Desperately need some advice: daughter so unwell

[VirusSchmirus]

I'm really hoping someone can help or at least provide reassurance.

My DD11 is now at week 3 of having severe stomach pains, so much so she cannot walk without help or sit upright. She is eating and drinking relatively OK.

The pain means she has pain relief every 4 hours, paracetamol and ibuprofen on rotation. She is asking for pain relief an hour after the last dose. It does very little to make her comfortable. I have tried to entice her to do things - and even the bribe of visiting her favourite shop and buying a treat (which would involve very little walking, just from the car park) resulted in her crying "I can't, I can't walk with the pain". At night when she eventually manages to sleep she cries or whimpers in her sleep. We're awake continually due to the pain.

She has had 2 ultrasound scans (no appendicitis or anything sinister) - they say her lymph glands in her stomach are inflamed (but only 1). Been told its mesenteric adenitis.

Have had private GP assess her. The bar seems low - if she can eat, drink and poo then she is deemed "clinically well". Saw another GP last night after she suffered a day of diarrhoea (new symptom). I ended up crying - which probably wasn't helpful - after we just went around in circles. Scan is clear, bloods are relatively clear (low markers but expected with a virus), urine test clear. Tilted head from GP yesterday "what would you like me to say or do".

My gorgeous daughter, who is usually so full of energy and laughter and endless bloody questions, is silent, and I can see her getting thinner and thinner, and more miserable. I feel like I'm one of those mothers who is making things up as I just can't seem to get answers (main question - when will she start to just feel better - not even get well, just a tiny bit better?). No one seems able to answer.

What can I do? Is mesenteric adenitis really like this - no improvement at all for 3 weeks?

AIBU: its just a virus, suck it up
YANBU: that's bonkers, go kick some clinical ass

My son had this 2yrs ago when he was 17. Scan did show some inflammation around small bowel / appendix and bloods also showed some inflammation. We took him to A&E 3 times over 2 months. Eventually he stopped the protein shakes he had started taking for weight / muscle gain and it stopped. Whether coincidence or not I’m not sure. He was in agony though, horrible to see

Just seen another poster mentioning gallbladder.

I was also only diagnosed when I turned yellow.

Coz nobody assumes a 12 year old could possibly have gallstones.

Keep pressing for answers! Please! If they rule it out, fine, but get it ruled out.

Hugs to you DD.

Symptoms (pain, weight loss) sound IBD-like (Crohn's/colitis). Has she had blood CRP tested (for inflammation?) or faecal calprotectin? (marker of inflammation in GI tract)

Apologies if this has already been said.

I'm very sensitive to ibuprofen and before I realised, I would take one dose then be in bed with pain worse than childbirth.

I really would try her without it if at all possible just to ser if any reduction in pain.
The pain ibuprofen can cause - even the topicak one for muscle pain - is almost indescribable.

Can you get her some anti spasmodic? You can buy Mebeverine at the chemist or ask your GP if they can prescribe some for her to try. ]there is also buscopan. Read here https://www.buscopan.com/en-gb more information about IBS on their site too

I’m exactly the same. Had it as a young child and now get it once or twice a year (and have done for the last 30 years)but it only lasts 12-24 hours.
I take painkillers and go to bed til it passes.
Relieved to hear of another adult with this “Children’s condition” (as my dr put it when I was a teenager)

OP I hope your DD recovers soon and doesn’t continue to have it for years to come. But if she does it does get a bit more manageable I’ve found.

My eldest dd once had MA it took a few weeks to clear, I can still clearly remember the pain she was in paracetamol and ibuprofen didn't touch it, early hours one morning she was pleading to go to hospital because of the pain. After GP visits and a trip to A&E she just had to ride it out unfortunately.

Did you mean to be so rude?

The suggestion was made that the OP ask for a calpro test to diagnose IBS. The point I was making is that a high calpro level alone is NOT enough to give a definitive diagnosis of IBS. And that the GI irritation and inflammatory process which MAY be caused by a dietary intolerance CAN elevate calpro as one part of a wider clinical picture.

Have they looked at whether it's endometriosis? Or maybe some sort of ovarian cyst that has twisted?

Just keep going back. Let them know she's not improving. Hope it gets sorted soon x

Really? Depends how high. It's what is currently recommended by NHS.

Calprotectin in the 1000s is pretty suggestive, not of IBS, but of IBD. Such as Crohn's. It's a useful proxy, OP, and I think it would be a reasonable request.

Haven't read all the replies but having had similar with my DD I think you need to insist on a referral to a paediatric consultant.

DD had similar onset and was admitted to hospital with suspected appendicitis. It wasn't and then diagnosed with mesenteric adenitis.
She then had abdominal pain pretty much every day after. Some days okay, others so bad she couldnt stand up. Affected her school, got thin, very tired. She has a very high pain threshold as well so it was worrying.

I kept pushing and finally got a hospital referral. Loads of tests including MRI. Eventually diagnosed with abdominal functional pain. Medical consultant advised removing her appendix, although not certain it would resolve. Eventually after 4 years (and trying lots of treatments including therapy) she had appendix removed. No more pain.

It may not be the same issue but your GP isn't going to be able to diagnose. She needs a specialist to see her.

I have a chronic illness, it’s nothing to do with stomach issues but I thought I’d give some perspective. When I was a child I showed signs of something being wrong as I was in constant pain, the doctors said there was nothing wrong and that it’s all in my head. My mum fought over and over again stating something is wrong and it took over two years for us to finally be listened to for me to get a diagnosis. It was/is an incredibly rare diagnosis that still affects me to this day, but I would have never got the diagnosis if my mum didn’t fight for me. So please OP fight for your child, I wish you and her the best x

@Hollywoodeyes

Yep probably did mean to be rude as its still rubbish and will just confuse people

IBS ( irritable bowel syndrome) and IBD ( inflammatory bowel disease ie Crohn's and Colitis) are 2 completely different diagnoses. So firstly 'a high calpro level alone is NOT enough to give a definitive diagnosis of IBS' makes no sense.
Calprotectin is normal in IBS - if you mean IBD then a very high calprotectin can occur in GI infection as I said previously but if the symptoms are more chronic then it usually indicates IBD. Dietary intolerance is associated with a normal calprotectin. Coeliac disease (an autoimmune disorder) can result in a mild elevation of calprotectin.

@MumofCrohnie is talking sense however

Yes it's strange. I never heard of this mesenteric thing til last weekend when I ended up in hospital with my daughter in horrific pain and that was the suspected diagnosis. I followed the other very similar thread. Is it suddenly on the rise??

OP your little one sounds like mine and I'm so sorry she is so unwell. We are only 6 days in and possibly fooling ourselves that she will be OK in a few days. I'm really worried though

Yep. Even though DD is pretty well now, her calprotectin remains raised, it was 1800 last test. Way too high for anything except IBD.

There are other blood tests they do in suspected IBD. I forget them all - sedimentation rate, CRP which tends to be mildly elevated only in Crohn's (DD 's was 17 ), full blood count - platelets often mildly elevated, vitamin levels. Basically they were pretty much 100 percent that DD had Crohn's before the colonoscopy from her blood panel and presentation (in her case, pale, diarrhea, breathless, weight loss, no energy). The colonoscopy was just a confirmation.

Mesenteric adenitis is usually not serious. However, sometimes it can cause complications that include:

• abscess, which is a pocket of pus in the abdomen
• dehydration if your child has severe diarrhea or vomiting
• joint pain called arthralgia
• peritonitis, a rare condition that causes inflammation of the membrane that surrounds the outside of the organs in the abdomen
• sepsis, which is a result of an infection causing systemic inflammatory response syndrome

I would try a food diary, I have a severe allergy to gram flour, and after years of agonising pancreatic pain (pain in the upper abdomen that radiates round to the back) finally realised what was causing it. It could be some sort of allergy

Please try to avoid Ibruprofen. I presume some people can tolerate it more than others, but I took it regularly for a couple of weeks after hurting my back in summer and I now have diagnosed gastritis. It’s awful. I wouldn’t wish that on your daughter as well.

Good luck getting some answers xx

I reckon it could be IBS. I had it for a few years as a late teen / early twenties - things like pizza and coffee made it worse. My sister had it very badly and after months and months of hospital tests and thinking it might be crohns was prescribed some antidepressants to manage the IBS pain and it worked. Not suggesting your daughter will need antidepressants but it was the only thing that worked for her...apparently bowel issues like IBS are very much linked to nervous system.

Oh how awful - your poor Dd. I've no advice other than to say never ever feel guilty for advocating for your Dd.

Also Dd had MA when we were on holiday when she was about 7/8 she is also a hyperactive and stoic kind of kid so to see her writhing around in pain was awful. We ended up lying on the bed with her gripping my hand with the cramps - they were like contractions. It was horrible and scary. I think it only lasted about a week but maybe because she was a bit younger than your dd?

Interesting about arthralgia. Dd had horrendously sore hips with MA and when she gets any kind of upset tummy since her hips ache.

Have they ruled out kidney stones?

You cannot become immune to the effects of paracetamol and ibuprofen.