I am soo tired and down from watching my child living with constant pain - how do you manage?

[Milliways]

And I am soo angry that no-one seems to be able to get us a quicker appt

DS has had a bad back since October. We started with a trip to A&E whi sent us packing - said he had pulled a muscle. On & Off days of pain followed, Diclofenac eventually prescribed and we had some respite over the CHristmas Holidays

SInce early Jan he has NOT coped with school, and is now taking PAracetamol, Diclofenac & Codeine! He just asks "When can I take another tablet?!. If he doesn't get to sleep quickly he seizes up and needs to get up.

He cannot sit at all for longer than 5 minutes - so when he is at school he walks around the back of the classroom.

An Osteopath has diagnosed Osteochondritis - we are paying privately as fed up with waiting. My GP asked this week "Haven't you had any Physio yet?"

It is soo awful watching him suffer, just massaging & applying Ice & heat etc. I am feeling decidedly depressed

How do others cope?

Oh my god, that is terreble!! You really need to get on to your G.P, Every day if needs be. Somthing needs to be done for your deer little boy and quick. It must be awfull for you too. My heart goes out to you both, you shouldn't have to pay for his treatment. He is entitled to it on the NHS, somone needs a kick up the arse! I wish you all the best, and persevere!! Good luck. xx

That's very serious medication he is taking. Can GP try getting him moved to top of queue? Or can you contact Physio directly? It is totally unacceptable. I have a bad back so totally sympathise with him, but he is a child!!

why hasn't the doc referred him to a specialist? how old is he? poor thing. definitely press for more investigations, scans etc.

this is awful.......how sad for you and your little boy

how old is he???

and I am impressed that you haven't gne and smacked your doctor in the mouth yet....I would be seriously tempted by now with the amount of pain meds he is on!!!

He is 12 - I have had various threads on this subject over past months

He was referred - and Appt is in March (came through a few weeks ago!). I have been back to GP loads & even taken him to A&E. They are convinced it is muscular and will just go away - since October

My GP has tried to bring it forward (I had a breakdown in his office this week) but he gets no-where too.

I HAD to pay - I couldn't do nothing any more. They can't beleive how the NHS has let him down and are also writing to GP for me.

Pity you can't claim the cost of private treatment back from the NHS. Children should be bumped up the queue. My DD takes similar meds each month for period pain but only 2-3 days at a time and so I know how much they can affect children. You seem to have tried everything, wish I could suggest more. Hopefully someone can come up with a cunning, devious plan that works.

12...poor kid.

now, assuming this has already been thought of, but he isn't carrying a backpack everyday for school os he, as that can cause untold pain to a growing childs back!

only a thought, but one possible way for a 12yr old to suffer pain....altho the amount you describe and the amount of pain meds he is on is rather extreme for a backpack.

I did discover, when this all started, how awfully heavy his bag was.

He is now forbidden from taking ANY text books to school (teachers aware) and he carries his lunch separately.

He now takes a walking pole around with him as he cannot get up or down without leaning on it (12 yr old school friends not very good at "lending an arm"!)

Sorry to hear that your DS is having such a hard time with his backache. I am a physio who specialises in children and see a lot of youngsters with back pain - sadly. Hope you manage to see someone who does have experience with children specifically, because causes and management are very different when you're dealing with children.Hopefully it is just 'simple' backache i.e. no serious problem but to do with the mechanics of his back, which can be managed with physio; again would ask for someone experienced with children, as like all therapies, how successful it is is often very dependant on the therapist if that makes sense. I often see children who have been poorly managed by physios/ osteopaths etc often because they try to treat them as they would an adult with back pain (e.g. I would never use strong manipulations or any electrotherapy such as ultrasound on a growing child)

as he has had the problem a while now I think an xray is important to rule out underlying problems, but most importantly he needs a good assessment from a Paediatric Ortho Consultant and/or specialist physio - and that means a careful history and physical examination - that in itself is often the beginning of the treatment as you will know what you are dealing with and lose all this fear and anxiety that you and your DS must be feeling

Hope you get somewhere soon - be happy to help with any more specific questions - as long as they are not too hard!!!!

Sorry this is still going on Milliways. Can you afford to get a private appointment with a pead ortho?

Thanks Pushki.

We were recommended an Osteo - but he referred me to a colleague who does deal with children. He is very gentle and applies minimal movements/pressure to his affected vertebrae to try & keep them mobile. They mainly concentrate on trying to relieve the string knots all around his shoulders and relieve the tension in his "Steel girder" lumbar region,

He asked for a second opinion from the senior partner who agrees it's OSteochondritis, with a strain in the vertebrae directly below the affected area. (He is a swimmer so fly etc have aggravated it).

We fought for an Xray but they only took a low grade picture which showed a minimal scoliosis.

Our appt in March is with the Orthopaedic dept at the hospital. I can't afford a private consultation. The Osteo only charge me a childs rate of £20 per session.

They say he has under-developed muscles which need building up for stability (when he CAN move). He is also hyper extensive? Extra flexi, which makes him more susceptible. Also needs to work on posture which has sufferred lately and so aggravates the back.

Hi Milliways

Hope the osteo treatment may make him feel a bit better - not going to get into a debate about osteo vs physio - you can get excellent physios and excellent osteos as well as unfortunately rubbish ones of both! Difficult to know that though at the time - the importnat thing is whether your son starts to feel better!

Children who are hypermobile and swimmers like your son are a bit vulnerable to back pain. How has the osteo come up with the diagnosis of osteochondritis - from Xray? Would want this confirmed or not when you go to Orthopaedics and further xrays if they felt necessary. The stability work sound good - if he's given exercises the hardest thing is making sure he keeps up with them!!

I would happily go to a Physio - and hopefully will get an NHS referral?? (One day!).

The OSteos say when he lies on his front there is a knuckle shaped rise in his spine that should not be there. He is extremely skinny and most of his spine is visible when he sits. The other Osteo agreed from viewing him standing and in various poses - seeing where things pull when he tries to move etc. I'm no expert, and appreciate they may not be the best for him, but they are trying and definately help with loosening him up for a bit.

If someone recommended me a child friendly Physio I would give them a go - just can't believe if I wasn't doing this he would have nothing!

is there any support belt - type thing that he could use? what about his matress (though with this length of time i'm sure you have tried all kinds of everything so it seems a bit trite to be making suggestions now, sorry) and have you had a paediatric consultant referral? nag, nag, nag. I seems to be all they respond to
wishing you lots of luck.

Good old NHS and their waiting lists - still think you have waited too long for his physio. I work in an NHS hospital and I am lucky that I don't have long waits for the children referred to us - no child referred should go on a 'chronic' waiting list even if he has had the pain a while - might be worth checking this with the physio department he's been referred to? (can't recall has he actually been referred by his GP yet???) You're probably fed up of having to hassle but wtill might be worth having a go if you feel up to it!! Ask to speak to a senior physio or manager and calmly explain how affected he is, missing school etc - if I took a call like that I would bump him up the list!!

From what you explain - I am a little surprised at how they have come to the diagnosis of osteochondritis - but as you say you are trying to do something at least to help him - so the treatment is definitely worth carrying on if it is helping.

Gigglewitch - he has slep on a mat o the floor for the last month

Pushki - in this area we are referred to a Musculo-skeletal referral centre for triage. From his notes alone they sent us to the Paed Ortho Back clinic - for which we are still waiting. DOn't know how you get to a Physio without a referral, thought the Ortho clinic would recommend Physio (I have had Physio following Ortho appts before).

The Osteo says he can feel the area is inflamed? and distorted maybe? Making a raised area.

Do you have any suggestions for something that could last this long?

Thats terrible!!! I took my dd2 to the gps la couple of weeks ago because she had dislocated her knee at christmas time and she was still getting twinges of pain.(but still walking over a mile to school every day)..she was referred for an xray and the appt was the next day!!! Then a letter came through for physio three days laer and it was for the same week...her second appt with physio is next week.

Complain as much as you can, this waiting is shocking!!

Your GP should be able to refer you to a physio directly even if you are waiting for the clinic appointment - but aware that it can be different in other areas. At least the Paed Ortho Back clinic sounds like the right place to go - when you eventually get there!!

Don't feel comfortable to suggest any potential diagnoses - don't worry, that doesn't mean to say that from anything you've written about his back that I think it's anything terrible - far from it, although obviously he is in a lot of pain,he doesn't seem to have any other symptoms suggesting that . Realise that may sound frustrating but that's why physios always hate telling people what they do as they usually then get asked instantly to diagnose something on the spot - "so what's wrong with my neck then?"

All I can recommend is try anything to get that clinic referral asap - your GP should be able to speed it up - if you've got the strength, keep hassling anyone you can - if you can find out the name of the Consultant who runs the clinic and then his/her secretary's number, that can be a good way in. Really stressing the fact that his back pain keeps him off school, limiting his abilities and now a long time should make him a priority.

Consultant's secretary is away until Monday - when we will be back on the phone!

Good luck -the hassling hopefully will pay off!

I think being the bossy individual that i am, I would be seriously considering turning up at the hospital and insisting upon being seen
the waiting time you have been put through is barbaric.