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.Jerry.

Mesenteric Adeninitis - another update...

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.Jerry.
Posted (edited)

After nearly two years of abdominal pain, DD has been diagnosed with Mesenteric Adeninitis.

 

It did start out with us being sent from the ultrasound place to the Emergency Room with potential appendicitis.

The pain has recurred constantly throughout the two years, with many doctors dismissing it as anxiety pain.

It does disable DD at times, preventing her from her activities.

 

Finally a CT scan has shown inflamed glands, including one at 17mm.

DD's pain is quite localised to the right lower quadrant. Everything else internally looks good.

 

Whilst DD is happy to finally have a diagnosis, she is devastated that there is no treatment.

Most sites say that Mesenteric adeninits only last days or weeks, not over a year!

 

Anyone have experience with this as a chronic condition?

Edited by .Jerry.
Updated title

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mandelbrot

Didn't JRA's son have a terrible run with this?

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BusbyWilkes

It’s way more common than you would think. My child had it at around 8 years old. Hers was acute presentation (also querying appendicitis). She was often sick with colds etc, which stated an inflammatory response, which flared the adenitis. We used high dose probiotics to help her gut health/immune system. Not sure if this helped, or if it was due to get better anyway, but she improved significantly around this time. It also made me feel better to be doing something!

 

My niece was also severely affected. Hers continued for about 12 months; missing school regularly etc. Her seemed to be triggered by bouts of tonsillitis. Once her tonsils were removed, no more adenitis.

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.Jerry.

Yes, I understand it is a common cause of "tummy pain" in kids.

 

We are just perplexed at how long it is lasting and how much it interferes with DD's life, compared to what the doctors and online info says.

 

I did think I remembered JRA's son perhaps having this or similar.

 

We will go back to doctor in a few weeks and take up his offer of referral to gastroenterologist, despite the fact that they will tell us the same thing. :(

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MooGuru
Posted (edited)

I know someone who was diagnosed with this who was later diagnosed with endometriosis. The mesentric adenitis disappeared when she had a... sorry I've forgotten the name ablation maybe? And started using birth control products.

 

Eta - if I understand correctly the chronic inflammation from the endo was triggering the MA

Edited by MooGuru

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BusbyWilkes

Yes, I understand it is a common cause of "tummy pain" in kids.

 

We are just perplexed at how long it is lasting and how much it interferes with DD's life, compared to what the doctors and online info says.

 

I did think I remembered JRA's son perhaps having this or similar.

 

We will go back to doctor in a few weeks and take up his offer of referral to gastroenterologist, despite the fact that they will tell us the same thing. :(

 

Does she get colds/ear infections/gastro/tonsillitis/allergies more than typical? Everyone I know who has had it had something like this reoccurring. This seemed to trigger the inflammatory response (which is what you initially want to fight the infection). But then the lymph nodes around the stomach join in the fun....adenitis.

 

The LifeSpace brand of probiotic (96 billion strength) has been great for us (and we are not a crunchy family generally). I used to get it sent from the US, but it’s now stocked in many pharmacies here. Referral to gastroenterologist is also a great idea (even if they do end up saying* the same thing).

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.Jerry.

She rarely gets sick otherwise - a few colds a year. Has had "gastro" about twice in her 14 years. Tonsils removed as a two year old (though not for infections - just blocking her breathing/swallowing).

 

Endometriosis is a real contender though. She got her periods early and they were bad. Have used the pill to control them for a few years now.

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Tough titties
Posted (edited)

DD gets reoccurring mesenteric adenitis. We too thought it was appendicidtis but that’s not the case.

 

DD has struggled with it for about 2 years now. She basically ends up in a fetal position. Panadol, nurofen, buscopan and heat/cold packs do very little to ease the pain. We just have to wait it out.

 

Her last reoccurrence was last week. I actually ended up buying some peppermints and within an hour she turned the corner. Not sure if it actually helped or if it was a coincidence.

Edited by Tough titties
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Acidulous Osprey

Peppermint is supposed to have an effect on smooth muscle so who knows?

 

Pm'ed you Jerry

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Soontobegran
Posted (edited)

My brother had this for years as a tween. He had his appendix out after being wrongly diagnosed for a couple of years.

He was treated conservatively when symptoms flared and he just seemed to grow out of it by the time her was about 14. He had paracetamol, heat packs and peppermint tea.

 

I wondered about this diagnosis when you first brought this up all that time ago.

 

Fingers crossed she will be just like my little brother ( except she will keep her appendix).

Edited by Soontobegran
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JRA

did you get my message?

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.Jerry.

did you get my message?

No...

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Behind Hazel Eyes
Posted (edited)

DDs lasted over 12 months, but did resolve eventually. Her gp said to give pain killers as needed, that she was fine to be on panadol at the maximum daily dose long term. I'd ask re treatment for pain. Also used heatpack and she had a heatpack and panadol available at school.

 

I did read a post on her it can be treated with steroids. But only after DDs resolved. So I never asked our GP about it. Our GP at the time said the treatment was just to treat pain and let it resolve on our own.

 

DD also has chronic constipation don't know if that played any role in it lasting so long. Maybe given how long it's been it might be worth asking your gp if this is an option.

Edited by SM3s Fight Song

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Questionable13

I suffered from mesenteric adenitis as a kid. I missed approximately 5-6 weeks of school straight! All Ive read is that it lasts a few days, but it definitely wasn't the case for me.

I had trouble eating and in turn lost a lot of weight and energy. One dr suggested it may have turned into chronic fatigue syndrome. It took me a long time to recover (I was 11 at the time) and lots of tests as they ruled out other illnesses like glandular fever, Ross river virus, appendicitis etc

I am obviously an adult now and I can't remember how painful it was, but I do know I went from a healthy, happy, active child to barely moving off the lounge some days, so it definitely affected me a lot. I feel for your poor kid!

 

Treatment for me ended up being paracetamol, multivitamins, rest and time.

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JRA

I have message you again, couldn't seem to reply, but have sent a new one. Let me know if you didn't get it.

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.Jerry.

Thanks everyone (and JRA for the message).

 

The doctor just told us to use ibuprofen on days that DD has to be particularly active. Advised her to use it before it gets bad, to hopefully prevent severe pain and inflammation.

 

Tonight we are trying a heat pack again, though in the past she claimed it didn't work. I think now that she has a name for her pain it does help a bit.

 

She was excited by the prospect of trying peppermint, until I told her peppermint chocolate didn't count! ;)

 

I think my game plan will be:

- Use heat and ibuprofen for pain

- try peppermint tea (or similar)

- boost her immune system with good food (and possibly zinc supplement)

- go back for referral to Gastroenterologist

- Consider going back to Gynaecologist (just in case there could be ends adding to internal inflammation).

- some psychological pain management strategies.

 

Also will allow her days off school if she needs them. I'm pretty tough on school attendance and "pushing through" the pain.

 

It is just so frustrating that the illness is considered "self-limiting", with no real treatment.

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Tinky Winky Woo

My youngest has had it on and off for around 5 years, lots of fluids, panadol and days off school in pain. It does become worse when they are highly anxious though.

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Acidulous Osprey

Good quality peppermint chocolate with actual peppermint oil does so count!

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Bandwagon

My son had suspected appendicitis at around 17-18.

 

The hospital operated, diagnosed him with mesenteric adenitis drained his swollen gland, and took out his appendix while they were in there.

 

He was in such terrible pain, I can’t imagine doctors expecting kids to carry on with a bit of paracetamol.

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PrincessPeach
Posted (edited)

My DS was diagnosed with this last year - GP prescibed him a 5 day course of redipred & it seemed to do the trick.

 

He was tested for a significant number of things as it all started with a cold that never resolved itself but it showed up on ultrasound. His was the ones up near his stomach, so everytime an attack would happen he would vomit.

 

The heat pack made the pain worse for my kid.

 

Giving nurofen/panadol was pointless her as he would just vomit it right back up.

Edited by PrincessPeach

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JRA

DS after his believe panadol had no affect on him. It took years before we could even get him to take it again as "it does nothing".

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PrincessPeach

DS after his believe panadol had no affect on him. It took years before we could even get him to take it again as "it does nothing".

 

Poor kid.

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FuzzyChocolateToes
Posted (edited)

I wonder if this is what my 8yo ds has? He gets bouts of abdominal pain and her curls up on the floor in the foetal position. He actually had one today. He doesn't have pain every day though. Do others find it comes and goes?

Edited by FuzzyChocolateToes

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PrincessPeach

I wonder if this is what my 8yo ds has? He gets bouts of abdominal pain and her curls up on the floor in the foetal position. He actually had one today. He doesn't have pain every day though.

 

It came on very randomly for my kid. But he was in agony. The ultrasound tech did tell me I should have taken him to emergency, the symptoms are very similar to a grumbling appendix.

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Lees75

DS had it on and off for close to 2 years in upper primary school. Any time he had a cold or a virus, it would flare up. And sometimes he would have a random flare up. If his bowels were regular, it helped, so he used to take kids movicol.

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