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Original poster

****LILLY'S MRI RESULTS****

28 replies

lilsmum · 26/07/2005 22:18

the MRI has shown that she HAS got a bone infection , what i dont get is when she was admitted on the ward for her foot they did a bone scan and they said nothing showed up, but this MRI has shown a bone infection and fluid around the bone.

i am sort of glad it showed something as .....

A) i thought i was cracking up, as they kept saying there was nothing there.

B)i ummed and aahed about whether to let them do the MRI as she IS walking and it required a sedation.

the plan of action now is to wait for her consultant to back off his holidays and see what he wants to do.they treat bone infections either (if severe) by cutting away the diseased bone, or 14(i think) weeks of IV antibiotics. basically bone infection is like a cavity in your tooth, it eats away at the bone,but to me it doesnt look very good considering that it has shown up now, when the major prob with her foot was in april

there is definate weakness there as prob once a day she limps (normally when she is tired) and she walks with her foot turned out slightly.

bone infection is caused by infection entering via blood....i.e they DID do this with the previous admittance for gastroenteritis (when trying to canulate)problem is i gotta prove it!!

OP posts:
misdee · 26/07/2005 22:20

at least now you know what the problem is, and now you can focus on the next step.

trefusis · 26/07/2005 22:24

This reply has been deleted

Message withdrawn

Fimbo · 26/07/2005 22:25

Oh No. What a horror story.

hunkermunker · 26/07/2005 22:26

Oh, sweetheart, your brave little Lilly - give her a big cuddle from me.

Glad you have the results and hope that she is treated well and quickly xxxxxxxxxxxxxx

kid · 26/07/2005 22:27

Pleased they have finally worked out what is wrong and you no longer need to feel like you are cracking up.

Once treatment has been decided, maybe you can decide what action to take against the hospital.

Good Luck

Nbg · 26/07/2005 22:32

Oh I was wondering how you were getting on with this

Poor Lily, Is she ok now apart from the limping?

I really hope she gets her treatment quick. Fingers crossed for you and lots of hugs for Lily.

giraffeski · 26/07/2005 22:56

Message withdrawn

Frizbe · 26/07/2005 23:01

Sorry to read this lilsmum, but at least you know now and certainly sound like you are on the case to get this sorted out asap, go gettem girl

foxinsocks · 27/07/2005 21:26

sorry to read that lilsmum. One of our friend's children had a bone infection - he had the IV antibs and is now as right as rain. I hope they come up with a plan soon.

Original poster
lilsmum · 27/07/2005 21:41

thanks for all the kind messages, i am considering writing another complaint letter tbh as i have since found out that bone infection doesnt always show up - at the time, usually only a couple of weeks after when the new bone is healing (as GS said).

all i am saying is this consultant better have had a nice relaxing holiday as i have plenty of questions when i see him.

what i dont get is...

why didnt they do a MRI when they had a neg bone scan, ultrasound and x-rays - at the time she couldnt walk (april)?

why didnt they organise starting her IV antibiotics yesterday? why wait ANOTHER 3 weeks for this consultant to come back, i know he is lilly's consultant but surely it is better to get on with treatment than to leave it?

i am SOOOO mad again, i went to see my GP this morn, he said NO way would it be the gastroenteritis "settling" in her foot as gastro is caused by a rotavirus NOT this certain bacteria that causes bone infection, and also gastro can cause inflammation but NOT bone infection!and that bone infection is a blood linked infection...so what does that tell me??

i asked GP off the record, did he think a "dodgy" canular insertion in her foot could cause a bone infection? he said highly possible!

sorry for the rant, just so mad, tried to phone the consultants sec this morn - no answer, also rang PALS but they said because i have formally complained, that they cant help me....AARRRGGGHHH!!

OP posts:
Original poster
lilsmum · 27/07/2005 21:42

god i wish we had lots of money so we could get lilly seen to privately

the NHS system is a complete and utter joke!

OP posts:
Miaou · 27/07/2005 21:47

Aw, just seen this lilsmum, I'm so sorry that lilly still has this problem. I'm sure it's of little comfort at the moment that now it's diagnosed they can start to treat it...particularly as they are making you wait another three weeks before starting.

It's always possible that you may never get the answers you want regarding how she got the infection .

All the best to you and Lilly. I'm still keeping my fingers crossed for the results of YOUR MRI too.

Original poster
lilsmum · 27/07/2005 21:47

sorry still ranting lol....

i just cant believe they would leave a 18mth old baby like this...it just breaks my heart

it isnt something that will go away that is the scary part, it is eating away at her bone and its been 15 weeks since her 1st symptom, 7 weeks of being unable to walk, 3 weeks with a leg cast on!! and now yes she is walking but as i said before, does limp slightly (more when tired) and walks with her foot out at a angle, just want it dealt with

OP posts:
Original poster
lilsmum · 27/07/2005 21:49

thanks miaou you are right, just so stressed out with it all feel like i am gonna flip!

OP posts:
Miaou · 27/07/2005 21:55

It'll do you good to have a rant, lilsmum - particularly at the moment when you must feel so helpless.

At least your doctor is not dismissing your worries and is letting you talk to him about how you feel.

Original poster
lilsmum · 27/07/2005 21:57

miaou...my GP is brill! really lovely, and helpful, he is a real help! sometimes i feel like a pain though lol.

OP posts:
Miaou · 27/07/2005 22:00

Don't forget, GPs are there to give you emotional support as well as hand out prescriptions - he/she will understand that you need to talk just as much as Lilly needs to be treated - particularly given your own medical needs at the moment!

As long as you're not taking the p*ss and banging on the door every day

docincognito · 27/07/2005 22:27

lilsmum, bone infection is usually caused by infection entering via the blood stream. Your GP is wrong though, if he is saying that a gastroenteritis bug can't cause bone infection, it can. Rotavirus (if that is what she definitely had) doesn't cause osteomyelitis, but salmonella can, and so can E. coli. It doesn't seem to me that they know for sure what bug is infecting the bone (although Staph. aureus is the commonest bug to cause bone infection, it is by no means "certain"), and starting IV antibiotics on a "best guess" basis would IMO, be wrong.They need to know which bug it is, in order to be able to tailor the antibiotics to it. It sounds to me that it would be far safer to wait until the Consultant is back, than to launch into treatment that might not work.

Original poster
lilsmum · 27/07/2005 22:48

doc...how would they find out which bug though? also will they definately treat it? is it something that can settle on its own?

sorry for all the questions, just nice to talk to someone who knows what they talking about for a change

OP posts:
Original poster
lilsmum · 27/07/2005 23:13

you there doc?

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docincognito · 28/07/2005 10:47

sorry to leave you hanging, lilsmum, I was at work!

It is likely that they will treat the infection- it usually doesn't go away on its own. Ways to find out what the bug is- blood cultures ( a blood test- this may not work if it is a low-grade infection, which it sounds like, and certainly wouldn't work if she is already on antibiotics), or bone biopsy. I think this is most likely. A small operation is done under GA, to open the bone at the site of the infection. Fragments of bone can be removed for culture (and often bits of surrounding tissue too). This would be the most reliable way of getting the bug. Depending on the scan appearance it may be worth trying to suck out some of the "fluid" with a needle- GA would still be necessary for this, IMO.

Original poster
lilsmum · 28/07/2005 23:27

doc...thanks for the info, lilly has a appointment booked for the 23rd aug, her consultant is away till then,

do you think it is ok to put it on hold till then?

also do you think that because it was untreated in april (when she was unable to bear weight, and the heel was swollen, red and hot) that it is turned into a low grade bone infection?(because she can now walk on the foot)

thanks for all the answers and help. xx

OP posts:
Original poster
lilsmum · 29/07/2005 19:53

bump for doc

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docincognito · 29/07/2005 20:23

yes, if she's able to walk, fine to leave it a few more weeks, I'd say.

Very difficult to say from a distance what happened. Doubt very much if a badly inserted cannula actually went into the bone- that would be very difficult to do, even in the roughest of hands, but maybe she developed a soft tissue infection next to the bone which spread into the bone over the subsequent weeks? If the bone infection is right next to where the cannula went in, that is what I would guess happened. If not, then soft tissue infection spread via bloodstream to bone.

Original poster
lilsmum · 29/07/2005 20:26

thanks doc,

so how bad is a low grade bone infection? should i be worried?
xx

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