.Update 6/21/2008
It's been a while since I updated, SO... We went to see Dr. Robert Bernstein at Cedars yesterday. For the last year and a half we have only had to go every six months for check ups. Tony has a 1 inch defisate (sp?) in his left leg. He did have a lift in his shoe, but the call of Vans shoes proved to be to great to resist for a 14 and a half year old boy, so he took the lift out because it didn't fit into his shoe. While at the doctor's office yesterday, they did a bone age scan. We found out that he has a bone age of 13 years, 3 months. We always knew he was the smallest in his class, but didn't know why. Dr. Bernstein said that the this is an early symptom of Perthes Disease. In other words, his bones are almost 2 years younger than his actual age. So, we go back to the doctor on September 22, 2008 to schedule yet another surgery. This one will slow down the growth of the right leg (the longer leg) so that his shorter leg will catch up. They slow down leg growth by orthoscopically drilling out spaces in the growth plate of the right knee. This is the least invasive of our three options and the only surgery that is done on an outpatient basis, the other two options require blood transfusions, much longer hospital stays and months of physical therapy. The end result is that when Tony is finished growing, he will only be 1 inch shorter than he would have been normally. This has been a long three and a half year journey and it's not over yet. He is still working on starting a research foundation (which I still haven't finished the legal paperwork for, DOH!) to find out why this affected him and no one else in our family. There are only two researchers here in the US that study this disease, and we have only seen 1 other kid (recently, while mother's day shopping) with his legs casted like Tony. This disease is much easier to treat when it's found early.

First UPDATE dated about 9/4/2005!!! Tony got his casts off on Sept. 2...finally. He was supposed to get them off on the 25th of August, but the surgery scheduler at his doctor's office "forgot" to put him on the schedule and then quit his job. So, after many phone calls we finally got him bumped up to the front of the surgery line for tomorrow, the 6th of Sept. They are going to cut his femur at the trocanter and reposition his hip so it sits deeper in the socket, plates, pins and stitches, and we start on the road to recovery with a minor surgery in about a year to remove the plates and pins. Tony is going to be at Cedars-Sinai for 2 days.
Our daughter Hannah is having surgery at Children's HL.A. on Wednesday (the 7th) to correct a problem with her uretars (the tubes from her kidneys to her bladder) She has been under treatment since she was 4, (she's 10 now)but she is one of the 15% who have this that don't grow out of it, hence the surgery. It's a good thing that the hospitals are not too far apart since we will be going back and forth. Thanks so much for your prayers

Kimberly

This is what started this thread dated about 2/15/2005
My son grabbed his first fist full of throttle and wiped out over President's Day Weekend. The quad took the brunt of the damage, with the sand being so soft he did nothing more than fall on his butt. About a week later, he starts to limp. Cuzzin Eddy and I ask him what's up and he says nothing. So, we get to thinking that it must be some cool new way to walk like a thug or something. Tony asked to go to a school dance the Thursday before Valentines day. Everything was good until later that night. He started crying and was in intense pain at 3 a.m. Cuzzin Eddy took him to our Ped. to see what was up and that turned into a day of CT scans and x-rays with an appointment made to a pediatric orthopedic surgeon at Cedars-Sinai on Valentines day.
He was diagnosed with Legg-Clave'-Perthes Disease. His hip is falling out of the socket and the blood supply to his leg is disrupted, causing the bone to die, break off and then regenerate. All the while hogging out his hip socket. He has physical therapy twice a week for the next two months. If there is no improvement, then they will cast him from the waist down, with a bar between his knees for 4-6 weeks. If that doesn't help then they will do surgery to realign the hip joint to the socket. He will have arthritis for the rest of his life, and will have a hip replacement by age 30, and he will always have a limp.
The cool thing is, that Dr. Robert Bernstein (the Ortho) encouraged the riding of the quad, because it forces the hip into the socket, as long as he doesn't try to get a fist full of throttle and try to get more air than his cousin Thanks for listening.

I have never heard of anything like that before. Thats horrible. I hope they can do some medical miracles and fix his leg up. I also hope he can avoid the hip replacement surgery at such a young age.

Best wishes and prayers from the Coobie family.

OMG... glad to hear it sounds like you all are in good spirits... I've never heard of this before. Is it hereditary or do they know how/why he has it? Thoughts & prayers.

[quote=groundhog,Mar 28 2005, 08:37 AM]
My son grabbed his first fist full of throttle and wiped out over President's Day Weekend. The quad took the brunt of the damage, with the sand being so soft he did nothing more than fall on his butt. [/quote]

And It was an incredible wipe out......

[/quote]
The cool thing is, that Dr. Robert Bernstein (the Ortho) encouraged the riding of the quad, because it forces the hip into the socket, as long as he doesn't try to get a fist full of throttle and try to get more air than his cousin Thanks for listening.
[right][snapback]921063[/snapback][/right]
[/quote]


to the ortho for the encouraging of riding.... As far as not trying to get more air than the cousin.... well we all know how competative those boys are They got it naturally.....

My prayers are always being said for the most positive outcome...

Sorry to hear this. But on a good note.... I work here at good ole Cedars. If you need anything lemme know and I will see what I can do for you.

Wow Sorry to hear that...Our Thoughts and Prayers are with him

If there are ANY financial issues involved with his care.... I work at Shriners Hospitals for Childrens. We only do orthopaedic and plastic surgery here for children... FREE OF CHARGE. It is a privately funded hospital that does not take a dime from government. Our medical staff is excellent and don't ever think that because it's free our surgeon's do second class work.

Our phone number is 213-388-3151 and check it out on the web at

www.shrinenet.org

our mission here is to help children... no questions asked....

hope we can help in any way...


Sincerely,

Sal

OMG thank you all for your kind words and offerings of info. Yes, we are in good spirits, we try to make everything funny or else it would be really depressing. They don't really know what causes it. No one in my family or the Cuzzin Eddy/Beachhead/Scataloni crew has had anything like this. It's just a fluke thing. He was born with this and we never knew until now. I remember his ped when he was a baby always checking his legs, flexing and rotating his hips. It just didn't interfere until now. I guess his having his first real wipe out was a blessing or we wouldn't have known until things were really bad. For now there are still options. And to have a Dr. who encourages the dunes is really cool. We'll see what happens next month at his next visit.

If you guys need anything Let us know

Wait, i have a question, how does that affect him? Is it only a limp or is there somthing else? For the last 5-6 years or so, i have had some sort of hip problem...it is a loud, somtimes painful poping of my hips. just curious, ive been wanting to go recently, but never sucked it up enough to go to the dr.

Groundhog,
I registered for this sight based on your topic. I am 32 years old and was afflicted with this disease 30 years ago. I can provide you with tons of information as well as my life experience. My parents lost their minds when they were told I would not walk after 8 years old. They found a doctor at Childrens Orthaepedic Hospital in LA. He performed three or four surgeries and reversed the disease almost completely. How ever you can e-mail me or PM me and I will be glad to speak to you. You can also call me, but I don't want to put my number up here. Just a bit of reassurance for you.. I played a ton of sports through high school, fought as a US Marine, and have been a cop for 8 years. Get up with me, we'll talk.

Welcome to our great big expended family. That's what it feels like with all of the well wishes and prayers and helpful info.

We're all pullin' for him, he's got a huge family behind him now.

You may want to also PM bhobbs. His oldest daughter has had surgery to fix her hips, another to rotate her femurs and her last surgery will be next month to rotate her ankles. Anyway, she is an active girl, she runs everyday at school and rides a 90. I don't know if she has the same condition, but it sounds similar enough. Just wanted to give some encouragement, kids are resilient. Please keep us posted. I wish him the best.

Groundhog forgot to mention that she sent me to take the boy to the Dr.'s office that day, since I had an appointment anyway. convenient huh? Anyways, I was fasting from the night before for a cholesterol test and didn't get my blood drawn until after 2p.m. and the boy and I were passing out from lack of chow. And she wouldn't stop calling me on her nextel asking questions. Like I could think at that time. Thanks for all of your good thoughts and prayers for our family.

I sort of had a similar situation. My toe next to my big toe, on my right foot, well the bone started deteriorating. Going away on its own, disappearing, wearing out that was the word. Well the bone started to wear out and I started to have NO bone in my toe, sort of how your hip bones rub together and causes you to have a hip replacement, sort of like your son. Well we didn't understand how the heck a bone can just deteriorate on its own, when all i do is walk on it. So it was kind of hard to find another reason as to why it happened to me. But it is very rare to happen in kids my age, VERY RARE, and I happened to get it! So I was off my foot for 5 months, and even after that it had barely started growing back, a bone growing back, sooo freaky and wierd. But yeah, that happened to me, so I hope your son gets better and feels better! The best of luck.

Just to let you know, tony starts physical therapy today. He goes back to his orthopedic surgeon on May 16. On that day, they will decide if he gets casted from the waste down for 6 weeks. so, keep him in your thoughts and prayers. Let's keep him riding his quad.

Kimberly

Prayers are on going. Hoping the cast never happens.

Groundhog, as KFX4ME said, Bhobb's daughter is our god daughter, and she went thru this same thing when she was 5. Luckily they caught it before she actually had it pop out. When she had her surgery, she was casted from her nipples to her toes with that bar between her legs. Terrible to see such things happening to kids....breaks by heart. But also as she stated, she has had 2 surgeries with another scheduled for next week. This should be the last......we hope! Good luck with your son's surgery, our thoughts and prayers are with him.


Chris

How did Tony do at therapy today?

I hope he is tough and does all he can. Keep us posted on his progress and be sure to let us know if we can do something to help out.

Tell Tony Uncle Bob & Aunt Kathy are praying for him and are there if he needs us.

kat

thoughts and prayers all around.......

Tony did well at therapy. He was tired and sore afterward, but, he's a tough little monkey. He didn't cry or say "I can't", which made me proud. He has exercises to do at home ( and in the moho), but he sees his therapist two-three times a week. I'll keep you updated. Thanks for the thoughts and prayers

Tony wanted me to add this...

p.s. we are setting him up in young guns, his board name is CerealKiller.

Good to hear he is being strong. Keep us all posted......


Now CerealKiller needs to get to work


And as you know our family continues to say prayers for the best. Any time, anything all you gotta do is holler. We will drop everything to help.

my brother had/has this problem too. he is 26 and has had a full life. he got it when he was 5 y/o and had the surgery with the cast and brace between his legs. my family has gone through the same thing and our prayers are for your family. my brother has gone through high school and played baseball, wrestled and played football without a problem. he does limp from time to time but his hip has not slowed him down at all. he has played baseball since he was a kid and rode three wheelers, and now on a motorcycle.

good luck and keep the little guy in good spirits.

*note: from my knowledge this is not hereditary but it usually happens to children in the first 5 or so years of life if it does happen. i dont know too much more than this.

Groundhog - sorry to hear about your son. Perhaps there is a good chance therapy will work for him. My son also had Leg Perthes Disease when he was five. When he starting limping, and we went to the doctors, he was in casts within a week, so maybe the disease was discovered much sooner in your boy's case. My son had casts on both legs - bar inbetween - then the surgery. but by the next year he was back running with the other kids like nothing happened. email me if you want more info. glamismary@yahoo.com

M.

Hey Groundhog & Cuzzin Eddy, how's CerealKiller doing? Hope he is keeping in good spirits...

Just to let everyone know, Tony is getting stronger every week. But, physical therapy is work and he has good days and bad. Today was a bad day. He was hurting, so he's all hopped up on the anti-inflammitories/Motrin. We go to the Orthopedic surgeon on the 16th, so, wish us luck.

Good Luck

We went to the DR. yesterday and the news was not good, not the worst case scenario, but never the less, not good. gotta go, i have to explain the situation to the Grandpa right now. I'll be back

I had never heard of this Leggs-Calve Perthes Disease until reading this thread.

What a scary thing for your family and your son.

We have two sons, 16 and 19. No one tells you what having a child truly means... or that the infant years are minor compared to what your heart will go through throughout their lives.

Reading these posts it's obvious that you are strong and that your son is strong and that, no matter how challenging your roads ahead are, your family will be fine.

Our thoughts and best wishes are yours.

Vicki

thank you all, The Dr. gave us untill July (after St. Anthony) before any thing will happen. If your going to St Anthony over the Fourth weekend come over and give the little slugger a thumbs up, he will love the attention(he's Beachheads nephew)

he sounds a lot like his father.......attention HO.......thoughts to the little homeeee....

One tough kid for sure. So like his dad and uncle. Prayers said continously.

Okay, here is the story. Tony has until just after St. Anthony's to cram all of the fun in that he can. After that, well, that's a different story. In the last three months, the bone has deteriorated drastically. He will undergo an orthogram. They will inject dye into his hip socket (he'll be asleep) to see if the cartilege is as badly damaged as the femural head. They will then slice his groin muscle in order to move his left leg into the proper position to be casted with the bar between his knees. He will remain like that for 6 weeks, going to the Dr. every 2 weeks for check-ups. After giving his hip bones a rest, he will then have his pelvis on the left side sawed in half and repositioned, forcing the joint in the socket. Then he will have to learn to walk again.

Because this was found at age 11, he will have difficulty for the rest of his life. When it is found in children under age 6, they are usually fixed pretty quickly and back on the road of life with little stopping them. Tony was born with this, with no symptoms for 11 years. Once the bone was hogged out so much, he started to limp and have pain, and this only happened three months ago.

He has a really great attitude about this and looks at the brighter side, at least he has is life and is otherwise healthy.

Thanks so much for your encouraging words and prayers.

well it sounds like they can fix him up, so he can play another day....

Update on Tony

He is having the first of a few surgeries on July 14th. He will be in the hospital for three days. He still goes to physical therapy twice a week, and is in really good spirits. He wants the handicapped sticker so we can get all the good parking places. He is an inspiration to me because he is so positive. I want to be like my son when I grow up.

Kimberly

good to hear he is taking it so well...guess we will be seeing you in about 2 weeks...OH and by the way, YOU? grow up?

Well we are back from Tony's procedure, and it went better than what was expected.... Well mostly. First, of our surgery time was pushed from 7:30 AM to 3:00 PM, which turned into 4:30PM. And Tony wasn't supposed to eat after midnight the night before. After only one hour Dr. Bernstein came out of the operating room smiling with an x-ray in his hand. He said that as soon as Tony was asleep they moved his left leg to test his range of motion without Tony fighting because of pain. His hip popped back into the joint. Dr. Bernstein then injected dye into the joint to see how extensive the cartilege damage is as well as bone damage. I think it really helped to suck up to the Dr. before the surgery. My wife (groundhog) made Dr. Bernstein a scrub cap with SpongeBob on it, and I downloaded a picture that IFLYCR500 took (thanks again Mark) of our famous SpongeBob flag. Dr. Bernstein is a huge SpongeBob fan incase you haven't guessed.

Tony will be casted for 6 weeks, then he will have to have bones cut and repositioned. But for now, things are good and pain free. He said that his leg feels better than before, except for the itching of the casts. In the mean time, my wife and I are starting a new workout regimine, the lift and carry of a 95 pound kid with casts and bars, talk about a workout!

Thanks for all of your thoughts and prayers.

Woot - Woot............. Prayers are being answered.......... Good to see that boy smiling. Now we need to see mom and dad.... Are they smiling...


and here is another pic of the Famous Spongie flying in Idaho...

I am so happy that you had good news from the Dr.
We hope and pray that Tony continues to make good progress.

I wonder if Bob can round up a cherry picker to pick up tony like an engine.

I don't know how you move him room to room in the position he is in??
Im sure the doorways are a challenge.

Hang in there Tony!

Aunt Kathy

We were out to Cuzzin Eddie and Groundhogs place yesterday, Tony is doing great. He is his normal self. Here's hoping the next six weeks go by with lightning speed and with the best possible results.

Is it wrong that I just laughed at my lil cousin in that goofy position?


I'm so happy to see Tony is doing good. The look on his face says it all. In our family, you learn to laugh at other people's misfortunes with the hope that some day they will laugh at you. I think its our backwards kinda support system. ... I miss you guys!!

But seriously, I'm very relieved. I couldn't believe it when mom (also known as cat lady with Tigre wearing a tiara in her avatar) told me what was going on with Tony. She explained it as a 'human version' of hip displacia. Way to go with words mom haha. Anyway, lots of love to my lil cousin and fam.

This forum has really brought my family together from the Glamis trips that they go on. I'm glad its more than just riding dunes and is supportive of their members through hardships.

Post numbah 1!

... I like smilies.





As requested by my mother, I'm Missy. There, I've now introduced myself.

your a goof ball but still love ya

And what a good girl you are.....listening to dear old mom...

Welcome to the board....the beachhead clan just keeps getting bigger and bigger...

Good luck Tony, and who is this Missy person

Kenny, you just showed the whole board how old you really are....you can't read or remember who you are related to. I hope that your kids already have your "home" picked out, 'cause I think your getting a little senile

I have kids????

why not let your neices and nephews, or better yet, your YOUNGER siblings pick out the "home" for you instead? I'm sure they will give you pampers instead of depends and forget to change them so you get nice and rashy.

just trying to fit in the family you know

hahaha, you fit like a round peg in a square hole.... j/k



What kinda family would we be without you...