Legg-Calve-Perthes Disease: Elliott's Battle

25/04/2024

Great follow up today with Elliott’s specialist. He is still in the regrowth stage. His leg length discrepancy is around 1/2 an inch. He doesn’t wear a lift and isn’t having pain. The doctor didn’t recommend surgery to fix the discrepancy. 🙌🏼 Looking at his current x-ray the shape of the regrown femur isn’t exactly perfect. His doctor said the shape is a normal “Perthes” shape. He cleared Elliott back to full activity which he was thrilled about!! (The last 12 months the doctor wanted him to avoid competitive sports and “rest” the hip as much as possible.) Perthes is definitely a journey of ups and downs and today was an up!! 💙💙

07/04/2023

Well Elliott had his six month appointment last week. The doctor noticed from the x-ray that there are certain parts of the bone that are not regrowing correctly. He ordered an MRI. After looking at the MRI (which shows more detail) he had concern that his activities are causing too much impact and are affecting his regrowth. This lesion on the bone can cause the bone to heal in the wrong shape and cause more problems/pain down the road into his early 20’s.

He has been released to full activities for 2+ years and has been playing baseball, basketball and football with little to no pain. Unfortunately the doctor would like him to take a while off from organized sports again to see if the bone recovers/makes improvement in growth. So no baseball this summer. My heart hurts for him but we will follow the doctors orders.

The doctor also is watching his leg length discrepancy. Since his last appointment in September, it has gotten significantly worse. Elliott’s doctor does have concern that he may need surgery to slow the growth plate in his non affected leg. This will help to “even up” the length of his femurs and decrease long term effects of one leg being significantly longer than the other.

So this is the only photo I will get of Elliott playing ball this year. It’s easy to get down in the dumps over this, but if anyone can stay positive and show perseverance, it’s Elliott!!
💙💙💙💙💙💙💙💙

18/01/2022

So proud of Elliott sharing his Perthes story in our local magazine!! 💙💙💙 He is definitely one to watch.

As a spunky 7-year-old, Elliott King was ready to take on the world. Like other kids his age, he spent his days riding bikes, playing ball games, and running around…View Post

15/08/2021

Back from the beach this week and Elliott had his yearly checkup with his Perthes doctor. His x-ray showed much more positive re-ossification (bone growth) in the femoral head. Dr. Shoenaker also commented that the shape of the femoral head is perfect for the socket and he is very happy with it. They checked his range of motion/abduction in both hips and were very happy with how he continues to be very flexible.
That being said, he does have a leg length discrepancy. ☹️ We had noticed he tends to limp when he walks. Well, one leg is longer than the other so that would explain it! The doctor said since Elliott had such a bad case of Perthes, he would have almost expected the LLD. The growth plate in his affected hip was disturbed in his treatment and that has caused it. For now, they gave him a lift to wear inside his shoe. At this point, he’s only 1/4- 1/2 an inch off. The doctor explained that as he grows, the discrepancy MAY become worse. If that is the case they will need to perform a procedure around age 14.
I had read that Perthes kids are more likely to get scoliosis. Doctor said everything looked great with his spine.
We are about 4 years since his diagnosis and we are happy Elliott’s re-ossification stage continues to go well! I pray every day for those kiddos who are just starting their Perthes journey. Hang in there, it does get easier. 💙🙏🏼

22/06/2021

We are four years past Elliott’s Perthes diagnosis!! He is playing 11U baseball this summer on a competitive team. He catches quite a bit and is able to squat and jump up from a crouched position pretty easily. His hip does get sore after games but nothing severe. We have used ibuprofen, a warm bath and rest and that seems to help. We have noticed he walks with a limp and wonder if he is beginning to have a leg length discrepancy. He has an appointment with his specialist next month and will ask him to look into it.

03/07/2020

Almost 3 years from the day he was diagnosed, my boy was given the all clear to run on the field and play ball!! He had a LOT of fans cheering him on!! Elliott is over the moon excited to get back to the activities he loves and being active again. What a long journey (not completely finished yet) of faith, patience and determination this has been for our boy!! Dr. Schoenaker at Schriners STL was comfortable with the amount of regrowth he sees on Elliott’s last x-ray and is very pleased with his range of motion. He has no restrictions at this point and will go back to his next appointment this fall. 💙🙌🏼🙏🏼💪🏻

03/07/2020

Elliott’s last appointment was all good news!! The doctor was pleased with his bone growth over the four months between appointments. We do his stretches daily and he wears his a frame brace at night while he sleeps. He has had no pain with the light walking he’s been allowed to do over the last few months and his range of motion continues to be excellent. His doctor likes the shape of the cartilage line he can see on the scan and said the bone will grow in that shape. After almost 3 years into this journey, Elliott has been cleared for running and jumping!! 🙌🏼💙

03/07/2020

This shows Elliott’s regrowth when he finally reached the regrowth stage in his Perthes hip. The changes were very subtle on his x-ray at first. Small areas where more white was showing up is the bone regrowth. Our last x-ray showed much more bone. His doctor was also very pleased with the shape that his bone was forming. His range of motion has been really really good throughout his Perthes journey.

27/11/2019

Elliott got his rare bear this morning!! Thank you rare science, he loves it! The camo is perfect for him. 💙

13/11/2019

Just keep swimming. Swimming has been a God send to Elliott and his Perthes journey. It’s a great way to keep him in shape, be part of a team and help his range of motion. Tonight at swim team he swam over 30 laps. He was tired and ready for a slushee

10/11/2019

A rare and special gift, just for you, this holiday season! 🎁 Perthes Kids Foundation is proud to partner with RARE Science Inc. to give Perthes Kids around the world, their very own, complimentary, Rare Bear! 😮 Whaaaat??!! For more information just go to pertheskids.org/rarebear! 🐻💙

24/10/2019

His first attempt at running after his appointment. He had forgotten how, but he’s gotten a lot of “practice” in today. We were given lots of stretches to do to improve strength in his right leg.