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

I’ve read almost this exact post in the last 2 weeks, only it as a boy that time.

Coeliacs?

I know that as others have said the best thing to do is to go back and push for answers with the drs, but I just wanted to mention Lyme disease, the early stages can at times present with fever and stomach pain and diarrhea. If you remember your daughter has been bitten by a tick or in a high tick area or has had a strange insect bite, maybe a test is worth asking for? There's usually a 'fresh wave' of ticks in early autumn so they can still be biting at the moment.

I've not read all the replies so apologies if this has been mentioned. But has she been tested for H Pylori? I don't think this would account for all the symptoms but I was plagued with crippling stomach pains for a long time and they were exacerbated by eating. I was popping loads of ibuprofen and making it worse (unknowingly!).

I tested positive and was treated with the triple therapy regime and was on PPIs for a while after. Possibly would account for some of the symptoms?

I think she needs an endoscopy and agree test for H pylori. Sounds like her stomach is inflamed or ulcerated? Maybe give codeine instead of the ibuprofen for a while.

Have they suggested going fairly or more specifically lactose free for a bit?

Sometimes stomach bugs cans cause a short term sensitivity/ intolerance and it could be that this is left over and so that's why eating is aggravating it and it's causing inflammation?

@DontLeanOnTheKeyboard I've seen this comment a few times with people tagging my username too. I really hope anyone who followed (and really helped) will know my thread was genuine. I actually wish it wasn't as it has been the most stressful few days of my life! Hopefully this post is genuine too and if so I really hope your DD gets the help she needs soon x

Dairy!!!! Not sure why my iPad felt that needed changing to fairly?!

maybe gaviscon

This is how Long Covid manifested for my then-8yo. She would be in too much pain to walk, shuffling around the house on her bottom, for days at a time. She ate and drank with no problems but was grey and frequently exhausted. She had tons of tests, without any answers. She and we were accused of all kinds of hysterics by both doctors and school, until we finally got her in to an LC clinic and got written support for her to rest and very gradually return to school. Antihistamines, a mast cell stabiliser and probiotics helped somewhat. But mainly rest and time.

Oh sorry managed to miss your posts about already being dairy intolerant 🤦‍♀️

I have Crohn’s disease and some of what you’re describing sounds like a flare (the stomach pain worse after eating, weight loss even though eating fairly normally and then the diarrhoea). Has she been checked for stuff like this? Did bloods show any inflammation markers?

OP I would take her to see a paediatric gasteroenterologist privately if you possibly can. If they were to say MA and no further action then I would be stop at that point.

Hi OP, this post brought me back in time! When I was a bit older than your dd I had a similar thing happen. I was in agony to the point that I was crawling on the floor to the bathroom. I was seen by GP then referred to hospital & had ultrasound & exam. I remember appendicitis & ovarian cysts both being mentioned. Nothing showed & they said it must be my stomach glands. I had 3 or 4 attacks of this pain over about a year & then that was it. I've never heard of anyone else being told it was a stomach gland issue until today. Mine was awful but did seem to go away itself & I've had no problems since

@Hollywoodeyes
'Calpro is not a definitive diagnostic tool for IBS. High calpro can be an indicator of food intolerances as well as other GI issues.'

This is all nonsense. Calprotectin is normal in IBS. A high calprotectin is also not indicative of food intolerances. It is raised in GI infections, coeliac disease, Crohn's and Colitis and sometimes after prolonged use of NSAIDs

I think there's something odd doing the rounds, OP. Just like the little boy from the other thread linked earlier, my 4 year old spent last week in hospital due to stomach pain. He couldn't walk, couldn't sit, screamed when he had to lie down. He would beg for a hug then scream that we were squeezing him. I've never seen him in so much pain. Then suddenly, like someone snapped their fingers, it just disappeared. He's been fine since. The dr's said it could have been a virus or stomach migraine but I was getting the impression they thought I was a paranoid mother with a kid that just needed to poo!

I hope your daughter turns a corner soon, the poor soul (and yourself) must be exhausted.

Try buscopan

Temporary lactose intolerance can be a symptom of coeliac disease.

Apologies if I have missed something (I have not read all responses) but when you go back to the doctor, ask about gallbladder problems.

And don’t let them fob you off because of age.

I had a similar issue aged 11 or 12. ‘Mystery’ illness, lingering abdominal pain.

Took two years to be diagnosed. I had over 70 gallstones. Gallbladder removed when I was 14.

Long time ago now (am 45) but wouldn’t want to wish the eventual gallbladder pain I had at 14 on anyone. Worse than labour.

She might just be gluten sensitive rather than celiac. Could you try going gluten free for a fortnight?

This may be completely contrary to every other response you hear but my daughter has similar issues that flare up every now and then. When it started we were absolutely lost. It turned out she had dyslexia (also being assessed for ASD and ADHD) and basically the enormous energy it took her to focus and try to keep up was destroying her. She doesn't remember to drink anyway (ADHD thing) so dehydration combined with exhaustion and anxiety caused severe stomach pains and she was a shell of herself. Obviously my experience is rather specific so made not be relevant but another possible cause could be her period starting. For months before hand some girls get severe stomach pains, my eldest did. Her actual periods are nothing as severe as the pains she experienced beforehand.

Hope you get to the bottom of it but to answer your question YANBU. Trust your gut, always. Worst comes to worst, the doctors think you're a drama queen and your LO is fine but I would take that anyday over not doing something and having to live to regret it.

Abdominal migraine?

You need to start your own post. Not piggyback on someone else’s

Sorry your daughter is feeling so bad, it must be really stressful for you all. My partner got a nasty case of food poisoning in 2017, he had awful vomiting and diarrhoea for a couple of days. He began suffering with terrible stomach pains straight after which has carried on to this day. The doctors have done various tests, but it’s still bad. He did get diagnosed once with post infectious ibs. He had pooped out all the good bacteria from his gut and this was the result. We found out months after that he should have been taking probiotics, eating actimel etc, to try and build them back up again. It might be something similar with your daughter, alongside the virus she has.
I hope you can get to the bottom of it, and that she recovers soon x