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Congats to Tanner!!

Getting Arthoplasty tommorow will post before and after pictures
shortly!

I posted the Nov and yesterday's xrays....I should say that the Nov I posted but i dont know where it went, it said in Pauls for some reason but when i go look it's not there...who knows...they are in Tanner's file now.

Brian if you feel up to it can you review it. Thanks.

Alice

Hello. I am new to this group. I live with my family in Wyoming.
I have a 61/2yr old son who has LCP. He was diagnosed at 4yrs
9mos. Although we are happy he was diagnosed at such an early age,
he has 100% loss. There were no doctors in our state who really delt
with LCP on a consistant basis, so we travel 4hrs to The
Denver/Aurora Colorado Children's Hospital for every treatment. My
husband and I are constantly asking our selves if we are doing
enough for him. Sometimes the, "Waite and see untill the next x-
ray." makes us feel like we are failing our son. He has been in a
Petrie cast and is now in a Scottish Rite Brace. I feel blessed
that he has only got to wear it when at home and at bed. However,
the more I continue to research LCP and the conflicting treatments
by doctors has me once again, second guessing if the deisions I make
for my son are the right ones. I feel, as with anything in dealing
with your own children, that the worries never end. Even whe we get
good feed back from the Doctor, I worry if my son's treatment isn't
too "lax". His doctor encourages some running, play and movement as
long as he has no pain. which for my son, makes him happy. For us,
I cringe every time I see him jump off something or bounce around.
I am glad to have found this site and I look forward to interacting
and sharing experiences. I was also courious if anyone on here is
from my area or has experience with the Aurora/Denver Children's
Hospital?

We went yesterday for x-rays and Jonathan has more new re-growth. We
will go back in April for more x-rays. Dr. Fitch wants to keep a
close eye on the growth so he has us on 8 week check ups again which
of course is great to me. I am glad he is "willing" to follow it
closely, although I have to wonder if he is seeing something to make
him want to keep such a close eye on things. Maybe some of you more
experienced moms and dads of perthes can take a look and see if you
see anything to be concerned with in yesterday's xray. I would
appreciate any feedback on this. We fitted for a new scottish rite
brace since Jonathan outgrew his old one and we will get it in about
a week. This time they are sending it to us and we don't have to
drive back down there unless we need adjustments made. Jonathan was
happy to actually see the new growth this time. I will post his x-
rays as soon as I get it scanned.
Welcome to all the new parents. Wishing you all the best while on
this roller coaster ride. We are finally going d
o
w
n
hill!!!!Hooray!!!!
Sandy & Jonathan NC

Thanks Alice, your info is helpful in helping us decide our path for
Zeb. Peace to you and Tanner...
Susan and Zeb

Hey Pam, welcome to an amazing and informative group. I am sorry
about what you are going thru and I (and many others) know how you
feel. First of all, good for you to keep up the search until you
found an answer! Second, there are somethings that can be done if
caught early enough. If I were you, I would look up Dr.Paley at the
Sinai Hospital in Baltimore MD, ASAP. He is a doctor who thinks
outside the box concerning this disease and he has some techniques
that are geared toward early detection and treatment. You can get
his address from the Links or Database on the left side of your
screen. There are also some great articles about this disease in the
Files section. I am sure you will continue to get more info from
others on this group, good luck and post if you have any questions.
Peace...
Susan and Zeb (4 1/2 dx:10/07)

Hi Michelle,
My son had a Petrie (without removable bar and without feet casted)
last January at age 8 and I drive a Subaru Outback. I guess it depends
on whether you have another child in the backseat with him and also on
the size of your child and the spread of his cast.
I had to take the car seat for my 2 year old out of the car, and my
husband and I pretty much had to drive separately wherever we went
until he was out of the Petrie. We kept a couple of pillows in the car
at all times, so Adam could prop his legs up to get comfortable. He
was in the Petrie for 6 weeks and then went to a Petrie-type brace.
The brace is very light-weight and I think the angle went down, because
now we can fit both kids in the back seat just fine.
The Outback is great, too, because we would fold the single side of the
back seat down and then the reclining wheelchair would fit in back, too.
I think it depends, though, on the size of your child and wheelchair.
My son is only about 55 lbs and 50 inches tall now (VERY small for his
age). And his hip has been contained without dramatic angles on his
brace and cast.
Good luck with the casting. The first week is kind of tough, but it
gets much easier when they are able to scoot around and within about
three weeks you can't stop them!
Let us know if you have any more questions.
Lisa/Adam 9

Hi everyone. I have been reading your messages for weeks, because I
believed my son Zachary had perthes. His xrays were normal with a limp
in October, and when the limp cam back a few weeks ago, we had another
round of xrays that were also normal. Because I have been so worried,
the pediatric ortho ordered an MRI yesterday, and we found out this
morning that it is Perthes. I guess sometimes moms just know.....the
doctor was convinced last week that he did not present as having
Perthes. He is 7 years old, normal size. We are obviously reeling
right now....going into talk to the doctor this afternoon. I wondered
if anyone can reccommend a doctor in the Atlanta area that is really up
to date on treatments for this. We are seeing Peter Meeham. Just feel
like I've been hit by a truck....and trying to come up with the way to
proceed. Thanks.
Pam

Hang in there Brian, there has to be a light at the end of the tunnel. I know you know this. So sorry to hear of your demise, will continue to keep you in our prayers.

Alice and family
Brian Baker <bbaker904@...

Feeling down everyone. My new diagnosis is pancolitis. This is the
most severe form of my disease. Oh joy. I'm still going threw with
testing for the celiac sprue. But it may not have an effect on the
colitis. This means a long road ahead and maybe leaving the group in
the future. I will try my best to answer what I can. It may just be
late evenings and weekends only. I wanted so much for this group to
grow. Dr Kim has more doctors working with him and conservative
measures are making a big come back with greater results than even the
fixator.
My GI doctor is even concerned I may get AVN again and wants me off
steroids forever now. This means I may get sick longer than before. The
only cure is to remove my colon and I'm doing conservative measure
myself to avoid that.
All of you would make my day by continuing to post. Even if it's just
an update from time to time. It makes the group look active and help
bring in members. Please bear with me for a while. I don't have a light
at the end of the tunnel yet. I'm praying for one. I'm praying for all
of you. Brian