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.

Hi @GoneIsAnotherSummersDay and @PeachGoose. I hope your kids are continuing to improve.

my 2 year old has been in and out of hosp since last Monday with osteomyelitis of the shin bone (in and out of hosp because we had to keep taking him back until they found it). Finally diagnosed properly 4 days ago. He had 2 days of IV antis last week when first admitted just incase it was a bone infection but they checked one leg bone and it wasn’t there so we were sent home again. So then about 4 days off anti’s and back on them this week when they found it in the tibia.

the infection site is sore to touch now - day 4 and the paediatric doctor said this is due to increased blood flow to the area whereas orthopaedic doctor thought it was weird that he was now in pain. He is only 2 however so has had trouble communicating the whole thing to us all along 😆. I take it from your stories that your children’s pain didn’t clear up 3-4 days after antis and it will take much longer? I was expecting this but the ortho’s comment made me worry.

@Lala2022

Sorry to hear your DD has osteomyelitis.

I would say that on days 1-4 of AB my DD's pain was still significant. With nothing touching it and at rest her pain level would be down at a 5/10 but then, especially at night, she would get waves of significant pain that would wake her and have her crying out.

Things improved a lot from day 5 onwards in terms of the waves of severe pain but in terms of using that foot properly or someone touching it she absolutely just wouldn't let it happen. She kept her heel off the ground the vast majority of the time for a good four weeks. However, it did turn out she had active infection in the bone, discovered at 4 weeks so it's not surprising it was still painful. Following the surgery to sort that out things improved more convincingly but pain was still an issue for at least a month after that.

There then comes a grey area after weeks on end of pain where it's hard to be sure how much is proper physical pain and how much is avoidance of anything they expect might cause pain. DD still won't let a doctor touch her foot but I think that's because she just doesn't trust them. Some doctors were really quite dismissive of her pain at times early on in this which I'm sure has stayed with her.

I'm sorry your DD is going through this, it is an incredibly painful thing to have.
I had acute osteomyelitis in my ankle from 10 years old to 13 when they finally operated on it. When I first had it the pain would come and go, and the GP would fob us off with "it's a virus" and "it's growing pains". But as the years went on it was absolute agony and tbh it ruined a big chunk of my childhood and I couldn't go out anywhere because I could barely walk. The final time my mum took me to the GP she told them she isn't leaving until something is done - that evening my ankle swelled up like a balloon!
Once I was referred I had a brilliant surgeon, who, once I had a scan on it he rearranged his work week so he could operate on mine the same week he got the results. I had to take flucloxacillon for a few months after the op and do ankle exercises to keep it from going stiff.

@GoneIsAnotherSummersDay thank you for responding! From what I’ve read it seems like most people have a fair recovery period so we shouldn’t be too concerned that my son isn’t interested in walking at day 5 IV anti’s. But also a very difficult environment to encourage walking.

they are such long days in the hospital so I feel for everyone who has gone through this. My partner has been there every night as we also have a 3 week old at home. 😞 fingers crossed we’ll be home together again soon.

@uxie that must’ve been awful. Thanks for responding. Great that you finally got it sorted. Apparently our son doesn’t need surgery as the bone is still healthy so fingers crossed it remains that way.

@uxie I feel so sorry for you. That's absolutely horrible that you were left in pain like that for so long. There do seem to be issues with diagnosing osteomyelitis.

@Lala2022 Goodness you've got a lot on your plate. Congratulations on your new baby! And I'm sorry that you're going through this at such an inconvenient time.

Yes, hospitals are not an easy place to be. Both hospitals we stayed in had a playroom on the ward which was really useful for encouraging DD to move as she would be more likely to forget about her pain and try to walk normally if she was distracted with toys. We also went off the ward every day, to explore the hospital when DD was very unwell and go and choose some fresh fruit from the shop, have a hot chocolate at the café or whatever, or, once she was well enough that it felt ok, we used a wheelchair to go for walks outside. Fresh air is really really helpful. Of course you'll likely have a pushchair for your DD so you don't have the hurdle of finding a paediatric wheelchair to be able to go for walks.

Make sure you eat 3 meals a day. If your daughter naps, allow yourself to leave her to go for a quick march around outside to help deal with the stress.

Sending positive thoughts in your direction. Just remember that in a few days' time you will be at home.