How long do I leave DD in pain?

[RibPain09]

Sorry this could be a long one.

DD (9) has had pain in her upper right quadrant for nearly 6 weeks now. I took her to GP originally after it was getting worse not better - was sent to children’s ward who did bloods and sent her on her way with the surgeon saying she’s constipated, bloods were fine.

The next night she laid on the floor screaming for 20 minutes unable to get up so she went up again. This surgeon said it was muscular & to rest for 2 weeks.

Pain was still as bad (think screaming out with every step) nearly 2 weeks later so took her back to GP - he gave her exam saying yes definitely muscular and just a case of painkillers, which don’t touch the pain, and rest.

4.5 weeks after the pain started and she was still in as much, if not more pain. GP sent us back to children’s ward. More bloods and an ultrasound didn’t find anything. Dr said she could feel a couple of hard stools at the opposite side of stomach so as they’d ruled everything else out it was most likely that. Sent home with movicol.

That was a week ago and she’s worse now than ever. It used to just be when she moved it was sore, now it’s when she’s lying still, much worse when moving though.

I feel like we’ve seen enough dr’s that I should be reassured- but I’m not. I worry if I take her up again I’ll be labelled as a time waster/exaggerating. So wwyd? She’s been referred to consultant for appointment in 6 weeks - do I let her scream for 6 weeks? 1 more week? She’s opening her bowels daily and they’re soft.

Still so frustrated! Have seen consulant who wanted to treat her for constipation, not aware she’s alrrady been treated for it. Asked to keep a diary of days she’s sore to see if it’s food relates, not realising she’s sore every single day and only really when she moves. Want to scream - loudly.

They’re going to go away and talk about what to do next but they just don’t seem to get it and I don’t know what else I can say or do to convince them.

If it gets to the point where they come back and say no more tests, treat for constipation- I’ll burst into tears and do some begging.

Oh that is so frustrating Rib
Spell it out in no uncertain terms to the Drs how your dd is every day and that none of the meds are making it better. If it was constipation it should have been cleared by now.
Tell them you want her checked for appendix and gall bladder problems. Gall bladder pain is the worst, I can confirm that (currently waiting on scan for mine) if it is that then no wonder she is doubled up in agony and the usual painkillers dont touch it at all. I have anti spasmodics plus strong pain killers to keep on top of it till its investigated. Poor dd. I hope they get their fingers out today and find out whats wrong.

How is she this afternoon. Have you eaten? Is there anyone that can sit with her for a bit while you grab a shower. Often, if you get a breather you're ready for round two!

This is awful! I’m so sorry she’s in so much pain.

Just a thought on reading all your posts- ‘musculoskeletal’ cause was mentioned by GP at one point... has anyone done a thorough musculoskeletal exam? Esp as it’s worse with movement... As in checked her spine, pelvis, hips, reflexes and muscle strength etc...

Right condultant came by and I gave him a big list of all the things I thought it could be (thanks for all the suggestions!) - I hate feeling like I’m telling them what’s wrong but had to be done.

He has said between bloods and the scan he’s 100% positive it’s not liver/gallbladder/ovaries/Appendix/blocked bile duct. He is however referring her for a kidney function test due to scarring. I imagine it’ll not be immediate though.

He didn’t seem to know about her throat puss , so I asked him about glandular fever and after looking at her he said that would be most likely, even though the bloods came back fine for that. He will look at swab results when they return, but if it’s this it could take several more months to resolve itself.

He’s basically said they’ve done all the tests they can do & looked at all major causes. He doesn’t want to given her strong analgesic due to her age and being almost pain free stationary.

So we are getting home this evening, not sure if we are further forward or not but I feel more reassured. They seem to have ruled out muscular due to the length of time it’s been going on.

Her school breaks up on Monday, so at least she won’t miss any more of that - but I’m gutted for her that her summer holidays will be tainted by this.

How reassuring/frustrating all at the same time! Good that they have exhausted a big list of nasties... length of time would certainly exclude an acute muscle strain but certainly not anything originating from the spine, nerves and muscles.
If it’s accessible to you cost-wise I would be taking her to see a Chiro/physio/osteopath privately for their opinion. It’s not an area the NHS excel in IME.
I hope you find some answers soon.

*certainly not everything

That should read!

Does he expect her to stand/sit still for the next few weeks?
My blood tests are fine for gall bladder but I still have the classic symptoms! Just means its not bad enough to be building up in my bloodstream, Dr has referred me for a scan to find out whats going on with it.

Hi op hope she is doing OK. On the not having sore throat thing - I was hospitalised at age 10 for a week. When I was eventually hospitalised it was for dehydration caused by tonsillitis. My mum had me at the gp so many times in the run up to that week. I also presented with stomach pain and was unable to keep anything down and was tested for appendicitis etc. When I was admitted they couldn't believe that I kept saying my throat want sore - apparent glands the size of golf balls. Eventually a consultant appeared and said he had seen it before where children can get referred pain from throat to stomach.

Yup expects her to be bedbound I guess, gallbladder was clear on scan apparently and looked perfect. I understand their point and must be frustrating for them too - but more so us.

Another thing he thinks it could be is ‘feeding’ related. Wants elimination diet and food/pain diary when he see’s her next. Which I’m happy to do but given how quick it came on, with no changes to her diet, I’m loathe to think it’s that.

Good idea more, I was thinking earlier how much I’d just love to go entirely private for her, then they may be inclined to do more tests as we are paying for them. Unfortunately I don’t think we could quite stretch to that though.

Referred pain sounds like it could be a possibility?

Poor you and dd, how frustrating for you. Hope she feels better soon

SOrry missed the bit where you said she had had a gb scan. Thats good news.

It is an unusual location but could be adenitis linked to the tonsils.
I took dd to A&E once thinking she had appendicitis but it was adenitis. She developed full blown tonsillitis a few hours later.

Hope you get news soon on exactly what it is. Bloody worrying when no one can decide what and how to treat it.

Adenitis is what friends DD was diagnosed with, eventually due to private healthcare it was ovarian cyst twisting her Fallopian tube however with the tonsil issue it's a much better "fit" with the symptoms she has.

Swollen glands in stomach was something I suggested and was ruled out apparently. I’m having to her get a wheel chair or she just can’t leave the house. I also have an 11yo and 11mo so can’t really stay housebound.

She’s starting to refuse food now because of the burning she gets in her URQ, so we might have to go back up sooner rather Han later. Hopefully she manages something later.

The uncertainty is the worst.

horrible situation

Oh your poor girl, I can't believe she's being left to suffer like this! Hope you get some answers VERY soon

Thank you to all of you - making me all emotional knowing you guys are in our corner!

I had to go back up to the ward today to pick up something we left (just 10 minutes from home luckily!) and the nurses were all so lovely asking after her and when I explained about the wheelchair I burst into tears. Nurse in charge wasn’t happy that she needed a wheelchair and that I was obviously quite distressed. She went through a few medical points that they might look for next (including psychological services).

She’s going to email DD’s consultant on Monday to say DD can’t leave house without wheelchair, and I was in a bit of a state with worry. She hopes this helps things (not sure what things mind!) move along quicker, or at least make him have another think if there’s any other possible cause that could have been missed.

She’s also going to speak to tonight’s peads dr and explain her worry to her. The nurses are actually angels.

Oh and she’s had some food happily so don’t have to panic about that anymore at least

Glad the nurses are taking charge and putting a rocket up the drs to get this investigated more. Its horrendous that your dd is left like this.
I hope take on board the s/c and your concerns pdq.

w/c not s/c!

How is dd today?
Thinking of you.

You're absolutely doing the right thing to keep pushing - do not stop jumping up and down and shouting, they will find the answer in the end.

This sounds exactly like what a friend of mine has just been through. Including a doctor telling the mum off for putting kid in a wheelchair to go fur a walk off ward-she could walk herself he said! Turns out after 4 weeks that it was constipation/impaction. She has been on movicol etc which was allowing the new loose stools to bypass the impacted ones. At no point had they given her a suppository to clear from the bottom upwards. One enema later and all sorted! But because of the time it took her intestines are stretched,bruised and achy but she is getting better every day.