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

Hopefully some positive action! Spoke to our local GP this morning (I haven't spoken to this particular lady before) and she was so helpful.

First of all she was really shocked to hear how long this has been going on without much support. She asked how DD was getting on at school and when I said she's not, she can't sit for long so spends most of the day laying curled up she was really surprised and disappointed that nothing more had been done.

She's referred us back to paediatrics, just waiting for an appointment which will be today or tomorrow. Of course they may check her over and send us back but as @geniap then we'll have to accept it and carry on.

hi there
I just came online to read more about this Mesentric adenitis again too, as I have been having all the same things go on with m y 10year old daughter, like you at my wits end, Ive been for a scan which showed nothing serious jumping out so the actual consultant didn't need to talk with me. I am waiting at the minute for a call from the Dr to discuss the results.

My daughter seemingly had tonalities again for 4th time this year around 26th August, completed antibiotics course but was so unwell sore tummy etc Ive been back and Forth Dr and hospital ever since.

She has also missed school and finds it so hard to sit up, just wants to lye down all the time. This last few days I can get her sit up bit longer as we are triton to do schoolwork but she just cry all the time. Such a worry health wise but also she is now crying worried about herself, Im so worried about school etc. She is very active enjoys school, dances so a lot of dancing and training so from that to being so unwell its just awful.

You poor daughter too, I cant find much info bar swollen glands goes away no lasting health issues, just such worry and the feeling of being helpless kills me!

My son gets mesenteric adenitis fairly often when he has a virus. He certainly wouldn't suffer on the scale of your DD, he will suffer for maybe two weeks and has been sent home from school with it before but definitely doesn't spend any length of time curled up or lethargic. He does wake at night with the pain though.

Oh yes I meant to add your DD sounds like how I felt when I had a large ovarian cyst + torsion. But i take it the scan has discounted that possibility?

You stopped her pain medication without having a new one prescribed? Did you discuss it with her doctor? It may be that the benefits outweigh any risk. I realize you have serious concerns, but it can't be good for her to be in this much pain. Especially for 5 weeks.
Please call today.

Sorry, I cross-posted. I'm glad you're in contact with someone.

Oh OP your poor little one. I remember the thread as I had just come home from hospital with my 10 yr old for the same thing. Horrendous 48 hours and then subsided quickly. She was incredibly weak and exhausted for days and spent a week off school but mostly pain free. Back to normal by about day 9 and perfect since. I'm so sorry this is still going on, sorry no medical advice for you. Keep pushing. Hugs to your girl.

Hope you've heard from paediatrics now?

Mesenteric Adenitis: A Parent's View - Rev. Francis Ritchie (francis-ritchie.com)

There are some helpful suggestions in the comments. Hope your DD feels better soon.

Thank you for the check ins and the links, so very much appreciated.

Now rolling into week 5. No improvement on the pain, night time is particularly bad (a few occasions where I've thought "sod it, lets go to A&E" but knowing how we'd have to wait and she'd be so uncomfortable puts me off).

She's eating although losing a bit of appetite now. Drinking/peeing and pooing all good.

The kind GP I spoke to on Monday made a referral to Paediatrics. I chased this Tuesday afternoon as she said they'd call. They told me the GP had asked for advice so no referral. Called GP and she said no, that was not the case - there are 2 classifications for referrals "emergency/same day" (which this isn't" and "advisory" which means review and take action. Her notes under "advisory" said DD needed to be seen ASAP as she was unhappy with the continuing situation.

So I call the hospital today, and Paediatrics say that they reviewed her notes and marked it as not urgent (probably because she's eating etc). And we'll get an appointment but it will be at least 19 WEEKS.

So her condition:
Pain stops her sitting for longer than 15 minutes, walking difficult
Spends most of day in bed (school been fantastic and supporting her, giving work etc for when she's OK and pain is bearable)
Temperature up and down
Tongue is green on some days
Night time is horrendous, constant wakings
Non-stop painkillers - she is asking for the next dose 2 hours later

But not urgent. We can use private BUT so far that hasn't worked well. I agree with our "kind GP" who thinks more tests are needed as the mindset has been mesenteric from the start, and potentially other things could be at play.

Bloods clear. Stool sample clear. 2 ultrasounds clear (other than (I think they said 1) slightly swollen lymph node)

How quickly could you see someone privately?

@lantalanta let me know how you get on, and if I hear anything useful I'll let you know!

Private - probably a week away.
Hoping the kind gp (as she has been nicknamed) will push some buttons on Friday when she's back.

Her view - as is mine - is that really more support needs to be given to these cases that last this long. Expectations of recovery, check ups (even if virtually), what to watch out for. There just isn't anything and I think it's shocking to leave these children in so much pain, along with the impact on their mental health and education.

It's absolutely awful. I'm glad at least you can afford to pay for private, hopefully they'll help.

Luckily we get the private option through work, but it shouldn't be like that.

Fingers crossed we have a better night tonight, last night was dreadful.

Hello my DS had this from Nov to Jan. Only really back to full power from the Feb.
All the same experiences as you, even had exploratory surgery when admitted for suspected appendicitis which showed huge inflammation of the lymph nodes.
He was absolutely wiped out most days. Seemed to improve a bit later in the day. Low low energy. Lots of pain.
I thought something had been missed. Or it was his mental health.
Then, gradually, he got better. He had a couple of short flare ups in the following months but recovered much quicker.
If the Drs can't find anything else and your DC has a node enlarged then that's what's flooring her. It's a mysterious one, it seems.
💐for you and DD.

amitriptyline has more uses than just as an anti depressant. It’s used widely for nerve pain and has also been used in children who bed wet. Whilst your concerns are valid usually the DR will prescribe something that’s age appropriate. Have you discussed your concerns with the Dr that prescribed them?

If you get private treatment through work then Im slightly at a loss as to why you havent gone straight to that option? Particularly bearing in mind that your GP has prescribed something but you havent given it?

Hi OP.. think I commented on your last post. Pour DD and poor you, it's horrible seeing them so low.
My DS has MA and was bad with it for a good 2-3 weeks and off school with no improvement until he gradually felt better . Although I don't think as bad as your DD by the sounds of it . Paracetamol / ibuprofen didn't touch his pain though.. hot water bottles seemed to help the most .
I really hope she feels much better soon. X

@VirusSchmirus
Yes I will do, ive been reading over all these posts etc, my exp is the same. Ive been so worried about the mental health too, I would all go private to talk with someone just not sure which specialist. I was hoping to hear the ultra sound results first then do that if required.
I hope yous have a better night tonight. x

Do the doctors understand at all why some children get it for such a long time and others have a normal course which seems to be more like a few days?

All the drs were surprised by the length and severity. I guess there will always be outliers....

Morning all! Only one wake up last night for pain relief, although took until 10.30pm to get her to sleep which is very late for her.

Private and why didn't I go sooner. I consulted a private GP in week 2. If the condition is undiagnosed then usually you are expected to use your standard GP first, and then move to private. The initial care given was good, it was the mismatch between what we were told after they ruled out appendicitis:

Would go after a few days
Not much they could do with the pain
Keep her comfortable

Note at that point we weren't given the term MA, just swollen glands.
That led me to consult a private GP.

Onto the medication. Initially our private GP prescribed the following:

x3 sachets of fybogel
Lansoprazole (taken with ibuprofen)
Paracetamol

Not surprisingly she got violent diarrhoea from the fybogel so stopped that (thinking about it, if I have one sachet that's shall we say "very effective")

On a later visit he prescribed antibiotics and amitriptyline. This is when I started questioning what the plan was. Her blood tests were clear of inflammation and infection, as was her stool sample. I bounced this off another GP who said antibiotics would not do anything useful, and might actually cause more stomach issues (particularly as she already has intolerances, so this is her weak spot). AND - for those thinking private is a great option - they cost £74 on private prescription (although if she needed them, we'd get them obviously).

The amitriptyline. Made more nervous by the fybogel experience and recommendation to take antibiotics, I read the leaflet and did some research. It was starting to feel more like desperation, throwing drugs at it rather than looking more closely into other factors. You are correct, it can be used for nerve pain, ADHD and other conditions but it does affect the brain and has significant side effects (especially when you stop taking it). I am not willing to use something that is not tested for long term safety on children on my child.

Mr daughter also came out in several spots on the right hand side of her torso which were itchy, sent to Dr, they thought possibly shingles so left a script to treat this 1 x 4 times a day x 5 days. I wasn't convinced so worried about giving the medicine however over a few days I gave a half a tablet a few times, these made her weak dizzy and feeling even worse totally ruined the little appetite she had. I went for check up a few days later and thankfully I didnt insist on giving her the medicine as turns out it wasn't shingles.

She has also complained about feeling itchy quite often, especially her armpits. Dr then prescribed buscopan so we tried that again she complained of feeling weak and heavy so I crush up a quarter of the tablet into a drink but notices and doesn't seem agree with her either. Like you I worry about giving all sorts of meds when nothing really seems to change how she feels for the better.

Hoping the hospital will call me today as no word yesterday.

I would get a referral to a private paediatrician asap and go from there - private GP should be able to sort that v quickly. Private consultant should be able to see her on an urgent basis and order any more tests which might be necessary or refer to another specialist. Absolutely no way would I wait for the NHS in this scenario if I had private healthcare.