Re: Zachary
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)
I would seek out Shriner's in Atlanta. Atlanta is were they did the
initial research for perthes. Since he is early, this is a good time
to do the drilling. But be advised, it is a 50/50 outcome procedure.
This means half the kids have success, but the other half end up with
a full head involvement and harder times with perthes. This is why
Paley goes right from drilling to the fixator. It's a choice i no
longer recommend due to the failure effects. If you go to Shriner's,
see if any of the doctors have connections to Dr. Kim. He has gotten
quite a few new doctors involved with his research. Since your son
hasn't been treated yet, he might get into one of the study groups if
being done in Atlanta. Worth a look into if you want to stay away
from any surgeries. Any Idea how much of the head is involved yet?
Brian
Hi Pam!
Way to go on your gut instinct! From what I understand, if the
perthes is not noticable yet on the x-ray, you a very early on in the
disease, and that is a positive for his prognosis, even at 7. I have
no advise, on a doc in your area, but wanted to say Welcome to a
great group. I am proud of your persistance!
Katrina / Ashton (5)
I know how you feel about the sports, it was very hard at first.
Connor loves all sports and could not wait to finally play and now
that he just started getting into it , he can't. We did join
boyscouts and its awesome. He always wanted to join but we did not
have time, so we joined a couple months ago.
Hi Pam, Sounds like your doc knows his stuff. I really appriciate
hearing any doc, give activity restrictions, along with "Wait & See"
Because I think in helps in many asspects, as in pain
management, and damages caused from impact. Good to hear
he spent so much time with you all as well. Have to respect that,
its hard to find.
Did the doc mention swimming? That is a great activity, or sport
for them to join, and its no/low impact, and great for those
muscles. Hopefully your son can understand that although it may
seem like forever, for him to be the best that he can in some
sports, someday, he has to be patient, and do as doctor orders,
until then. Hey, even share Earl Coles story, the Survivor Winner,
he was in casts, and wheelchair, from 7-13, I believe, and boy
once he was able to go, he was the fastest runner, and the
highest jumper, out of all of his classmates! There is a
magazine article, in the files somewhere about this. Well keep
us posted!
Katrina / Ashton (5)
I work in clayton and do a lot of work in NC, franklin, cashiers,
highlands and surrounding areas. My son is 5 1/2 and was diagnosed
in December of 2007. He's going to Children's ortho of atlanta. They
told me all I can do for him now is Physical therapy. Doctors around
where I live don't see much of this and his pedi has never seen a
case in his 22 years. I don't know anyone that has a son/daughter
with this condition and would like to know what to expect, things to
look out for, etc... His specialist has him taking motrin 3 times a
day(2 tsps) and his limp has gotten a little worse. He's in the 2nd
stage and was told it would last 12-18 months. His bone is still
deteriating which I was told was to be expected. His PT is starting
to get a little painful and he now can't do PE at school as well as
other sports. He may have to start using crutches soon. I'm glad I
found this page, I desperately need others to talk too.
My son is seeing Dr. Schmitz at Children's Ortho of atlanta. It's
near scottish rite and Northside/st.joseph's. He's been to him 2
times and as of right now only has him doing therapy. Won't see him
again for about 4 months. I tried doing some research on him, he
seems to know what he's doing. Dr. Michael Schmitz. Hope it helps.