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My son has PFFD

My son, Brayden, was born on June 20, 2006. When he was born we had alot of problems with him. He scream and cried all the time. We didn't know what was wrong with him. We seen several doctor's. It wasn't until January 2007 that the one doctor we say requested a MRI on him. We then found out the reason behind his crying, etc. He was diagnosed with a mild case of Cerebral Palsy and we were also informed he had PFFD in his left leg and arm. More so in his leg. From there we have been though a year or more doctor's and therapy. He is enrolled in Physical and occupational therapy. He is now crawling and pulling himself up. He is not walking yet. We were referred to get him a lift in his shoe. His whole leg, both the femur and shinn bone are short. His foot is also smaller than his right by a whole 1 1/2 shoe size. My son has been through alot of the year. It was rough dealing with his problem and very aggravating at times when he cried no-stop. We now know what is causing his problem therefore we are finding the help he needs. I just would like to know how everyone else is dealing with this problem and the out come of it as well. Brayden goes back to Children's this month for a yearly check to see how he is progressing and we will know from there what we will need to do, surgery, etc. I hope everyone will keep him in his prayers.

Comments

CP and PFFD are not painful conditions for most children and PFFD does not alone affect upper extremities. If you send me details on your child's arm then I may be able to give you some possible diagnosis to discuss with your doctor. It really sounds like your doctor may be in over his head. By the way, did he mention which type of CP (there are three main ones) and how each is treated. I would encourage you to get a second opinion especially if the condition is causing fussiness. Most kids with PFFD and CP have a typical level of fussiness and contentment......PFFD gets parents more stressed than the kids!

I was looking through this website and came across your blog. I felt compelled to reply. I have PFFD and mild CP. My name is Wes and I’m currently in my senior year at the University of Nebraska-Lincoln. I’m majoring in Chemical Engineering. I was born in 1985 with PFFD and Mild CP. I’m either type A or B, I have a hard time keeping them straight. I am a triplet (a sister and a brother), neither of which have PFFD or CP. If you have any questions feel free to send me an email at tnavrka1@bigred.unl.edu.