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

The private clinic say they need the ultrasound results first, I dont have private insurance unfortunately but will go anyway once I get the results

Another week gone, and no further forward unfortunately.

Our urgent referral to paediatrics will be in about 19 weeks time (again - the "clinically well" thing seems to apply, she is eating and drinking so nothing to worry about). I contacted the kind GP only to be batted away by the receptionist (online) who said they can't do anything about the waiting times. Advised to drop into A&E if it gets worse. I've tried constantly to do the right thing but now can see why people get fed up and call an ambulance or go to A&E in desperation.

I think they might have seen that we have used private over the last 3 weeks and are thinking we can just continue down that line. We are lucky to have that option (I say lucky - we work and pay for it) but that's not available to all, what a terrible situation to be in if you have no choice.

Update on DD: mornings seem to be a bit better. Managed to get her to stand up for 10 minutes. We've also had a gap in pain medication, last lot was 3am and she's still reasonably comfortable (will give her some more now as I don't want the pain to kick off).

how's things with yous?

@lantalanta Thank you for asking!
Changeable is the word I'd use. At the weekend we managed to get out for a coffee, so she sat upright for an hour and seemed happy. After an hour she started saying it was hurting too much, and then there were tears. But if I think back to 2 weeks ago that is progress. Yesterday she walked to a green nearby and we played a game with a ball for 30 minutes. The amount of time between pain relief is getting longer. It just seems soooo slow.

The other bigger hurdle right now is her mental health. She's been in pain for nearly 6 weeks, and away from schools and clubs. She is now getting stressed about returning to these, even the things she really loves.

At least some progress from a few weeks ago, we are also into our 7th week. We manage to sit up do some school work but its still tears and a struggle, slow slow recovery for sure.. good and bad days.

Its so so hard isn't it! Today she's flat out again, and pretty low. We had an early hours chat as she was awake with pain, and she's now getting into a loop of worrying about school.

I really hope your little one improves, do keep me posted. I wouldn't wish this on anyone but knowing we aren't alone helps x

DD was seen by doctor Wednesday and examined, which triggered 2 days and nights of severe pain. I asked the GP if it should have triggered more pain and he said not, and to go to hospital. So we’re here now and have been admitted. The private gp we see is also the main doctor here, and he’s immediately going down the “she’s stressed and anxious so pain is in her head” route. Calmly explain that her pain is 24/7, for nearly six weeks , she’s missed lots of nice stuff (parties, family events, drama club etc). The pain is consistent. My partner also came with us and whilst I took DD to the loo he spoke to him, kinda mentioning perhaps I’m also anxious?!. Asked to speak to an education specialist in the hospital who comes to talk to us. Think she can see that DD is not anxious about school etc. though asked to bring in last report, and if they can call her primary school? Fine, do whatever is needed to rule it out but I’m like really?! Her report says how confident and sociable she is, fits in well.

Anyway I’m glad she’s here. They can monitor her, keep her pain under control, and see how bad it gets at nighttime.

I'm so sorry, the medical profession have rather a habit of trying to blame anything on anxiety when they can't find a cause. Do try to keep your DP with you, they're far less likely to do that to men (I assume even because they asked him that he is male!). That's how it is. Don't let them get to you mentally, that's the only advice I can offer. Oh and demand a second opinion, and a third etc.

Thanks @Pollyputhekettleon . You’re right - I’m questioning myself now and yet I think back to every single night of her pain, and being unable to do anything - no. Not anxiety. And yes you’re right - the doctor said her ultrasound and blood are ok so he doesn’t know. My partner quite rightly said “keep trying” because they have to find the issue.

she had diarrhoea today and there was some blood in it, which I told them about. Forgot to try and get some for sample but probably be more later.

Yes almost everyone starts doubting themselves when no cause can be found, and of course you or your child being in pain for so long will cause anxiety in itself! As will dealing with doctors who blame it on anxiety... Chronic illness/pain sufferers deal with this all the time, don't take it personally but don't tolerate it either. Politely demand a second opinion, and as many more as it takes, until they figure this out.

I think I would try codeine, OP. She's nearly 12. It will relieve her pain but not cause stomach inflammation. She will need laxatives for constipation.

OP you know your child best , mothers instinct is huge . So many cases where parents have been dismissed as ‘anxious’ or symptoms as ‘anxiety’ especially in girls. As an aside if your dc was male would they be so keen to dismiss as anxiety? Remember Martha’s law , if you do not feel you are making progress ask for a referral to a specialist children’s hospital . You are being a brilliant advocate for your dd .

Thank you all, wise words.
Thankfully all medication decisions are being made by someone else now which is a relief.

i must admit I was cross when DH said the doctor had that chat. You know. “Silly girls getting anxious “, and wanting to check in taking the truth. Also really annoyed that the doctor almost used a hospital stay as a threat, when DD asked how long she’d be staying (being understandably concerned) he replied along the lines of “until you say you’re better”.

Anyway if it gets us moving forward, then fine.

I’ll learning to be a nuisance.

They have tried to send us home today as they don't know what is causing the pain. Said there's nothing behind her tummy button (where the pain is) apart from intestines. I've said no.

Been told we can come back Monday but it will be like the last 6 weeks where I've had to chase and nag etc. That she will be checked and then it's "nothing to see here" and sent home again without a care plan.

Really appreciate the support guys, reassurance is needed as I'm worried I'm not doing the right thing here.

You're doing the right thing. Them giving you a lesson in anatomy is not very helpful. Are they planning to do any more investigation at all?

I've just read your thread and I'm so sorry you and you DD are going through this. I can't offer any advice but just wanted to say dig your heels in and keep speaking up for your daughter. It is unacceptable that they want to send her home with no care plan when she is in pain. It's hard to be "difficult" when it's not in your nature but you need to keep looking out for your daughter's interests and doing whatever you need to do to get them to keep investigating.

Good luck 💐

This doesn't sound like mesenteric adonitis anymore op.

Has anyone mentioned chrons? It can start with lower right belly pain, bloody stools, exhaustion, etc.

Forgot to tag you @VirusSchmirus

Another day, a different doctor. Still in hospital, this one starts on the "we're not sure, perhaps anxiety" path, which I shut down. I'm getting beyond being polite about it too.

After a bit of backwards and forwards he agrees to ask the main doctor tomorrow (probably has better job title than that!) to do MRI.

I'm starting to put 2+2 together myself, which appreciate is dangerous:

Tricky baby, had almost acid like poo that we had to change within minutes
Lactose intolerance, eased as toddler, came back age 8
Got more and more sensitive to rich dairy

Perhaps this is alll linked?

I also asked about her blood work and was told her amylase is higher (about 140), and has been on the last 3 blood tests. Doctor never mentioned this before, said all good, perhaps one score a bit higher due to protein or something? He said that's not worryingly high but surely not normal? I feel like im being drip fed!

It's fine to start doing your own research, it's not more dangerous than neglect.

You'll need to ask them again what they think is causing the raised levels of amylase and ask them to explain properly what they're saying about protein. Ask them what the normal amylase range is for her age.

We are home ❤️ As a pp mentioned - this is NOT MESENTERIC ADENITIS!

We saw an amazing doctor this morning, what a difference that makes! She spent the best part of an hour talking to us (longest any medical person has), and more importantly really took the time and effort to get to know DD.

She’d looked at scans in detail and confirmed nothing worrying from them. The high amylase score will be reviewed against some more blood they took today but she’s not overly concerned (she said “scary” levels are in the 1000s, normal is 100, DD is 140). So that was reassuring although not totally ruled out until blood work back tomorrow to show any trends.

She was disappointed on a few things:
Medication being prescribed that would have affected the results of earlier poo samples (incorrectly showing a negative result)
Antibiotics (which we didn’t give) that would not have been suitable, and may have actually caused more stomach trouble
No specific blood test carried out to review health of upper bowel. She considered this a significant oversight
Amitripyline being prescribed

She has given us a stronger painkiller to be taken at night. Before doing mri and camera stuff she wants to fill in the gaps above, and see if she can calm the nerves in DDs tummy that might be permanently overreacting to something that isn’t there (if this is the remnants of the bug). She compared this to have your leg amputated, but you can still feel pain in your foot. May need to break the cycle.

More importantly she said what had been lacking was a plan. So that is now in place, so I felt happy being sent home.

So the plan:
Back tomorrow to review the night, discuss blood work, and if I can bribe DD, a poo sample
Review next week, mri not off the table but she’s hoping cutting the pain cycle might work

We’re hoping it’s not crohns as that was mentioned.

Oh I'm so glad for you both! Fingers crossed.

how are things with you now? Has your daughter progressed any more?

I'm glad there is some progress OP. Please do keep us posted. my DD had same thing at the same time and I posted upthread. In a really selfish way I'm glad too its not mesenteric adenitis as your experience had me worried about my DD too (who is absolutely fine by the way).

Hugs to your poor exhausted DD. I really hope this is resolved soon.

I'm having such a bad day today. New medication was working at night but last night was one of the worst, both up til 2am. Nothing was touching the pain and was borderline going to A&E - what stops me is knowing that there is little they can do, and she'll be feeling worse having to sit upright in a waiting room. Plus it will be back on the noisy ward, and she got so much worse in hospital (sleep deprivation and crap food, care from nurses was great).

We have a meeting with school tomorrow as she has missed so much. The doctor and school seem optimistic that she can go back on a phased return (which I could love, believe me) but right now, I can't see this working. I try and get her out during the day for fun stuff, and she struggles after 40 minutes. She has missed parties and events because she says it hurts too much. I thought we'd had a good afternoon at the weekend and then she said she's trying to cover it up to make me happy.

I see families getting on, having fun, doing stuff and we're just trapped in this pain cycle. I know this is reality and normal life for some, so guess I should not moan but I'm finding it harder as the weeks go on. Last night she was crying saying she couldn't do much more of this and that's just broken me today. She's 11 years old and was so happy before all of this. I really want my old boring life back.