World Wide Web

I'm not a doctor but what can I do for you. Brian

Little news link about a 4 year old in the St Louis area. Brian
http://examiner.net/stories/100807/hea_206356095.shtml

hi doctor
im so glade knowing such person like u
im a new member in ur group
but really i wanna help
i have no words to say but sure u feel wat i wanna to
god with u

I'll be praying for you. Let me know how it goes. Brian

That was sweat he remembered that. In time, you'll be trying to keep
up with him. Those happy days are near. A new star is on the horizon
I'm sure. Brian

Just wanted to let everyone know my son jonathan is going to go for his surgery on Monday at 2. I will let you know how it goes. Michelle (jonathan 9)

Hi All, we have been very busy this week! I have been spotting
Ashton a lot around the house, along with distractions, and PT &
swimming. (o: But he is taking it slow, still keeping his balance,
takes consintration, as well as pointing that foot inward, just to
make it straight. His effected leg still points outward. That is the
stiffest, hardest part of PT, the leg/knee/foot turn stretch. Hopefull
as his muscles get stronger, along with PT, that will get better.
Any suggestions for this?
Sweety, was tired the other afternoon, after going back and forth,
and said "mom, remember that time we were on the way to the
doctor far away, and I saw that wishing star, & I wished I had
super hero powers, and I could walk." I said yes honey, do you
remember that. (that was our 2week into spica cast run, to get
fractured ankle casted) He said, "ya, my wish did come true, I
can walk, but my super hero powers are invisavble." Gave him
just enough power to want to get up, and walk some more. I
settled him down, reminded him how tired, he just was and he
should rest, but I thought that was the cutest, most sincere
feeling for him.
Anyways, had to share.
Kia Kaha!!
Katrina & Ashton (5)

Are the both of you from Indiana?
Ashton and I are in Fort Wayne, Allen County...
I know he would love to meet other kids in the same boat as him
as well..."indygab" has your child all ready had surgery? Or just
on activity restrictions for now...I do not mean "just" ... It is hard for
our child, and other children or even adults for that matter to
understand why they cant just go run & play... I think kids accept it
much better then adults. But they just forget, easily, and take off
running ect... So where are you families located...Fort Wayne is
closer to the northern area, We are about an hour & half-2 hours
from Indianapolis. We would enjoy meeting other kids as well,
probably would have to be after the holidays, if its a distance for
us...
Katrina & Ashton (5)

It has been 2 years and 6 months (June 2005) since Jonathan's first symptoms of perthes. He was prescribed a walker 9 months after that to help slow him down. He used it all day at school and anytime he would be walking long distances. 2 months after that he was prescribed night traction as he was waking all during the night in agony. The traction made a difference as he was finally able to sleep in his own bed again and most nights all through the night. A year later he had the tenotomy and wore petrie casts for 6 weeks. The day the casts were removed he was measured for the scottish rite brace. He has been completely pain free and has not taken any motrin, tylenol, etc. since day 2 of the brace. He has been wearing it 23 and a half hours a day except the days he has hydrotherapy (he then wears it 22 and a half hours a day twice a week). He has now been in the brace for 4 months. He does everything with the brace and can climb trees, run, ride his bicycle, etc. He cannot
jump. That is his only restriction right now. We buy clothes 2 sizes big with adjustable waists and he wears the brace under the clothes. Most of the time you can hardly tell he has on the brace. He has been doing hydrotherapy a little over a month now and his ROM is all but perfect. His walk without the brace is beautiful. He does have a slight limp due to the LLD of 1/2 inch but this too is not as bad as it was. The doctor feels as he continues re-growth the LLD will take care of itself for the most part. Hope that answers your questions.

Sandy & Jonathan - will be 7 in January - NC

Is anyone in this area??? I would really love for my daughter to be
able to play with someone that can understand what she is going
through. She has been having a lot of pain and discomfort in her leg
and knee and limping quite a bit more. The doctor said it was a normal
Perthes flair-up and that they would come and go. Is anyone else kid
gone from surgery ....no walking for 6 weeks with no cast.... to
walking with no running or jumping that fast it seems like most of your
kids are in casts or braces ????

Wow, wonderfull news. Maybe by spring everything will be great for
all of you. Merry christmas. Brian

congratulations ...... sure u deserve it now ask god to fullfill ur fillings sooon well ,, may i ask u , how much time he was in braces ? and is it was a must ?cause my son got perthes 7 months ago and his doc. prefferd co braces or any otherthing just keep watshing by x-rays ....and i m worry of that
hope for u best re-growth happend ..
bye

Hi Diane,
We were guests of AI Dupont for many years with our son who had
bilateral perthes. They are the reason our son is leading a normal
life today and I would recommend them highly. However, if you really
want a second opinion, I would recommend Dr. Dror Paley in Baltimore.
I know it is probably a little farther, but you can save a step and
email him your xrays and he will give you a phone consult at no
charge. I would trust his judgment implicitly and you can't beat
free. You can email Dr. Paley at: dpaley@...
Hope that helps!
Barb

Hi everyone. I got what I wanted for Christmas! I am absolutely
thrilled. My kids have been asking me lately what I wanted for
Christmas and my only reply is: I want Jonathan to start re-growth.
Well we went today for his regular check-up and x-rays and are
excited to say he is in re-growth. Dr. Fitch was happy to see a
definite change in x-rays and of course it brought tears to my eyes.
My husband looked at me and said well you got your Christmas present
early. I am so happy I had to share it with everyone. We go back in
April and Dr. Fitch said if he continues to see significant re-growth
we will be brace free in April. When I told Jonathan exactly what Dr.
had said he yelled out yippee my bone is growing back and asked if we
get to have a party so I am going to talk to his teacher about
bringing cupcakes tomorrow after lunch for a celebration.
On another note, I met Susan, Zeb, and her husband Dave at the dr.
office today. They will also be returning for a check-up on the same
day as we return in April. They live close to us and it was exciting
to talk to someone from the group face to face. We all went to eat
lunch and "compare" x-rays and notes, etc. I am looking forward to
getting together with their family in the future and letting our boys
get through this together knowing they both have the same thing in
the same hip. I must say they are a super nice family. Thanks for
hanging out with us Penland family.
I don't mean to rattle but it has been an exciting day for our family
and I wanted to share with everyone our great news. I am looking
forward to celebrating with all of you as you get that long awaited
news too. Your day will come and I will be here to celebrate!!!! We
are at the top of the slope looking downhill from here!!Hooray!!!!
Sandy & Jonathan - 6 NC
Scootish Rite Brace currently

Good news, Rebekah!
Glad to hear things are going well for Laura. I know it has been a
long road and that you have all been waiting for good news and the
beginning of the down hill!
Congrats!
Lisa/Adam 8

Hi, I am hoping someone can give some direction.

About a month ago we were told by our family physican that our 9 yr old, adopted, daughter

had Legg Perthes, and that we needed to get her seen at CHOP, Philadelphia, ASAP

Of course this was a Friday afternoon, and their orthopedics offices were closed.

So I researched the heck out of Legg Perthes online, found this group, etc

From my research I found Dr Bowen at Dupont in Delaware. Huge list of publications

on Legg Perthes, Hip Displasia etc. So made the appointment there, had my daughter

seen that week. He sends us for the 3D ct scan, and schedules a family conference.

At the conference we were informed that it was not Legg Perthes but was hip displasia

involving the 2nd stage growth plate. And that surgery needed to be done, cutting the

femur in two parts, putting in a plate and a screw.

We were doing pretty well with this, set up the surgery, etc. Then our peditrican called today

to check in on our daughter and asked about the treatment, and asked if we had

considered a second opinion. I told her we had felt very comfortable with Dr Bowen, he

had explained things in detail, etc. She stated that we should consider another

opinion. But when I asked her who/where - she had no idea. But possibly Shriner's

in Philadelphia.

So now we are relooking at everything, and trying to figure out who to even request the

2nd opnion from. Does anyone have any recommendations for the Philadelphia PA area?

Is anyone aware of a similar group for Hip Displasia?

Thanks!

Diane

Hey all,
Laura got the cast off Friday at 2pm. She's had lots of Tylenol
with codiene over the weekend. Her legs hurt tremendously and she is
at her usual of trying to keep her legs just like they were in the
cast. She also battled a viral infection over the weekend. However,
today, she is back at school and all smiles, brace and all. There is
NEW bone formation in her left hip. It took two casts (a total of 11
weeks in the cast) and 6 weeks in the abductor brace to get that
formation. Now, 4 more weeks in the abductor brace to try and tighten
up the muscles around the hip socket. We are on the downhill slide
now! HOORAY! Hope all is well with all of you. Keep on keeping on. A
dab will do ya!
Bless you,
Rebekah
Oklahoma
Mom 2 Laura, 8 with Down syn. and Cerebral palsy and 2 derotation
osteotomies & tenectomies on both heels BEHIND US!

I haven't been threw a pain clinic before. Ibuprofen is a cox1 and
cox2 blocker for inflamation and pain. Another good over the counter is
peragesic. It is used for pain and is good for adults. Brian

HELLO,i AM looking for info from anyone who has been treated a pain
management clinic. What therapy was prescribed and what pain meds were
helpful

Everyone, and Conner's mom. I'm sorry for not writting too much. I had
my colonoscopy today too and things didn't go all that great these past
24 hours. I became sick during the clean your colon stage. I only made
it half way threw that bottle you drink to flush out. I started
throwing it up. I tried an enima this morning to help. They put me
under this time. It took me hours to get my mind somewhat back when I
read the post about Conner. That was why I jumped on the support board
and asked others to please come over. I'm still in and out of it. The
doctor removed another one of those small tumors I get and now I feel
the pain from that. I get these from time to time since I was a child.
They aren't polyps but go a little deeper. It requires a small hole to
be mad in the wall for removal. I tried to eat but threw it up. I just
woke again from a 3 hour nap. I'm sore and a little out of it. I hope
tomorrow I'll have my head on straight. Sorry for missing anything.
Brian

Brian, I woke you didn't I? I'm so sorry. Please get some rest.
Jacob and I are praying for you. Terry

I am so sorry to hear about this. I can only imagine the myriad of
feelings you must be experiencing when you found out things were not
as you thought they would be. I am so, so sorry.
I'll let the expert (Brian) take over with the fixator, etc.
We did have a wheelchair - we rented it from a medical supply place
and my insurance paid most of it since the doctor wrote us a
prescription for it. As far as p/t, we are limited to a certain
number of visits annually as well. The p/t office worked out a
heavily discounted price for us once we exhausted our covered
visits. You may want to discuss that with them. Sometimes too your
insurance will extend the number of visits in certain situations, so
you may want to check on that too.
I'm thinking of you, take care.
Meridith

Connor could not get his decompression surgery. Dr. Paley looked at
the Xray they took today and you can see that the bone has already
started to collapse, it has really changed in the past few months.
Connor is going to get the external fixator. They are trying to do
this ASAP. WE hope to have it done Friday. He would be 3 days in the
hospital. THen 4 months in the fixator, after that a cuff type brace
for 6 weeks and then for 4-6 months only at night.
If anyone has any experience with the fixator, please email me or
post. I am going to buy the pants that button down the side, but what
else is there? How do you get the underpants or bathing suit on them?
He will need crutches and also possibly a wheelchair. What places can
you get wheelchairs and not pay fortune? HE will need PT 5 days a
week, I think my insurance only covers 25 days per year.
We also met Dr. Standard, I think he will be the one doing the
surgery.

I wish I could have stayed longer. Thanks for the little laugh. It's
comeing out all right. Brian

keeping you in our prayers...
mbsss <mbsss2@...

Tomorrow is our "big day" we are meeting with Dr. Paley at 9am and
then have to be in the surgery area by 11:00 and at 1:00 the
decompression surgery is scheduled. I have a bag packed full of stuff
to keep Connor busy. I am so proud of Connor, he does not seem nervous
at all. When we first found out he had perthes, he told me I WILL
NEVER have Surgery, I will never use Crutches. I am never having
anything done.
WE all have come a long way.

Yes I have heard of this. Regrowth is normally larger than the
original hip, wider and flatter, and it can cause some problems as
the get older. What type of surgery was the doctor asking for? Were
do you live at? Dr. Paley and a few others have developed a type of
hip reshaping surgery to bring it closer back to normal. I would be
cautious about a surgery to stop the other leg from growing to match
the perthes leg because boys respect their height as they get older.
It would be better to lengthen the perthes leg. Older surgery for
this would normally be a valgus osteotomy to the femur. This
straightens the neck to a more upright position making the leg longer
and moving an out of round area out of the socket. Let me know if I
can answer anything further. Just please try and let me know the
types of surgeries the doctor wants. Dr. Paley at Sinai in Baltimore
takes xrays via email and pioneered the latest surgeries for
reshaping the head. Brian

hi everyone,
my son had surgery and casting for legg pertes 8 years ago. he has
done exceptionally well. He plays football and other sports without
any problem at all. Upon routine exam it is determined that he has a
significant leg length descrepancy and will need surgery again as he is
rapidly growing and his hip is abnormal. has anyone else encountered
this?
thanks everyone.

Thank you soooo much for taking time to stop by. I sure hope
everything come out OK tonight..LOL Give me a call as soon as you can.
Terry

Wishing Conner all the best. Wishing you the best outcome. Terry

Tomorrow is our "big day" we are meeting with Dr. Paley at 9am and
then have to be in the surgery area by 11:00 and at 1:00 the
decompression surgery is scheduled. I have a bag packed full of stuff
to keep Connor busy. I am so proud of Connor, he does not seem nervous
at all. When we first found out he had perthes, he told me I WILL
NEVER have Surgery, I will never use Crutches. I am never having
anything done.
WE all have come a long way.

I have a contact in the AAOS...maybe I can ask her who to talk to
about it. Also, I will be meeting a lot of AAOS people in Feb in DC
with Dr. Kim when we lobby congress for more research funding.
It also sounds promising with the Earl Cole fund that is being
investigated by Barb. It would be nice not to have to re-invent the
wheel...I am a teacher and believe in the "beg, borrow, and steal"
concept when it comes to good ideas!!!
Kate/Jacob H.-9

I'm still digging about for one way to donate funds for perthes
research. I have written to Dr. Kim again and maybe he will write back
this time. It may be possible that the AAOS is the place funds need to
go. This is the group Kim is going to DC with and Dr. Paley's limb
lengthening group is listed. As I learn more I will post. I added a
link to their perthes page. It is listen as Americam Academy of
Orthopedic Surgeons. Brian

Thank you for your input. I appreciate it.

What part of Indiana?
Dyan/Paul(6)

For what it's worth, my son just had an ortho appt on Monday, and the doctor said that often with the late fall and early winter, Perthes kids will have more stiffness and inflammation because it's like they have their own built in barometer. He said if we notice problems with his ROM before our next appt in 3 months, to step up the stretches, put him on some anti-inflammatories, and give them a call. But he said be more liberal with the meds if we need to be because of the time of year (William generally doesn't take anything for the pain).
William's teacher also said he is getting up a lot, so we're going to bring in a seat cushion for him to see if it helps.
On a side note, I asked him about ibuprofen inhibiting bone growth. He said all of the anti-inflammatory options (not just ibuprofen) have this issue. He said that is why they don't want to use it for fracture healing. I need to get him to explain it more, but he didn't seem to feel it's an issue (not sure if that's because of the stage William is in--still early fragmentation, or just that bone growth in Perthes is different from healing fractures, or what).
Karla/William (6)
mbsss <mbsss2@...

Connor woke up this morning and he had a very stiff walk. He always
has a limp but this was different. It looked like he was not bending
his left leg when he was walking. I asked him if he was stiffer than
usual and he said he hurt, it was a 4 on a scale of 1-10. (usually if
he hurts, he says its below a 1) I moved his leg around and his ROM
seemed the same it always did, no better, no worse.
I am getting nervous that he may be starting to fracture and would not
be able to get the decompression done on Monday. I am not even sure if
you can't get it done if that is the case. Does this change always
mean something or could he just be having a bad day?

Karla

Connor woke up this morning and he had a very stiff walk. He always
has a limp but this was different. It looked like he was not bending
his left leg when he was walking. I asked him if he was stiffer than
usual and he said he hurt, it was a 4 on a scale of 1-10. (usually if
he hurts, he says its below a 1) I moved his leg around and his ROM
seemed the same it always did, no better, no worse.
I am getting nervous that he may be starting to fracture and would not
be able to get the decompression done on Monday. I am not even sure if
you can't get it done if that is the case. Does this change always
mean something or could he just be having a bad day?

I have been really watching Ashton and reminding him today!,
how much tuffer he feels then his bones do...Ashton fell out of
his bed last night!! He took the blunt of the fall to his head...Boy I
was wiggling everything!! No its just my nose/head he says! I
said "well at least your heads the hardest part of your body!" He
said, "well that floor is a lot harder then my head!" I said "I know
honey", he woke up this morning with a red & blue green nose...it
was a little swollen...But not crooked, and it didnt hurt to
touch...So I say not broken...Little guy....I had to fight the urge to
get a full body x-ray!! Falling out of the bed, makes me pretty
nervous, but I guess him too, because after that, he was
cuddling with the wall until he woke up in the morning!!! Crazy!!
Katrina / Ashton (5)

Hey Brian - I have noticed it does slow down some in fall and winter - I guess to the hussle and bussle of the season.

Dylan is doing really good right now. The cold seems to bother him with the limping and being stiff. He is still rowdy and we are continuing to slow him down from the jumping and running. He is one of the most active children; as alot of these children are on the group. It is always a battle to explain to him why he can't do those things. He doesn't go back for a check-up and xrays until early January and his last appt. was July. I am curious how things are looking in 6 months time (hopefully good).

Anyway, wanted to update everyone and I hope you all are doing well and are enjoying the holidays!

Beth (Dylan 4)

Brian Baker <bbaker904@...

How are all of you doing. This group slows down during the winter so
please post an update from time to time. I think about all of you.
Brian

Beth Lunsford
Tanner Mgt. Company LLC

Director of Marketing

McDonald's Restaurants
(270) 298-4646, ext. 102
www.tannermcd.com

That's the same day and time I will be under for my scope and surgery.
Tell Connor I will be thinking of him. Brian

Hi Brian,
I'm sorry that I've not been around. I try and read every day and keep
up, but it has been hard. That said, the families on this group are on
my mind often.
Nate seems to be doing well. He is not scheduled to see the doctor
again until late February, but he just overall seems to be improving.
He still sees the physical therapist once a week and the therapist
thinks that he is making great progress particularly with his range of
motion. He is in swimming once a week too which I think is helping.
He is not complaining of any pain and his limp seems to be getting
slightly better, but it's still there. He's definitely pushing the
envelope on the physical activity and will run if he thinks I'm not
watching. It continues to be a battle, but I'll confess that I've
eased up some which is probably not a good thing. Bad mom. We still
have hardware removal ahead of us, maybe in the early spring.
Personally, my life has been so busy. I started culinary school in
September and I am in class 8a-6p two days a week and am still working
my regular job, so it's been a challenge. I am loving school even
though it's harder than I've ever worked. I'm so glad I didn't put it
off any longer. The kids are adjusting well to our new schedule and
routine and all our family and friends have pitched in to fill the gaps
due to my crazy schedule. My husband has been a rock star. Our
youngest boy is turning 3 in december and we're looking forward to
celebrating that.
So, that's the news from here. I probably won't be around much for the
next few weeks as things are very busy, but I've got a week of from
school in late December so maybe I can catch up then. I will continue
to try and read daily to keep up on all the happenings. Thanks for all
you do to keep this group going in spite of slackers like me!
Take care, Meridith

Connor is going to Dr. Paley on Dec. 3rd. (this Monday) We will meet
with him in the morning and then the decompression surgery will happen
in the afternoon. I will not know a time until Friday. Connor is doing
alot better with this news than expected.

How are all of you doing. This group slows down during the winter so
please post an update from time to time. I think about all of you.
Brian

I just wanted to bring up my opinion on going about raising
awareness for Perthes. I brough this up at another group, but I
know some of your are interested to, and thought I would share.
It is necessary for money to be raised towards Perthes
Research. As in the new treatments options, that have been
proven succesfully. But until that time, there are many doctors
that will not be reached with this information. And they are still
going to have the "wrong" opinion, leaving families feeling
helpless...The more I think about it, the more I do believe the
initial raise of moneys that I would want to donate, would be
towards a way for families to find the best treatment. If we can
not convince the doctors that believe there is "nothing" we can
do, that there is options for better healing. Then we have to get
these kids to the doctors that will, take it seriously. When
needed. But of course making parents aware of access to help,
to get more answers, is another course...There is really so much
to this, and is it is pretty complicated. But I do love how many
people are interested. And I believe more would be, if we had
something official & concrete to work with...
My point is we almost have to focus on the children/family, and
the doctors that we know really want to make a difference, first.
Because it will take some time, for the moneys to raise for
research to go in affect, and even be published, and spread. In
the mean time, more families are being told, there is nothing that
can be done...
I love you guys!!
Katrina / Ashton (5)

Hey, a lot of truck drivers get that tail bone issue. When you sit
for long periods your cheeks push together causing blood to leave
around that area. Tell him to reduce sitting on flat surfaces like
the floor or else he might get a pressure sore. The scooting won't
help either. Sitting on a cushion is all right. Because he's walking
more, it should go away fast. But be advised, no pain from that type
of sore because it's from blood loss. One day it's blue, the next a
wide open hole. Careful please, Brian

Hi All,
Just wanted to say how Ashtons doing!! He is good, stronger
then ever, and his pain is lower then it has been all year!! It has
been 2 weeks & 2 days out of the cast, and on Thursdays family
get together, He was standing from a sitting position and
walking 4-5 steps all by himself...like 5+ times he did this that
day, I could not believe how well he was standing without
grabing onto anything! He has not pushed it this much since
then, and I dont really mind! But we have been doing stretches,
4x a day, and we have swam at the Y 4x this week. (Dawson
comes sometimes) He had the weekend off, of swimming
excersises, but we will be back at it tomorrow, He is very
coopertive, and we try to make it fun, But he knows how
important it is, after stretches he can put the life jacket on and
play for awile...He is scooting all over the place faster then ever,
or crawling...The last few days I have noticed his tail bone, looks
brused, greenish blue, he has had no hard falls, but like I said,
still lots of scooting on his bottom...Think thats it? Anyone else
experience this? I plan to call the doc tomorrow anyways...but if
anyone has any ideas, I am all ears...
Well I hope everyone had a good long weekend!
Katrina / Ashton (5)

Hey Brian, Can I get the new link title? Did I miss it?
Thanks!
Katrina

Everyone, I added another link. On this link a new listing of stages
is given. It gives a better breakdown of the stage the hip is in and
when containment is needed. Of course, they say containment with
surgery, but it is only a study and many kids were excluded form the
study. read the comments at the bottom. This will give you an idea why
I write studies are not a guide. Studies are done to prove a point
only. The most interesting thing I found about this was the break down
of regrowth. It may explain why Tanner went backwards while in the
start of regrowth. Regrowth can start before full absorption of bone is
done. If containment is stopped, it would be possible to go backwards
in regrowth. Brian

I have seen that website, but it does not seem to have too much
information on it. I guess its fairly new.

Anyone ever contacted the owner of helpkidswalk dot org. This is a
503c listed fundraiser for perthes, but nothing is really posted at how
to contact the owner. It would be nice if we could find out more. Brian

Hi Terry. Sorry, busy day. Cell battery is dead. It's in my car
charging. My finger is a lttle better. Long way to go. Very black in
spots and painfull at times. I don't see were I could stop using the
splint for a while. I'm not looking forward to another scope. Only
because someone from work needs to give me a ride. Oh well. No good
doctor at home. I will call you later. Brian

How are you doing? Jacob wants to know if your finger is better? He
misses you. Did you get any turkey for thanks giving?? I tried to call
you but the line was busy. Sorry you need to work. I know one more week
before your next test. Are you doing better gut wise? Terry

Hi Kristie. It will take a little time for the pain to drop away. The
decompression drilling is like having a small fracture in the leg. It
will get better. Hopefully eveything will get better in a few days.
Brian

You will be in great hands with Dr Paley. It will be just like Kristy
just posted. Drilling makes the body think there was a fracture and the
drilling allows new needed material to enter the head of the hip. It
will cause some pain just like any other fracture. But it won't last as
long. The earlier it is done, the higher the chance to solve perthes
fast. Take care, Brian

Hi everyone, sorry I haven't posted or to be honest haven't even been
online. Everything seems to happen all at once.
Olivia had her decompression surgery on the 12th. She was in a lot of
pain for the first week and wouldn't walk. I think she was mostly
afraid. She is now walking with a limp(no worse than before). We
won't really know too much more until she gets her x-rays in February.
We are just praying that we didn't put her through all this with no
positive results. Just wanted to give you an update, you and your
children are in our prayers. Have a Happy Thanksgiving!

I emailed Dr. Paley a few days ago and attached a copy of his xray and
one shot from his MRI. He does have entire head involvement. He wants
to do the drilling procedure. We are going to set up an appointment
for this. I feel upset about this news, but am hopeful about the
drilling procedure. He said that Connor is in the very early stages.

Brian, thank you so much for what you do for us. I am so thankfull for
what you have done for me and my family. Be safe in your travels. I
know how it is in the trucking buisness and how this time of year is
when you need to work harder before the winter slow down. I hope you
are here for christmas. My son looks up to you just like his daddy.
Thank you for everything. Terry, Brad, Jacob 9 , and little Brian 9
months.

Please be safe in your travels and take your time. Roads were packed
tonight and everyone is in a hurry. I hope to stay out on a load
somewhere. If I'm anywere near the house, my mother thinks she needs to
cook. I stay away because of that. She is 72 and we celebrate other
ways. Give those kids a hug from me. Brian

I'm counting down with you. Praying for you every night. Raindow
ahead of you. Brian

Dear all,
Laura has about 3 more weeks in this FULL spica! HOORAY! This is
spica #2 for her, just for those that just joined. She doesn't have
perthes but Down syndrome and Cerebral palsy. Please continue to pray
that when we reach the x-ray table on the 30th that the left HIP has
started to fill in at the femur. It had not on the 16th of OCT (day of
the 2nd derotation osteotomy). That surgery for the left side was done
July 13th! We are ALL so ready to get this thing off and enjoy
Christmas SPICAVILLE free! I will be so excited to put pants on my
little princess. Thanks for all the thoughts and prayers.
Rebekah
Oklahoma
Laura, 8 years old; 2 surgeries-derotation osteotomy w/ heel cord
tenectomies & a Gtube revision surgery all in 2007!

I found a real good medical paper about loss of blood supply the the
femoral head and differing treatments. It is a study done on rats and
explores nearly all treatments done today. It does not go into detail
like orthosis management and non weight bearing other than says how
changes to the shape of the head is caused by acetabulum pressures. It
explains how hip drilling, known as decompression is the only real
stopper for the AVN. This is good study material. Shows what doesn't
work like meds and hyperbaric oxygen. Brian

I want to give you my opinion about what you should be looking into
for your son. If you can get a copy of the xrays, I would send a copy
to Dr. Paley for an opinion. Bilateral is different because of this.
When a child has perthes, the top doctors say relieve weight bearing
off the leg once fragmentation is going on. But with a child with
bilateral, you can't hand a child crutches and say keep your foot off
the ground because it's both legs. Try to get the doctor to give you
a script for a wheel chair. There will be more times with this that
he will need to stay off the legs. He can't stay in a bed and miss
life. The chair will allow him to participate more. Non weight
bearing and containment is a very high priority. He will have a
higher chance of spacing collapse and impingement of the hips on the
lip. Either one will cause a major miss shaping of the hip. Please
talk this over with your doctor. Brian

Hi Kathy. The surgery should be adductor releases. Making a small cut
in the groin and snipping a few of the tendons that pull the leg
together. Tight addudtors muscles can pull the hip up and out causing
impingment and bad hip deformities. Doctors sometimes do an arthrogram
to look at the hip in real time. Casting is done for 4-6 weeks. It
gives the doctor a clear view of the hip and see if further involvement
is needed. The concervitive doctors normaly go to a brace after the
casts. This is somethimg you need to talk with your doctor about. If
your trying to avoid surgery, this is a time to tell him. Adductor
releases aren't a major surgery. Osteotomies are. Brian

Yes, it is recommended that they have bed rest. Jumping is not good as it can cause the femoral head to slip out. Don't want that...surgery. If his femoral head has not cracked, split, etc...this can help prevent it...so they say...

My son has been dealing with this almost 3 years and we have always kept him down, but still have a worse case scenario.

Alice
indygab <indygab@...

Both of my sons hips are said to have been affected .They never
recommended he stop jumping,running,ect is this common not to have to
do anything but watch and give suggested rest when limping worsens?
Jerry stands with the weight off one leg alot of the time .He has a
slight limp all the time but it does get worse when he over uses it .
He says my bones hurt ...

Kathy

Its called a Tenotomy and is frequently used in Perthes. It is done to realease the tight tendon which is preventing his ROM (range of motion) from being good.

Suggestion...have you tried loosening him up in a hot tub of water then stretching him out.

Example sit in front of him with his legs in a V as wide as they will go and stretch a little further.

Take his foot in your hand and push back at the toes towards his torso.

Have him sit up straight against a wall with legs out straight for a count of 10, 3 or 4 times.

Have him lay flat you take a leg and straighten it up in the air, let it rest on your body.

These will help. Do them several times a day and the more baths the better. Besides it gives him something to do while sitting, you can teach him his letter recognition, word recognition, numbers etc. Fun to do.

Alice
jolu2718 <jolu2718@...

Did anyone's child have this surgery done? My Dr. keeps talking about
it.. says my sons range of motion is getting worse.. currently on bed
rest now until monday the 26th.. He was just diagnosed in early Oct.
and is 6yrs. old.. The dr. says if on the 26th range of motion is
decreasing or not getting better he will talk about doing this surgery.
he said after surgery my son would be put in the petrie cast for 3-
4wks. and can slowly resume to activities after that.. does this sound
right? Thanks..
kathy/Luke

---I'm new to this so not sure how much i can help you.. but my son was
just diagnosed last month.. Only left hip affected. He was told to give
up all activity.. no running jumping, sports, etc.. Only walking when
needed.. and was put on physical aquatic therapy... his range of
motion has worsened so now he is on complete bedrest.. But since his
bedrest we hardly notice a limp when he does walk and he hasn't
complained of pain in over a week..
Maybe you'd want to consider having him rest more. I'm sure the more
knowledgable members will come help you.. Also becasue of his age that
may be why they are taking a lighter approach..

Did anyone's child have this surgery done? My Dr. keeps talking about
it.. says my sons range of motion is getting worse.. currently on bed
rest now until monday the 26th.. He was just diagnosed in early Oct.
and is 6yrs. old.. The dr. says if on the 26th range of motion is
decreasing or not getting better he will talk about doing this surgery.
he said after surgery my son would be put in the petrie cast for 3-
4wks. and can slowly resume to activities after that.. does this sound
right? Thanks..
kathy/Luke

Both of my sons hips are said to have been affected .They never
recommended he stop jumping,running,ect is this common not to have to
do anything but watch and give suggested rest when limping worsens?
Jerry stands with the weight off one leg alot of the time .He has a
slight limp all the time but it does get worse when he over uses it .
He says my bones hurt ...

Terry, You can call the doc if you want. I wouldn't worry much
unless the pain increased or you see him limping. My hips pop all the
time too. Maybe others may want to read this. Even contained hips
that grow back round are still growing larger than the original hips
were. This is normal with perthes. The hip is still covered with
cartilage and the socket is filled with it. Since the 2 don't match
perfect, there may be some spaces and gaps between those 2 cartilages
when weight bearing. As the hip moves, those little spaces may
change, combine, or collapse away forcing the fluid out making a pop
or click. That is more than likely what you hear. As time goes bye
the cartilage around the head will thin. It will thin more were
pressure is applied. the thinner the cartilage, the less size
increase to the head as it continues to grow. The thicker areas with
increase in bone making the hip rounder. This will make those spaces
go away. The big issue is how those area thin. If done during weight
bearing only, the cartilage in the socket will thin also. This is why
most get arthritis later in life. If it is done with the hip in the
contained position from the brace, most of the remoulding happens to
the hip only. Those pockets of fluid can also cause a quick sharp
pain when released. I hope this helps you. Is he still using the
brace at night? Brian

Brian, Jacobs hips are pooping a lot more and he says he gets sharp
pains still. What could that be about? Should I call the doctor? It
doesn't slow him much. I can hear the pop sometimes before bed when he
walks. Terry ps: How is that finger? It looked nasty.

It sounds like Cody is doing great If the doc can see a round head
again that means he is in full regrowth now. The hip starts ossifying
from the sides and then over the top at the area were the old hip
meets the solid articular cartilage. That's why protecting it with
containment is needed in most to prevent flattening. The hip may look
hollow still, but he is in great shape. Nearly all kids have pain in
the other leg. most of it is from favoring one leg and the body
having to handle everything on the other. At this point any bilateral
would be a rare event. It is possible still but not likely. It will
take time and exercises to balance out the muscles again and then
pain should go away. I hope I helped, Brian

That is reallt great. I can tell you a little about Ultrasound. It
is good for looking at soft tissue but can not see threw hard bone.
It is used for diagnostic on new borns for dysplasia issues but once
the hip is ossified heavy, they must use xrays. It would be nice if
they could use it more, like seeing new ossification for regrowth
after the hip dies away. Brian

Last week, I recieved an update on how Ashtons cousin, Cody,
whom, just turned 9, was diagnosed with perthes last year. Has
not been seen untill last month with new custodial parents,
Grandma, & Grandpa. She (grandma) sent me an email, after,
we have all been so busy, we have not talked on phone for
awhile. I congragulated her back...But I am also concerened that
the doc, may not be so experienced...but not sure if its my place
to tell her, maybe just one more opinion...She seemed excited,
about the news, and it is very possible that he had a mild case,
and God knows this guy has been through an awful lot in his life
all ready...
This is what she said the doc said. "The ball looks like its
growing back nice and round, she had nothing to compare it to.
She said most children get this in the other hip also, but he
looks like he is going to be fine. Come back for x-rays in 6
months." I took this as she may not no how to catigorize it, in any
matter? and the comment on the other hip, just did not sound
very experienced...
My concern, is that like all of our children (before) & (after (o:) ,
Cody is a very active boy, BUT all through this perthes journey,
and 9, is getting close...If the ball is coming nice and round, that
would also be very obvious, and he would have to be very close
to the end...And again, maybe things smoothly, and mildly for
him...Any advise would be great...Thanks for listening!!
Katrina & Ashton (5)

Hey All, I just have to share, that my Mom, whom had a previous
9th grade education, after haveing me a week after her 16th
birthday. She has been a hard working waitress al my life. Well 3
months ago, she recieved her GED. And now she has been
accepted at Indiana Purdue University!!! Yay!! I am so very proud
of her!! She is going for a degree as an UltraSound Technician!!!
Local Universities might be a good connection to work for local
Perthes Awareness as well...I dont know much yet, and since
she will be in the medical field, my mother will be in that area a
lot, but I've learned that they do have a scientific research facility,
as well my family doc, just informed me there is an orthopedic
resident office as well. Many universities, have clinics for
numerous hands on work for up comeing dentists, docs,
nurses...At no or low cost, I have ment people recieve great
dental work....Its worth at least speaking with the ortho residents,
I am interested on what they know, ect. about perthes...
Well, I am so very proud of my mom, she is nervous, with no
computer experience, But I told her she is motivated, she will
learn all that she needs to!! Hopefully in 2-3 years, she will have
her career set for her...I just had to share!!
Katrina & Ashton (5)

Amy, I'm sorry no one answered you about this. In my experience, I
do not know of any who have been aproved for it. I know some states
offer help depending on income. I do not know were to turn. Brian

Thank you Danna. I recieved a little good news I think. My first
test were OK as far as Cancer or other infectious issues goes. That
narrows down the diagnosis to the first doctor I saw. At least this
one talks with me and is very friendly. I looked up latex allergy
diets and started taking a few things out of my diet. So far it seems
to help but pain from my gut has gone up in one area. That is the
spot the doctor wants to see real close. Maybe removing it. But thank
you for the link. It was interesting. Brian

Hi Susan. I've written about that. Richard Grear's son who was
diagnosed early at age 16 had that done. It stopped his perthes and he
had regrowth in about 4 months. It helps in about 50% of the kids. It
needs to be done before fragmentation begins or in very early
fragmentation. Brian

One more question:

A friend told me I should apply for Social Security Disability. My doctor said that most Perthes patients are not approved. Has anyone else tried?

Thanks again,

Amy

Mother of Cameron (8), Bethany (6), Joseph (4), Peter (2 with Perthes) & Anna (9 months)

Has anyone here ever had this done? I am interested in finding
out anyone's experience with this procedure... it may be too late
for my son but I am still going to ask! Thanks, susan

Alice, I'm sorry to hear all of this. This is what I know from my
studies. LCP is an AVN that happens more than once. All of us have at
one time lost blood supply to part of our hip. This is part of the
reason a crescent is seen in some kids. The bone dies once in a spot,
regrows, and dies again. What makes it perthes is when a large area
dies and is caught and diagnosed. Ruffly 80% of the kids that realy
have perthes are never diagnosed and get caught. It's only the 20%
that have the multiple loss of blood supply, loosing more bone that
get diagnosed. In my opinion, is was the time out of the brace during
the day that may have caused the loss of blood supply again. I can't
really blame the doctor because most of the time once regrowth is
seen, that's when brace usage is stopped. Tanner was one that wasn't
ready for full activities yet. When Tanner was first released out of
the brace during the day was he on any restrictions? Most are still
restricted from running and jumping because of this. It is possible
he over did it and that is what put him back. Brian

Thanks for the tip...

Tanner went to his Ortho yesterday, it was a 8 week check up. At his last appt, he went back in his brace 24/7 and his chair 24/7. His femoral head had taken a turn for the worst and the Doctor was at his wits end because from Feb to September he took a HUGE step backwards.

Question 1

Has anyone ever heard of a repeat case of Pethes in the same hip and the first case not being in regrowth?

That is what our Doctor is calling this. He said for some unknown reason, Tanner's hip started all over. I asked him about regrowth in the femoral head. I said in March it will be THREE years since the onset of Perthes, why no regrowth. He could not answer other than this is his second case. I dont get second if the first was not healed and why not bi-lateral, not the same side.

He did however take him out of his brace during the day and to be worn only when sleeping...so approximately 12 hours, as I will put him in at 6 p.m.

He showed me that the xray (which I have uploaded) showed that the head was completely reabsorbed. The top of his femur had new bone growth compared to Sept.

Tanner's scoliosis has gotten worse...went from a -11 curve to a -15. His walking is with a limp (when he does do it). He hasn't been in as much pain since he went non-weightbearing. I won't say it is the brace because I believe it jus keeps it deep into the acetabelum.

Well that's all for now.

Alice and Tanner (soon to be 7)

Thank you for joining. I have a tip that helps keep your mail from
being slammed. If you click on edit membership, set you mail for daily

Please look at that links I have on this group. Look for Davids
page. His son was diagnosed at 4 and the doctor had put him in casts
for 5 times. The biggest thing with really young children is that
braces aren't really strong enough to handle what all of these really
small children do. It would be a constant fight to get them to wear
them and to make a brace strong enough to handle what they do would
be extremely heavy for them. Children this age do not have a fully
developed socket(acetabulum). Perthes at this age could cause more
problems if you unable to control the weight bearing without
containment. This could cause extreme flattening to the hip as well
as unmolding of the socket meaning extreme surgeries later. It is
always recommended that a child that is too active to go into casts
rather than a brace. Those casts on that link are the most extreme.
As he went from one cast to another they added more internal rotation
to the casts to keep the head matched to the socket. This is real
important because of a underdeveloped socket in a child this young
and is done with developmental dysplasia also on babies. These kids
do get more comfortable with this after the first week or so. The
whole key is to treat them as normal as possible and let them do as
much as they can and what the casts will allow and what the doctor
says is ok. Unlike a brace, the hold the leg correct all the time. A
brace for a child this young would be so soft it could bend and not
allow the hip to stay were it needs to be. Sandy on our group is
fighting this with her son and the brace. They have had to go back
multiple times for brace repairs. Now they are having a bar added to
the brace just to make it stronger. I know this is all scary. Please
stop by the hip-baby group and post to the parent there also. Many
have gone threw these cast. In a baby, they are known as bachelor
casts. Some may even send you a picture. You will see these kids just
bounce along. The big thing you will find as this goes, the pain will
stop in your child when the hip is held in position. I think that
should help you deal with this. No pain in favor of the casts. Brian

Hello,

I am new to this group. My 2 year old son was diagnosed with Perthes about 6 weeks ago. We are scheduled for our 2^nd appointment at Gillette early on Thursday morning. Last time we were there, the doctor told me that if I could not control my son's running & jumping that he would put him in leg casts & give me a wheel chair. I am doing the very best I can to keep him calm BUT it doesn't always work. He is a VERY active little guy & has 4 siblings to encourage him. This week he has been jumping down stairs, off the couch, chairs, etc. He has really great days & then terrible days (as far as pain goes). Some times he is trying to run & jump nonstop! Other days he is in such pain that Motrin won't even help & it's a struggle to even change a diaper. I really don't want to deal with leg casts but I'm worried that he is going to really hurt himself! I saw some pictures of children wearing removable leg braces. Can anyone give me an idea of what might be the best for
our situation?

Thank you!!!

Mom of 3 young boys & 2 young girls, MN

I have to agree with Donna. Sometimes we all need a laugh at the end
of the day. This one is on me. Well actually Jonathan.
I am sure most of you have seen the commercial for Levitra. The one
most frequently on tv is the one where "Tom" is diving into the pool.
Yesterday Jonathan saw this commercial and due to the sophistication
of the wording (LEVITRA is a prescription medicine that is used to
treat erectile dysfunction (ED). Men taking nitrate drugs, often used
to control chest pain should not take LEVITRA. Such combinations
could cause blood pressure to drop to an unsafe level. As with all ED
drugs, there is a rare risk of an erection lasting longer than four
hours. To avoid long-term injury, seek immediate medical attention )
he had no idea what it was for only that this man was taking it and
jumping in the pool and comes up smiling. Anyway's, after the
commercial he asks me if he could get some of that Lebitra as he
called it and then he would be able to stay in hydrotherapy longer
but not longer than four hours. My mouth dropped to the floor and I
couldn't help but laugh until I nearly cried. I then explained to him
that it was for older men that couldn't get up and go as easy as a
young boy like himself and he didn't need medicine to help him. It
was very awkward so I wasn't great at explaining but it done the
trick. I crossed my fingers hoping he didn't ask the therapist today
about Lebitra.
On that note, I am going to get ready for bed. My oldest Michael is
having dental surgery tomorrow in which he is being sedated and I
have to get up early to be in Asheville by 9:00.
Take care everyone,
Sandy Jennings NC

Call me a sceptic, but I just can't imagine what speech would have
to do with perthes. Connor's speech is fine, and he is not lagging
at all developmentally. In fact, if anything, he is ahead for his
age.
I also read a few articles about second hand smoke. I wonder how
they have come up with that. Connor is not exposed to second hand
smoke, we do not smoke and he is rarely if ever around anyone
smoking.

I am new to the group. My 5 year old has been diagnosed with Perthes.He
has it in both hips.We started going to shriners hospital last year
that is when they said they thought it was what he has going on. He was
limping and complaining of pain with over use. He has has speech since
he was a year old so is there some connection between the two? How
strange. I am hoping to chat with some other parents that have this
going on with there child. Tina

Welcome Tina,
Shriners are wonderful, my son goes to Lexington, Ky. We are in southern Indiana and travel about 2.5 hrs, but it is worth it.
Dyan/Paul(6)

Have you considered seeing a nutrinionist to help you come up with a suitable diet? Good luck and Ill keep my ears out for anyone who can help.....

On 11/12/07, Brian Baker <bbaker904@...

Now i have the fun task of trying to figure a diet for myself. I have
no contacts with any nutritionist. So many things I can't eat because
of my ulcerative colitis like high fiber and uncooked veggies. I relied
on fruit. Now I must avoid Bananas, Kiwi, and others with latex
reaction connections, and no nuts because of both. I'm picking my brain
because one doctor said my triglycerides were 3 times above were they
should be. What's left, Bread and water??? LOL Any of you have a friend
that can help, please let me know or pass on my email address. Brian

--
Dave Penland

We are lucky, hardly anyone uses the pool. It is not located at the
Y, they use another pool and no one really knows about it. Sometimes
we are the only ones there or there are ten people at the most.

Now i have the fun task of trying to figure a diet for myself. I have
no contacts with any nutritionist. So many things I can't eat because
of my ulcerative colitis like high fiber and uncooked veggies. I relied
on fruit. Now I must avoid Bananas, Kiwi, and others with latex
reaction connections, and no nuts because of both. I'm picking my brain
because one doctor said my triglycerides were 3 times above were they
should be. What's left, Bread and water??? LOL Any of you have a friend
that can help, please let me know or pass on my email address. Brian

Sometimes you can find pools that do special hours for kids with disabilities (here's an example of a page from MN: http://www.lifepages.org/rec/search1.asp?categoryid=22&categoryname=Fitness).
Or you might be able to find a therapy place that has a warm water pool (maybe with a local hospital or clinic that does water therapy as part of their rehab or PT programs). Sometimes they do community hours, sometimes they have PT available with a doctor's order, sometimes they have after-care services for people who are done with PT but still would benefit from the pool.
Our Y also offers community swim time but one thing to watch out for--our Y becomes a zoo when that happens, and it can get really crowded. I've worried about kids running into my son or there just not being enough room for him to really "swim" when the pool is that crowded.
Good luck!
Karla/William (6)
Dana Burkett <burkettdana@...

Try a YMCA if there is one close to you or you can also try a local Gym that has an indoor pool. Sometimes the will waive the startup fees if you can get a letter from the Dr saying why she needs the water therapy.

Our YMCA offers a swim pass, you do not have to be a member.
There are limited hours when you can use the pool, but its a great
deal. Connor has been going 3-4 times a week.

Brian,
Is that you? You better be careful.
Dyan/Paul(6)

Hi, try the local YMCA, sometimes a PT can get you into a pool for threapy also, depends on your location. Good luck!

On 11/12/07, k_hall_78 < k_hall_78@...

My daughter just had surgery two monthe ago. She is 8.I want to get
her in some kind of swimming class on open swim so she can feel
normal. But its winter,and the swim team costs too much and I think it
will be too hard for her. Any sugestions?

--
Dave Penland

My daughter just had surgery two monthe ago. She is 8.I want to get
her in some kind of swimming class on open swim so she can feel
normal. But its winter,and the swim team costs too much and I think it
will be too hard for her. Any sugestions?

At the top of the group, I give a descriptions of the group. There is
another form of a perthes disease called Meyers Dysplasia. Meyers
Dysplasia is a late developed femoral head and socket. Loss of blood
supply is seen and the head dies away. This happens in children between
18months and 6 years. Just like perthes, Wait and see is used with no
intervention needed unless it's an older child with flattening of the
head or dysplasia develops. Sound like they should have called perthes
this instead of calling it a disease. If anyone joins with this
condition, it is the same as perthes from start to finish. The only
thing different is known cause. On an xray, the head looks smaller and
more round. The bone may look a little fuzzy and the socket too. This
is from delayed ossification. Out side of that, nothing else is
different. Brian

Ouch Brian. That is what was all over you? Thanks for sharing that. Is
it going away? Call me if you want. Jacob says hi. Terry

Katrina,
We have had Tanner in Speech since he was 2. He is much better now. HOwever we had him tested at our PT facility and he has low muscle tone. I found it funny because his low musle tone is not only in his legs, arms but also his mouth.
Alice

Oh and he is extremely allergic to mosquito's and bees!!!

Because this is a life threatening problem, I made an album and posted
a picture of what the reaction looks like. If you ever see this, let
your doctor know. This is what I had develop and spread all over my
body. It's been 48 hours and is finally going away. I still have those
circle patches on my upper legs and a few still on the back of my upper
arm. Please look at the photo so you can see this type of reaction. Any
exposure I have again could cause this again or even kill me with an
anaphylactic reaction. Brian

I can remember my parents telling me about issues like this when I
was 5. I had problems pronouncing words with F and S sounds. It went
away after trying harder to pronounce works correct after my sisters
and brothers made me re-say things. It is normal for 4, 5, and 6
years old to have this problem. Now I had dyslexia undetected until I
was in my teens. By then I had learned how to handle it on my own by
re-reading letters more than once and trying to make a picture of
what was wrote in my head. That's what gave me issues into adulthood
and still today. If someone writes something not direct to a subject,
I have a harder time understanding what they are asking. I had to get
Donna to re-write something to me because of that. But for your
point, you could line up a full class room of 1st graders and I would
bet half have issues with F and S sounds. Brian

I know we have all had this conversation many times. And it is
really to much for any of us, to contimplate on our own, with out
scientific study...like an actual survey of all the children with
perthes, and other semi-odd symptoms of other things that
seem to come and go through out...Like a few of us have
children that seem to be "allergic" to mosquito bites, we have no
other friends or family with this problem, but both of my boys
swell hugly after bites, no matter what numourus treatments we
have tried...I can remember a few others But, I was wondering if
any other children have speech problems. I plan on including
some speech therapy in for Ashton here, soon. He has
problems with his S's & close tounge sounds...He is better, but
now it seems more a habit. I have talked with our doc, and ear
doc. about this numerous times, in the past, and they all said he
is just young and still learning...What made me think of this, is
Ashton's cousin, also diagnosed with Perthes, has always had a
speech slure, pronunciation delay...Just curious if any other
children here, might have that issue...
Katrina & Ashton (5)

In a message dated 11/11/2007 8:11:34 A.M. Eastern Standard Time, jolu2718@... writes:

would you mind e-mailing me the name of your dr? I'm finding that so
many dr.'s are familiar and knowledgable about this but really
haven't had first hand treatment of it.

Am I allowed to post the Doctors name and phone number on here. If I can't let me know and I will send it to you privately. Thanks Michelle

My son has had Pethes for almost 3 years now and the one thing the doctor has let him do is crawl. He is non-weight bearing and contained but can crawl to the bathroom. The one thing our Doctor did not approve of, he did not like the fact of him being around a lot of other rambunctious children. I workout and we have a playroom where the children play, I had to stop taking him due to, to many children. It has to be your decision and we chose not to put Tanner in situations with lots of children and once where he would be tempted to do other things than just slide... :o)

Oh and although we were very cautious with our son, on his birthday 9 months after his DX his head split right down the middle and collapsed. My personal opinion, it's gonna do what it's gonna do but you can help in the way it does it.

Alice and Tanner (almost 7)

A handy online tool for creating a family health history. Information is stored on your computer not the website.
https://familyhistory.hhs.gov/
Thought some of you might want to check this out. Our doctors will thank us! [INLINE]

Rebekah

An extra little chromosome,
that's all it is, you see.
Where all of you were born with two,
She was blessed with three!

www.nailnwirecrosses.com

Handmade w/horseshoe nails

and wire in Oklahoma

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He's been doing physical therapy for 3wks now. I thought his range
of motion seem to be improving.. the only thing i'm thinking is this
week his usual therapist wasn't available. He has someone new and she
did a few different things with him. than his next appt. was 2 days
later. which normally they span it out at least 3 days in between ..
So i was hoping that imflammation was maybe caused by too much
activity in short time???
would you mind e-mailing me the name of your dr? I'm finding that so
many dr.'s are familiar and knowledgable about this but really
haven't had first hand treatment of it.
thanks again..

That really shouldn't be a problem. When the hip is flexed 90degrees
for crawling, the lateral side of the hip is partialy covered by the
socket. That should be all right. I would just watch the landing at the
bottom. Brian

Did you son get some PT. I know my son had horrible ROM and we went to PT 2 x a week and it help him a lot. He couldn't even open his legs enough without pain for me to carry him on my hip. We are from NY and we use a Dr. at the Hospital for Special Surgery. My son has been going to him for 3 years. He seems to do everything he can before he goes for surgery. Jonathan is just now getting surgery. I just called last week cause I wanted to know what it was it they said Bilateral Epiphysiodesis.(hope I spelled it correctly). Jonathan is 9 and was diagnosed when he was 5 1/2.

Man Brian, that sounds irriatating, you take care! and thanks for
the warning!!
Katrina & Ashton

Connor was invited to a birthday party at a place that has the tubes
that you crawl in. Right now, he is in the early stages and is
restricted from running and jumping. Do you think the crawling puts
pressure on the hip joint or is it fine to do this activity?

Most of you know about my medical history. Every time in in a hospital
being examined, most of the medical personal wear latex glove. For each
time your touched by these gloves you body may react a little. I have
seen allergies to latex develop years later. Always watch for red
raised skin after being handled with the gloves and take a look from
time to time at a child's lower legs after wear any rubber boots. I
think this is my issue right now. I stayed at a motel the night before
my doctors visit. The bed had a waterproof mattress cover. I felt my
skin irritated when laying down. I reached under the sheets and removed
it. When I woke in the morning, my wrists and palms were very red and
itchy. During the exam the doctor pressed on my lower gut with latex
gloves on. By that night, I had a strange rash that spread from my
lower belly to areas all the way around to the back of my legs and
butt. The rash on my wrists spread up my arms to my arm pits. The only
thing I can think of that caused the rash is latex contact. I've always
had a slight reaction because I had so much contact with it. But never
this bad. I feel like I have poison ivy. The large red raise areas that
were round merged together. The skin looks smooth but is red and itchy.
Brian

Do you mean "bed rest" as in zero impact...wheelchair use?? This is
typical it seems when things start to progress (diminished ROM and
fragmentation of the bone) in order to protect the cartilage...the
cartilage needs to stay rounded, so later when new bone grows it
grows rounded, so it fits properly into the socket. If he walks on
it, it could callapse the cartilage too, then not have a round ball
joint in when healed. I would be cautious of the Advil...my sons
doctor (Dr. Kim- Shriners Tampa) told us NO
Advil/Motrin/Ibupofen...it can decrease bone growth!!!! 3x times a
day is A LOT...you may want to consider an analgesic like Tylenol.
Our first orthopedic surgeon suggested Motrin...we were shocked when
Dr. Kim said ABSOLUTELY NOT!! It is a HUGE learning curve...do your
own research...don't take the doctors advise at face value...get
second or third opinion from Perthes specialist. Wish we had...my
sons femoral head may not have collapsed if we had gone to Dr. Kim
earlier...he was walking up until and after his first tenotomy...and
he is on the heavy side...so this may have caused his head to
collapse, and now re-grow in an ovalish shape.
Kate and Jacob H.

We see the dr. every 2wks.. since our last visit my sons pain has
almost diminished and his limp greatly improved.. there has been no
physical activity except minimal walking. He's had aquatic therapy
3x's a week.. So i thought things were improving or at least not
getting worse..
Although Wed. night my sons limp got worse again and he was
complaining of pain.. I kept him home from school thursday and put
him on bed rest .. At our Dr. appt. yesterday the Dr. said he did not
like the way the range of motion looked.. He thought it had gotten
worse since last visit.. He is now on complete bed rest til next
friday when the dr. wants to see us again and Advil 3x's a day.. Said
he has inflammation.. At the next visit he will determine whether
range of motion improved with bed rest and Advil or if we should
start thinking about a lengthening surgery and casting..... My son
is 6 is was just diagnosed 4wks ago..
I'm so confused.. The dr. explained everything to me but of course
retaining all that info in such a short time is hard. Is he right to
want to think of surgery? what does all this mean? I guess i wasn't
aware at how things could change in just 2wks...
Any insight and info would be greatly appreciated..
Thank you..
Kathy/Luke

Good Call Brian, I had no idea, it is just habbit for me now, to
copy & paste it, but it adds a lot to the post as well, on mine!!
Yikes, I dont like that myself, and had not noticed...Ours is full of
what would be topics though!!! I appriciate you sharing that!
Katrina & Ashton

I want to pass this on to my members. If someone new comes to the
group and tries to do a topic search, every message that has any
wording in the search will come up. So those of you that sign with your
history, it blocks all the topic messages because every message you
write that includs those word will come up. I will give an example.
Someone wanted me to forward helping with petrie casts. I did a topic
search and every message signed with petrie casts came up and I
couldn't search for previous posts. I hope you understand. I like
seeing the history, but maybe save that for special messages only. Your
call. Brian