Harrison's story

[mitch]

Harri started complaining of groin pain just before his 11th birthday. His very thorough GP immediately sent him into hospital for an xray which was initially diagnosed as a Brodie's abcsess or benign tumour (osteoid osteomo) in his femoral neck. An MRI followed and the doctors decided on a course of IV & oral antibiotics. At 6 weeks he showed little improvement and a further xray questioned Perthes as they could now clearly see necrosis of the femoral head but he still has this other cyst or tumour in his femoral neck. Another MRI and xray confirmed Perthes a few weeks later. I would be interested if anyone else has experienced cystic changes in other parts of the femor as part of Perthes.
Harri has been really good through this whole ordeal but went on an emotional roller coaster ride for a few weeks trying to accept it. He is incredibly sporty - was a very successful gymnast, holding a national title, and loved his cricket and rugby as well. Effectively he was on the go 6 days a week. Understandly this has been a huge adjustment for him.
He is now with a good specialist playing the wait and see game. I know his age is against a good recovery. Any advice or information anyone has to offer would be appreciated.

[tanya]

Hi Mitch,
My son Samuel is 11 also. He was diagnosed just before his 10th birthday. Like Harrison he was a sporty kid. His story is on this message board. When was Harrison's dianosis and have you any idea how much of the femoral head is involved? Where are you based?
Tanya.

[mitch]

Hi Tanya. Harrison presented symptoms at the beginning of May and was officially diagnosed in July. He has 50% of his femoral head involved with this other cyst or whatever in his femoral neck. From everything I have read, it seems that having only 50% or less affected makes for a better outcome although I am not sure whether his age overrides that. As you can see, we are still in the early stages and still a bit in the dark despite all the information I read. Harri now has quite a limp and is losing ROM weekly. The thing that I find really hard to gauge is how much he should be using it. The specialist says use crutches when in pain - others say stay off it as much as possible. At the moment Harri uses his crutches for speed around the playground because if he limps everywhere it gets very sore. At night he is starting to ask for panadol to get to sleep. It would be great to have some communication with someone like you who has been going through it a lot longer, even though I know all cases are different. Any words of wisdom would be greatly appreciated.
We live in Christchurch.
Michelle

[Donna Brown]

Hi Michelle

Do you know if Harrison's femoral heads are contained? This is really important, as is loss of ROM (range of movement) and increased pain.

The reason that restrictions are placed on these kids, is because the more they move their hips and impact them, the more inflammation in the hip joint and inflammation equals pain. However, they do need to keep using the joint, to maintain ROM! This is why crutches are used, as they can reduce their weightbearing on the affected leg to say 50%, but still keep the joint moving and the muscles working.

At Harrison's age you can't afford to do the *wait and see* approach - this is for children diagnosed before 6 years of age. Once they finish growing, thats it - there is no more repair work that the body will be able to do. Have you had bone age xrays done? Statistically Perthes kids have a younger bone age than their chronological age, however, this doesn't mean that all perthes kids are like that. They younger the bone age is, the more time there is for their bodies to repair the damage done by both perthes and any surgical intervention.

There is a specialist in Christchurch called John McKee who I understand is very good with helping perthes kids. From another family, I have heard that he can be a bit abrupt, BUT he knows his stuff and would be the best surgeon I could recommend you go to in your area.

There is nothing wrong with routinely giving Harri some panadol before he goes to bed every night. If it helps him go to sleep and stay asleep, because there is little or no pain, then just do it. The other things that can help is a hot shower or bath before bed, a hot water bottle or heatpack across the sore part of the hip. If you have a bath, then some epsom salts dissolved in the water (approximately a handful of them) and some lavender essential oil if you have it, as this calms the mind.

Hope this helps and I know that Tanya has plenty of experience dealing with Samuel through this and will have other ideas and information for you too.

Donna Brown

[mitch]

Hi Donna,
I presume Harrison's femoral head is still contained - I am sure if it wasn't he would be in much more pain during the day and have even less ROM. It is really hard to tell when you are dealing with an ex gymnast as they have a high tolerance to pain as they are used to pushing themselves really hard. Four months ago he was doing splits 3 ways - now when he is lying on his back with his knee bent and leg pulled up, he can get his leg outwards less than a 1/3 of the way but can't turn it inwards at all. As a "new' Perthes parent though, I have no idea how much ROM they should have at this early stage of the disease. We have switched to John McKie as a friend of ours is in the medical business and recommended him. We have had one consultation in mid July and Harri is due for another xray at the beginning of September. My understanding from Dr McKie was that there wasn't too much to do in the early stages although as you said, I thought with older children they were more aggressive in their treatment from the start. He hasn't had an xray done to determine his bone age. I questioned physio but he said it wasn't necessary yet although I would have thought there were some exercises he could do to help strengthen and support the hip. I think I am going to pursue this. Anyway, we are trying to swim as much as possible. As a parent you want to do as much as possible to ensure the best outcome and we are taking each day at a time trying to think positively about the things he can do.
Just out of interest, has anyone tried any alternative therapies? When I was doing some research, I noticed that there was a website on Chinese herbal medicine for improving blood flow in Perthes. With Harrison having so much less time for repairing damage, we would be interested in anything that could be beneficial.
Thanks for your help Donna. It is great being able to correspond with other people in similar situations for advice and support.
Michelle

[Donna Brown]

Hi Michelle

We have tried Bowen Therapy and massage, which have both helped to realign the body and also with relieving pain. We have also tried chondroitin and glucosamine, but getting her to take them on a regular basis has been an issue. One thing that I did find helped was magnesium, as it is for helping with spasming muscles.

Swimming/hydrotherapy is the best exercise of the lot for perthes kids and so its good that you are pursuing it.

Some specialists just aren't into giving these kids exercises and yet you have to wonder why? In any situation, it really does come down to use it, or lose it.

The high pain tolerance is definitely one of those things that perthes kids have in common too which can be a real bug bear when you are trying to figure out where they are at pain-wise and what you can do to help, if anything.

There is an online support group that I would seriously recommend to you. Its based in the States, but you will find a good handful of kiwi's on there now, including myself and Tanya. If you are interested, email me via [e-mail] and I can arrange an invitation to the group. There are so many families on this group - all of whom have children with perthes, so totally understand what you are going through - they are also of varying ages, stages of perthes and differing treatment options.

Donna

[tanya]

Hi Michelle,

My home town! Have family in ChCh still so one day we may be able to meet. Would be great for the kids.

Our specialist has always been an advocate of use it or loose it. Samuel has 70-80% invlovement and as a Herring C is in the worst catagory basket. But he walks well, is reasonable strong and has good ROM. ROM is not what it used to be but good for a Perthes kid. He is VERY unfit but that will come with increased activity as his restrictions are lifted. He uses crutches too but the physio has been adament that he walk properly with them in order to avoid muscle wastage. It's worked although I have had to be hard on him at times.

He seems to cope well with pain but he does have Panadol each night. Helps him sleep better to have the edge taken off the pain. He is still on full restrictions - no running, skipping, jumping, sport e.t.c. and at the moment any distance longer than 300m is too much requiring crutches or wheelchair.

50% or less does make for a better outcome but is no gaurantee. There are none with Perthes sadly. As long as he is contained there isn't much that can be done at the moment but I would be concerned if the Dr was still playing 'wait and see' if he was subluxing, in lots of pain or ROM non existant. The next visit may show more and start the ball rolling. There are some exercises that can be done on Donna's website - might be worth thinking about those. It's not easy to keep it up 2 times a day but I really believe that is one of the factors that has helped Samuel have a better outcome.

Swimming is great exercise and if Harri is keen I would imagine there would be a swim club close to you he could join. Breaststroke is the one style to watch out for but any coach worth their salt would be able to modify or lower their expectations there.

Keep asking questions and looking for information. You will need to be a strong advocate for Harri over the next few years and the best way to do that is to be aware of the many options out there.

Tanya.

[tanya]

Hi Michelle,

How's Harri? When do you see the specialist next?

Hope the new school year is treating Harri well and he's settled into a new routine.

Tanya.