WAG Perthes Disease Diagnosis.....

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fuzi

Coach
Gymnast
Judge
May 28, 2009
1,079
Region I
This must be devastating for you and your daughter. I didn't know much about Perthes until I read your post, and I've been reading up over the last couple of days. I hope you get some good news (or at least a viable plan of action) from the specialist. I suppose you will know soon about if this has to be a permanent end to her gymnastics career (or just a temporary blip and maybe a future bars specialty?). Whatever happens, I hope she finds a way to continue to love the sport. There's always room for more good coaches and judges, and at 12 that could be only a few years away.
 

kmc

Proud Parent
Jan 2, 2014
193
I am so sorry to hear that. Hugs to you both. My DD was dx last year at age 13 with Type I Diabetes. While it has not limited her sports, it is a life-changer for sure. For words of encouragement, I would say to be as positive as possible, and focus on all the things she still can do and all the cool things that she could pursue if they do say no gymnastics that she never would have otherwise even thought of.
 

meganliz77

Proud Parent
Feb 11, 2014
616
Minnesota
@cadybearsmommy so sorry that your DD is having to deal with this!! I am keeping my fingers crossed that you get good news from the specialists...sending positive vibes and virtual hugs to you!

Given my DD has struggled with hip issues intermittently, I am just wondering what your DD's symptoms were that brought it to the point that all the testing was done? My DD ends up back at the chiropractor once every few months due to hip pain... she limps around, one leg is longer than the other... and after an adjustment or two she is good for a couple months again. It's always the same leg/hip. I just want to make sure that I pay attention a bit closer than maybe I have been...
 

cadybearsmommy

Proud Parent
Dec 31, 2010
1,683
Region 8
@cadybearsmommy so sorry that your DD is having to deal with this!! I am keeping my fingers crossed that you get good news from the specialists...sending positive vibes and virtual hugs to you!

Given my DD has struggled with hip issues intermittently, I am just wondering what your DD's symptoms were that brought it to the point that all the testing was done? My DD ends up back at the chiropractor once every few months due to hip pain... she limps around, one leg is longer than the other... and after an adjustment or two she is good for a couple months again. It's always the same leg/hip. I just want to make sure that I pay attention a bit closer than maybe I have been...

Dd first had issues in January, the urgent care doctor was concerned about a cortical defect ( coincidental finding) on the X-ray and that’s why they sent her for the MRI, but her MRI showed nothing but fluid then. When it flared back up, she tried physical therapy ( since it was mostly stiffness and a little pain on range of motion.). Our physical therapist is amazing and began to suspect after a few sessions when things weren’t improving that there was more going on. I think the big red flags were the limp (one leg hanging down more than the other) AND her lack of range of motion ( she would inadvertently really push back on the therapist when testing ROM on that leg, her body was trying to protect that area.). I hope things clear up for your dd soon and that no further treatment is needed, but if you’re concerned the chiropractor can probably take an x ray and see if there is anything that needs to be further evaluated.
 

cadybearsmommy

Proud Parent
Dec 31, 2010
1,683
Region 8
DD’s appointment went as well as we could have hoped today. She is in the very first stages of Perthes. At this time the specialist sees no need for surgery and no need to restrict activity. She can return to gymnastics as long as she modifies her workouts appropriately and/or takes breaks when pain flares up. He said as of right now the condition is self limiting. Her body will go through the process of replacing the old dead bone with new bone and it will take about 4-5 years for this to happen. Until then she will take daily anti inflammatory medication, do intense physical therapy to maintain range of motion and follow up with this doctor every six months. If she had worsening pain or condition worsens as the disease runs it’s course we may have to re evaluate and consider other options like surgery or an extended period of containment with no weight bearing or sports activities. Keeping our fingers crossed that this will manage her symptoms and for no further issues for a while. Thank you for all the support, hugs and prayers. Will continue to update if anything changes.
 

Sminty

Proud Parent
Oct 10, 2013
117
47
So sorry about the diagnosis, but glad to hear it's early stage and there's a path forward for your DD to stay in the sport. How is she reacting to all of this? It must be quite an emotional roller coaster for all of you.
 

cadybearsmommy

Proud Parent
Dec 31, 2010
1,683
Region 8
So sorry about the diagnosis, but glad to hear it's early stage and there's a path forward for your DD to stay in the sport. How is she reacting to all of this? It must be quite an emotional roller coaster for all of you.

Oh she was absolutely thrilled after getting the news. Today she’s a little quieter, I know she was excited to go to practice but I think she’s a little worried about the next stages where the pain might be worse and things might be harder to manage. But we just have to take it one day at a time. It’s been a crazy year or so, quite a few injuries/scares (before the hip trouble she had an elbow injury that was initially misdiagnosed as a fracture). Luckily that only ended up being a strain but it caused pain and stiffness for weeks as well. It’s becoming apparent that optional gymnastics is not for the faint of heart. Although the doctor says he doesn’t believe the Perthes is related to her being a gymnast. Emotional roller coaster would be the right word for sure.
 
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