Hello, my name is Amanda, and I am a parent of a little boy with PFFD. Dylan is 2 years old and was diagnosed last September (2009). He is scheduled for a hip osteotomy next summer (2011). I am not really sure what that means, other than that he will be in a cast from his chest to his legs for 4-6 weeks after that. I am afraid what that will mean for him, because he is a VERY active little boy. The reason I joined this website was to connect with other parents about what to expect in the coming months and years; from surgeries - to his entire future.
Please feel free to connect with me through e-mail or send me a message. I am open to any advice, questions, or just to talk.
Thanks.
amandarenay@sbcglobal.net
Comments
Long-time patient
Hey! I have been with Paley since I was 4, and am 23 now... We have done around 20 inches of length and have 2 left plus a hip replacement. The surgery your son will have was not around when we started, but I have been in 2 of those casts by Paley. They are hard but kids are very easily adapted to things... Ask him to cut it out a little extra to make potty time easier. At 2, he will be able to be carried everywhere so he will be ok. A reclining wheelchair will be needed for out of the house. But when I was 4 and in a spika, I went back to 4k and did school. He will adapt and will be ok with it - thats the good news! It will be harder on yall as parents than it ever will be on him! Please let me know if you have ANY questions, I would love to help in anyway!!!
Rebeccah
Reply: Dylan's Journey
Hi Rebeccah,
Thanks for reassuring me! I know Dylan is going to be fine, I just cant help myself from worrying about him. I know, thats what Moms do!!!
Just thinking about him having any operation is very scary. He is only 2 years old, He's my baby!!
When he is in the cast, he will be 3 and a half, by that age Im sure he will be fully potty trained (were working on it) but how will he sit on a potty?? And what about a bath? How does that work? Ive never even seen a spika cast except in pictures and of course not the hole in the bottom. It doesnt look easy. You deserve a reward!!!
Also, I have heard a lot of good things about Dr. Paley; we live in Oklahoma City and see a Childrens orthopedist here who will do the surgery. In your opinion, would it be better to bring him to Florida to see Dr. Paley? It is a very long trip, but if Dylan would be better off, we would do it.
Thanks so much for your advice, it has been very helpful!
Sincerely Yours,
Amanda Lemley
I can't imagine how scary it
I can't imagine how scary it is for you - I can tell you though that he is not even half as scared!!! I never remember being nervous about a surgery until I took a 6 year break and was 22 going into one.
As far as baths - sponge baths. Potty - bed pans. Its a rough little time but it is only a short time. A reclining wheelchair will allow him to move about.
As far as Paley - I am very partial!!! When we started the Iron Curtain had just fallen in Russia and the dr who invented all of this left there and was here in the U.S. kind of touring... My parents got me into the convention and presented me to him. At the time, Paley was his fellow and has done the "most in the country" (like maybe 8....) so we went with him. I still believe he has done the most of this procedure in the world and I strongly believe in a dr with a specialty being better than one who can do all. I would say - just go at least have a consiltation with him. Doesn't mean he has to do the surgery, just never hurts to have another head in the game!!! Please let me know if you have any other questions or just worries!!!!
Rebeccah
Dr. Paley
I saw on another post that said a patient of Dr. Paley's bought a house in West Palm Springs and let patients use it while in town for surgery... do you know any more about that? Getting to Florida would be quite an expense and we are looking into exactly how much it would cost. Having a place to stay would save a lot!!! Please let me know if you have any more information about this.
Thanks!
You should call Caroline
You should call Caroline Eaton. She works with Paley and is super sweet and helpful. She will know all the info on the house... Also check Southwest - if you keep an eye on it, they will have specials that are a lot cheaper. I will get you Caroline's number!
Amanda
My daughter is 2-1/2 and just had her super hip surgery in April. The hardest part for us was at the hospital, once we got home and she got back to her old self and the cast became just a small hassle. Our cast redone before we left and made into a bottom part and top part that were velcro-ed together. This meant we could take it off her to change diapers and even give her a bath. You may have a different experience from us because your son is older (or will be at his surgery date) or if his diagnosis is different but I'd be happy to answer any questions and give you some tips from our experience and send you some pictures. Good Luck.
Claire's Dad
PS I think it is definitely worth making the trip, the key to avoiding complications seem to be experience. If you decide to stay local I'd ask the doctor how many successful procedures he/she has performed and over what time period.
Amanda
Hi Amanda,
It seems that you have gotten a lot of helpful advice :-) I have PFFD in my right leg and went through the same operation when I was about 5 years old. The most difficult thing I can remember was trying to sit down, just to do things like colouring in etc, it helped a lot when my mum bought a bean bag for me to sit on. A bed pan was used for the toilet, and sponge baths to wash. However I didn't need a wheel chair as I am sure you know people with PFFD tend to be able to hop very well so I did this A LOT and only needed crutches to get out and about as i was unable to sit in a wheel chair. I hope it all goes well for you. Unfortunately I am from England so do not know much about Dr. Paley but if you have any queries on the operation and how to deal with anything, don't hesitate to contact me and I will do my best to help. Good luck and I hope everything goes well.
Regards
Amy