My baby is just one month old and has PFFD affecting her right leg. It hasn't been classified as a,b,c,or d yet. She has a fully developed leg with foot, but missing her knee cap and the femur and tibula are smaller and the femur is bent. It appears to function like her other leg. Any advice while we impatiently wait for our apt with Dr. Ingles in July at Mary Free Beds Limb Def. Clinic in Grand Rapids Michigan. I am struggeling to stay positive. I am scared for all that she will have to go through, emotionally and physically. If anyone has any recommendations of doctors in Michigan for treatment or near Michigan please let me know. Or if anyone knows anything about dr. Ingles please share. Thanks!
Hi, We also live in
Hi,
We also live in Michigan(Plymouth) and have a son with PFFD. He is now two years old. We currently see Dr. Hensinger at U of M. My son has a missing fibula, and a bowed femur(Class A), but he has a good hip and foot so he is a good candidate for lengthening. We have not decided where to go yet for the lengthening. We have been to Dr. Paley, Shriner's in Chicago, Children's Hospital in Detroit as well as all the local hospitals. The best thing you can do right now, is get under one doctor's care. They will monitor your baby the first year since she will probably not need any shoes lifts or braces until she starts walking. Then you can research different hospitals and make visits the next two years to decide where you want to go to long term. There will be a lot coming up in the next few years, but for the first year you can sit back and just enjoy them growing up. My son is into everything. He keeps up with all the other kids, and actually gets into more trouble than them. It is hard the first few months, but once you see her hitting all the milestones you will realize she is just as special as any other child(maybe even more so). If you have any questions you can email me.
Sharon
Emotional and Physical
I am an adult with PFFD who was before many of the treatment advancements of the past two decades so I had over 22 major surgeries. I am also the parent of a child who disabled. Let me assure you that what you are going through this first year is far worse than the emotional and even physical pain your child will endure. There are medications to control your child's medical pain and strategies to develop your child’s healthy self-image to avoid emotional pain. However, there is little relief for a parent who is burdened with worry about their child. I assure you that the first year is the worst and it only gets better from here.
I had very little emotional pain (beyond the usual that occurs when growing up a girl in our society) from peers being insensitive, and this was remarkably rare. My family firmly denies the old adage, "That which does not kill us makes us stronger". When occasional teasing or isolation occurred based on my disability, my parents were at the school demanding diversity education and action to stop it (before this was cool). School administration would sometimes say that your daughter (me) must develop a thick skin because she will face this all her life. They were so wrong! My parents taught me that teasing and isolation is abuse and no one should tolerate abuse. I must say, as an adult I hear some insensitive comments from people who don't think I can do things for myself or for my children that I can, but education solves this problem.
If you get a chance check out my blog. It has a lot of information about my first few years. Plus I am happy to answer any questions that you may have or just listen to your concerns. My email is lworkman@workman-associates.com.