God Bless!

  Visitor: Paul Kainen
Reference: web search
 Location: Washington, DC
  WebSite: 
 Web Info: 
  Contact: kainen@georgetown.edu
     Date: Sun, Mar 11, 2001 at 16:58:39 (PST)

Comments: I am a friend of the mother of a little girl with PFFD. I am currently putting together pointers to electromagnetic therapy in connection with TENS (transcutaneous electronic neural stimulation) which aims to alleviate pain by sending weak currents through the skin. Some variants use magnetism and I am preparing a comparison of the methods. Similarly, there are a variety of electromagnetic approaches to bone healing - some which claim to stimulate growth. These EM methods have not been shown to be effective for PFFD, but perhaps with further scientific research (which I am hoping to encourage), we may find that so-called ``energy medicine'' approaches will be helpful in minimizing the need for surgical intervention for PFFD. As I accumulate the information, it may be found at the following URL: http://www.georgetown.edu/faculty/kainen/PFFD.html

  Visitor: gabriel reznik
Reference: 
 Location: argentina
  WebSite: 
 Web Info: 
  Contact: greznik@irsa.com.ar
     Date: Wed, Feb 21, 2001 at 12:30:23 (PST)

Comments: No comment at this time.....

  Visitor: Laura Johnson
Reference: 
 Location: Madison, South Dakota
  WebSite: 
 Web Info: 
  Contact: johnson5@hcpd.com
     Date: Tuesday, Feb 20, 2001 at 10:33:29 (PST)

Comments: Just checking in. Our 2 and 1/2 year old daughter, Hailey, just had another appt with Dr. Dahl at Gilette Childrens Hospital in St. Paul last week. We are planing for her first lengthening sometime next year. We really like Dr. Dahl and more important, Hailey seems to like him. We really appreciate the fact that he sits down and REALLY talks to us about it all and isn't afraid to tell it like it is. We feel very fortunate to have found him. Until next time....Rich, Laura, Hailey and Kassidy Johnson

  Visitor: Sotiris Giannas
Reference: Through Internet
 Location: Greece
  WebSite: 
 Web Info: 
  Contact: sotiris_giannas@yahoo.com
     Date: Mon, Feb 19, 2001 at 21:28:14 (PST)

Comments: I have a daughter two years old,who was born on Jan 18,1999 with PFFD at her right leg.On Feb 6, 2001 she had her first surgery (at her hip, femur and Knee) at Kernan Hospital .She has been operated by Dr. Paley.I would be delighted if I could help anyone who faces the same kind of problem.

  Visitor: Lu Worman
Reference: internet search
 Location: California
  WebSite: 
 Web Info: 
  Contact: worman@dreamsoft.com
     Date: Sat, Feb 10, 2001 at 21:32:11 (PST)

Comments: Hello everybody! I am a gransmother of a 3 month old granddaughter Kasity. Kasity was diagnosed with PFFD the minute she was born and we are at our first step to a long road of dealing with that. My little girl does not have a hip joint at all and her fimor is about 1/2 length of normal. Ironically, 8 years ago my daughter Mariya, mother of Kasity and I moved to The USA from Russia , the homeland of Ilizarov. I am very happy I found this support group. Thanks to everybody who makes it possible. I am sure my daughter and I are going to be here with all of you for a long, long time. Our best wishes to you all.

  Visitor: julie Honeycutt
Reference: browsing
 Location: Grand Rapids, Michigan
  WebSite: 
 Web Info: 
  Contact: jhoneycutt4@juno.com
     Date: Wed, Jan 31, 2001 at 12:40:59 (PST)

Comments: It is nice to see more comments re: folks who have gone different routes for treatment of PFFD, and citing the psychological hurdles that may occur. I am a physical therapist who works with children and some adults with PFFD. Any adults out there with PFFD , either with lengthenings, ablation surgery, or VanNess rotationplasty, that can share some insights into how you manage pain issues, stretching, activities and sports as you get older and any changes you have notices? Thanks!!!

  Visitor: Linda 
Reference: 
 Location: Canada
  WebSite: 
 Web Info: 
  Contact: 
     Date: Tuesday, Jan 30, 2001 at 19:10:09 (PST)

Comments: I have just enjoyed reviewing all the material on your website. You have parents who wish there was more info available. Our daughter was diagnosed in 1977 and there was NOTHING available. However, we did search out the specialists and she has had many surgical procedures including, at age 12, a lengthening with the Ilizarov technique. The result is a deficit of almost 3 inches but the hip continues to present problems. I am mainly writing to caution parents that this is a life-long problem and that your child will need your support and advocacy for many years to come. It is a tremendous challenge as each of you knows and an ongoing one as the needs of your son or daughter change. The psychosocial aspect seems to be downplayed in the articles by Dr. Paley but having been through the teen years with our daughter, the impact on the child's self-esteem and body concept re-surfaces in the late teen years. I would describe it as a time when the child begins to take responsibility for his/her own problems and for the person with PFFD, this adds a considerable challenge. You are doing a great service. Good luck to all. Linda (Ontario, Canada)

  Visitor: Karla Berg
Reference: Divine Intervention
 Location: Maple Grove, Minnesota
  WebSite: 
 Web Info: 
  Contact: Grimbold@aol.com
     Date: Fri, Jan 19, 2001 at 17:55:59 (PST)

Comments: Okay, we no longer lay claim to the Minnesota Vikings! Well, we have now been in Baltimore for 2 weeks. McKenna's surgery on Jan 10th went very well(it took approximately 3 1/2 hours for Dr. Paley to get the Illizarov on). The first day was rough, as expected. She wanted us to take it off, even though we had tried to prepare her as much as possible beforehand. Now, a week and a half later, she has named it Scooby Doo, is able to do some walking, and loves the swimming part of the physical therapy! However, she already has a pin infection... but I guess we expected that. We have now just begun the actual lengthening process, so we are anxious to get things going...Well, if you have any questions, please feel free to e-mail us any time. We'll keep you updated as things progress. Thanks again to all of you who have shared your thoughts and experiences. It has gotten us where we are today! Chuck, Karla, Dylan and McKenna

  Visitor: Karla Berg
Reference: 
 Location: 
  WebSite: 
 Web Info: 
  Contact: 
     Date: Fri, Jan 19, 2001 at 17:44:45 (PST)

Comments: No comment at this time.....

  Visitor: Charles Berg
Reference: Divine Intervention
 Location: Maple Grove, MN-USA
  WebSite: 
 Web Info: 
  Contact: Grimbold@aol.com
     Date: Sun, Jan 07, 2001 at 15:53:30 (PST)

Comments: Greetings from Minnesota!!!!!! Well, we are finally going in for the lengthening on 01-10-01 with Dr. Paley. We arrived on 01-06-01, and have moved into our leased apartment. The company that arranged for this furnished apartment has done an excellent job!!! Email us for more info.. Anyway, we are getting ready for surgery, and are kinda nervous. Karla and McKenna will be out here(Baltimore,MD) for around 4 months with Dylan and I flying in every other weekend or so...Drop Karla a line at Grimbold@aol.com when ever you can as she could use the encouragement!!!!! We want to thank all of you for the support and prayers so far, and we will keep you posted as things progress!!! Oh yea, one more thing....GO VIKINGS!!! Sorry, had to do that....Good luck, and God Bless!!! Chuck, Karla, Dylan & McKenna

  Visitor: Mike Malloy
Reference: 
 Location: 
  WebSite: 
 Web Info: 
  Contact: pffdvsg@ohio.net
     Date: Thurs, Jan 04, 2001 at 19:53:41 (PST)

Comments: Welcome to the 2001 PFFDvsg Guestbook. Thanks for stopping by. Please take a few moments to sign our guestbook. Past experience shows that many future PFFD parents will find these comments very helpful. Guestbook archives for 1997-2000 are available on our website at www.ohio.net/~pffdvsg. Thanks for signing.........Mike

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