Tuesday, April 28, 2009


Looks like that's where we are heading. The dr that I spoke of in my previous post replied to me...I had actually sent him the email the very end of March but somehow it got tangled between two of his email addresses so he replied to me again last night. Here is what the email says:

"I have reviewed Dalton's x-rays. Although Dalton is in a favorable age group for perthes- he has significant collapse and lateral shifting of his femoral head out of the cup of the hip. His hip would be categorized a Herring B/C - that means doing nothing is not a good option for him. The exact treatment plan would depend on his physical exam- the treatment could be as easy as a soft tissue release around the hip performed as an outpatient with subsequent stretching exercises and bracing to as complex as a hip distraction surgery where a external fixator is placed on his hip to unload the collapsing femoral head. I recommend that you and Dalton come for an evaluation in Baltimore- Sinai Hospital. Call Barbara at 410-601-9570 and schedule an appointment - since perthes is a time sensitive condition, Barbara will prioritize your visit and work you in as soon as possible.

Take Care,

Shawn C. Standard MD"

Wow. I am shocked, sad, hopeful..I just feel so many things. A million things are racing through my mind. I guess in reality I fully expected him to come back and say that he agreed with what we had been told due to Dalton's age he would do well without intervention. If you look at the 3rd xray picture in this post (click on it to pull it up big) you can see exactly where there is "lateral shifting of his femoral head out of the cup of the hip". This is a bad thing and needs to be addressed...however, I don't understand why neither of the two ped orthos we have seen in the past month have mentioned it. We have tons of questions, naturally. This dr. is THE dr for perthes...possibly in the world. Tons of people from all over see him for this. This is one of his specialized areas.

I called Dr. Standard's assistant, Barbara, this morning and as soon as I said my name she asked "Dalton? Yes, Yes, Dr. Standarad has told me about Dalton". I just about lost it...for him to have us on his mind..to come to work and tell Barbara that we might be calling..he must be a truly caring person. I am awaiting a phone call from Barbara this afternoon so that she can go over any questions I have regarding the appt and then we will set something up. She said the appt would be on a Thurs a.m. and right now we are looking at 5/7 or 5/21.

We most likely will have some tough decisions to make. Here is a picture of the external fixator that he mentioned in his reply to me.

The site of this thing makes me sick to my stomach...to think that this has even been suggested. However, it's not a definite that this will have to be done...and quite honestly, we might turn down this option for Dalton right now and go for something less invasive.

Just keep us in your prayers. I will update once we know when the appt is.


  1. ((((((((hugs))))))))))) Can't imagine how you guys must be feeling. I guess it's like you said....scared, shocked, hopeful, and a million other things. I'm glad, though, to know you'll be seen by the big-time specialist--you can't get a better knowledgeable opinion than that. I'll be thinking of you guys and praying, as usual. Stay in touch about your plans, ok?

  2. Lori. I am so glad the specialist can see ya'll so soon. Know that everything works in time and accordance to God's perfect plan for Dalton. I pray strength, grace, guidance, and encouragement for your whole family as you face this challenge. Good luck and my prayers are with you!

  3. Thinking of you and praying for Dalton, I know you have a ton on your mind right now, but I'm so glad to hear he'll be seeing THE doctor for his condition. ((((hugs))))

  4. Lori Dr Standard is the best! I often wish that we could see him but living in New Zealand cuts that one right out!
    Hang in there. I know what it is like to pull an all nighter with hurting kids.
    Tanya Oomen

  5. Romans 8:28 sweetheart!! Cling to it!

    I love you and am praying! If there is anything I can do, you know that I am a phone call away!


  6. Lori,
    I dont know you at all... but I must tell you that the sight of that fixator is the most beautiful thing have ever seen...

    Our son Ian (13) has Perthes. He was diagnosed at 6 (in Cincinnati) and by age 7 he had full head involvement and was in a ton of pain. The Doctors at Cincinnati Children’s Hospital wanted to perform a shelf procedure and a pelvic austiotomy. They also suggested that Ian take up violin lessons ..no joke (Baseball is his passion). For many reasons, we knew that this was not the correct path for us to take.

    We had read about Dr Paley on the internet from a woman who said that other Dr’s had called Dr. Paley “a dreamer”. But at least Dr. Paley had the same dream for her son that she did. These were profound words to read and they were like a life-line for us. We found and read “Perthes for Parents” by Dr. Paley and knew we had our answer. Not once did Dr. Paley ever suggest music lessons to Ian. I believe at this time we were a “Second Generation” of Perthes patients. Ian recalls Dr. Paley referring to a young man the he had treated who was currently playing College - Division 1 Lacrosse.

    Ian had his fixator put in February 2004. We decided to do therapy at home in Kentucky and travel to Dr. Paley for adjustments so that Ian could stay in school during his treatment. Ian did very well in school. His grades slipped a little, but not too much. He never displayed his frustration in school…but he did save it for us at home. At night during the distraction phase, his back and knee hurt a lot. Also, he hated taking the wrapping off the fixator. He would tell us at these times how he HATED the fixator and it was ruining his life!!!!

    We were rewarded for these efforts by the most beautiful films of a round femoral head at the removal of Ian’s fixator. Last year Ian had a writing assignment entitled “If I could change one thing about myself”. My daughter said “I bet you will write about your fixator”. We were very surprised when he answered no to that. He said that he would not change that experience because he now knew that there was really nothing he could not do! I guess he is correct. He played close to 100 games of baseball last year. He NEVER has hip pain. He is living his dream and working toward his goal to play Division 1 Baseball in college.

    Perthes has in fact been a life altering experience for Ian…but in a positive way. Ian now knows that there are doctors who “think out of the box” and are smart enough to solve such complex problems (It is most important to try hard in school and be smart like Dr. Paley). I remember reading a article about Dr. Paley where he said “there are those that read the Manual and those that write the Manual”. We are profoundly grateful that Dr. Paley wrote (and continues to write) solutions to the Perthes problem. We hope that our son Ian too will always be a “Dreamer” as well as “Do-er”.

    Good luck to you.

  7. Hi,

    My son, Josh, was diagnosed with Perthes disease in March 2008. He was 6 years old at the time and he was in immense pain nearly all day long. After months of getting constant xrays it was noticed that Josh's condition worsened and we were advised that he needed a femoral osteotomy. His whole femoral head became involved and he was virtually hobbling around on a leg with no femur ball at all.
    Anyway, he had his osteotomy in March 2009 and is doing quite well. He spent 2 1/2 months in a wheelchair which was tough but it was the safest option at school. His right leg is now 2.5cm shorter than his left and his limp is quite bad but he is pretty much pain free. He is not supposed to run around or jump but keeping a 7 year old boy from doing that is a challenge we face everyday.
    Josh is due to have his plates and screws removed in March next year. By then it is hoped his femur head is growing back in a smooth shape.
    Surgery is always a hard decision no matter what type it is but we don't regret it at all.
    Take care,