Tuesday, November 25, 2008

And Now the Story

Okay. Was that kind of a shocker or what? I'm still whirling from the whole thing. If you remember, the last 2 weeks we have spent with our pediatrician trying to figure out what has been going on with Brendan's knee. For 2 weeks he has gone from excruciating pain to just running around limping and back to excruciating pain. It is horrible to see Brendan in so much pain. Since birth, he has been unusually tough. We used to wonder if his nerves worked right, because he never, ever cried from pain. I mean, I would hurt watching him fall sometimes and he would just get up and shake it off. Everyone would look at each other with amazement. He just NEVER gets hurt. So anyway, this knee thing has been a mystery. When it is hurting really bad he can't straighten that leg, he holds his knee really bent and basically can't move. Motrin seemed to help, but Tylenol didn't as much.
So we had had an X-ray on that knee that showed nothing, and then the following week we went for labs to rule out Lyme Disease. As of the end of last week we hadn't heard about the Lyme Disease. Friday (remember the snow) he was feeling great. He just had a slight limp, but no pain. He was running all around and Rand even had them hitting baseballs in the basement that afternoon. On Saturday he was limping pretty bad and said his leg was hurting. We ran around town all morning. He walked from the car, but I made him ride in the cart at the stores. By late afternoon he was in a lot of pain. And within an hour or so he was crying and couldn't move anything because of the pain. I called the on-call nurse with our Pediatrician and told her what was up. She said to take him to the ER at Bryn Mawer because they could access his labs and figure out if he should be treated for something.
We left here around 6pm and got into the ER right away. They drew more blood (everyone was worried about a bone infection) and checked those labs from last week. (negative on the Lyme Disease). There was 3 doctors working on his case. The orthopedic doctor wanted more X-rays, including a hip X-ray. I wish I would have kept track of how much we waited. There was literally hours in between each little thing. They studied the results of everything and called in another orthopedic doctor (we think he came from home). He suspected Perthes Disease. What??? What the heck? He wanted to transfer us to a children's hospital that had a whole team of expert pediatric orthopedic docs. By this time it was getting close to midnight so they decided to keep Brendan there for the night. Rand stayed with him and I went home with Wyatt.
We met up again in the morning and I was surprised that, by the next day, Brendan didn't really seem any better. The Motrin wasn't touching the pain. So off to duPont Children's Hospital we went. For some reason we went through the ER, which was fine, but the accommodations there just aren't as great. They ordered more blood work (another IV) and more x-rays. Poor Brennie. He was exhausted and just looked terrible. Finally around 3:30 he fell asleep in the ER. The nurse came in and gave him a dose of something I can't remember, but they described it as "super Motrin".
Around 5 they finally transferred us to a room and got us checked in. The resident orthopedic doctor came in and talked to us a little about what they thought was going on. I got the impression they were still unsure....could have just been how he came across. When Bren woke up his leg was feeling much better and he could even straighten it which was blowing everyone away! I stayed with Bren that night and Rand and Wyatt went home. Pretty early in the morning the head orthopedic doctor came in to talk to me about Perthes Disease. He said his X-rays were classic and there was no doubt. He was surprised the limping hadn't started before 2 weeks ago because it looks pretty extensive and that it has probably been going on for 6 months. He said that his age was definitely in his favor for a good recovery. The younger the better with this. He showed me the X-ray and said he wants his partner to take a look at him because his partner's area of interest just happens to be Perthes Disease. They still wanted an MRI to get a closer look at how far this has gone and the extent of the damage. So that took us the rest of the day and after Brendan woke up and ate we were allowed to go home. This morning Brendan is hardly limping. We have orders to take it easy but if he can support his weight he can walk around and be a kid. Just no running or vigorous play.
I am so glad to be home. I'm a little shocked at the seriousness of what he has, but I'm relieved beyond belief that it is not life or death. He is going to be okay.
So here's what Perthes Disease is:
"Perthes is a condition in children characterized by a temporary loss of blood supply to the hip. Without an adequate blood supply, the rounded head of the femur (the " ball " of the " ball and socket " joint of the hip) dies. The area becomes intensely inflamed and irritated.
Although the term 'disease' is still used, Perthes is really a complex process of stages. Treatment of Perthes may require periods of immobilization or limitations on usual activities. The long-term prognosis is good in most cases. After 18 months to 2 years of treatment, most children return to normal activities without major limitations.
Perthes disease usually is seen in children between 4 years and 10 years of age. It is five times more common in boys than in girls. It was originally described nearly a century ago as a peculiar form of childhood arthritis of the hips."
The cause of this disease is unknown, but we are glad to be seeing the experts. Treatment for the problem has changed a lot so don't believe everything you might read online! :) We will be following up at duPont with the Orthopedic guy and his partner in 10-14 days. They said they would be following this closely for probably a couple years which will probably include regular X-rays to see how things are going. So that's the scoop.....about as short as I could make it. DuPont was the perfect place to be and the kids loved all the play rooms and TV to watch and all the attention they got from everyone...even Wyatt! :) Our pediatrician called yesterday afternoon. He had seen the X-rays but wasn't aware that we were in-patient at duPont. He was calling to tell me that we needed to go to duPont. Apparently we were in the right place and are seeing the very best doctors for this.
So, now you all know what I'm thankful for this week. :) Being in a hospital full of really sick kids gives you a lot of perspective. I was so happy to have them both in the car with me last night. Even though looking at that X-ray made me a little sick to my stomach, I am struck with the fact that we are still lucky and it could have been something worse or he could have been a lot sicker than he is. In fact, I wouldn't even call him sick. He just has a little problem. And that's okay. (We asked about his baseball career and the doctor said he should be okay. Phew! :) ) So we can deal with that.
I wish I would have taken more pictures, but obviously I wasn't really thinking about my blog. I have a few though. I mean what kind of post would this be without a couple pictures. Plus, if you read that whole thing you deserve a picture or two! :)
These are all from yesterday.

I know the x-ray picture isn't that great. It's a picture of a photocopy of an x-ray. If you look at the leg on the right (his left leg) you can see the ball joint is nice and round. The one on the left (his right) the ball joint looks kind of flattened. That's what's going on. The doctor said the picture makes it look worse than it probably is, and I can't explain to you exactly what he said is going on with bone mineralization and all that, but that's basically what the problem is.


Darren said...


Kaylee...My son (also named Brendan) was diagnosed with Perthes one year ago at age 7. I know first hand the range of emotions you and your husband must be feeling right about now. The link above will direct you to a Yahoo forum about Perthes. There you will find a group of awesome parents who helped me understand Perthes, their experiences, and numerous treatment options from the best doctors around the country.

I would be more than happy to discuss with you my Brendan's experience to date with Perthes.

You are in our prayers!

Nana said...

I just need to hug that little guy and make sure for myself he is all right...a good long hug would help I'm sure...
the pictures tell so much! am glad you took them...the iv in his hand makes my hand hurt....but seeing him busy playing makes me smile!
love and hugs to you all

Anonymous said...

I am relieved that he is going to be okay and that eventually he can return to some normal kid activities. The best part is that his fishing career is not in danger.
Uncle Bubba

Anonymous said...

Brendan you are such a brave boy. It's good to see you playing and smiling even if it was in the hospital. Big hugs to you, Wyatt and your mom and dad. You are all in my prays. Love, Great Aunt Nancy.

Kristi said...

Wow! I'm glad that he's feeling a bit better for now. God really knew what he was doing when he lead you to PA didn't he?! ;) I'm so glad that you have a wonderful team and a great hospital to get him the best care possible!

The Raudenbush Family said...

So glad you called today and I got to hear this all from you in your own voice and really understand how peaceful you are in all of this. You know that that is the peace that passes all understanding. How do people do this parenting thing without the grace of God? Really looking forward to sharing in your thankfulness on Thursday. You can tell the boys that we will have a special kids table all set up for them. :) Kelly & fam

Anonymous said...

Hugs and kisses to Brendan from Granma Wagner. You are so brave. Hugs and kisses to Wyatt for being such a good boy with all this waiting and hospital stuff. Love and prayers to Rand and Kaylee from mom. xxoo.

Anonymous said...

I just want to say, that your family is in our prayers. My son was diagnosed at 4, in Jan. '07, He is doing really well, his hip ball is slowly growing back! And he as well, was always such a tuff little man! I have heard great things about Dupont, and the docs. treating perthes there. So you guys are in good hands! Something I have always reminded myself, is that "Perthes is life altering, NOT life threatening." And we are all so blessed for that! Hang in there!

Krisy said...

I'm praying. Glad it will be ok. Love you.

Anonymous said...

Kaylee, you give Brendan a big ole hug from us, and tell him Griffin can't wait to see him. I just sent you an email asking what was going on with Brendan, after hearing from my mom that you guys weren't able to come to the feast on Sunday night b/c Brendan was in the hospital... yikes. Then I thought to check your blog. You guys have been through the ringer! Praise God for a treatable diagnosis, and great doctors. We'll see you guys on Sunday. Oh, and loved those pictures... i bet those doctors and nurses fell in love with him.

Praying for you guys.

-Kim & Tucker and the kids

Jaynee~ said...

What an ordeal! Of course I'll be praying for Brendan, but for you, Rand and Wyatt as well.
May you feel God's peace and strength as you move along this path of uncharted territory for your family. HE knows what lies ahead and will keep Brendan in his perfect care.

Love you so much~

Joleen said...

Wow! it has been ages since I've been on your blog. It's five a.m. and I just read everything I've missed for the past month!

I'm so glad Brendan is being treated by awesome docs. We sure were praying for you.

I love knowing all about your "even" problem. I'll have to remember that the next time I punch you in the arm.

Karla said...

I just happened upon your blog because I get a Google Alert on Perthes. You see, my son also has Perthes. He was diagnosed shortly before age 6, because of limping and knee pain. He was on activity restrictions and stretching exercises, and thankfully, he never had to have any more serious treatment. We moved in the spring, and when we went to our new pediatric orthopedist in the summer, he said the bone was regrowing and William could go back to normal activities as long as it didn't cause pain or inflammation. So now he is 7-1/2 and playing hockey! He seems to have escaped with a more mild case of the condition than happens for some kids. But he is super active and athletic, so it was a challenge to keep him inactive. Swimming is encouraged and you should look into that.

I'd be happy to talk with you more, and to steer you to some web resources including some parent discussion groups (I am a medical librarian). Good luck, and please know from someone who is going through this too, that your child will get through this.