PERTHES
Legg-Calve-Perthes Disease (LCPD)
Support and information for parents of perthes children and adult perthes survivors
Frequently Asked Questions
How long will this last? Generally around 3-5 years from the first stage to 'Perthes healed'. However, it will vary with every child and can take longer.
My child has so much pain at night. Why is this? My guess on this would be that after a day of being busy, when you get to bed, you are trying to quiet your mind and relax your body for sleep and without the distractions of the day, the pain is able to come to the fore more. You can help your child by having them on regular pain medications and giving them a bath or shower before bed. If in a bath, add a handful of epsom salts to the water, as this helps to soothe muscle spasms and if you have it, some lavender essential oil as this is soothing to the mind. If you are up for it, a gentle massage to loosen muscles can help,as can a heat pack placed across the pelvis as the child falls asleep.
What options are there treatment-wise? This will depend upon the child's age, % of involvement and what your specialist is trained to do. The younger child (generally under 6 years) is more likely to 'wait and see' - this will involve (usually) 3 monthly visits to the specialist, usually involving x-rays and checking of ROM. If your child is over 7 years of age, you are more likely to have more active management of perthes - depending of course, on the severity. This could include traction, an arthrogram and petrie casts, a femoral or pelvic osteotomy or an external fixator.
So many x-rays - is this necessary? Unfortunately, yes! Your specialist needs to see what is happening to the femoral head - how much damage is being done, whether or not the femoral head is contained in the socket (acetabulum). Remind the radiographer to use a shield everytime too.
Why the restrictions? This is to reduce the inflammation in the hip joint, which increases the amount of pain that your child has. It will not do much to stop the damage that Perthes is doing, as this will continue to happen regardless. Please try to adhere as closely as you can to these restrictions, particularly avoiding activities such as jumping on trampolines. Your specialist may also ask that your child use crutches or a wheelchair to minimise weight-bearing.
Is there a set treatment plan that will help? Every case of Perthes is as unique as the child. Your specialist should be able to predict the course it will take to a certain extent based on the age of the child, % of involvement etc. Each treatment plan therefore needs to be tailored specifically to the child, based on what your specialist is trained to do and what is right for your family. There is no 'one size fits all' treatment unfortunately.
I've been told that a diagnosis before the age of 6 years, means no or little chance of surgery. Why is this? It is generally accepted that a child under 6 years of age, will have a better outcome and so the treatment plan is usually 'wait and see', as there is so much time available before they finish growing. However, girls mature faster than boys, so that age should possibly be adjusted to 5 years for any girl. Also, a lot will depend on the child's bone age, which is checked by xray. Again, generally Perthes kids have a bone age that is younger than their chronological age, but not always. Younger children also have a higher level of cartilage in their bones, which is why they don't break bones, but get greenstick fractures. A lot of surgeons prefer not to surgery on bones like this unless absolutely necessary.
Is there anything I can do to minimise the chances of surgery? Get your child swimming! Its the very best exercise for your child whether they are just playing in the water, actively swimming or going to organised hydrotherapy.
Is surgery required for younger children (under 6 years)? It can be and it will be based on whether or not the femoral head is contained and whether or not ROM (range of movement) is reducing. However, at least 80% of children diagnosed with Perthes won't need any surgical intervention at all, as their body will repair the damage over time.
Is surgery required for every child over 6 years? No. Decisions for surgery will be made on the same criteria as above, as well as what the family feels is right for them.
So I can decide not to go through with surgery? Absolutely. But, please be sure that you understand completely why your specialist is recommending the surgery and what the predicted outcomes would be with, or without surgery. Then you will be making an informed decision. If you are not happy, then get another opinion. If you get a consensus from a couple of specialists that surgery is needed, then you will need to re-consider this, as this will mean that surgery will offer your child the very best outcome.
Why do older children need more active care? Once your child finishes growing (mid to late teens), that's it, no more repairing of the damage from Perthes and/or surgery. Your specialist will possibly mention that there are certain 'windows' of time where certain procedures will have maximum effect and that outside of these, it's probably not worth considering.
What is the best piece of advice you can give? Educate yourself about this. Learn the terminology, so that when you meet with your specialist, you don't waste valuable time getting him/her to explain everything to you. Knowledge is power and you need to make informed decisions every step of the way!
Your attitude through all of this is vitally important. Your child will take their cues from you on how to react to this, so try to be as positive as you can. Its ok to be sad and cry with your child, but try not to let it get to the point of self-pity as that will add other problems. I can seriously recommend sitting on the floor of the shower and sobbing your heart out! Its a safe place to do this and get the worst of those feelings out of your system, before getting back onto facing whatever challenges the day may offer.
Remember that perthes will do, what perthes has to do! There isn't a lot that can be done to stop it working through the different stages, so its important to support your child through this time and ensure that they are emotionally well and if necessary, go out of your way to maintain their contact with their peers. Perthes is isolating by virtue of our children being sidelined from so many activities that their peers do, let alone socially isolating them as well. It is possible that they will act out and possibly show signs of depression as well, so keep an eye out for these and get help if needed, so that your child gets through this with their self-esteem and confidence as intact as possible.
Also, if you have friends or family who can give you a break, don't turn it down!