Odd Perthes Case
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My son limped for almost 3 weeks following a virus. When his limped didn’t stop I took him to the Er. They ambulanced us to a Children’s hospital while we sat for hours being told that it was Skiffy and toxic synoptic. Then finally Perthes after another round of X-rays in the same day which by then was the middle of the night and the ortho looking at X-rays through the computer system. We followed up 2 weeks later and told to restrict all activity. Came back 6 months for new X-rays. Doctor (which is the first time we seen the doctor) said looks fine no Perthes resume all activity. ??😣😦. Ok so we go back to regular activity. Play little league football hesitatently. Fast forward almost 2 years later. Son is having several groin pain for weeks. We See two doctors concerned about testicular torsion. Ultrasound reads fine. We are waiting on a 2 month wait to see the urologist specialist with orders to go straight to ER if pain doesn’t let up. Then the pain goes from intermintent debiltating testicle pain to hip pain. Limping is off and on and my son is choosing not to be active because of pain (that isn’t his nature). Then when he is he almost won’t walk the next day from the pain. I call the ortho clinic who now wants a new referral says over the phone groin pain isnt linked to Perthes. The internet says it is??? Sooooo?? I’m so confused. I have 3 different appointments we are waiting on now. Pediatrician. Urologist. Ortho and then a 2nd opinion at the Shriners children hospital 6 hours away. All going to be 2 months out beside the pediatrician which will be Tuesday and hopefully I will be able to push them for a new X-ray.
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tina00201 Mandajean16x
Posted
Pester everyone to get an urgent X-ray, it is the only thing, except for a MRI scan, that will confirm or deny Perthes. I would restrict all sport activity until you have results, Perthes definitely can cause groin pain and hip pain, knee pain is the usual initial presentation along with a limp or difficulty walking.
My son was 3 when he started limping intermittently, we took him to our GP who referred him to a Orthopaedic consultant but we were sent a letter saying we would be seen within 20 weeks. Over the next 3-4 weeks his symptoms worsened, couldn't walk up the stairs, could only walk a very short distance before stopping unable to go any further. I called the hospital several times begging for a sooner appt, I think in the end it was my repeated calls to the consultants secretary that got me an appointment within a week.
When we saw the consultant he examined him and he diagnosed Perthes before the X-ray, but sent us for the X-ray and we went straight back to the consultant after the X-ray, he was shocked when he saw it, he confirmed Perthes and said that the damage was so bad to the head of his femur, that he had nearly worn into his growth plate, if we hadn't seen him so soon it would have been too late and his leg would have not grown correctly in the future. He said my son had to stop walking immediately, for at least 1 year and would need a wheelchair. This led to my son being admitted to hospital numerous times in immense pain and needing traction and very strong pain relief. We eventually had his bed downstairs and they let us bring the traction equipment home and do it ourselves. Unfortunately our son spent 5 years in his wheelchair before his Perthes started repairing and he was slowly allowed to learn to walk again, with Physio and hydrotherapy. He eventually was signed off from the hospital when he was 14years.
he still has pain in his hip, especially in cold weather, and may eventually need a hip replacement later in life. He suffers a lot of back pain partly due to his abdominal and back muscles not strengthening during his early years and still havent done so now.
My best advice to you now is chase everyone you can to get him X-rays, be a nuisance until they get fed up of you, get someone to relook at his previous X-rays especially someone experienced in Perthes, not all doctors will recognise Perthes, especially if your child still has a good range of movement, my son had extremely good range of movement which a Perthes child shouldn't have but we didn't know at the time he has Hypermobility, so ask if they've been trained to recognise it.
A good test you can do at home yourself is lay your son on the floor, on his back, bend his legs and put his feet on the floor in front of his bottom, whilst holding his feet on the floor, let his legs drop out to each side (a bit like a frog, they usually use this position for X-ray), now see if there seems to be a restriction in how far his bad leg drops out compared to his good leg, if this does show a difference it can indicate a hip problem.
Hopefully when you see the Paediatrician they may help you and get him seen sooner and xrayed.
I wish you lots of luck. Xx
Mandajean16x
Posted
Our referral appointment was today and has been rescheduled due to weather. I was looking at his original X-rays from ER. They originally thought he had SCFE. Ugh.. This waiting game is getting me. And it's so hard because I am having to make him not be active.
tina00201 Mandajean16x
Posted
I'm sorry they've cancelled the appointment. How old is your son and which hip did they say had Perthes?
tina00201 Mandajean16x
Posted
Hi, I've studied the X-rays you've shown and whilst I'm obviously no expert on reading X-rays, I have spent 10 years of seeing Hip X-rays every 3 months or so for my son and have been involved with his nurses and doctors reading the differences on the X-rays each time.
To me, it looks like on your X-rays the right hip (left as you look at the picture) there seems to be slight flattening and depth to the head of the femur, which could be normal, and there seems some evidence of the growth plate beginning to join which is usually normal depending on the child's age.
On the left hip (right of the picture) I think it looks like there is a tiny piece pulled off the top of the head of the femur, as far as I know that isn't normal but as I say I'm no expert but as a parent if I saw that in my sons X-ray, I'd definitely be asking questions about it.
If your son is still in a lot of pain and your appointment isnt very soon, I'd be inclined to take him back to ER and hope they'll do X-rays while your there, ask to see the X-rays and look for the things that stand out on the first X-rays, and push the doctors for answers.
I know how frustrating it is, but the parents that make the most noise are the ones that get dealt with, that's how my son now has 2 legs the same length if I hadn't made so much noise, it could have been a very different story.
good luck.