Showing posts with label Perthes. Show all posts
Showing posts with label Perthes. Show all posts

Sunday, January 17, 2010

Single Digits

I am officially 31 weeks. Only 9 (or so) to go. That freaks me out a little on many different levels. On one hand, it feels so far away. I couldn't possibly continue growing and waddling and moving like an old woman for 9 more weeks. On the other hand, this is not nearly enough time. Too much to do, too many miles to travel, too many boxes to pack, move and unpack. Hmmm, 9 weeks. I feel like I haven't thought "baby" nearly enough.
In other single digits, Rand is leaving in 1 day...actually less, to Phoenix to find us a place to live and do a few other things in preparation for our arrival. This will be the first time he gets to make the house decision alone. Yikes!!! I'm just going to have to trust him to see things through my eyes! He will be gone for 5 days.
Once he returns we will have just 4 more days to finish things up here. The moving truck will begin to be loaded on the 27th. The 27th will also be Brendan's last "Perthes" appointment at DuPont Children's Hospital and my sister Rachel will be flying in to help load and drive. It's like deja vu to write about our trip west....except in reverse. This is still so weird to me.
I go back and forth between thinking about moving, packing, a new house, the baby and the church. This really is kind of ridiculous. Just the baby is enough. A church-plant is a big deal by itself. Plus throw in moving across the country and we have ourselves a serious recipe for stress. Honestly though, we seem to be getting by one day at a time pretty okay. I take lots of deep breaths and let things go constantly throughout the day. I've only broken down and cried a couple times....and that's usually after I smash my finger trying to dismantle something or something like that. :)
So pray for us! We are doing well, and have lots to look forward to, but a whole lot on our plates and all I really want to do is get settled, sew a couple baby carriers, order diapers and get ready for #3.
Soon, right?
9 more weeks.

Friday, September 25, 2009

Perthes Disease in the News

My friend, Kim, just sent me these links. Good Morning America has aired a story about Perthes Disease. As this disease has personally affected our family, I really enjoyed watching them. It made me very thankful for modern medicine and research and NEW treatments!

If you want, here are the links:

Part One

Part Two

By the way, I didn't update after Brendan's last appointment in July. His bone is healing beautifully, according to Dr. B, and he is running around like a champ. It can take up to 3 more years for his new bone to get nice and hard so we are still limited to low-impact activities. Jumping sneaks in now and again, but Brendan is careful and slows down when he has over done it.
We will continue to follow up quarterly (for I don't know how long?) with our Orthopedic doc. in Delaware. Our next appointment is in November. Will keep you posted.

Wednesday, March 18, 2009

Brendan Update: 4

Today was our follow-up appointment for Brendan at duPont Children's Hospital in Delaware. If you don't know the whole story, you can catch up by reading here, here, here, and finally here.
It's been 8 weeks or so since our last visit and if you remember we got some good news last time. His x-rays showed new growth in the bone. After 8 weeks we were very anxious to see what was going on in there. Since November Brendan has been on restricted activity. No running or jumping....at all. The running thing was near impossible, but anyway, we've been hoping our efforts were paying off.
We all went today and got held up in finance for an hour. Bleh! Insurance irks me like no other! I took the camera and have a plethora of pictures of the children making silly faces while we waited and waited and waited for insurance stuff to clear up. Finally it did. Brendan had 2 x-rays taken and then we went back to the office for the feedback.
Dr. B came in beaming and said...and I quote, "The bone is filling in beautifully!" He was so pleased and so were we! This is GREAT news! He checked Brendan's range of motion, watched him walk down the hall and showed us the x-rays. Amazing!!!! He showed us the progression and what's happening and where the blood vessels are and all that new bone! Aren't our bodies fearfully and wonderfully made?! I just can't believe it can repair like it has. For now Brendan has the green light to run!!! If he hurts or limps worse after running then we have to back off a bit. He said the bone is still pretty soft. No jumping still, but Dr. B said probably 3 more months and he can do whatever he wants!!! This couldn't be better timing with the weather and spring and outdoor activities on the way.
We will go back in 4 months for another follow-up and they will continue to watch his growth in that leg. The damage was extensive enough that there has been some growth plate damage, but he thinks there is enough good growth plate left that it shouldn't be a problem. We learned some other interesting things about Perthes Disease too. He said that kids usually stop growing while the first few stages are happening....until the re-ossification starts again...which is what is happening right now. He said if you look at their hands, their hands will be about a year or two behind, but for some reason their teeth aren't. Weird. Dr. B thinks that Brendan will have a significant growth spurt soon and totally catch back up to where he would have been otherwise. He says a lot of this disease is a mystery. There have been 900 cases of Perthes that have come through that hospital since 1939. He has reviewed and studied all of them and still there is so much unknown.
We are happy and excited and so thankful for the good news we got today. Brendan is happy too. No more, "Stop running! Your leg!!!!" He kept saying on the way home, "So this time I earned 'running'. And next time I'll get to earn, 'jumping'." He's pretty darn happy about that!
Can't leave you without the plethora of silly face pictures!







Thursday, January 22, 2009

Brendan Update

Yesterday Rand and I took Brendan back to duPont Children's Hospital for another follow up with the Orthopedic doc. They took X-rays first thing and got us back to a room to look at them with the doctor. Doctor B says the X-rays look great! He showed us Brendan's MRI from November and then the new pictures from yesterday. You can see where all the dead bone is (basically the whole head of the femur) and now we can see some new bone growth. That is good news!!! We still have a long road of healing and protecting what is there, but what we are seeing is good progress and signs of a good recovery to come. We still do his stretches everyday and will continue probably through this whole process. Keeping range of motion is key to keep that femur head in a ball shape as it grows and the dead bone gets eaten away. Brendan was so nervous for about 2 days because we can never promise that he won't have to get a "poke", but yesterday was fast and easy and it was nice to get a non-painful hospital appointment under our belts. Should make the next appointment less stressful for him. We're good to go for another 8 weeks before they want to see him again. They will be tracking his range of motion, bone re-growth, and his growth plate over the next year. We're still praying that there is enough undamaged growth plate there that he does not have an issue with leg length in the long term.
Things look good!
Here's a couple pics of a very nervous Brendan. :(

Love you, Brennie!

Friday, December 12, 2008

Brendan Update

We had our follow up appointment at duPont today about the Perthes Disease. I almost don't know where to start.
We saw the resident doc first (he treated us in the ER originally) then saw Dr. D who we saw a few times during our stay at the hospital last time and finally we saw Dr. B, who is the Perthes "expert" (if you will). As far as I can tell, all three will be keeping a close eye on us for about the next year.
From what I learned today from Dr. B, Perthes is basically caused by a blood clot that cuts off blood supply to the hip joint, thus causing the bone to die, collapse, fracture and cause pain. (All of which we have experienced....and are still technically experiencing). After this stage runs its course the blood flow will return to the joint and will start trying to "heal" the area. Basically it will start eating up all the dead bone. Dr. B said that the next x-rays will probably look worse than the first as the dead bone starts to go away. After that the hope is that the bone will start re-growing. This is probable considering Brendan's age. In the meantime we will just be focusing on "containment", meaning that we want to keep Brendan's range of motion good and try to prevent any more damage to the "ball" of the joint itself. Part of what can happen is that the head of the femur (the ball) can actually get pushed outside the hip socket and then we have problems and need some serious surgeries. So we have physical therapy exercises to do at home (because every day is better than a couple times a week with a PT) to keep the muscle on the inside of his leg really flexible. It is already very tight and spasms when he does a "butterfly" type stretch. He also is prohibited from doing anything that would cause impact to that joint. For example, JUMPING is not allowed! Oh Lord, we are going to need help on that one. Seriously, how do you keep a five year old boys' feet on the ground??? No jumping, hard running, and "absolutely no trampolines". :( This limited activity is prescribed through all of winter and spring...and possibly longer. The doctor thinks that because of his age he may come through this quicker than a year, but it could be a year at the longest. He also said he has an 87% chance of making it through this no problem. That's good! He also said he has a 17% chance of getting this in the other leg. Oh, I hope that doesn't happen. We had blood work done today to check certain anti-clotting levels that he should have (it is unknown why he would have gotten a blood clot, as children naturally have anti-clotting "stuff" in their blood).
I think that's about it in a nutshell. Some of the issues include his right leg being slightly shorter already (not major right now) and the possibility of permanent damage to the growth plate in that hip which could cause growth problems in the future and the possibility of major surgeries and problems if that ball flattens more or protrudes the socket. There's some pretty major "if this then this" kinds of things if more damage is done as we navigate through the end of this first stage, but the prognosis is good and the doctors are positive. Being 5 is the best thing about this right now. If he was 9 or 10 this would look a lot different.
So, I'm off to read some articles (my homework from Dr. B) and learn as much as I can. He also wants Rand present at the next appointment (in 4 weeks) so that he can learn and be a part of the treatment, too. Dr. B has seen 900 cases of Perthes and is in the process of writing a book about it right now. I'm overwhelmed by how God takes care of us and knows our needs before we do. He has proven this to me over and over again, especially in the last 2 years. It feels like we are in the perfect place at the perfect time.

Here's Brendan with evidence of another "poke". He tried very hard to be brave today (much better than the hysteria that happened last week with the pediatrician) but he sure was scared. I was holding him during the blood draw and I could feel his heart just about to burst out of his chest. Poor kiddo!

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.