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.Jerry.

Mesenteric Adeninitis - another update...

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smilinggirl

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?

 

You can also query with the hospital abdominal migraines. Not very common but my 8 year old has had them for years. She has now progressed to proper head migraines which is so sad to see in a young child.

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born.a.girl

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".

 

 

I remember your time with your son - it sounded so awful.

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FeralZombieMum

My son had it on and off over a few years. He missed about 5 weeks of school at one stage.

 

He was also constipated, which made it worse - can't remember what the doctor prescribed for that.

 

We used buscopan a few times, which seemed to help.

 

I also gave him a magnesium and calcium supplement about an hour before he went to bed, did this for 2 of his attacks, and his pain stopped about a week later.

 

Lying down (at night) it was much worse.

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.Jerry.

Update July.

We have seen a Gastroenterologist now.

He says the Mesenteric Adeninitis finding is common and many people would have enlarged lymph nodes if scanned thoroughly.  He said it was an incidental finding, but not one that explains the pain DD is still in.

Doing tests for a variety of conditions including Coeliac, IBS.  Wide range of blood tests and sample tests.

Will consider an MRI if needed.

Said could be "functional abdominal pain" which I guess means they believe DD but don't have an answer.

However he was very intrigued by my suggestion of adhesions.  DD had hernia surgery as a baby and the pain is localised to that area.  I also consider that could be adhesions from endometriosis, as DD has had heavy periods.  

Gastro is going to talk to the surgeon that did the hernia surgery to see if it is possible adhesions could have developed from the neonatal surgery.

Gastro also asked us to try BUscopan to see if it relieved pain at all, though it just made DD nauseous.  

Was most interesting to hear him dismiss the Mesenteric Adenines as a cause of chronic pain.

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Paddlepop

Sounds promising that he's happy to keep looking for the actual cause of her pain.

OT, but he didn't happen to be an American at the Mater by any chance? DH saw one there a few months ago and he was a breath of fresh air compared to other specialists.  

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Tinky Winky Woo

My child has had 'flare' ups over the past 4 years.  During the 1st flare up it lasted for over a year, now it comes and goes.  Drinking a lot of water, low acidic foods are best.  Flare ups tend to occur with treat foods like slushies, high coloured foods, high artificial flavoured foods.

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PrincessPeach

That sounds quite promising, glad to hear they are taking it seriously - it’s no fun watching your kid in pain.

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.Jerry.

More progress...

Saw surgeon last week.  He then said he'd review all her scans and tests over last few years.

He rang today and said will do a  laparoscopy to have a look around for cause of pain.  Said one scan definitely showed an enlarged appendix (where we started years ago).  Said will likely take out appendix no matter what and have a look around.  Said Gastroenterologist will also ring me because he will likely want to go and do a look from his end ;) as well.  I imagine that means perhaps a colonoscopy / endoscopy as well.  Surgeon said while she is under, may as well do a thorough look around.

So some progress!

DD has had a couple of very bad times of pain in last few weeks - curled up on bed, nothing much relieves it. :(  Be glad to know what is going on.

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.Jerry.
On 7/7/2020 at 8:54 PM, Paddlepop said:

Sounds promising that he's happy to keep looking for the actual cause of her pain.

OT, but he didn't happen to be an American at the Mater by any chance? DH saw one there a few months ago and he was a breath of fresh air compared to other specialists.  

Wasn't at Mater, but a far, far northside Gastro (Paed one).

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.Jerry.

Surgery booked for mid next week.  Laparoscopic exploratory surgery with likely appendix removal, just to be safe.
DD is feeling much happier, with hope that there is an explanation for her pain.

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Isolated Old Elf

I hope you and your dd get your answers Jerry. 

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JRA
1 hour ago, .Jerry. said:

Surgery booked for mid next week.  Laparoscopic exploratory surgery with likely appendix removal, just to be safe.
DD is feeling much happier, with hope that there is an explanation for her pain.

Good luck, it is a terrible thing she is going through.

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PrincessPeach

Best of luck! But so glad her pain is being taken so seriously.

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MooGuru

Good luck. Fingers crossed for answers

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ytt

Good luck, we shouldn't have to fight so hard for answers :(

My DD just had another endoscopy and colonoscopy today due to some severe pain, vomiting and bowel issues after being diagnosed coeliac via scope not even 12 weeks ago. Her gastro was so on the ball and said her symptoms should be getting better, not worse on a strict gluten free diet and got us in for another scope. We are hoping this doesn't turn into another autoimmune disease :( her inflammation markers in bloods are high.

DD has had so so so many scans and tests for abdominal pain. Coeliac answers some but not her terrible period issues :(  Severe mental health issues seems to have triggered coeliac disease as she has never had issues before she had mental health issues :(

 

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FeralZombieMum
On 07/09/2020 at 8:39 PM, ytt said:

 

DD has had so so so many scans and tests for abdominal pain. Coeliac answers some but not her terrible period issues :( 

My coeliac DD had to go onto the pill to help with her extreme pain. The GP said that having an autoimmune disease could be linked to it.

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.Jerry.

I am concerned there could be some type of autoimmune disease at play...  Though her inflammatory markers in blood tests weren't out of kilter.

This week she's also had kidney/flank pain and pain up under her ribs.   Continuing sharp pain on and off in the spot where this all started as well.

Am a bit concerned as we are just down (on the paperwork) for laparoscopy (day surgery).  Surgeon had initially said would take out appendix "just in case" too.  That's not mentioned on paperwork.  Hope we get to talk to him before surgery.  Passing messages on through front desk is pretty slow and useless.

I imagine if he does end up taking appendix too that she will have to stay overnight surely.  Surgery is after lunch.

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little lion

Good luck. Make sure the appendectomy is written on the consent form if you’d like that done. 

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ytt
1 hour ago, FeralZombieMum said:

My coeliac DD had to go onto the pill to help with her extreme pain. The GP said that having an autoimmune disease could be linked to it.

My DD is on the pill already :( if she misses taking it by even an hour the next day she is in pain and has a full period.

I also have a bleeding disorder (diagnosed late in life), DD has all the symptoms but blood test came up negative but my understanding is that there needs to be a few test to rule out negative. Plus on the blood test results I collected after the phone consultation with GP who said blood test was normal it says possibility of an aspirin like defect due to times of clotting or some such thing.... so not a 100% negative. I'm taking her results to my haematologist at my next appointment later this month.

 

Jerry good luck xxx so hard fighting all the time. My DD's white blood cell and CRP markers are elevated and increasing at each test. Initially the gastro said it may be crohns or colitis or non reactive coeliac. DD's bowel looked good on scope but biopsies were taken (results in a week) so we are looking more at an inflamed stomach (as seen in scope) causing the high markers - we hope. My DH's family is full of all different autoimmune diseases - his nephew died catching chicken pox as he had primary immune disease and his mum (DH's sister) died in her early 40's with Lupus :(  most of his sisters and quite a few nephews and nieces have some sort of immune illness - DH seems to be the healthiest....

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Not Escapin Xmas
12 hours ago, .Jerry. said:

I am concerned there could be some type of autoimmune disease at play...  Though her inflammatory markers in blood tests weren't out of kilter.

This week she's also had kidney/flank pain and pain up under her ribs.   Continuing sharp pain on and off in the spot where this all started as well.

Am a bit concerned as we are just down (on the paperwork) for laparoscopy (day surgery).  Surgeon had initially said would take out appendix "just in case" too.  That's not mentioned on paperwork.  Hope we get to talk to him before surgery.  Passing messages on through front desk is pretty slow and useless.

I imagine if he does end up taking appendix too that she will have to stay overnight surely.  Surgery is after lunch.

I get the side/flank pain and up under ribs. I have eosinophilic esophagitis & severe food intolerances. As long as I keep to the strict diet I don’t have those pains (although the pain was severe during the initial detox period).

Regardless, good luck for the op! And definitely get the appendix removal listed on the sheet (however you do that!).

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Soontobegran
12 hours ago, .Jerry. said:

I am concerned there could be some type of autoimmune disease at play...  Though her inflammatory markers in blood tests weren't out of kilter.

This week she's also had kidney/flank pain and pain up under her ribs.   Continuing sharp pain on and off in the spot where this all started as well.

Am a bit concerned as we are just down (on the paperwork) for laparoscopy (day surgery).  Surgeon had initially said would take out appendix "just in case" too.  That's not mentioned on paperwork.  Hope we get to talk to him before surgery.  Passing messages on through front desk is pretty slow and useless.

I imagine if he does end up taking appendix too that she will have to stay overnight surely.  Surgery is after lunch.

Jerry if the appendix is healthy meaning there is no sign of infection etc then it's removal is generally uncomplicated so it should not delay discharge but it will depend on what they find and how well she recovers from the post op pain. They would keep her in if she is not ready for home even if it says day surgery on admission forms. It will also depend on what case number she is. If she doesn't get to theatre until late afternoon she is more likely to need to stay.

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.Jerry.

Good news - nothing found in laparoscopy. Bad news - nothing found in laparoscopy. 
 

 

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FeralZombieMum
On 11/09/2020 at 6:49 PM, .Jerry. said:

I am concerned there could be some type of autoimmune disease at play...  Though her inflammatory markers in blood tests weren't out of kilter.

I wonder that about my DS - who has had multiple episodes of mesenteric adenitis.

It could be gastritis.

Is she on any medication for reflux?

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Paddlepop

How frustrating Jerry. What now? 

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Soontobegran

I am not sure whether this has been mentioned or not so apologies if I am repeating something but have abdominal migraines ever been addressed?

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