Friday, May 8, 2009

Full Appointment Update

Hey all...I only had like 5 minutes to update the blog before we left Baltimore yesterday. My mom took a lot of notes for me and I wanted to better explain everything that Dr. Standard told us.

I want to say, again, how much we loved Dr. Standard. I have never in my life met a doctor like him. He was funny, caring, very educated on perthes, AND made us truly feel like he really cared about us and our situation. Our appointment was at 8am, we were back in the room by 8:15 and we came out of the room at 10am..he was with us that entire time, other than the 5 minutes it took to do the xray. I had a huge list of questions and he answered all but 3 of them without me even having to ask..that's how thorough he is. Most of you that have talked to me a lot, especially you perthes girls, know how nervous I afraid we were going to see him and then face more difficulty for Dalton...all I can say is if you are in a situation like we were and just didn't feel 100% like what we were doing was right then I say please do everything you can to get to Baltimore to see Dr. Standard. It took us about 12 hours driving..about 2 hours of that accounted for stops for fuel, potty breaks, and swinging through drive thrus..we actually didn't stop and go in anywhere to eat. We took chips, crackers, and drinks and we just got a burger or sandwich somewhere. It was a long haul, for sure....but there is nowhere else, and I mean NOWHERE ELSE, that we would take Dalton now.

So the biggest question that we had was "how can 3 doctors tell us to do nothing and you feel like we need intervention?". His reply was that children Dalton's age typically do pretty well with perthes...about 80% of all children his age diagnosed do well w/out intervention..but what about that 20%..if Dalton was in that 20% would we still feel ok with doing nothing. No, of course not. He said that perthes can be different with every child, which we knew. He looks at each child individually and makes a decision based on the CHILD, not on statistics. He says that he certainly take Dalton's age into consideration because he knows he has much more room for growth and healing without having to do major intervention. With all that said, he said that two things with Dalton are very concerning...his ROM (range of motion) and the fact that the head of his femur is shifting out of the hip (basically the hip is starting to push out of socket). So taking Dalton's age into consideration he said that doing nothing won't help with Dalton's poor range of motion and poor range of motion was what was forcing the hip out of socket. If we can tackle that problem then we are (most likely) on our way to doing fine. He said that when you see bad signs you start to ignore the age of the child and treat the problem.

We will start out with PT (physical therapy) 2 days a week at Clemson Sports Medicine and then I have to do 5 different stretching exercises with him every day as well. I will post a pic of the exercises, but they are to be done in 3 sets holding each for 20-30 seconds. He wants to hear from the physical therapist in two weeks to see if we have any improvement. If we have some improvement we will continue PT thru the end of the first week in July. We will then see Dr. Standard on 7/6 to be evaluated again. If after two weeks the PT is NOT helping then we will most likely have a phone consult w/Dr. Standard to determine if we are going to move forward with the next step. If the PT is helping we will still see him on 7/6 and will most likely continue with another round of PT and be checked again. We have to have almost full range of motion to get the head of the femur moving back in the socket.

The next step if Dalton doesn't respond to PT will be surgery. As freaked out as I was about this before I honestly think had Dr. Standard wanted to do it yesterday that I would have been just fine...that's how wonderful he is! He said that if Dalton doesn't respond to PT that what we would do next would be to go in and do a double tenotomy and core decompression. The double tenotomy would clip two tendons in Dalton's right hip, he would then inject botox in Dalton's muscle to help him do PT with ease. The core decompression is a little more difficult to explain, but basically he drills a small hole into the head of the femur...the head of the femure then has a reaction to the trauma and it stimulates some cases speeding up the process of perthes. This surgery would most likely require one night stay in the hospital and then we would go across the street to the Hackerman-Patz house (sort of like a Ronald McDonald house) for one more night. He would want Dalton's pain under control before we headed back that far in a car. Also, if he has this type of surgery then he would be in braces for 6 weeks night and day, except he could remove them to shower and swim. Then he would wear them for probably 6 months at night.

He says that he feels like we have another good year to year and a half of fragmentation before we can expect to see any bone regrowth..and perthes can change at the drop of a hat with a child...but right now we feel hopeful that the PT will work and that at most he would have to only have the tenotomy and the core decompression. He says that he feels by tackling this soon that we could most likely avoid something like the fixator on down the line. Of course it depends on how Dalton responds, but right now we are feeling good about this.

He can't jump at if any of you see him jump..stop him! LOL!! He's so bad to jump down stairs or off of something like the couch..he's all boy for sure! The jumping will just further force the hip out of socket to where the PT we do won't really help. So the only restriction is no jumping.

I will start exercises with Dalton today...pray for us because the last time I tried to do any he told me he wanted to "go live wif my mimi bc she doesn't do mean stuff to me". lol The exercises are going really try to stretch him out and will probably cause more pain for him for a while until he gets used to it. Our first PT appt is Monday.

Thanks again so much for your love, prayers, cards, calls, txts, FB watching (lol), and financial gifts. Every single thing means so much to us. Just knowing that you care for us really means more than anything.


  1.'s know best, I'm so glad that God answered many prayers and sent a doctor that will be a blessing in helping Dalton. We are the same way with Sydney's heart doctor...we love him and he is so thorough and caring with Sydney. Marlee says she misses Dalton so bad,"I just want to hug him" she said. She says her prayers for him without a miss. We love yall and if I can help you watch Hunter when Dalton has his PT let me know, we are just down the road! Love You to you later. God Bless....God is GOOD!!!!! Love, Mrs. Mary, Mr. Patrick, devynn,sydney,marlee, &Jack Carter


  3. Lori,
    Thanks for inviting me to Dalton's blog. I love Casting Crowns. So excited to hear Praise in the Storm on Dalton's page. It is my mantra.....praising Him when the storm comes brings about that beautiful rainbow HE has promised us. It is also a good way to testify to others who are watching Christians weather such tumultous storms.

    Blessings to your family,

  4. Lori,
    My name is Amy and my son Ben was just diagnosed with perthes. I never heard of this before. We are still trying to make sense of this whole thing. Ben is 7 1/2 years old and I did not get to many answers from the original ortho. doctor. Thank you for sharing Dalton's story. It is really a help to know that others are in the same trial. How did you find the right doctor and where did you begin? It is somewhat overwhelming but I know God is in control of all things. If you could give us any help my email is would love to hear from you and your experience with this illness.

  5. Hi, my name is kimee. I have had perthes since I was 7. I am in high school now. It is hard, but it will get better. He is a little warrior. Having this makes us strong and helps us not let ppl get to us when they be mean. I was homeschooled. I hope Him the best and you and ur family the best too.