Lower back pain years after Lcpd

I think I'm going to have to go see someone, I've never been to chiropractor before but I'm to the point of trying it. I don't wear the lift in my shoe as much as I should. I know I'm out of whack. Thank you, it's nice to finally have a place to talk about Lcpd.

My legs and back would feel sore/tired if I walked any long distance when I was younger but it went away as I got older. The Drs had told us years ago I possibly would have arthritis in my back/hips as I got older. I haven't had any X-rays since age 18 on my hips, but if the pain continues I think I will have to go see what's going on.

I hope everything turns out ok for your little one!

Hi Tina

I hope you don't mind me replying. I wanted to ask what were your sons symroms when he was first diagnosed. I was told today my 4 year old has perthes but require mri to confirm.. He only had x Ray. He had a limp for two days and that's it. Since then he has been fine apart from the X-ray showing abnormalities. It's hard to know what is ahead. Can't help but be concerned. How is your son now

Hi Sarah,

I'm sorry to hear your son has Perthes, it really should be able to diagnose him just from an X-ray but that depends on how mild or severe it is, it might be that your sons has been caught early so the X-ray isn't as clear. The MRI is a difficult thing for a little one to go through, a big noisy machine, so they may suggest a general anaesthetic for it. Don't be frightened by my story I'm going to tell you because my son was a rare case. My son first started limping and complaining of knee pain when he was 3, he was referred to the hospital but while waiting for the appointment he got worse and struggled to go upstairs or walk far. When we first went to the hospital, the consultant told us what it was before he had the X-ray, then sent us down for the X-ray to confirm his suspicions and a few minutes later it was confirmed. He had a severe form of it and the head of the femur, the rounded ball joint, was eroded into bits and had nearly worn into the growth plate. We were told he had to stop walking immediately and he would be in a wheelchair for a year, not allowed to weightbear at all, it was devastating. After this he deteriorated and started to suffer severe pain and we ended up in hospital lots of times, usually for 2 weeks at a time, with him on traction and confined to bed and me staying with him 24 hours a day. In the end we were shown how to do the traction and allowed to take it home, we turned our dining room into his bedroom and did the traction ourselves. He suffered dreadful pain, was taken to theatre a few times for them to look into the hip with a camera, bone marrow biopsies because they thought he might have cancer because his pain was more than it should be and he was recovering as quickly as they wanted but the results were ok. We had amazing treatment with the consultant we had, he was known as one of the best in the country. In the end my son was in a wheelchair for 5 1/2 years before we saw his hip start regenerating and he slowly started to walk again when he was 9. He's having a few problems now but mostly to do with weak muscles and because he has a spine problem. My story was a nightmare, but mostly it doesn't happen like this, you will find different doctors treat it differently, some want to operate others want to be more conservative. My advice to you would be, don't let them operate unless his hip starts slipping out of position if it starts becoming misshapen, it's really important to keep the head rounded which is why our consultant believed in the conservative approach, and non weightbearing especially in little children. I'd also suggest you join the Perthes Association, they are based in Guildford but their website is great for information and if you need to talk to someone about it, they are very helpful, they also do children's parties a couple of times a year, the Christmas one is brilliant and meeting other parents in the same position as us really helps. I really hope your son has a mild form, and if you have anymore questions don't hesitate to ask. Be strong, you will get through it. What area do you live in? Let me know how you get on after the MRI. Xx

Thanks Tina for your response. I appreciate it. You must have had such a difficult time while your son was growing up and especially when he was in a wheelchair. I have to do some reading up on this as I really don't know much. The doctor told us he has it but also needs mri. I could see one hip was rounded And the other had a small chip out of it.

Im thinking is this something that will develop over time or could it stay the same? I know there is different phases. I guess there is a lot of bad stories on the Internet so im trying to be positive. He's such an active little fella. In your experience if they caught it young, should he not do sports etc..? Sorry for all the questions. I wish you well with your son. Im in Ireland so I'll check out the Guildford group. Thanks again

Perthes basically starts because there is an interruption in the blood supply to the hip bone, the bone then becomes soft and starts to break down, this process is probably what is happening to your son at the moment and, if he has been diagnosed early, the appearance on his X-rays will show the progress of the breakdown. He will probably be checked every few months. It's best that he doesn't do sports, running, jumping etc can cause further damage to the softened bone, so I'm afraid you might be in for a tough time trying to slow him down. What the doctors are waiting for is the blood supply to return to the hip and new bone growth to start, at this point it is really important that he doesn't over do it, because it's extremely important that this bone has the chance to grow back with a rounded head to ensure it will stay in place in the socket. It is an awful lot to cope with, and you will read a lot of conflicting info on the Internet, when our son was diagnosed, we were devastated and contacted the Perthes Association because we wanted a 2nd opinion and asked if they could recommend anyone, but when they knew who was treating our son, they told us we had already got the best and if he was saying to stop walking and use a wheelchair, that's what we should do. He amazed us with how quickly he adapted to it, within a week he was pushing himself, scaring the teachers at nursery when he would charge down the ramps towards a wall, but he always stopped. Has the consultant given you any instructions as to what he can & can't do, has there been any mention of him using a wheelchair? 

Hi Tina

The consultant said don't stop him doing anything at the moment so maybe when he has the mri I can talk to him about recommendations then. He had no other symptoms at all and isn't limping or in pain. We will be referred to a children's hospiral for care and he said we will have regular x Rays to look at progress. It is strange that he said for him to keep running etc...

It's strange but you can speak to lots of Consultants and they could look at one child and all come up with different treatment plans. All I would advise is if he does let him keep walking, be very cautious over how much jumping and anything that jolts through the hip, he does, especially avoid trampolines and bouncy castles. The most you can do to protect keeping the hip in a rounded shape the better outcome he will have in the future. Will be thinking of you both and hope that his MRI shows a mild form. 

Hi Tina

We had another appointment with our son with a recommended surgeon after not being happy with initial consultation. He confirmed perthes and said he was optimistic. He had the x Ray from oct and one from feb to compare progress and there was not too much change. He has recommended no running jumping etc.. He suspected because it started with a limp in the other leg that he probably is in that hip too. We have mri in two weeks and then back in May.

I don't know what to be thinking as it's very much wait and see game. He is starting school in September so no running in yard etc.. Hope your son is ok

Take care.

Hi Sarah, I'm glad you've had a second opinion and had better advice, our sons started with a limp and knee pain and X-rays now show he probably had it in both hips. It's very frustrating when all you can do is wait and see, we found it very hard as we'd been told he'd be in a wheelchair for a year but it was never ending and took 5 years, our son was a rare severe case and most children don't take this long. It's going to be hard restricting your sons movements, in some ways it's easier when they are in a wheelchair because they can't push things, he's going to want to do the same as his peers but the mire restricted he is the better end result he will get, and later in life he will get less problems. I wish you lots of luck and hope that he will soon be on the road to recovery. X 

Hi Tina, your poor  son. Would that mean staying off the other hip now? It's such a cruel disease. We're trying to be positive as from the outside he looks Finn and still doesn't seem in pain. MRI on April 5th so fingers crossed, thinking of you and your son. Stay strong x

So sorry your son has had such a difficult time.. I had LCPD in both hips but since mine was caught so early all I had to do was wear the corrective brace.

I've noticed if I wear the lift in my shoe it helps, I don't have chronic pain like I've read others having, just every now and then. I think I need to head to a chiropractor I'm sure I'm out of line, the difference in my right leg is at about an inch and half.

Good luck, I hope everything works out and you guys find some answers.

Thank you. my son has suffered a lot of back pain and because of this he had a lot of MRI's which showed something called a Syrinx (cyst) in his spinal cord just below his neck, which may have been there since birth but could have the potential of causing severe problems if it changes, so we have to watch for signs if numbness or pins and needles. They said this wasn't the cause of his back pain. Worryingly over the last couple of weeks he has developed worsening low back pain, which he's been trying to hide for fear of more MRIs, but today he could hardly get in the car so something needs to be looked into why it's happening and whether it's linked to his hip.