Question:I was wondering if anyone can help me my daughter kayla is 4 years old
and she was just diagnosed with a rare bone disease called perthes
disease also known as Legg-Calve Perthes Disease The orthopedic surgeon
does not want to do anything for her he said to let the diseases just
run its course she can barely walk I live in an upstairs apartment and
it is hard for me to get her around I have to carry her from the chair
to the bathroom basically It would be easy to do that but she weighs 77
pounds and the weight is not from eating doctors are still trying to
figure that out.. What I am trying to say is if there is anyone that knows
anything about this disease?
Answer:I am sorry to hear of the problems that your daughter is having. I too have
a daughter with several medical conditions - one of them being Idiopathic
Juvenile Osteoporosis. We have been in this for 5 years now. In the
beginning the doctors would basically throw their hands up in the air and
said they didn't know what to do - so they did NOTHING! As parents we
could not allow our daughter to continue the way she was. I read everything
I could on the Internet- libraries - medical books - anything I could find.
I called anyone and everyone who I thought would have some insight - which
most didn't. Even if they had no info or knowledge of her disabilities they
often were able to lead me to another DR. who did. I would call that next
DR. insist that they see us and take her for an evaluation. We have seen
upwards of 30 SPECIALISTS - that does not include the standard family dr.
our Pediatrician told us not to come back) and general orthopeadists. ( It
was costly so we put her on ACCESS secondary to our own health coverage- she
was listed with the state as medical insurance help for disabled children).
Through all the reading and phone calling I got a great handle on my
daughters problems and understood more about them then most of the docs.
When we wpuld go for an appointment - I knew enough to be able to know if
the doc himself had knwledge of the problems or if they werejust interested
in looking at her b/c of the rarity of her conditions. Well, my advice -
read, read, and read. ask questions - if a do9c doesn't take the time to
answer them find a new doc. go to your childrens hospitals for the best you
can find. your "standard hospitals are great but many have little info on
pediatrics that are the "unusual" cases. Also, I had a mom of a disabled
child say to me - "always trust your gut instinct as a mom - it will always
be right" - I totally believe that - mine has lead me in every direction
that was the right. I listen - I read - I ask -I think and then I do what I
feel is in my child's best interest...... have faith - it will all work out!
