hi everyone my son shane is 1 year old when I was pregant with him they thought something might be wrong with his legs but when he was born nothing was said at 3 months I noticed he held his legs very weird and his feet and hips stayed turned out when I took him to the drs for his shots I asked them to check it out they didn't think anything was wrong I new different asked for a specialiest they sent me to an ortho at first they thought it might be hip dysplasia but after x-ray found out his his left femur was shorter then right dr said lets wait and see I know he is not as effected as some.. he only has about 1 inch shorter that I can tell but hes a year old and is not walking yet and can not balance at all I would like to know what I can expect drs are keeping me in dark can't afford to go far from home to go to the drs so got to deal with them unless I can find some help next appt is in DEC 08 hopefully hes walking by then!!!!!! whats is lengthing and when would they start that if they could or would it even be needed???? or a lift I have no clue and the internet scares me show so meny thing that could go wrong and what are the class would he be an A if hes just has a shorter bone but nothings missing?????? any help or info would be loved ty all Tara Mommyneedshelp sassycountrygal25@yahoo.com
Comments
searching for help
Hi,
First, you should not be kept in the dark (or feel like you are) about your child's health. That is really unprofessional of the doctors. They work for you and should answer, or seek to answer, every question you have regarding your child until YOU are satisfied.
We were not a candidate for lengthening, but, I believe the earliest that they would start it (this is from when we looked into it) is around 2 1/2 yrs. old (I'll be corrected if I'm wrong!), but some wait until later than that. So, you have time to seek professional advice.
You mentioned seeing a specialist...where was this dr? Was it your local hospital?
The Limb Lengthening Clinic in Baltimore (not tooo far from you) is wonderful...and this is what they deal with EVERY DAY. Dr. Paley is mentioned a lot on this site...he's the lengthening "guru." They work with your insurance and have a sliding scale for payment.
They even have hotel rooms for reduced cost for clients.
Also...up in Michigan is the Center for Limb Differences at Mary FreeBed. They also have rooms and work w/ insurance and are basically free.
We have been to both and were able to obtain the information we were seeking.
Also...keep in mind, walking "typically" happens, even for "typical" children between 10- 18 months. However, I understand you concern about that...and really suggest you keep seeking answers.
Good luck! Keep us posted!
Libbi
new Dr.
I really feel like you need to look into getting a new Dr.! Your baby needs to see the proper Dr.s to have the best possible life! There is sooo much they can do to help him. Our baby has Both legs affected, she has no thigh bones, no hips, and is missing the small lower leg bones, and both her arms, If it wasn't for the Dr.'s that have been involved already, she wouldn't be where she is. Good job on insisting!
rachel
Re: I need info
I'm glad you got to go to an orthopedic specialist already. The "lets wait and see" they say when your baby is under 1 year old is not uncommon as there isn't anything that they would do until later anyway even if it is PFFD. There is a lot of development or lack of development that they want to see to determine a good future plan. You can read more about that here http://www.pffd.org/node/128