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Hospital, leg pain, stuff - do I make him walk?

(28 Posts)
justaboutchilledout Mon 12-Nov-12 18:47:29

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justaboutchilledout Mon 12-Nov-12 19:49:45

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TheLightPassenger Mon 12-Nov-12 19:52:36

well I have no sound advice BUT if there is the possibility of error, I would definitely err on the side of him being as painfree as possible, quite frankly.

fanjoforthemammaries7850 Mon 12-Nov-12 19:53:38

I would say you know better than the Dr whether there is a confidence or psychological issue, you know your son, so follow your instincts

EllenJaneisstillnotmyname Mon 12-Nov-12 19:54:16

Oh, hi Justa! grin

Hmm, tricky one. I wouldn't like to make DS walk through the pain, it sounds like torture! Perhaps wait until the reg has seen your video evidence? Your poor old DS. sad Just because he can't express or explain his pain doesn't make it any less painful.

justaboutchilledout Mon 12-Nov-12 19:54:33

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fanjoforthemammaries7850 Mon 12-Nov-12 20:01:28

Can you raise these concerns with the doctor

fanjoforthemammaries7850 Mon 12-Nov-12 20:02:09

And tell him about the running about

moosemama Mon 12-Nov-12 20:06:55

I have synovitis in my ankle and I really feel for your ds as it's really painful. It hurts to move the joint and also causes joint impingement, which means no matter how hard I try, the joint simply won't bend the way it should.

Mine improves with rest and is aggravated by too much exercise and because it's on my ankle there is a clear lump that gets bigger and smaller depending on the state of the joint at the time.

Similar to the advice you have received, I was told that I need to lose the crutches or I will become dependent and unable to walk without them. However, I was told absolutely not to put weight on my foot/leg at all until I have suitably rebuilt the muscles in my foot, ankle and calf, although the complicating factor for me is that I have developed Complex Regional Pain Syndrome in the limb, that resulted in 12 weeks immobility leading to muscle wastage before I was diagnosed.

I'm currently working on a very minimal physio programme which is regular low rep simple movements, such as toe up toe down, invert and evert ankle, toe raises etc, just 3 reps each time, which is doable through the pain. I have to do them as many times as I can manage in a day. Physio told me to think ok of them like you would pelvic floor exercises and just do them as often as I can, say doing the toe raises whilst I am waiting for the kettle to boil and the toe up/downs when I sit down to drink the coffee etc.

I also have to use two crutches for walking, to take the weight completely off the leg, but have to do a normal walking action, whilst non-weightbearing, although iirc, this is more to retrain my brain re the CRPS rather than being anything to do with the synovitis.

The exercises really hurt at first and still do actually, but have definitely helped and four weeks on I now have a lot less severe pain and far greater movement in the joint, despite having two weeks ill in bed in the middle doing very few exercises.

I'm no expert, but personally, I would have thought just taking away the wheelchair and expecting him to walk is too much too soon and he should be given a course of gradual strengthening exercises building up to walking, so that he builds up the necessary strength to support the joint properly and minimize any excessive movement that may be aggravating the it.

All that said, has anyone considered Legg Perthes disease at all? It should be one of the first things they check for with hip pain in children. They can't rule it out without xrays at the bare minimum and preferably MRI scans to assess the state of the joint - iirc it won't show up on ultrasound.

babiki Mon 12-Nov-12 20:10:49

Hi, I don't know the background but the advice seems very strange to me, I have been diagnosed with juvenile rheumatoid arthritis when I was 4 years old and the pain in joints is excrutiating...I was always told NOT to go against the pain, but mind you,that was years ago, maybe the advice differs now. Have they done blood test regarding the rheumatology ?

justaboutchilledout Mon 12-Nov-12 20:13:36

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justaboutchilledout Mon 12-Nov-12 20:14:58

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beautifulgirls Mon 12-Nov-12 20:15:03

It sounds to me like they need to have him seen by a physio asap to try and get some sensible activity advice rather than unrealistic expectations of him. How about some warm water hydrotherapy to get him active perhaps?

babiki Mon 12-Nov-12 20:19:17

yes, hydrotherapy sounds good and a good physio, specialised in the area...I used to go every summer to kind of spa (medical) for daily programme of physio and it worked very well; pity nothing like that in this country.
Systemic sounds about right if everything else was excluded..

justaboutchilledout Mon 12-Nov-12 20:21:08

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babiki Mon 12-Nov-12 20:23:51

Well if you ever fancy physio holiday look up Czech republic physio spa treatments for kids/arhritis, they are ace smile

Lougle Mon 12-Nov-12 20:24:11

Okey dokey, have read, will comment.

StarlightMcKenzie Mon 12-Nov-12 20:25:12

I know nothing about the conditions you mention, but when ds was in with a suspected fracture and he absolutely couldn't walk, they gave him a cast, 2 days later removed it and insisted that he start walking again without knowing what it was that actually made him unable to walk in the first place.

As it happens, at that point ds HAD lost confidence in his legs after 48 hours of not using them and they were right, once they had played the 'just take two steps towards the wheelchair - opps the wheelchair seems to have moved back another two steps' game (which I wasn't too impressed with) he did realise that walking was okay and was a bit hobbly but recovered.

I suppose what I am saying is that I think it is common practice to remove all crutches and tell the patient to 'just walk', so that is probably where they are starting from.

Lougle Mon 12-Nov-12 20:41:13

So, we have 4 issues here, right?

1. The pain itself
2. The cause of the pain
3. The psychological dimension
4. Dependency/independence

I'm going to mess the list up a bit.

3. The psychological dimension - We all work on the principle of cause and effect. The basic ABA stuff, as I understand it, is that we all act in ways that reward us, and if there is no reward, then we stop doing something in preference of something else that will give reward.

So, my question would be, for the doctor, "What reward could a boy of DS1's age get for missing out on all the lovely physical activities that a wheelchair precludes?" I mean, if he wants attention, he can tell you his tummy hurts, can't he? He can tell you he feels sick. He doesn't have to pretend he can't walk.

Secondly, the confidence issue. Well, would we tell an adult that, when they are crying out in pain, they are imagining it and that it doesn't really hurt? No. Would an adult be expected to walk through acute pain, or would they be given appropriate pain relief before mobilising?

Thirdly, even if there were a psychological issue involved, telling a boy to 'man up and get on with it' should not be seen as a suitable solution unless an adult would be told to 'man up and get on with it.'

4. Dependency/independence - If your DS can complete 4 tasks independently with the wheelchair, and only 1 task independently without, what is making him dependent, the wheelchair or the lack of?

I wonder if a Kaye walker would be a suitable compromise for these times. That means that he can mobilise as much as he is able, but the kaye walker would take his weight.

I do agree somewhat, that a wheelchair isn't ideal if only one limb is suffering. Has he tried crutches, or is that too much of a feat of co-ordination?

2. The cause of the pain - well firstly, it's well known that in children, knee pain is commonly referred hip pain. Children aren't good at pin-pointing pain, and the brain can think the pain is coming from the knee when it is in fact coming from the brain. Secondly, it's quite possible that if his hip has been hurting sub-acutely, in other words, the pain was there before but not enough to actually stop him from walking on it, then he may well be compensating in some way, which is putting strain on his knee.

Have they checked him over for hypermobility? I'm thinking here, of Cory's DD (and DS) who spent years being told they were exaggerating/fine/malingering before actually being diagnosed.

1. The pain itself - has he been given appropriate pain relief?? Does the pain vary with time of day, or have any other pattern? Does his knee or hip swell visibly or get hot or red? I'm not on to anything re. diagnosis, just trying to prompt your thinking to allow you to narrow down the symptoms. Have you kept a diary of activities and pain? Could it be that he gets the hip pain 4, 5, 6 days after x activity, for example?

Well done for being the battle-axe Mum DS1 needs. You are his voice, so shout loud smile

moosemama Mon 12-Nov-12 20:47:25

I can recommend hydrotherapy as well. I do much better with my exercises in a nice deep bath than I do on dry land, although obviously being a hip, a bath wouldn't work for your ds.

Have they ruled out hypermobility? Ds2 and I both have hypermobile hips, knees, ankles and feet and subluxes can be very painful and leave lots of residual pain without acutally showing anything on examination or xray at all. Ds had 18 different xrays taken of his hips by the paed. All of them came back normal, yet he is regularly sobbing in pain with his hips and it can be something as simple as turning over in bed that starts it off. There's nothing we can do about it except build up his muscles to support his joints. He is doing pilates and swimming at the moment and it's definitely helping.

Star is right that they often use the 'remove the support' approach to assessing how much fear is involved in the pain, fear = tense muscles = pain, so just getting them to do a bit and realise it's not so bad does work in some cases, where the problem is transient, but exacerbated by immobility. Actually CRPS is a case in point, as the pain is very real and excruciating, but caused by dysfunction of the sympathetic nervous system, rather than an actual trauma to the limb, So, you stop walking because your brain tells you you have an injury and need to protect the limb, but by stopping walking you are reinforcing the message to your brain that there is a problem and you kind of get stuck in a brain/nerve feedback loop. I am now using the limb, despite the pain not being all that much improved, because having had a full assessment, I now know there is no injury (other than the synovitis) and I need to retrain my brain to recognise that I can have normal function in my lower leg. I'm not sure how well that would work with a child, although I do know CRPS is quite common in children, so they must have to go through similar pain barriers in their treatment I guess.

I have no clue how relevant that is to your ds's situation, but it is indicative of the type of situation where the medics would legitimately recommend pushing through the pain.

moosemama Mon 12-Nov-12 20:55:54

Cross posted with Lougle re the possibility of hypermobility and she makes a good point re pain relief as well. I have high strength codeine based pain relief, although as an adult I choose not to use it unless I absolutely have to and one point my physio emphasised was that I should not be expected to cope or go through therapy without adequate pain relief.

You could essentially say that anyone who has CRPS is 'imagining' their pain, given that there is no physical identifiable cause, but that doesn't make it any less real, less painful or less in need of proper pain relief.

Good point about the motivation. I absolutely loathe my crutches and would give anything to ditch them and be able to just get on with simple things without being constantly encumbered. In fact I have been known to chuck them across the room in frustration/anger over the past couple of weeks. I would imagine that a young, previously active boy would be even more frustrated by immobility and reliance on equipment to get around and it would therefore be far more motivating to do something to get rid of the wheelchair and be able to do all the things he loves doing than it would be to opt for missing out on cricket etc.

justaboutchilledout Tue 13-Nov-12 00:53:56

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justaboutchilledout Tue 13-Nov-12 00:57:09

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Lougle Tue 13-Nov-12 06:50:31

Both legs simultaneously, every time? Hmm...that would point more to something systemic, surely?

justaboutchilledout Tue 13-Nov-12 06:51:59

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