Before Nate was cleared from his post-op restrictions, it took two people to move him at all times. My mom was at my house most of the time with me, and a lot of times, my dad was too. He was here working on my house (the back bedroom). So as we made the switch to working at home due to the quarantine, I had some time in the mornings that allowed for a walk. I really enjoyed the time to myself to start the day, knowing that the exercise was good for me, and just enjoying nature as the world continues to go crazy. I ended up walking almost every day for two weeks straight which was great for both me and Rex. I would end up going on an hour long walk or longer and one of my favorite spots was down in the river bottoms where a flock of pelicans were visiting. I know the photos aren't the highest quality due to the zoom, but it was still an amazing sight!
Showing posts with label health. Show all posts
Showing posts with label health. Show all posts
{Perthes Disease} FAQ's
My post about Nate's Perthes was long and drawn out, so I thought I'd share some general information about Perthes Disease here and as we find out. We are always learning more with each doctor's visit to Shriner's Hospital in St. Louis.
Perthes is when the blood flow stops going to the top of the hip and causes the bone to die. There are stages to this as shown below.


Perthes is patient specific, meaning that each and every case is slightly different. Age of patient, stage they are in when diagnosed, etc. can all play an important part. Time and length of disease can also vary, as it's about the bone dying and being regrown.
Doctors have differences on treatment. Some are wait and see with restricted activity, some are straight to surgery. This can vary depending on patient too.
Long term effects and complications can arise, but not always. This isn't a "fix it now and be done forever" issue.
One of the biggest things is range of motion. This was mentioned at Nate's first post-op check-up. We asked about when you know he's ready to not have the brace and the doctor mentioned range of motion. So there's no time specific date for the brace, although Nate will be in for the rest of the school year - roughly 5-6 months.
- Mayo Clinic
- Perthes 101
- PerthesKids
So what is Perthes?


Perthes is patient specific, meaning that each and every case is slightly different. Age of patient, stage they are in when diagnosed, etc. can all play an important part. Time and length of disease can also vary, as it's about the bone dying and being regrown.
Doctors have differences on treatment. Some are wait and see with restricted activity, some are straight to surgery. This can vary depending on patient too.
Long term effects and complications can arise, but not always. This isn't a "fix it now and be done forever" issue.
Random Info:
We've been told some small tidbits of information in appointments and as I hear more, I'll share here.
One of the biggest things is range of motion. This was mentioned at Nate's first post-op check-up. We asked about when you know he's ready to not have the brace and the doctor mentioned range of motion. So there's no time specific date for the brace, although Nate will be in for the rest of the school year - roughly 5-6 months.
Helpful Pages:
- OrthoKids- Mayo Clinic
- Perthes 101
- PerthesKids
Nate the Great
This will be a page I update as I find out more, helpful information. From now on though, new blog posts will deal specifically with Nate and his growth and updates. I also have a Facebook page for Nate - Nate the Great Perthes Warrior! On the page is a link to our GoFundMe, set up by my wonderful aunt, as we face a lot of medical bills. We have insurance but there's a copay and a percentage left for me to pay.
If you have questions or comments, leave them below and I'll answer them!
{Life Lately} Nate and Perthes Disease
It's about time for an update, so let's just jump right in and learn about what's been taking up my time, energy, money, stress levels and so much more. Edited to add: this is long and I'm trying to break it up for updates.
In the beginning of the year, Nate, my son, started to limp. At first, we blamed the planter's wart on his foot and then the blister that the medicine made didn't help. He had the medicine put on the last week of March. The blister and healing after the blister took most of April. In May, the limping was still bad enough that we finally were able to be seen by an orthopedic doctor. One of the nurses in our local hospital's ortho unit, noticed his hips moved odd and stiff, so we had x-rays done right then. She brought up something that we had never heard about (and neither have many others) and that's Perthes Disease. It's technically Legg-Calve-Perthes Disease.
I hate the word disease, so we'll shorten it to Perthes.
So what is Perthes?
Perthes is a random, rare issue that is caused when the blood stops going to the top of the femoral head. This can happen for unknown reasons and is not necessarily trauma based. Nate wasn't in an accident, he wasn't hurt in any obvious way. He was a very active 5 year old, preschool loving, energetic boy with no previous health issues.
The doctors told us to follow the "restricted activity" method and so we pulled him from baseball and kept him from running and jumping as anyone can control an active 5 year old. He could still swim, which was great because our family's love of water and how it's a great physical activity for hip problems.
But Perthes and the lack of blood flow to the femoral head then causes the bone to die. This process can take a long time and is called Necrosis (dying bone).

The second stage is fragmentation, which is where both of Nate's hips currently are.

In November, after months and months of therapy (physical therapy and water therapy), I went with my gut feeling (aka Mom's Intuition) and called Shriner's Hospital in St. Louis for a second opinion. I took Nate up by myself, thinking they would be saying something similar to what our local doctors were saying. I was wrong! He was told, by Dr. Schoenecker, that he shouldn't be walking at all and that he recommends surgery. At first I thought "really?" then realized that I went to Shriner's for a reason - they see Perthes every day, multiple times a day. They've seen it in all stages. Our local doctor has seen maybe 1-2 cases in their career. Dr. S. is also known around the United States as a leader in Perthes and Perthes treatment. As much as I hated the word surgery, I trusted this man to know what he's talking about. Dr. S also mentioned that he had it in both hips, which is even more rare. Our local doctors knew this (it was in paperwork I printed off after getting our Shriner's appointment) but never told us this.
One week before Thanksgiving, Nate went in for surgery. He came out of it wearing a Petrie Cast in bright red (his favorite color). He had a abductor tenotomy, where a tendon is cut. They were able to push one of the hips back into socket without a lot of push back and hopefully the cast will help do its job. You can read more of the treatment here, if interested.
After Christmas, Nate gets his cast off and he will get his brace. It'll still be an A frame type shape and will be worn 20 out of 24 hours of the day. Which means he'll have time for therapy and baths. I'm hoping that he will have aqua therapy again, which helps build strength.
In the beginning of the year, Nate, my son, started to limp. At first, we blamed the planter's wart on his foot and then the blister that the medicine made didn't help. He had the medicine put on the last week of March. The blister and healing after the blister took most of April. In May, the limping was still bad enough that we finally were able to be seen by an orthopedic doctor. One of the nurses in our local hospital's ortho unit, noticed his hips moved odd and stiff, so we had x-rays done right then. She brought up something that we had never heard about (and neither have many others) and that's Perthes Disease. It's technically Legg-Calve-Perthes Disease.
I hate the word disease, so we'll shorten it to Perthes.
So what is Perthes?
Perthes is a random, rare issue that is caused when the blood stops going to the top of the femoral head. This can happen for unknown reasons and is not necessarily trauma based. Nate wasn't in an accident, he wasn't hurt in any obvious way. He was a very active 5 year old, preschool loving, energetic boy with no previous health issues.
The doctors told us to follow the "restricted activity" method and so we pulled him from baseball and kept him from running and jumping as anyone can control an active 5 year old. He could still swim, which was great because our family's love of water and how it's a great physical activity for hip problems.
But Perthes and the lack of blood flow to the femoral head then causes the bone to die. This process can take a long time and is called Necrosis (dying bone).

The second stage is fragmentation, which is where both of Nate's hips currently are.

In November, after months and months of therapy (physical therapy and water therapy), I went with my gut feeling (aka Mom's Intuition) and called Shriner's Hospital in St. Louis for a second opinion. I took Nate up by myself, thinking they would be saying something similar to what our local doctors were saying. I was wrong! He was told, by Dr. Schoenecker, that he shouldn't be walking at all and that he recommends surgery. At first I thought "really?" then realized that I went to Shriner's for a reason - they see Perthes every day, multiple times a day. They've seen it in all stages. Our local doctor has seen maybe 1-2 cases in their career. Dr. S. is also known around the United States as a leader in Perthes and Perthes treatment. As much as I hated the word surgery, I trusted this man to know what he's talking about. Dr. S also mentioned that he had it in both hips, which is even more rare. Our local doctors knew this (it was in paperwork I printed off after getting our Shriner's appointment) but never told us this.
One week before Thanksgiving, Nate went in for surgery. He came out of it wearing a Petrie Cast in bright red (his favorite color). He had a abductor tenotomy, where a tendon is cut. They were able to push one of the hips back into socket without a lot of push back and hopefully the cast will help do its job. You can read more of the treatment here, if interested.
After Christmas, Nate gets his cast off and he will get his brace. It'll still be an A frame type shape and will be worn 20 out of 24 hours of the day. Which means he'll have time for therapy and baths. I'm hoping that he will have aqua therapy again, which helps build strength.