Perthes Timeline

06-02-2009 – Christopher is lying on the floor in his bedroom with excruciating pain in his stomach.  We think its a bad case of indigestion.

Side Note:  It’s the blood supply interruption to the femoral head.  We had no idea.

06-11-2009 – 2nd attack of excruciating pain while at a sleepover at his best friend’s house.  He was swimming and couldn’t move once he came out of the pool.  Our friends made a pallet for him to lay on and Michael went over to check on him.  He put biofreeze on his lower abdomen and Christopher said he felt better.  We took him to the pediatrician the day after and was told it was constipation.

Side Note:  It’s the blood supply interruption to the femoral head.  We had no idea.

07-15-2009 – 3rd attack of excruciating pain while at a sleepover at his best friend’s house.  Once again, we took biofreeze and placed it on his lower abdomen and he felt better.  We took him to the pediatrician again and she told us it was growing pains.  We should get him to eat more fruits and vegetables.

Side Note:  It’s the blood supply interruption to the femoral head.  We had no idea.

02-26-2010 – We noticed Christopher was limping after a basketball game.  He also had these nervous ticks he did on the court.  We thought it was him just being silly.  It was due to the pain but he doesn’t complain.  He was side swiped by another opponent that forgot they were playing basketball and he tackled him.  He landed on his right hip really hard.  We thought it was just an injury from that play.

03-02-2010 – I was away at a Healthcare IT conference and had this feeling that Christopher needed to be seen by our pediatrician.  Michael took him in and the diagnosis was growing pains.

03-10-10 – I took Christopher to our pediatrician early in the morning because the limp is more severe on the basketball court and we can tell Christopher is in pain.  When you ask him about it, he says he is fine.  Dr. Gilreath orders an x-ray at Methodist Hospital.  I call her around 5:00pm because I expect the ‘everything is ok’ call.  She calls around 5:45pm with the news it is Legg-Calve Perthes Disease.

03-12-10 – We go to see the first orthopedic surgeon in the medical center, Dr. Brock.  He tells us it is a confirmed case of Legg-Calve Perthes Disease.  He doesn’t take new x-rays and said it wasn’t necessary at that time.  To come back in two weeks to take x-rays.  He informs of the various surgeries Christopher might need and writes a note to take Christopher out of PE and recess at school.  We are told not to let Christopher run, jump and take Aleve everyday for two weeks and for pain after that. Michael and Christopher almost pass out in the examination room.  Decide quickly this is not the physician for us.

03-17-10 – Go for 2nd opinion with Dr. Davino.  He immediately takes his own x-rays and says Christopher only has Legg-Calve Perthes in the right hip (this was wrong).  He schedules an MRI that day with contrast.  He thinks it may be Meyer’s dysplasia versus LCPD.  We are told to limit his activities so no basketball, recess or PE for the next six months and come back before school starts in August to see what happens.

Side note:  In Christopher’s medical records it states that his x-rays show he has flattening and abnormalities of both femoral heads.  However, we are told its the right hip involved and not both hips.  Letter to our pediatrician says ‘he is doing well and there are no orthopedic concerns’.

3-23-10 – Dr. Davino calls with MRI results.  He states it is more than likely Meyer’s dysplasia and he will grow out it.  He doesn’t suggest any therapy and wants to ‘wait and see’ what happens in 4 – 5 months.

8-18-10 – Go back to Dr. Davino and take more x-rays.  He says Christopher’s x-rays are a big improvement and releases him to full contact sports (even tackle football).  We put on the brakes and let Christopher go out for flag football even though he wants to do tackle.

Medical records say ‘ Whether his disease is Meyer’s dysplasia or perthes, the x-rays look better and his is asymptomatic.  I cleared him for full contact sports.’  BIG MISTAKE

12-30-2010 – Go back to Dr. Davino because I noticed he is limping again and going down the stairs backwards.  He is also very stiff.  We had more x-rays and Dr. Davino confirms that it is perthes in the left hip.  We stop all activity again.  In the midst of the emotions, I think ‘find the expert’.

Medical records say ‘Radiographs show the right hip is remodeling nicely, however the left is more consistent with Perthes disease today.

01-09-2010 – Found Dr.  Shawn Standard at the Rubin Institute of Advanced Orthopedics in Baltimore, MD from a Facebook blog and Sandi Foote.  Her daughter Rachel is the beautiful dancer in Dr. Standard’s video on the Perthes Resources page of this blog.  I didn’t find the blog; Stacey Davis-Egerton pointed me in the right direction.  I’ll be forever grateful to her for more than this but for being a true friend.  They are hard to find.

01-11-2011 – Sent Dr. Standard Christopher’s x-rays electronically.  He confirms that he has bi-lateral perthes with a longer involvement in the left hip and the right hip is just starting the process.

02-09-2011 – Travel to RIAO to see Dr. Standard in person.  Immediately schedule a core decompression, arthogram and botox injections to relax muscles for March. He is researching bone stem graft procedures.  Good news, Christopher has no limb shortening.

03-25-2011 – Core decompression, bone stem graft procedure (bone marrow), arthogram of the right hip with botox injections in both legs.  Christopher is the third perthes patient to have the bone stem graft procedure performed.

04-28-2011 – Our follow-up appointment for the 1st surgery and everything looks good.  We see white fluff on the right side so it time to move forward with the left.

04-29-2011 – 2nd hip surgery on the left side – core decompression, bone stem graft procedure (bone marrow) and arthogram.  Dr. Standard says the left side is in stage 2 of perthes – fragmentation.  We are praying this procedure worked and we can avoid the fixator.

08-15-2012 – Impingement starting in left hip.

01-04-2013 – Anthrogram of the left hip. Diagnosis: Labaral tear with thinning cartilage.

02-13-2013 – Head reduction osteotomy with Dr. Standard in Baltimore.

02-15-2013 – Femoral neck is fractured when PT moved him from the bed to a wheelchair.

02-16-2013 – Dr. Standard repairs the femoral head with three more titanium screws.

08-19-2013 – The left hip is sub flexing so Dr. Standard placed a synthetic ligament called a Biometric Zip Tight to hold the hip in the socket. Plus, removed two trochanter screws, released the adductor tendons and injected Botox.

12-06-2013 – Dr. Standard injects six cortisone shots into the left hip for pain.  He is pain free for a month.

02-03-2014 – Christopher falls in the kitchen on crutches. Dr. Standard’s Physician Assistant calls to tell us our only option is hip fusion or total hip replacement. Request medical records.

02-18-2014 – Discover truth about everything in OR Surgery reports.  Dr. Standard made a cut too deep in the head reduction osteotomy causing Christopher’s hip to fracture. We are crushed.

02-28-2014 – See Dr. Paley and he offers us a solution. Remove all hardware, perform a valgus osteotomy and external fixator.

04-09-2014 – Dr. Paley removes the hardware, performs a reshaping osteotomy does not place the external fixator on because the screws from the hip fracture surgery are backing out ripping Christopher’s cartilage to shreds. He places him on a CPM machine with an epidural for 5 days non-stop. Stay in hospital for 9 days.

5-14-2015 – Dr. Melvyn Harrington performed a left hip replacement with a 30 year Zimmer ceramic and titanium hip and extended his leg 5 cm so he no longer has a leg difference and can stop wearing shoe lifts. Christopher will finally go back to public school after five years at home and join a winning swim team and a competitive choir. This was the best decision we ever made because he is back to living! He will never be able to run or jump again but he is walking tall with both feet on the ground!

Lesson learned from this journey – always follow your instinct.  It will not lead you in the wrong direction.

5 Responses to Perthes Timeline

  1. Margie Upchurch says:

    I found your story will researching perthes. My grandson is suffering the same way, but is very brave and will not say anything. I think he thinks its a bother. After taking him to the peds office, they said to go to Childrens National Medical Center in Washington, DC. They took xrays, and told us what it was, and that he will grow out of it and that he should not play any sports. I am on the hunt to find out if we can get another opinion, and thats when I found you. I researched and found the doctor is right here in Baltimore. I leave more toward DC. I am glad you put this site up. You may have helped my grandson tremendously.

    • Christopher'sJourney says:

      I wish you the best of luck in your journey for your grandson. Dr. Standard also offers web chats every three weeks where you can ask questions real-time via a web chat. I’m glad to hear he is close to you. We have a perthes support group on Facebook called Legg-Calve Perthes Support Group if you are interested.

  2. Bella Kerbers and Sam Lewis says:

    Hi! We are Christopher’s classmates and we just wanted to know if there was anything to do to help him get through this hard time. We understand how hard this must be for you and your family. He will always be in our prayers. Please tell him to stay confident and that we KNOW he will get through this. The best of luck!
    Sincerely,
    Sam and Bella

    • Christopher'sJourney says:

      Sam and Bella,

      Thank you for the prayers! We can feel each one of them. It has kept Christopher strong during this entire journey. I will post a link to an electronic get well card soon. I know Christopher would love to hear from you two in Baltimore. He’s ready to walk into 7th grade later this year. Thanks for the words of encouragement.

      Sincerely,
      Stacy

  3. What an amazing story! Crazy! One thing after another!!!
    My daughter Joy (12) was born with hip dysplasia. A harness,two body casts/operations, leg brace later that was cured….then came Perthes! She had the ex-fix at age 9. Her hip is now healing well, but Joy is in a back brace for scoliosis. The ortho claims everything is unrelated. Really? There is a blog about Joy’s journey with her hip. Haven’t done a scoliosis one yet….but everything seems easier after you’ve been through the ex-fix…….
    Sounds like a strong and amazing young man you have there! I believe our kids are destined for greatness, they’ve been through so much at such a young age! Thanks for sharing your story!
    http://perthesprincess.blogspot.com/2011_04_01_archive.html

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