These are some of the questions I get asked most on my Facebook page Adults with Perthes Disease and have come across on other Perthes related pages and groups. I am answering them as best I can from the research I have done on Perthes over the years and on my experiences of having had it myself. However I am not a medically trained expert in anyway and advise you listen to your doctor and medical team first and foremost.
Is pain down the leg normal?
Referred pain down the leg is common often to the knee or even feet. As a child I sometimes got shooting pains down the leg from my hip. As an adult I get a dull ache down the leg possibly due to my bad walking style. My feet turn out too much as did my knee before I had my hip replacement. I have found orthotics (insoles inside my shoes) from podiatry helpful. Mine have a slight slope on the heal to help turn my feet forward a little.
The non Perthes affected hip and leg sometimes hurt, should I be worried?
No, this is fairly common. The good hip often has to compensate for the Perthes side by taking more of the body weight meaning the muscles sometimes become rather sore. Perthes can affect both hips, known as bilateral Perthes, but this is quite rare, occurring in only about twelve percent of cases. If the pain in the non Perthes hip occurs frequently and becomes really bad it is worth mentioning it to the doctor just in case to get it checked out.
How much should my child be non-weight bearing on the Perthes hip?
This is something you must listen to your doctor and physiotherapist about. It depends on what stage the hip is at during the Perthes and re-growth. Whilst non-weight bearing swimming is usually advised by physiotherapy as a good way to keep the muscles from getting too weak, so that when full walking does resume the muscles are not too sore.
What pain medication seems to be the most affective?
I will never advise specific drugs and you should never take drug advise online for safety reasons. Without knowing a persons medical history it is not a good idea to suggest medications. People can have allergies to certain medications or find that the side effects outweigh the benefits for them. What works for one person may not for another. If you wish to try pain medication, talk to your doctor who can prescribe something for you. A good doctor should keep an eye on you with regular check-ups when on any new strong pain medication. There is a place for pain medication if used sensibly and they help a lot of people.
Any ideas on non-medication pain relief?
I found a microwave wheat bag very helpful on my hip. When sitting or lying down it kept the hip warm and unlike a hot water bottle it bends around the joint. When moving about a stick on heat pad can help, but must be stuck over the underwear and not directly onto the skin or it can burn. A TENS machine uses mild electrical impulses to help with pain. I found one somewhat helpful, but it took some getting used to the electric pulses. A warm bath is great for any muscle or joint pain, especially with Epsom bath salts.
Is a chiropractor a good idea?
A chiropractor uses their hands to help relive problems with bones, muscles and joints. According to the NHS website they are considered an alternative and complementary therapy. They are not widely available on the NHS and private treatment can cost anywhere between £30- £80 a session. A chiropractor should by law be licensed, but is not medically trained as a doctor. I have never been to a chiropractor myself and can’t say they are good or bad for you, but I would suggest trying a physiotherapist first as they are recommended by doctors far more often.
Would a memory foam mattress help?
I think a memory foam mattress might help a tiny bit, but not a great deal. An orthopedic mattress is very expensive and night time pain can be helped in other ways, such as a microwave wheat bag or a cushion or pillow under the hip. If a new mattress is needed anyway it might be worth asking your doctor what they suggest, but I would not rush out and spend a lot of money on one without some research first.
Is bed wetting Perthes related?
Not directly. Many children wet the bed and it varies as to when they start and stop doing it. It could be that the hip pain is causing anxiety which is in turn causing bed wetting. Also getting up in a hurry for the toilet when in pain can be tricky.
Does Perthes lower the immune system?
No, some children get more ill than others with or without Perthes. There is so far no link to Perthes and the immune system.
Is Perthes Hereditary?
Research on the causes of Perthes is being done. In the UK an ongoing study suggests there maybe a hereditary link in a small number of cases, but not in most. There does not seem to be a high chance of passing it on to children if you had it yourself, but I gather there is more research results to be published on this fairly soon.
As an adult I am experiencing back pain, is this related to having had Perthes as a child?
It could be, limping for years, long term use of crutches or a walking stick and walking with a bad gait can affect the posture. I have had back, neck and shoulder pain on and off all of my adult life. I have found simple exercises from physiotherapy help me a lot if I keep them up regularly. A shoe raise in childhood can help to prevent limping all the time.
How can I get a buggy or wheelchair for walking longer distances or bad days?
Physiotherapy can provide wheelchairs, but are often reluctant for children as they think it will cause the child to become overly reliant on it and not walk as much as they should, but I found a wheelchair very helpful on my worst pain days and for days out with more walking involved. You can contact your local Red Cross centre who often have wheelchairs and buggies to loan out on short or longer term basis. The Perthes Association in the UK have good advice on where to get hold of any equipment you may need. There are various local charities that help disabled children to get equipment; an internet search can often provide a link. Some larger tourist attractions also have wheelchairs you can loan for the day, often worth asking at the ticket office or checking online before you go.
For more information on Perthes Disease the Perthes Association are very helpful and can answer a lot of questions you may have. https://www.perthes.org.uk/
Another site you may find helpful, especially if you are in America is Perthes Kids Foundation http://www.pertheskids.org/