Mesenteric Lymphadenitis, aka How To Make Parents Insane In One Day

Mesenteric Lymphadenitis aka How to Make Parents Insane In One Day cradlerockingmama.com

Weekend before last, Jed came down with a mild form of the stomach bug that has been working its way through the GI system of America this month. Because I knew about the bug, I didn’t go to the doctor (or even call the doctor) when he turned up with symptoms; we just made sure he drank plenty of water and kept an eye on him.

He was really fine! He did have bad diarrhea, but he drank, ate, and behaved perfectly normal. So we didn’t worry too much.

Thursday morning, however, Jed woke up and refused to eat breakfast. I attributed that to the fact that it was the Overnight Crockpot Oatmeal Breakfast Bake, a new dish, and maybe he didn’t actually like it very much.

However, he didn’t (as he usually does when he doesn’t like what I’m serving) ask for anything different for breakfast.

About an hour after breakfast, I went into the living room to see that Jed had laid down on the couch and pulled the blanket over himself. Tucked in so nicely, he was laying perfectly still, watching TV.

Y’all, that’s not normal for Jed. He does NOT sit still, let alone lay down during the day!

I checked on him, and he felt warm. A quick temperature check verified: 102.2 degrees.

Uh-oh.

When I asked him where he had an owie, he said “in mine tummy”. That’s what he’s been saying all week, though, so I couldn’t really extrapolate much more from his claims. Yes, his tummy has hurt all week and he has told me so; why does that suddenly mean a fever and lethargy/malaise?

Sick Kiddo on Couch cradlerockingmama

Both kids passed out on the couch – Jed because he’s sick, Zac because it is naptime.

I called his doctor, but had to leave a message.

(Oh, and break-your-heart here…Jed asked  me to call the doctor. After I did, I told him “OK, sweetie, I called the doctor. Now we just have to wait for her to call us back.” and he hugged my neck and moaned “Thank you!” Aw!)

Shortly after the doctor call, Jed suddenly asked for food! He wanted hot dogs (which are actually link sausages but he calls them hot dogs), so Darrel cooked up some hot dogs for him.

Normally Jed will eat 6-8 hot dogs in one sitting. He couldn’t even finish eating one on Thursday afternoon.

He also didn’t want to drink, and when he was ready to eat, he didn’t want to walk to the dining room. He asked us to pick him up and carry him from the couch to the dining room table chair.

Finally the nurse called back. At first, she was sort of “let’s just observe him for 24 hours and if he’s not better then he ought to be seen” but when I clarified that he’d already had the stomach bug for 6 days and the fever was a sudden addition, she audibly tensed up and said “How’s 3:30? Can you be here then?”

Uh-oh. Sure thing, ma’am.

So we loaded up the car and headed to the doctor.

In case I haven’t mentioned it lately, I LOVE our doctor. Actually, we now see a Nurse Practitioner at our pediatrician’s office. I *do* really like our actual doctor, but having spent so much time this last year seeing our NP, I must say, I just love her! (This is a nice change, since normally “I Hate Doctors” is sort of my motto.)

When we got to the office, the receptionist, nurse and NP all took one look at Jed and said “Oh, yeah, he’s very sick”- it was that  apparent that something was wrong with him. After a fairly quick head-to-toe exam (after, of course, the verbal “tell me what’s going on” interview), our NP said she really wanted him to be taken for a CT scan.

It looked to her like appendicitis.

Say what? I thought appendicitis was something older kids and adults got? I’ve never heard of a 3 year old having appendicitis!

That’s right, the NP said. It’s really rare for children as young as Jed to have appendicitis, but that’s what his symptoms and physical exam indicate he has. The CT will rule it out or confirm it.

Code phrase there? REALLY RARE. If it’s “really rare”, odds are, that answers the question of what my kids have.

My boys are skilled, folks! We don’t get common colds here…we get appendicitis! (laugh with me, so I don’t cry, okay?)

She also wanted us to get some acetaminophen for Jed to take to help with the fever and pain. So we had to get that compounded. A quick stop by the compounding pharmacy (well, not terribly quick, it took an hour) and we had safe acetaminophen and were on our way to the hospital.

Checking in at the hospital. Darrel was cancelling weekend plans while we waited.

Checking in at the hospital. Darrel was cancelling weekend plans while we waited.

I have to say, the hospital actually moved pretty fast on things…but it just seems like everything in a hospital takes forever. We were there, checking in at 5:45 p.m. The blood work our NP had requested was drawn at 6:30 p.m. We were taken back by the CT people at 7:00 p.m.

Now, those of you who have had a CT scan before will already know what happens during this process. Those of you, like me, who have never previously had the pleasure, here’s a little education.

In order to get a CT scan, they have you drink a barium drink that creates “contrast” in your body for the scan to pick up on. You have to drink this nastiness over about a 2 hour period so it has time to work through your system.

Before we even begin, I’m sitting there going “Um, what’s in that drink? He can’t have dairy, egg, soy or fructose.”

To their credit, the techs were very good about bringing me every single option they had available for him to drink so I could read the ingredients. In the end, every single option they had was no good for him. If we wanted him diagnosed properly, we were going to have to fructose our son.

So we picked the one that had a fructose ingredient listed as the last ingredient on the ingredient list rather than one of the first ingredients and hoped that would be okay.

(I had asked on the FructMal boards about this when we first heard about the drink; after we were done with Jed’s CT scan I saw more people chime in saying that the doctor could do an ultrasound to diagnose appendicitis, but the information came too late to help us that night.)

As Jed began drinking his icky drink, I started thinking…ok. IF this comes back with evidence of appendicitis, they’re going to basically send him off to surgery right away, right? Which means at least an overnight stay in the hospital, right? And I haven’t eaten since lunch time, nor has Zac or Darrel, and we can’t just go down to the nearest Taco Bell and grab some grub.

If I’m going to go home and get supplies, I need to do it, like, NOW. While he’s drinking this drink.

So Zac and I haul-heinie from the hospital back home, while Darrel stays at the hospital with Jed.

We get home, I race through the house like a madwoman throwing random “I think we might need that” stuff into my suitcase, I grab some food from the fridge and load up my work cooler with food for me and Zac, and as I’m ready to get back in the car and leave, Zac starts losing his freaking mind!

I check the clock and – dang – he’s ready to nurse. It’s a 40 minute drive back to the hospital, at bedtime, and he’s ready to eat NOW. UGH!

So I sat down to nurse him, staring anxiously at the clock and sending text messages to Darrel all the while, until he finally finished and we could go. We hauled-heinie back to the hospital, but we missed being there for the actual CT scan. Instead, we got to wait with him until the scan had been read.

By this time, my parents and Aunt had gotten to the hospital. So our little waiting room was very cramped. I held Jed while Darrel ate, and the family kept an eye on Zac as he toddled around, far too wide awake for over two hours after bedtime!

Sick Jed wanted to be wrapped up in Daddy's coat because he was "so cold" otherwise.

Sick Jed wanted to be wrapped up in Daddy’s coat because he was “so cold” otherwise.

Zac grinning at the baby in the mirror. Note the gigantic "mom purse" in the chair. Ugh.

Zac grinning at the baby in the mirror. Note the gigantic “mom purse” in the chair. Ugh.

Finally I got a phone call from our NP. They had read the CT scan, and Jed DID NOT have appendicitis.

As she tells me this, I’m looking down at my son; my 100-miles-a-minute, rambunctious, charming son, who has been laying as still as possible, running a fever, barely moving or talking all day and is quite possibly the sickest kid I’ve ever seen in my life, and I just can’t believe what she’s saying.

Instead, he has something called Mesenteric Lymphadenitis. The lymph nodes around his stomach are swollen and inflamed (technically, it’s the lymph nodes where his intestines attach to his bowels) from an infection.

When Mesenteric Lymphadenitis actually causes symptoms, most of the time it mimics appendicitis. But it doesn’t require surgery; in fact, it usually will just go away on its’ own over time.

She wanted us to take antibiotics, however, because while the infection that caused it could be either viral or bacterial, if we waited long enough to rule out a virus and he actually had a bacterial infection, that would be long enough for the bacteria to create a septic infection in his little body (which could be deadly).

So we were told to go on home, give him acetaminophen, antibiotics, and warm compresses on his tummy, and hopefully by Monday he’d be mostly back to normal.

I felt like I had a case of whiplash! To go from thinking my son had appendicitis and was headed for emergency surgery to “go home and he’ll be fine” was a little hard to wrap my brain around!

Worse, though, the car ride home he just seemed SO sick, and getting him ready for bed he cried and cried in pain…but the next morning?

HE. WAS. FINE.

It was like the previous day had never happened!

He had an appetite, drank a ton of milk, was chipper and smiling and bouncing and playing and giggling and HEY – WHERE ARE THE CAMERAS? ‘CAUSE I KNOW I’M BEING PUNKED RIGHT NOW!

Seriously, y’all. I didn’t think a human being could go from being perfectly normal to “looks like I’m gonna die” to perfectly normal again that quickly!

Un.Be.Lievable.

The worst part of Friday was the residual fructose problems; he had a horrible poop and was mildly belligerent and argumentative all day long. Otherwise, Jed was just fine.

Darrel and I are exhausted and a little shell-shocked.

Zac is still Mr. Happy, completely oblivious to the drama that unfolded around him.

Why do all the weird things happen to us? 

One little perk of FPIES, though: thanks to all my medical research for FPIES, I’ve been able to say the words “Mesenteric Lymphadenitis” without getting my tongue or brain twisted into knots since the NP first spelled it out for me. Prior to Zac, medical-speak made my head want to explode. Now, I’ve been schooled.

So…how was YOUR weekend?

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13 Responses to Mesenteric Lymphadenitis, aka How To Make Parents Insane In One Day

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  2. Sarah stute says:

    My daughter has been to the ER 3 times this week! After a CT scan yesterday we found out she has mesenteric adentitis. She has been sick for over a week now…hopefully this clears up as quickly as it started. I loved your story

  3. Sarah says:

    Hi Carrie, sorry to hear your son when through this, I just got out of hospital after being there for 3 days with mesenteric lymphadenitis as an adult!!

    I had EXACTLY the symptoms you’ve described in your son, unbearable pain, unable to move and they thought it was appendicitis too. I had to do a CT scan and drink that horrible drink blergh. Weirdly like you described I just got better!! They were really confused because I was really sick and then I was completely better (although it took a bit longer I guess because I’m an adult).

    I’m glad you wrote the blog as I’ve been looking online to find out more information about what happened to me. Apparently it’s rare as an adult – lucky me. Thanks Sarah

    • Carrie says:

      Oh, Sarah…I’m so sorry you went through this! I remember what Jed looked and acted like that day – the pain had to have been wretched. Poor you. 🙁

      I’m glad this was able to help you in some way. I think right now you probably know as much (or maybe even more) about mesenteric lymphadenitis as we do…there really isn’t too much out there about it! At least it seems like a random, weird event, and not a sign of chronic problems. So hopefully both you and Jed will never have to go through this again!

      So glad you’re feeling better!

  4. belinda says:

    im a Mother of two boys, 17 and 21 t this time, My 17 year old went through this, we spent two nights in the hospital for this. we had the same experience last year as well., except this year he has a slight difference in the appendix , Sean had three iv bags of the strongest antibiotic you can get and sent home. just a foot note, he also had bad poops the next day, makes sence though, because the M A is attatched to your intestines. they are not well, so….. you get side effects. he is back to football. prays god. I wish I could say this stuff ends ladies, but as you see, it goes on and on. good luck to you.

    • Carrie says:

      Hi Belinda! Ugh! I’m so sorry you’ve gone through this multiple times. That was a very scary day for us! Thanks for the heads up that it might just pop up again. Best of luck to you and your sons, too.

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  7. Kimberly says:

    I’m 21 right now and I have MA, so far it has lasted over 2 weeks and I have been to the ER twice already, hopeful it goes away soon.

    • Carrie says:

      Oh, dear, Kimberly. That’s so horrible. I can’t imagine the pain you’ve been in. Has it gone away yet? (I’m sorry I missed this earlier; we’ve been sick and/or injured for the last month and I dropped the blogging ball.) What does the ER do for you?

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