Has your child ever been misdiagnosed with growing pains?

[nemoni]

I've just spent the last year looking after a 9 year old child in daily pain. This started last spring and over the course of the year got progressively worse, and by December he was taking pain relief 3-4 times a day and still sobbing with pain at least once a day and every night. As a parent and a healthcare professional my experience and intuition told me something was wrong, and yet on a number of occasions more than one GP told me it was growing pains. After a series of frustrating GP appointments I ends up taking my son to A&E and finally started to get somewhere - and he has very recently been diagnosed with a benign bone tumour.

Over this time I have spoken to a number of parents whose have experienced - so I wondered how many Mumsnetters have a similar story?

A place, i imagine its the same reason that a friend of mine was told something was a virus, then given antibiotics, or my dh was told he shouldnt have antibiotics again or he will become immune. Doctors often, not always, i do know good ones think people are stupid and cba to explain.

I do think 'growing pains' is a bit of a convenient short cut - there's no doubt that children can get aches and pains the vast majority of which disappear when given enough time.
I try and avoid the phrase or, if a parent uses it, reply "we don't really know what growing pains are'.
Most muscular pains will settle within 2-4 weeks, tendon/cartilage can take much longer, some benign bony conditions (Osgood Schlatter for instance) can take months and months and recur.
So, reviews are a necessary part of good clinical management and NOT missing something necessarily.

If in doubt take the wean back.
Also, if they are somehow not well or have other symptoms apart from the sore bit, take them back.
If you are unhappy about the safety netting plan, take them back, and talk some more.

#DoctorsAreHumansToo

If in doubt take the wean back

I found it an interesting difference when DS moved schools. At school A I had mentioned the GP said he had growing pains (because that was what the GP said) and DS' teacher replied 'there 's no such thing as growing pains'.

When he moved schools, I was chatting to his new teacher and mentioned 'growing pains but obviously some doctors don't think they exist' At which point, that teacher became offended because her DS had growing pains and was under consultant care for them .

Actually, the moral of the story seems to be 'I should avoid all mention of growing pains'.

'I should avoid all mention of growing pains'

Works for me

yes. my ds started limping and complaining about pain in his ankle. I went to gp with him after 2 weeks
bad mummy alert at first gp fobbed us off, but it got worse so we went to a&e.
they thought it was a broken leg, but in the end, after 9 months of delays and fobbing offs by gp and fracture clinic dc was diagnosed with osteomyelitis.

Yes, it was diagnosed as hypermobility after blood tests ruled out other things.

oh, the final consultant said that 'growing pains' is gp speak for 'go away'
pain (especially one sided) that hasn't got an explanation (obvious injury, muscle tiredness after an activity, cramps) and doesn't go away quickly should be investigated

thank you pacific for your sensible explanation. I wish our gp was like that!

Dd (nearly 6) has been complaining of pains in her one of her legs for over a year now. The pead we saw last may said growing pains. A year on they are much worse and accompanied by other symptoms (swelling, rash, bruises). Now waiting to see peads again as GP suspect autoimmune problem

runwayqueen so sorry to read this. Does she have any other symptoms? Our son was diagnosed wit systemic idiopathic juvenile arthritis and we were v lucky to get a place at great ormond st and they took us seriously. It took 6 week of him suffering. I cannot imagine it going on for a year!
He is now in remission thankfully.

Have they done any blood tests? Have they eliminated any other illnesses?

BEE she has issues with her cervical lymphs nodes being enlarged, sore throats (oral rash and non painful ulcers), so many other little things that are probably nothing but just don't sit right. She has glandular fever 18months ago and they admitted to hospital because they thought she had Kawasaki (sp?) but was just glandular fever. Since then they thought Kawasaki again on another bout of illness. The pead said she would get better infact she just seems to be getting worse. Had to stop all her physical extra curricular activities because she would be crying with pain. Our biggest problem is she always has a smile on her face, even when hooked to a drop in hospital she was smiling and being the active 4yr old she was then, and the GP and pead don't listen to us because of this. I've photo documented everything now to show them. It was only when we went private for a second opinion and had a couple of days where she couldn't bare weight because of the pain that they finally put a referral in. It may just be bad luck but to many hcp have mentioned autoimmune for it to not be worrying us

So many spelling and grammar errors, sorry

Just bumping this, hoping that BEE see's my reply or anybody infact that may have been through what dd is currently going through. Thanks

Hi runwayqueen sorry didn't see this!!

Have you had any blood tests? Have your inflammation markers ESR and CRP gone up? Where are her rashes? Do they improve in the day and just come out in the evening or something like that? Her stopping all activity is not a good sign. When is your next meeting? I would strongly ask them to do a blood test and test for these, plus others like Feritin levels, full blood count. Have them refer her to a rheumatologist or an immunologist.

This is not right.

We were fobbed off with 'growing pains' and also told that his crying/sleeping was a developmental thing. It was a paediatric oncologist who saw us in the end (she happened to be at the childrens assessment centre) who suggested that she writes a letter to gosh which triggered the whole move to great Ormond st. And they clearly took us seriously because the rang us with an appt 2 days later,

Good luck.

The autoimmune thing is a v general diagnosis. They need to do further tests to get it down to a specific one. We had put his symptoms in and what always came out was systemic juvenile idiopathic arthritis, or lupus. Those are both autoimmune.

Not my DC but me. I was told knee pain was growing pains, turned out I actually had ostheocondrytus (??spelling) which got diagnosed when I was 13 after having pains for 4 years.
It's a tough one though as my DD says her knees hurt sometimes and I think it is because she's growing so fast at the moment.
Trouble is kids sometimes can't describe their 'pain' very well and when they say it hurts they mean it aches a bit or just feels different. So I'm just being very aware of when and how often my DD says something.

Bee thank you for coming back. The only blood tests she has had were two relating to the glandular fever (Dec 14), her pead then said they would be repeated but he discharged her instead, that was last May. There has been no offer from any other Drs to do bloods, just talk of referring her on. We are due to see the rheumatologist at the start of July, it feels a long time away. They have been very much wait and see.

The rashes started at the start of January this year, initially just coming up at night when she was dealing with a virus, now they can appear at anytime of day and last a day or two, they then disappear and return within hrs. We are regularly sending her to school covered, we are lucky if she manages 2-3 days without an outburst. They are always accompanied by enlarged cervical lymph nodes, and I suspect some of the lymphs in her tummy as she feels very sick with it. They always come up on her face, sometimes she is fully covered other times not so. She has had various antihistamines but they still come up.

We are so saddened for her that she isn't dancing or swimming anymore, she really enjoys both but it's not worth the pain that can follow. We certainly know when she has had an active day at school, her teacher is very kind at listening to her when she is in pain though. Her left knee and ankle seem to be the main problem area. She really is a happy little girl, even when she is poorly or sore she smiles.

Every hcp we have seen has suggested autoimmune but nobody is willing to be specific as to which one and hasn't done more than wait and see, as I said previously it was only a private 2nd opinion combined with not being able to bare weight that has finally made them put the referral in. I've read a little bit on patient but I'm reluctant to google as I don't know if it's a reliable source.

This is her on a good day, still smiling.

Thanks bee for coming back to me

July is too far away. I would suggest you go to another GP or one that's sympathetic and say you want the tests done. Or demand to see her previous blood results. Inflammation markers will be there and you should be able to see what scores they are. To say autoimmune is a bit of a cop out. It's basically saying your body's immune system is acting up. Well yes. But we want to know why.

http://www.arthritis.org/about-arthritis/types/juvenile-arthritis/ - have a look here.

http://www.gosh.nhs.uk/health-professionals/clinical-specialties/rheumatology-information-health-professionals/refer-patient-rheumatology-department

Our consultant is one of those on that list. I'm not sure you should email them direct, but perhaps have a good chat with your paed and get her seen again. Her not being able to do her usual dancing and activities is not good. My son was the same. He went from being the speedy Gonzales of his nursery class to being the boy who had to 'retire' at about 3pm and sit in the corner and cry (because of the pain and exhaustion). He also went to bed at 6pm (unheard of). At one point his arm was so painful he wouldn't get out of his t-shirt for 3 days (I thought I had to cut it out of him).

His symptoms were: he was fine in the day, then come afternoon, he'll start feeling tired and stop doing his normal stuff. He'd have a temp and his arms/legs/somewhere will start to hurt and a rash emerges. He ends up going to bed in tears and Whilst in bed, he'd break out into some sort of sweat. But big sweat, almost as if he had a shower in there.

Next day ok again. And the cycle begins. The rash was unpredictable. On arms, legs, torso. Occasional face. Doctors told us to give him ibuprofen and paracetamol. That was the extent of how much they thought we were paranoid/silly parents.

This went on for 6 weeks. By the time he was seen by GOSH and all the internal tests were done (Scans, bone marrow aspiration and lots of blood tests), his liver was so inflamed it was the size of a grown man. And he'd lost 20% of his weight. I was not impressed but at the same time, v thankful that GOSH reacted.

Happy to talk more, here or PM.

Runway definitely get her back to the GP or pead for a blood test, that does sound a bit like Still's Disease to me with the rash flaring up and going away etc at the times of day.

They will need to check her ferritin level (I think "normal" is about 50-250, hopefully Pacific can confirm that) but with Still's it can be from the hundreds to the tens of thousands. CRP level may be raised too. It also causes joint pain, fevers, swollen glands, muscle aches.

If it is, it can be managed so she's not in pain.

Hope she's OK.

http://www.stillsdisease.org/index.php/stills-info/

Still's disease is what my son had. Also known as systemic juvenile idiopathic arthritis.

I think you need to specifically request the ferritin count to be done as I don't think it's one they'll check routinely.

Bee & dodo thank you both, the links are really helpful, a bit eye opening actually. I'm by no way saying this is what she has, but I can certainly see some alarming similarities sadly, the only difference is her temps don't get much higher than 38.5(ish), she certainly hasn't spiked 40+ more than 3 times since Jan. I'm going to get her back to the GP and see if they will start her blood work ready for seeing the pead rheumatologist. I will definitely ask if they will screen for what you have both suggested.

I really don't want her to have to wait till July either, I'm not sure how I can get them to speed it up other than becoming the biggest pain in the arse and taking her in every time she is in pain/rashy. I would just like to know what it is so we can help her manage it, our life seems to evolve around whether she is having a good week or bad one, we were meant to be going to eurodisney in August but have postponed it till Feb to give more time to get what ever it is under control.

Thank you again, what your both sharing is very helpful

runwayqueen - a temperature is a temperature so I don't think you need to think that by having a lower temperature, you shouldn't 'make a fuss'. Like I said, he was like this every day for 6 weeks. I think we were almost at the hospital/GP surgery every day or every other day. Practically every weekend we were in hospital or A&E . I don't think you need to justify it when you can clearly see that she's suffering.

For us, the most difficult thing was getting the dr to take us seriously as we got to see the GP in the daytime and he usually goes downhill in the afternoon/evening. One time we saw the dr at 6pm and he was crying with pain. The doctor said that he was 'typical 4 year old who was tired' (that's why he's crying).

I would continue with the photos of her rash, and perhaps take a 30sec video of her the next time it happens. They'll get it once they see it.

If you are doing the bloods, the r-factor will be negative which may give you false hope that it's not arthritis. Check the ANA as well. Some of the autoimmune illnesses will have positives for some and negatives for others. Those websites have a lot of info.

and some do not show up in bloods at all.