Mesenteric adenitis... still going

[VirusSchmirus]

Posted a thread about this 2 weeks back, for some reason I couldn't post comments on it after a day or so later.

DD11 caught a stomach bug, recovered, but then experienced awful pain a day or so later. This continued for a few days before I took her to our GP. Suspected appendicitis, scan rolled that out. Swollen lymph nodes mentioned, sent home to administer pain relief and keep her comfortable. This was beginning sept, she has never improved since then.

We've been back to the doctor 10 days ago, and he gave us some amitriptyline for the pain. DD is a very small 11YO, and after reading the leaflet as well as a few threads on here of people that have used it, decided against it. Side effects seem significant, leaflet said not tested long term for safety on children.

We're continuing ibuprofen (with lansoprazole to protect her tummy) and paracetamol on rotation. Hot water bottles. Etc

But here we are rolling into week 5 with no improvement, if anything the pain is getting worse in the evenings. She is eating ok, less than usual but ok. Manages to poo but at least one bout of diarrhoea each week. At best she's laying down watching tv, at worst curled up in a ball unable to move due to pain.

Bloods are clear for inflammation, coeliac, allergies etc. stool sample also clear.

2 scans show just 1 swollen lymph node in her stomach. She's missed nearly five weeks of school. We have to help her walk due to pain, go to the loo, etc. cannot bear to sit for longer than 10 minutes which makes doing anything very difficult.

My questions:
If your child has had this, how long before they got better?
Did they get better gradually, or was recovery quick?
Should we accept it is what it is, and just keep waiting, as has been the advice so far? How long do we wait?! She's desperate to get back to school and her clubs.

Any medical advice is also appreciated, before anyone piles on i obviously would discuss this with our GP first.

Thank you

My DC had this about a year ago. Symptoms came in over a period of 8 hours or so. Pain started centrally and gravitated to RH side. DC could barely walk, shaking and crying.
We were on holiday so ended up in A&E because we thought it was appendicitis.
After thorough checks and examination it was determined to be MA.
It took about 3 days for normality to return.
We haven't had any bouts since.

As it seems to be linked to viral infection perhaps the way forward might be to look at supporting the immune system.
Does your daughter have anxiety about school at all? It could be linked.

After 5 weeks I'd expect all symptoms to have gone so this does sound as though something else is also at play. Would you be able to get a second opinion, medically?

*When I say 3 days, that was for the severe pain to go. After a week we were back to normal movement, and after 2 weeks, firing on all cylinders.

As an afterthought I know you said all the tests for coeliac etc. were OK but it could be that currently something is causing a food intolerance. That could cause cramping, trapped wind, pain, diaorreah, etc.
Dairy is often problematic but wheat can also trigger.
Not saying it is this but if her stomach is already on 'high alert' some things might be too much whilst she's fighting off MA.

Thank you for your reply. This is what I'm hearing from others - short term and comes in waves. DD can't sit for longer than 10 minutes, cried when she walks, wakes through the night in pain despite pain relief. Having a bath is agony for her, we've realised sitting her up in a shallow bath and showering her so it's super quick is the best way but she cries throughout.

At night her stomach does this weird convulsing, like a hiccup.

She's usually sporty, active and sociable so this is really starting to impact her MH. Yesterday I managed to get her to lay outside on a picnic blanket and do some beading, she managed 30 minutes before coming indoors and going back to her usual curled up position. I can't believe we're at nearly 5 weeks.

She does have a diagnosed dairy intolerance which is usually well managed. No other intolerances or allergies.

I looked this up when I read you last thread and the information did say that it could last for several weeks??
When was the last time she was seen? Time for another visit to the doctors?

We have tried:

Usual GP
Paediatrics (where they tested for appendicitis)
1st scan/bloods
Back to usual GP a week later
Private GP
2nd scan/bloods
Back to normal GP after severe diarrhoea and pain at week3
Private GP check up, gives the super strong painkillers /antidepressants

I haven't been back to any doctor last week as kinda gave up. But last few days have been awful so I can't believe there isn't anything else?

Was thinking of asking hospital to take her in and observe over longer time period instead of the 10 min check over?

Ds took a couple of weeks to recover, it was more 4 weeks for full recovery.

We were the same with scans, bloods, etc. he was kept in hospital for a week with it and it took weeks after that for the stomach pain to fully go away, if he needed a poo it was worse for him.

Can you remember at what point he started to improve?

@anon0007 meant to say thank you too!

Did the hospital give him any medication that helped the pain whilst he was admitted?

I'm thinking she could do with the relief as she is shattered.

Ds was given calpol and nurofen but had the correct dose calculated going by his weight rather than what it said on the bottle, he was also given a laxative because being constipated can make the pain worse.

I remember your thread.
The description of her stomach kinda doing a hiccup reminds me of stomach spasms you get from IBS.
IBS can be triggered by being unwell.
It can come in waves, eating can set it off, which then causes anxiety about eating which then makes IBS worse.
I'm not a medical person, just personal experience. It can be a continuing cycle once it's triggered.
I was given amitriptiline for it to begin with. Has the GP mentioned anything like IBS being a possibility?

I would probably go back to the GP and stress that there's absolutely no improvement, it's getting worse and hopefully they will be able to do some other tests or something. It sounds absolutely miserable for her

as I said in the last thread- would recommend private paediatric gasteroenterologist

Thank you @geniap , will do this.
After the last thread I just thought we will have to wait it out, but there is no end in sight and I can't leave her suffering like this.

I just need to know what I'm asking for when I do go back so don't get fobbed off with "nothing can be done".

A lot of medication hasn't been tested for long term use on children.

What side effects are you worried about? I would be weighing up taking the medication vs the continuing pain your child is in.

DS had this. Treated with iv antibiotics and subsided. Lots of debate by surgical team about if or not to operate at this admission, they decided against in the end.

Reoccurring a few weeks later as full appendicitis. He was heading for sepsis by the time he went to. theatre.
He had very high CRP both times, severe pain, high temperature.

@Einszwei totally agree, and usually would read the leaflet as something to bear in mind. I am not happy using antidepressant medication on an 11 year old. Her brain is developing, the side effects are very heavy (appears to be worse coming off them) plus you know what? I don’t want to be just given another packet of pills without more investigations. On the scan it only shows one swollen lymph node so I’d rather they do some more checks before we go down this path. I wanted to know other’s experiences so I can weigh up whether I’m being unreasonable in my expectations of her recovery.

We haven’t even been given antibiotics, I guess because her blood tests are clear?

Could you stop the ibuprofen, I am very sensitive to it it gives me horrendous gastro symptoms and my second son is the same I avoid it altogether now but had a very rough time with it. I would go back as it should be settling by now. I’d ask for a paed gastro appointment then you are seeing one dr instead of loads you might get better continuity of care but it’s the nhs so things don’t happen quickly

My son was off school for 8 weeks then it was the Christmas holidays then he went back to school part-time for about 6 weeks.

It was an extremely worrying time and I remember wondering if this was start of ME or something.

It was extremely difficult to get the GP to help. He kept on insisting that it was psychological and he was probably bullied even though the school told him that wasn't the case.

It doesn’t sound right. I wouldn’t give her amitryptiline for this. How about some peppermint tea to try and calm down any bowel spasm.

I think you need to take her back to the doctor

5 days, took about 3 days for pain to ebb then back to normal.

Absolutely horrendous medical management in the children’s hospital.

@BoohooWoohoo did the pain gradually get better? And was it severe enough to stop him moving?

There's so little guidance on this, online info makes it sound like a couple of weeks of discomfort which can be helped with OTC medication and then all good.

I'd say it's actually worse now than it used to be (I think - although the days just merge into one long day of crying, giving pain relief, trying to keep her buoyant etc).

Sorry for all the questions. Your experience sounds closer to what we're going through.

If she has a dairy intolerance it's possible she's developed others now. Especially if the dairy was replaced by something like soy. Maybe that's contributing.

Bumping for the evening and night crowd. Interested in any experiences of mesenteric adenitis/how long it took for recovery.
Thank you!

I think if a peadiatric gastero confirms the diagnosis and says nothing further, I would accept it, but ensure there is some sort of review or follow up in place so you're not abandoned. (You could ask for this to be done in the NHS).