Mike (5)

[p51191]

Mike (5) (Ireland) just received his first diagnosis of Perthes a few weeks back. Initially a limp and some pain was thought to be irritable hip. As it disappeared for a couple of months and X-Ray was clear. But when it reoccurred a few months later and didn't go away, he was x-rayed again and the consultant was in no doubt its Perthes. Bit of a shock, tbh and trying to do our research.

At the moment Mike has a severe limp,most of the time, some pain, on and off and his walking is greatly reduced. He manages to jump/crawl around still, and wrestle with his brother. Hes been doing swimming for a long time now, and has no problem with that. Dr told to us to expect it to get worse over the next few months. Advise was treat with ibuprofen on demand, and let him be as mobile as he wants.

Hes been a very active child up to now with lots of energy. Loved running. We'd like to direct this as soon as possible into more swimming but not sure what limits to put on him. Also how to deal with practical things like the school run (was walking, driving is awkward, no parking etc) and physical exercise in school. He seems to be getting worse quickly and I expect this itself will dictate our solutions.

[Donna Brown]

Hi

Perthes is pretty self-limiting and that will change, as he adapts to things too. There will likely be an ongoing pain, but its pretty low level stuff and the kids soon figure out how to ignore that and get on with life. Also different stages of perthes can affect the kids differently too, as fragmentation for some kids is really painful, but for another child it might be regrowth that affects them the most. Some kids hurt right the way through and other kids don't have much pain at all - makes it really easy to predict what to expect!

Swimming is the best exercise of all. I'd be encouraging Mike to do everything in the pool, but maybe take it easy on the kick that is used for breaststroke. Its a great movement, for reshaping the femoral head and maintaining ROM (range of movement), but can be painful. See how he goes and if he tolerates it without any extra pain, then keep it up.

The other thing you can do is look for someone to take him for hydrotherapy, which are exercises done in the water, using the movement of the water to add drag to his movements, which makes the muscles work a little harder. The advantage this has over traditional physiotherapy, is that being in the water means he isn't weightbearing. If you go to the website page called 'therapy options' you will see that there is a link out to extra photos of my daughter doing some of the stretches and exercises that she has done at hydro, if that helps. There are also descriptions with those photos, explaining what movement is done.

Are you eligible for a mobility card or sticker of some sort? I know that here in New Zealand and in the States, that perthes kids can get these cards/stickers, to enable the parents or caregivers to park closer to the school or shops, to minimise walking.

If you contact me directly at [e-mail] I can send you a printout that you can give Mike's school, so that they have a better understanding of what is happening and what to look out for too.

Hope that helps

Donna - NZ