"Possible Perthes" Episode of moderate/severe pain and limping, then mild?

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I know this post is lengthy, but I wanted to give others a clear picture of what I have seen. My question is this: Is Perthes a likely diagnosis if my son has only one severe episode but still has obvious discomfort even if it is much milder? Below you will find my concerns:

Last month, my 6 year old woke up limping and complaining of leg pain the morning after his first baseball practice of the season (this practice included a lot of running, and it was the first time in a while that he engaged in rigorous activity). He had complained on and off of vague leg pain for about 6 months, but we wrote it off as growing pains and it never raised any red flags until later when the pain was more intense. His teacher informed us that he had been falling/tripping a lot recently, but she just attributed it to him being silly (which is not unusual for him). He has been clumsy since he started moving around as a baby, and has always had an odd way of running. But again, he is quite silly and extremely rowdy and always has been. In the weeks following the episode, I payed closer attention to his behavior and physical movements and noticed some changes. He has always been VERY hyper active and has NEVER been one to sit still for longer than a few minutes. However, he has become increasingly less active and sits for long periods of time, especially after being active (even if just for a little while). He also makes awkward movements when getting up from sitting or when climbing (almost as if he is protecting the affected leg/hip.) I would also like to note that from birth he has had an extremely high pain tolerance. He has never cried when receiving his immunizations, and rarely cries or even complains when he is injured. He hit his head when he was two and needed multiple stitches and never once cried or complained. When he received an IV once he didn't seem to notice at all (the nurses commented that they couldn't recall ever seeing a child not even flinch unless they were sedated of course). For a while we were concerned about whether or not he could even feel pain, but the doctors tested him and said he is just very tough.

In the hospital (after taking him to his doctor the morning he woke up limping and complaining of seemingly severe pain, he was taken to the pediatric ER to rule out anything life threatening like septic hip) the findings were as follows: Xrays were normal, affected leg slightly shorter, limited range of motion in the hip. Several doctors (including a pediatric orthopedist) suggested "possible Perthes" after comparing notes, symptoms, and history. They decided to take a wait and see approach. After about a week of resting, the severe pain subsided. He is scheduled for a follow up xray in June to check for any changes.

Since the severe episode, he has been much better. However, he still complains on and off especially after doing certain things like stepping up or down on raised surfaces or when the leg is manipulated during the stretches we were given. It is my belief that he isnt telling the truth when asked if his leg or hip hurts because he thinks that if he says yes, he won't be able to do whatever fun activity is causing the pain. I could be wrong, but I have seen him wince with certain movement and when he realizes I am watching him he acts like he is fine. His doctor has also made comments that even though he does not vocalize pain, his body language (for example, tensing up when the affected hip is manipulated but being relaxed when the "normal" hip is moved in the same motions) and facial expressions make it obvious that he is uncomfortable. He does still play baseball, and even after the same rigorous activity that seemed to cause the bad episode continues to only have minor discomfort.

I know this post is lengthy, but I wanted to give others a clear picture of what I have seen. My question is this: Is Perthes a likely diagnosis if he has only had the one severe episode but still has obvious discomfort even if it is much milder?

I appreciate ALL of you who take the time to read this post...I have only been able to find limited information on the subject and most stories I have read have not been similar to my son's. Most of what I have seen has been the classic "complained of pain, started limping, pain worsened, abnormal X-rays, etc". I just want to make sure that I stay on top of it and that the doctors do not dismiss my complaints because he has not had another severe episode. I know that the earlier it is diagnosed and addressed, the better the prognosis and I don't want him to slip between the cracks just because he is tough. THANK YOU!!!

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  • Posted

    I hear this story at least every week possibly more often, I would say Perthes is the most likely diagnosis as what you describe is typical of early Perthes.
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    • Posted

      Thank you for your reply! smile I don't know if you can answer these questions, but how long is typical for a normal xray to turn into an abnormal one so that they would ahead and intiate treatment if Perthes is indeed the cause? And how likely is it that it's NOT Perthes? I know he has a lot of the symptoms and I haven't been able to find anything else that matches them so closely. I feel as if it were indeed just an injury, it would be better by now, but I'm still holding out hope. 

      Just curious, what would you suggest we do? I have read numerous articles that advocate for an MRI if x-rays are normal but Perthes is still suspected, since early treatment is best. I do not think I would have much luck with the orthopedist as far as an order for an MRI goes, because I asked her about one and she acted as though it wasn't nessecary and I was over reacting. However, I do think that his pediatrician would be willing to have one done if I requested it. That is, if he is able to order it himself without specialist approval (not sure how that works as far as insurance and such). 

      Again, thank you for replying!

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    • Posted

      In the UK if x-rays do not show Perthes and the blood work doesn't show any other explanation x-rays would be taken 6 weeks apart for about 3 months and then if there were still no deterioration showing on the x-ray an MRI would be done to rule out Perthes/hip dysplasia.
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  • Posted

    Perthes for me was progressive, started off as a vague pain at 13 while playing football to several xrays and then completely immobile and on crutches within a year. I heard that it is caused by getting a knock and the blood not feeding the cartilage which allows the hip bone to rub and also not develop properly but that might not be right.

    I havent heard of it being seriously bad then subsiding so I hope it isnt that. The good news is that he sounds pretty tough so if he did get it he wouldnt let it take over his life, it didnt for me and its been 31 years since I was diagnosed.

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  • Posted

    I most likely think it's perthes. I showed symptoms at the age at 5 after a soccer game I played at school. I started limping from hip pain and was less active (but trust me this was very odd to my parents because I was extremely active) one day my mother took my to a doctor because she became worried. the doctor had no clue and started doing tests. One year after it was confirmed. I had to use crutches for 5 years and physically therapy and check ups every month. It's been 10 years since then and unfortunately nothing's changed but I only had about 6 major episodes in my case so that's not so bad I guess.

    If my prediction is correct I know this will be hard for him for I have been there I can only tell you that he's going to need a friend and support (I had my twin sister to help me) and to try explain to him even if he's young it'll give him comfort at knowing whats wrong (my parents gave me little information and I was so clueless and felt weak). This'll limit him from playing as he usually would and it will be hard but knowing that people will be by your side helps a ton. I'm 15 I know I'm young to give advice but I thought you should know what to expect if I'm right.

    I wish many luck and hope for the best😬

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