Chronic osteomyelitis

[GoneIsAnotherSummersDay]

(I've name-changed as anyone who knows me will immediately recognise this story.)

DD (7) had acute osteomyelitis in her foot stemming from Strep A at the end of last year. It wasn't treated quickly enough or aggressively enough. It is still rumbling on so has earned itself the ominous title of chronic osteomyelitis.

We are four months into this illness turning our lives upside down and it's definitely not done with us yet.

There is very little information available on this online for patients that doesn't come from an angle of the patient being diabetic (which DD isn't). The information that is available doesn't make particularly positive reading.

I wonder if anyone here has experience of this?

I have a sense of doom that this is going to be a big presence in DD's life and at best stop her doing some of the things she loves (she is/was very active, outdoorsy, enjoys sport); at worst is it going to make her ill a lot, especially with all the antibiotics; then even worse, it could threaten the whole of her lower leg. I've only seen amputation mentioned in literature about diabetic patients, so maybe this isn't relevant to us.

I’m really sorry to read your daughter is struggling. My son had acute osteomyelitis in his tibia 4 years ago so I can understand the pain she is in. Have they indicated to you why they can’t get on top of it - I presume they have tried a wide range of antibiotics and have grown cultures to try and target it. We found Linizolid finally finished it off. Are you under a big teaching hospital so are able to draw advice from experts? I do read that the hospital in Oxford is a real specialist in this area so they may be able to help. There are a couple of Facebook groups out there too which may give some advice (but beware there are a few doom mongerers on there too)

Thanks for replying.

She's under the orthopedics team at Oxford. They are currently deciding whether to do surgery on the infected bit of bone. Because it's the growth plate there are associated risks so they will avoid surgery if they can.

She's already had two months of antibiotics.

Unfortunately the acute osteomyelitis presented when we were away and we lost time to a misdiagnosis at a different hospital.

DS2 had acute osteomyelitis in his ankle a few years ago. They tried a number of IV antibiotics which had no effect so had to operate. As you say, they were worried about it affecting the growth plate but leaving it was not an option. As it was, the operation went well and the growth plate seems unaffected, he's 13 now. I know it's not the same as your DD, but I wanted to reassure you that the operation can go fine!

Thank you.

Because it has gone on for so long and she's already had one surgery on it to clean it and it's come back they're saying it is now chronic. My feeling is I'd rather they get on with the surgery as it's an uncomfortable feeling knowing that the infection is there and just waiting but obviously I have to put my faith in her consultant to be taking the best course of action.

Chronic osteomyelitis seems to have a different treatment plan to acute. I am struggling to come to terms with this being a long-term thing especially when it may well have been avoided had there not been the misdiagnosis when it first presented and it may not have happened at all had DD’s strep A infection been picked up on in the first place.

Even though they managed to stop the osteomyelitis in my sons tibia - the damage it caused has effected his growth plate. He stayed under orthopaedics for monitoring as they knew it was likely and 4 years on his leg length discrepency is such that they are going to need to operate. I understand your feeling about wanting them to try again to get rid of the infection. Feels like a risk worth taking than have it hanging over you - but like you say, they are the experts. We have found the ‘watch & wait’ approach difficult as the range of options and balancing act of what course of action to take is really difficult. It feels like we are working off probabilities and risk which is hard to do when it’s decisions about your own child. I imagine maybe it’s easier for the doctors to make the right call as they aren’t emotionally attached to it like we are.

I had chronic osteomyelitis in my tibia as a child - am in my 50s now. It was a big issue from age 7 to around 10 and then no more serious flare ups after 14. I had 2 rounds of surgery, and several long hospital stays aside from the surgery. It didn’t undermine my overall health at all but I was left with a shin that felt fragile and that restricted me from some activities. I do still get some pain around the site from time to time.

Mine was also caused by infection - we were on holiday and cut my foot on the beach. It was incorrectly diagnosed as polio and then as osteomyelitis when we got back to England - my poor parents!

@beckypv Sorry to hear that your son will need surgery. Has the difference in leg growth impacted his daily life up to this point? Do you have to wait until a certain age for the surgery or will it be as soon as they can schedule it?

@Alonglongway Thanks for replying. Sorry that you had to go through all that in your childhood. I'm glad to hear that your overall health hasn't been affected. Were you on antibiotics a lot of the time in those first few years?

one of mine has/had chronic osteomyelitis.
late diagnosis & delay in treatment (gp kept fobbing us off wit growing pain) meant it turned chronic.

pain management and physio means that dc was able to return to an active life soon after diagnosis.
luckily it didn't affect growth.

(I say has/had because dc still has some pain ocassionally but is mostly fine 10 years on)

Came on to say that my DS had this. Labelled as CRMO - chronic recurrent multifocal osteomyelitis. As with others, appeared out of nowhere after an infection. Misdiagnosed as soft tissue damage at first and after being fobbed off by A and E and the GP, despite acute pain, finally needed an ambulance transfer from the walk in centre that tried to send us home as soon as we arrived, telling us to follow the advice we’d received from A and E earlier in the week. Temp over 40 and vomiting, at which point they panicked and suspected septic arthritis. I did make a point of telling the triage nurse that it was a good job we’d waited and insisted on being seen. There seems to be a huge denial of children’s pain and my son was very definitely in excruciating pain.

When we finally got the correct Drs, there were MRIs and IV antibiotics and a hospital stay. IVs continued at home for a few days with a community nurse team visiting and then oral antibiotics for weeks after. The community team was hit and miss and we kept getting calls saying they couldn’t come out so could we drop everything and pop back to the hospital to get his IV ABs
into him on schedule. God knows what single parent families or anyone without a car or flexible job would do. Not particularly impressed with the NHS.

Currently under orthopedic team and rheumatology and being monitored. Less of a problem now than it was but have been warned to watch for reoccurrences. Trust your gut and go private if you can.

once we finally were referred to the 'bone clinic' in oxford we were facing a year's wait for an appointment.
we went private at that point.

when you say opearation, have they identified the infection?
in our case tb was tested for, but as it's slow growing it takes 6 or so weeks for results.

The community team was hit and miss and we kept getting calls saying they couldn’t come out so could we drop everything and pop back to the hospital to get his IV ABs into him on schedule. God knows what single parent families or anyone without a car or flexible job would do. Not particularly impressed with the NHS.

tbh I think going private saved us money by being able to schedule around work.

@bluecomputerscreen - quite! It’s difficult as I know the NHS are absolutely stretched. BUT to get a call when you’re at home with other children, expecting the community nurse any minute, to say come in now with the unwell one, so they can hit the 3 hour window for administering the drugs as there is no community nurse available, was tricky to navigate on top of everything else. It’s 30 mins to the hospital with no traffic at night. That’s driving. Buses - would take around two hours and at least one change, more likely two. With a child who can only use one leg? And no crutches or wheelchair as yet? No one asked if we had the capacity to do this!

@bluecomputerscreen As far as I know the biopsy for her surgery in January didn't grow anything but she'd had ten days IV and four weeks oral AB by that point and I gather that can meddle with testing. The initial infection was Strep A.

The team at Oxford are looking after us brilliantly. I have no complaints about the care of the staff really. Our care was transferred from the other hospital and it was picked up fairly quickly. She had been seriously unwell, including have Sepsis when it first presented which probably helped us to be seen sooner.

My 10 yesr old son is currently recovering from acute osteomyelitis. He had a cold with high temperature and sickness. That went and a few says later he said his heel on his foot was hurting. I asked him have you banged it on anything he said no. The next day he was in agony and high temp was back with sickness so took him straight to a and e. They thought it was celulitis as xray showed up inflammation around the heel bone so they put him on flucloxacillin iv and kept him in. Su day no improvement. Monday consultant came round and orders an mri scan. This conformed osteomyelitis in the heel bone. Switched antibiotics for ceftriaxone iv and was on this for 5 days. Infection markers went up then back down so we were sent home with long line and cannula in and had to come back to hospital every night for 10 days. After this his heel was still hot and swollen but infection markers had come down. We then did 4 weeks oral antibiotics of clindamycin. He finished them two weeks ago. Hes a lot better just got some slight swelling round his heel still and it's aching now and again. Hes desperate to go back to football as he plays for a team but got to a wait a few more weeks. I've asked about it reoccurring and consultant said it can come back but it's rare. I keep watching out for the signs. I too struggled to find much on the Internet that wasn't related to diabetes and amputation. Sending massive hugs to everyone suffering with this as it's really nasty and so painful x

@PeachGoose Sorry to hear about your DS. DD's was in her heel too. I say 'was' because she finally, four months after it started, seems to be convincingly on the mend. She's just returned to gymnastics/doing PE etc. She has an MRI coming up to check on it.

Definitely keep an eye out and go straight back if your DS' heel pain gets any worse. Despite DD's recent history of osteomyelitis I had to be quite persistent to get an MRI when hers flared again a month after the first presentation of it.

The bone infection and paeds units at Oxford are excellent - you are lucky to get treated there.
In a child they will be aiming for eradication of infection rather than suppression. If antibiotics are targeted and lengthy this may work, but sometimes surgery to remove dead and infected bone is needed. Depending on which bone affected in the foot the impact on growth (either by infection or surgery) may be minor.
Don't lose hope!

it's such a painful condition.
I wish your dc a swift recovery!

in our case it seemed to have been an autoimmune reaction after a cold.

biopsy was taken to rule out bacterial infection including tb. we were asked if dc had raw milk products in the last year or if they had close contact with roadkill or cows.

We're in hull and have been asked by the research team if they could follow ds treatment and see how he recovers. They are hoping more research will help others in the future who are presenting with osteomyelitis symptoms but not been treated quick enough. Its a really awful condition x

Have your children returned to sports after recovering? My son plays football for a team and consultant said no contact sports for two months while it's still healing. She then said let's say when it stops hurting. Hes not had any pain or aches in over a week now and is desperate to go back to football. I'm just worried if he goes back too early he will cause more damage to his heel x

we were informed that there is a small increased risk of fractures due to weakening of the bone due to the inflammation.
but we were also told not to 'hold back' dc. they know best what they can/can't do.
dc had to take a big dose of naproxen to reduce inflammation for about a year and after that takes ibuprofen if/when required.
plus ice sleeves that are always ready to go.

We were warned off any high impact exercise like running/jumping etc. for 6 weeks as the bone will be weaker while it recovers and then that changed to very much to doing everything as normal to encourage normal use of the foot and that using it will help it to recover.

I feel like they give conflicting answers so it's hard to know what to do. Is it 6 weeks from when the infection went? He's had a little swelling on his heel but that's going down now and hasn't felt hot for a good while now x

I'd have thought so. I think that's what we were told but it does all get mixed up. We've seen about 20 different orthopedic doctors between hospital admissions and they are definitely not all reading from the same hymnsheet.

If there's still swelling I personally would hold off any running around for now. Make sure he sits with his foot up while watching TV or whatever. This will help the swelling to go.