Chronic pain in an 8 year old with AS.

[Al1son]

It's just hit me that DD2 is stuck with her painful joints long term. She's been in moderate to severe pain non-stop for about a week now and I'm having constant battles with her to try and manage it. It is a bit up and down and she's had a month or so before that where it was mostly mild and things were much more manageable but now it's worse than ever.

She is terrified that taking codeine will give her constipation despite taking lactulose and double dose Ibuprofen plus paracetamol are not working well enough.

She doesn't recognise lower levels of pain or moderate her activities when things are painful because of her AS. School don't recognise the signs or believe her when she says she's in pain.

She's diagnosed with hypermobility syndrome but I'm worried that this isn't the explanation for her hip pain.

The constant nature of the pain is really starting to get her down but although she's seeing a CAMHS psychologist she doesn't get any help with coming to terms with or coping with it.

It's breaking my heart to watch her and to send her to school knowing that her teacher won't offer any more support than she absolutely has to.

Any hints or tips on getting through this would be gratefully received.

[cory]

Hypermobility syndrome could well be the explanation for her hip pain: that is one of the main areas of pain for both my dcs. And it's definitely been our experience that paracetamol doesn't even touch the pain.

Ime you have to push very hard to get a CAHMS counsellor with experience of pain management: we are just about to change dd's counsellor for this very reason. The other person your dd should be working with is an OT: if she cannot moderate her activities, she may still be able to perform movements a certain way, do you think?

[Al1son]

Thanks cory.

She is quite rules bound so if she can be taught to change how she does something she'll probably do it consistently which may help. She has her first physio appt next week so maybe that will help.

Can I just ask whether your DD's pain has a pattern to it? DD2 is always horrendous first thing in the morning which seems to fit the pattern of Juvenile Arthritis more than what I've read about hypermobility syndrome. It also seems to get a lot worse for no apparent reason, certainly not related to increased activity levels.

I know I'm sounding paranoid but my girls have been misdiagnosed so many time occasionally with dramatic consequences that I'm finding it hard to take anything at face value.

[cory]

I know what you mean, Al1son about the misdiagnosis.

I'd say dd is definitely worse in the mornings; she often picks up towards the evening. Sometimes related to activity levels, but not always. Also stress related. And sometimes for no apparent reason at all.

Both dcs started getting hip pains round about the age of 8, so that would fit. And then back pains some time after that (sorry, don't want to depress you).

But I would definitely have her investigated for juvenile arthritis if you think there is any chance.

[catherinea1971]

Hi Al1son, I was diagnosed with HMS 3 years ago (I'm 40 now ((gulp))).
My hip pains started when I was about 8 and I ended up being hospitalised and being put on bilateral traction for a week which I now know was one of the worst things they could have done, they just didn't have a clue back then...
I still get the hip pain, and I feel for your dd, it is a really awful pain and I have yet to find any drug that really helps. There were never any triggers although as has been said already mornings were worse. I get pain in most of my joints now but I'm used to it and only take pain killers a couple of times a week. When I get the hip pain, which has become less frequent over the years, I do find that getting a warm bath helps for a while and also heat packs are good.
With regard to your daughter seeing a physio, have a good chat with them first, many have little to no knowledge of HMS or how to provide effective physio, there is a book for physios about HMS, I think you can buy it on amazon.
Have you looked at the HMS society website? There are some interesting reads on there and also a forum with plenty of helpful people.

If you don't mind me asking, who was it who diagnosed your dd?

[catherinea1971]

I also meant to say that you could ask the physio if there is a hydrotherapy pool that your dd could use, I haven't used one but I hear that they are very very good.:)

[Al1son]

Thank you both for the reassurance about the morning pain and the lack of identifiable triggers.

I think I need to phone the physio before she goes to talk about her ASDness because her responses will be very atypical. We're seeing the physios at B'ham Children's Hospital so hopefully they will know their stuff but we'll see.

We've found the warm baths help at night but can't get her in them in the mornings because of the break in routine. She won't let warm packs anywhere near her which is a great shame so I'm trying to think of other ways to use heat to help.

The hydrotherapy pool is a great idea. She loves swimming but gets very cold. I will ask of they can refer us to somewhere closer than the hospital.

I will give the stress link some thought too. DD2 has refused school a couple of times recently and I'd wondered about pain being a cause for the refusal but not about the stress in school making the pain worse.

Does anyone know if I should talk to her CAMHS psychologist about pain management counselling or go through the hospital?