Share pain management tips for kids here

[christianne]

Hi Sarah
Welcome to the boards.I don't fall into that category any more because Ewan needs regular constant meds, but I know that in general ibuprofen is found to help HMS pain more than Paracetamol, also they can both be given together , dealing the pain/aches a double whammy. If you do give ibuprofen then give it with food(even just a glass of milk and a biscuit will do) to protect Elliot's tummy. Sleeping wise, I found Ewan only started sleeping through when we got a memory foam mattress so this is well worth a try if you haven't already got one. Re questions-ask away, that's what we are here for!
Christianne

[srsmumoftwo]

Hi Christianne

many thanks for your reply- the memory foam mattress is a good suggestion might give that a try, Elliott takes an age to settle at night cos he spends so long fidgeting into a comfy position (normally ends up with knees bent up in air- consultant says not to worry as it probably supports his hips in that position!!) His proprioception is quite poor and the memory foam could well give him more feedback therefore allowing him to relax more quickly. You see my brain is starting to order things now and make sense of some of his problems. Must dash off to school run.

Many thanks Sarah

[christianne]

hi Sarah
Other tips for proprioception are wearing 'base layer' clothing under normal clothes the kind you ge tfor wearing under rugby kit, although you may not get it small enough for Elliott. It needs to be very tight,and it hugs their joints and gives the brain feedback on where their limbs etc are. Re sleeping position, a small cushion between the knees can really help support hips, i wouldn't sleep without one now. It helps Ewan for his shoulders and neck to be a bit raised too, with pillows supporting them. Glad some of these things are helping
Christianne

[madmum]

Any help out there for a 10 year old who is on paracetamol and cannot take ibuprofen. He is sitting feelin a lot of pain as his kneecap just slipped again. Hates massage when in pain. Dooes not like ice,I do use a cold gel. Bandage not helpful. Hospital will not give a support other than tubigrip which does not work for him. We were going out to get him tropical fish so now not going. He slips his kneecap regularly,often worse at night. How do I help?

[janey]

I can really sympathise with this as my daughter has had similar problems when younger (she's 17 now). She has found a plug in heat pad useful, tried TENS and does use it but finds it a bit fiddly specially at night. I think also, that being in pain at night is particularly tough as you are tired and at your lowest ebb and just want to sleep. She listens to her iPod, downloads audiobooks and podcasts. We also invested in a memory foam mattress topper which is very, very comfortable and has lots of those beany cushions which are good for shoulders and knees and can be moved around accordingly.
Hope that helps a little bit and that your little one soon finds comfort.

[madmum]

Thanks janey. Will try the cushion idea,he has the mattress topper. Tried the hot water bottle the other night but it leaked. I an going to ask about the tens when we see the rheumatologist. I am going to suggest to her as i did to the physio about a knee support for daytime,he gets a night splint on tuesday. The physio said it will prevent muscles working but my arguement is him not moving will be worse. He has little confidence in himself and his leg giving way does not help. How did you get on with school as regarding help,attendance etc?

[janey]

Re: hot water bottles, don't know if this applies to everyone but Rosie finds them too heavy for her joints. The heat pad she uses I got from Boots and it turns itself off after 2 hours so safe for night time use (you can switch it back on manually). It has 5 heat settings and I've 'borrowed' it on occasion and I can vouch for it too! Rosie doesn't use night splints as they have never been suggested but her main problem has been her shoulders which she does splint at night.
You will find the right thing but it does tend to be trial and error. Regarding TENS, I just bought the machine and we fiddled around with it ourselves but I am very familiar with them as am a midwife and have seen how affective they are for women in labour.

[christianne]

Hi Madmum
I echo janey's sympathy, my son is a similar age to yours(he is 11) and has problems with many joints slipping, giving way and completely dislocating. When he has actually injured a knee in the past we bought a sports knee support from Boots, which had a hole in the middle for the kneecap, and hard splint type bits down the sides, he wore this in the day to try to manage to walk about, but we took it off at night. This was just for a few days while his knee recovered. I wonder if the physio is right about a permanent spport weakening the muscles though, this can happen and it might ruin all the hard work done by the physio. Ewan has daily physio, it is done in school by the teaching assistants. We have had good support from the school and education authority, especially since getting a statement of Special Educational Needs(SEN) this is for his physical needs, as he has no learning difficulties.(sometimes people think that kids have to have learning difficulties to get a statement, but special needs can be anything that makes it difficult for a child to access the national curriculum).I have written a lot about school and help under various threads to do with statements, school etc, have a browse, or pm me if you have any questions I may be able to help with. The school are understanding about attendance issues and he has various aids to help him be more comfortable in class such as a special chair etc.
Painkiller wise have you tried codeine? If he is unable to take ibuprofen it may help. Ewan takes diclofenac (voltarol), paracetamol and top ups of codeine if he has particularly bad pain or injuries. Wheatbags heated in the microwave are useful and hot baths to relax the joints. In the night he sometimes listens to a relaxation tape which he finds soothing, and I also do reiki on him.
Hope some of this helps
Christianne.

[amber_m]

i found that as my son is nearly 2 lots of cuddles and singing ,rubbing helps too,or a warm bath,if all else fails then chocolate or ice cream normally takes his mind off it

[madmum]

My son continues to have night problems. He is on piroxicam once daily,we shifted the dose to night time as was suggested by his specialist but he still had bad nights and was flat all day so i moved it back to morning. He was given a short course of melatonin which was great but when it stopped we went back to normal. He hates wheat bags! He is a real fidget so pillows under his knee do not move with him so are of limited use. He has now been told he has pain amplification so everything is sensative and he definately does not like touching on his knee. We recently got a night splint but it is not the right angle and has no padding by the bend so hurts. Went today to orthotics and he is ordering pads to put in it but still did not get what i was saying about not the right amount of bend. Until you see when his knee is bad you do not realise the bend angle he has to adopt to control the pain. He also bruises easily and that seems to make him worse.

[christianne]

Hi Madmum,
My huge sympathies to you, I understand how horrible it is to have a child in pain. To update what Ewan takes in case it is if any benefit to you or to others, Ewan now has diclofenac(voltarol) and partacetamol throughout day and night but also has a pain patch of buprenorphine, a sticky plaster patch which he wears on his chest or arm, it releases a morphine type drug into his bloodstream continually and is changed once a week. This has made a really big difference, the improvement in his walking is noticeable,and has had no significant side effects after the initial two or three weeks when he itched a little and had a slight rash at the site, much fewer side effects and better pain control than taking tramadol or codeine, and it doesn't make him constipated nor sleepy. GPs are reluctant(normally but not always) to prescribe this type of meds , it was prescribed by the Pain control clinic he goes to, and I now get it on repeat form the GP. Hope this helps someone.
Christianne.

[madmum]

Thanks for the reply. Ewan is lucky to have such a good mum to battle for him. The g.p has said there is nothing else licensed for children. We have an appointment with his specialist in october so i will ask again for her advice. I have wondered if a pain clinic would be an idea as she said he has pain amplification. I was briefly given dihydrocodeine for him but g.p does not want him to have it. He also has to see a community paediatrician although i am not sure why apart from we see a specialist in england and we are in wales. Alexander was bad again last night with maltracking his kneecap and it happened again tonight but not as bad.

[Fizz]

Help - need to know about pain management therapy

My son has just started secondary school and although he started well in the first few days, by the second week, his pain levels shot up and he hasn't been in since. The school know he has HMS as we visited before he started, with the Flexible Learning Service (FLESS), who support children who cannot be in school full time. Rather reluctantly, the "inclusion officer" agreed a reduced time-table of mornings only as my son had never made it in full-time at primary school since June 2009. As he could not manage the mornings at all over the last 2 weeks, he's now supposed to go in for just the afternoons (effectively one and a quarter hours) and use e-learning (provided by FLESS) in the mornings. This is for a trial 2 week period and then he's supposed to extend his hours. My son is not happy as he'd prefer to do the mornings as it's longer and he does want to be in school, but there's no point in him saying he'll go for this option if he can't get actually do it.
Last week his pain was back to how it used to be before he went to GOSH for the 2 week rehab (this was at the end of February). He's back sleeping downstairs, in constant back pain and some leg and ankle pain. He feels sick and doesn't eat until 2pm or later (have posted about this elsewhere). Reluctantly, he's just started on fluoxetine yesterday but at a very low dose as local paediatrician thought it might help.

I don't know what to do about the pain levels as nothing so far has helped. He's already tried high doses of paracetamol and ibuprofen (doses higher than what's said on packets but worked out by paediatrician according to son's weight). We've tried hot and cold pads but he did not like the sensation of either. He's not doing physiotherapy exercises as our local physio feels that the constant battle that developed between me and my son had become counter-productive (although this sounds counter to GOSH advice she's been in contact with Sue M and this has been agreed). I'd asked about re-starting physiotherapy when son started new school but local physio thought we should hold off for a few weeks. In the school holidays, son saw a psychiatrist at CAMHS who said son would need pain management but there was a 3 month+ wait. Since then we've been allocated a CAMHS case worker who isn't our "official" pain management person but says she can offer this BUT doesn't think it will work for my son as he's 11 and she says it works better on older children and those who are well motivated to do it (which he currently isn't). I don't know where to go from here. Have tried osteopathy (one year ago) and chiropractic treatment (over last 8-9 weeks) and both of these seem to help his back pain and stiffness very slightly for around 2-3 weeks and then everything gets much worse and he's back to constant pain, possibly a little worse than before. Son isn't severe enough case for continued GOSH involvement. Local physio tested his muscle strength recently and it's pretty good, possibly helped by his efforts to get himself more mobile during the summer hols in preparation for secondary school. What I don't want is for everything to go backwards again. If he doesn't get into secondary school enough to get to know the building and find his way around and make some new friends, I thinks he'll get to the stage where he feels even more different from everyone else and just won't want to go in at all.

Has anyone had pain management for children apart from at GOSH? I wasn't aware he'd had any during rehab as he just seemed to do physiotherapy exercises. Another mum told me that the session with the psychologist was the pain management support but this seemed to be more about how he felt rather than what to do about it.

[Fizz]

Hello,
I'm posting with more or less the same problem just over a year after my last post on this topic. My son discontinued his GOSH physio with the agreement of local physio (who has had GOSH training). He tried to just take more exercise and before discharging him last year, local physio said he was maintaining muscle strength so it seemed this would be ok.
Son was still having problems with pain flares and reduced school attendance so he decided over the summer to set himself a programme of walking increased distances with a hope of getting fit for school. This worked at first but then in early October he had a severe pain flare up which has got worse and he's not been in school since early November. It takes him so long to get up and moving and he's now mostly crying out with pain just staggering around the house.

As he's older now and more motivated, he agreed that he should restart the GOSH exercises. He wanted to try to replicate some of the benefits of the inpatient rehab course so he set himself the goal of 30 reps of each exercise 2 x daily. He's been doing this for just over 3 weeks and all that's happened is the pain is getting worse. We understand that things get worse before they get better but wondered how long this would take. Can anyone else who's either done the exercises without first doing the rehab, or, like my son, has restarted after a break, say how long it took to start to feel better? And how did they cope in the meantime? School is putting us under a lot of pressure to get him in but he's just crying a lot of the time. Pregabalin was prescribed but it hasn't eased the pain so far but he has started getting really dizzy and losing his balance and having strange pain spasms that make him twitch.

We are trying to get him back to see our local children's therapy physio (the GOSH trained one) but there's a long waiting list so it could be weeks or months. She's given us some phone advice: that nothing will get better until he uses the weights, so he's started on 2lb on each leg and taken the reps right down to 5 each. She said do once a day but we think at such a low repetition he'll need twice a day to see any benefit. Don't think we can get back to GOSH as he's not really that hypermobile so we think they feel it should be sorted locally. This would be OK but it's hard to get local support (have posted elsewhere about this) so any tips on coping and advice on how long before some pain relief kicks in would be gratefully received.

[christianne]

Hi Fizz
I am sorry you are still having so many problems and your poor son is in pain. It sounds as if he is indeed bad enough to be seen again at GOSH. They do sometimes have to do a second stint of rehab, and this often happens when the child gets near adolescence and starts growing fast and hormones circulating. Mine had a second rehab 3 years after the 1st. They do like local physio to take over if possible but that is no good if, as you say, there is no provision locally for this.
Has your son tried using a wheelchair around the school? Mine went into a chair (an electric one) sometime during year 8 (he is in year 9 now) and it was the best thing that we have done. We worried that it would make him weaker, but with keeping the physio exercises up and not using one at home etc, that hasn't happened luckily - his muscle strength is great. It has definitely meant him being in school more. Before he ended up either not going in, or going in and getting sent home, or sitting in the library with his one to one because he couldn't walk the distance to the classes. Secondary schools are so big, and he was using up his anti-pain reserves on simply getting to and from the lessons thus leaving him exhausted and in pain during them. He is now in for 4 out of 5 lessons a day(he come home lunch time but the way the timetable works means that he only misses an hour long lesson and lunch hour. There are still days he can't make it but there is a huge improvement in the amount of time in school and the quality of that time. I am sorry if this isn't strictly pain management as in drugs etc, but it is in fact one way of managing Ewan's pain that we have found.
I am on gabapentin (same sort of thing as pregabalin) and I think the pain relief started after a few weeks. It only helps the sharp nerve pain that was being caused by arthritis in my sacroiliac joints and spondylitis in my neck though, not the other usual pain, so it depends what sort of pain your son has-did he have nerve pain?
Hugs to you
Christianne