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Help our Ginny

Hi our daughter is three and we live in mississippi. Like so many others that I have read about she was diagonosed at first with osteogenisis imperfecta after a visit to our nearest genetisis in memphis we were happy to know that she has pffd. We have been kept in the dark for quiet some time. Because I am an LPN second and a mother first once the initial shock of having our fourth child at forty wore off I begin to question the choices that our doctors are making and have come to the reality that they know no more than I about this. I had to recommend for her to have daily range of motion exercises at birth. I had to request physical therapy( and God blessed us with an angel named Regina)
Now I am asking for your help. I have been told by our pediatric orthepedic doctor that after I asked him that she has class c or d but that it was a very rare case but this is also the same doctor that told me to go to shriners in St.Louis because they may know
more about pffd. This same doctor wants to put my active three year old in an emobizing brace that could possible cause her to loose the function of a good working foot. He does not think that she is a good candidate for lenghting and thinks she will not need surgery until she is 5 or 6. According to the classification scale of Dr.Paley she would be a type 2b.I will go and do whatever it takes to get her help but just wanted to know if anyone else has walked a mile in these shoes and could maybe shed some light our way.HELP!!!

I am an adult with PFFD and I am a mom of a child with a disability. It is so hard to find accurate information on any non-standard disabilities. It has been my experience that too many doctors think they are experts if they have seen one kid with the condition.

I personally was treated at Shriner's in St. Louis and was not pleased, BUT this was over a decade ago that I aged out of their system. I first saw them at 15 weeks in 1973 and they kept me as a patient until I said I had, had enough at 19. I said goodbye at 19 in the midst of a batch of surgeries to correct one that did not heal (and still has not healed). I cannot wear a prosthesis as planned, which annoys me considering this was the goal of having over 22 surgeries. (BUT this does not stop me from a typical and very happy life. I am very mobile and alternate between crutches and a wheelchair.) Perry L. Schoenecker, who is still Chief at the hospital, oversaw most of my treatment. He is very honored in his field. My treatment fell during years when parents were not a part of the treatment team and even visiting hours were limited. I believe that if my parents had been invited to participate (and in today’s medical climate, they would be) and had their voices been valued, then my treatment would have taken a very different road.

Your experience of you knowing more than docs is not limited to parents who are RNs. Most parents know their child and understand more than the docs who read it in a book or saw a couple kids. I encourage you to stay involved to the point of being a PEST (Persistently Expecting Superior Treatment) for your child if needed, ask the questions that no one wants to take time to answer and seek 2nd and 3rd opinions. With all the options, then you will make the best choices. I strongly believe that moms (and some dads) are the most qualified to make medical decisions (whether they are an RN or not) for their children. I am pleased that my mom made choices as she did when I was a child.

Thanks so much for sharing your story because that's what I'm afraid would happen to Ginny if I don't push the enevelope. Ironically that was the doctor we too saw at shriners.Not to say that he isn't an equiped doctor but I just didn't feel that shriners was the place for us nor the type of treatment we were seeking. Thanks Ginnysmom!