DS back in hospital (ileum thickening/enlarged appendix)

[kernelmom3]

DS (17yo) woke me up at 2AM asking for Zofran for his vomiting. He threw up twice and seemed to be better after taking the Zofran. Around 5AM I checked on him and he was having body aches and he felt very hot. I gave him some Tylenol and we were off to the ER. They started him on IV fluids and did some labs. His sed rate was good (8) but his white blood count is high (17.2) so they decided to do a CT scan. CT showed ileum thickening and a slightly enlarged appendix (normal is 6mm his is 8mm). We're in an ambulance now being transferred to the hospital his ped GI is at/where he gets his Remicade infusions. This has me so confused! He's been on Remicade since he was diagnosed in August 2014 and is still on 5 mg. Last Remicade level was great and showed no antibodies. I have no idea what they're going to do for treatment other than keep an eye on him overnight for sure. I don't want another colonoscopy yet...after they perforated him last time it scares me to death. I don't want him to have to stay but I know I won't feel comfortable/safe taking him home of they release him tomorrow. Any suggestions on what I should ask/say to his GI? He's done MRE's before and while he tolerates them, it's difficult for him to drink all the prep (especially when he's nauseous)! Thanks for any suggestions!

 

[Maya142]

Honestly, your GI needs to decide. They may want to do an MRE or scope. Scopes are pretty standard - I understand your hesitation after last time, but he has IBD and is going to need many scopes. Probably 1 every couple years and more when flaring. You have to be able to trust your GI with scopes, so if you're not comfortable with him, you might want to think about a second opinion.

My daughter recently had an MRE and taking Zofran helped her keep the contrast (barium) down. You could try that.

The good news is that he doesn't have antibodies and there is a lot of room to go up on his Remicade dose. Kids often just needed higher doses - my daughter needed 10 mg/kg every 5 weeks for her IBD.

Sending hugs!!

 

[pdx]

Hope your son's GI can figure out what's going on, and that you won't have to be in the hospital too long.

 

[my little penguin]

Agree
You have to trust your GI
If you don't then get a second opinion
But you need to trust a GI regardless

Scopes are required with Crohns period
MRE are also required
Ds is very allergic to the contrast has to be given iv steriods over 13 hours
Just so he can have the MRE without a life threatening reactions
Honestly I don't think you will find one kid who actual wants to drink the prep
Ds has a very hard time with it since his body does react low level to it
Causing rashes and flushing abdominal pain

It just has to get done

Have you had counseling with your son to help talk through what happened with the prior scope and perforation?
Since scopes are s necessary evil
Avoiding them can cause other serious situations


Just because remicade levels are ok doesn't not mean disease is under control

I hope your child GI can come up with a plan for tests that helps figure out the issue

Inpatient is very hard

 

[kernelmom3]

Thanks everyone! I think I phrased some things wrong so let me clarify a few
I know DS will need multiple scopes in his lifetime, and perforations won't happen every time but are a risk. I know it has to be done but his GI (and DD's GI in same practice) try to avoid scopes during active inflammation. As for MRE's, he CAN drink the prep but I was just worried that with him being nauseous he'd throw it right back up again and not sure how that works (restart drinking? try to measure and make up what came out?). I also know that a good Remicade level doesn't mean disease is under control. But add a good Remicade level, no antibodies, good labs and no Crohn's symptoms and I guess I thought it was which was why I was kind of thrown today. So far DS is feeling better. The surgeon came in and said DS appendix looks the same as his scan from 2-1/2 years ago. The thickening ileum looks better because in the scan from years ago it was SO thick you couldn't see the contrast flowing through but you can in today's scan. Surgeon suspects it may be baseline for him because of the Crohn's. They examined him and he was able to start back on clear liquids. His GI will come by tomorrow and hopefully discharge DS. He has his 6 month checkup in May and I suspect that's when the scope/MRE conversation will be had. If nothing else, this was a good slap in the face that one of those WILL be happening. Thanks again all!

 

[Maya142]

In terms of drinking barium for the scan, my daughter had a SBFT earlier this year (and then later an MRE). She threw up the barium for the SBFT. Once she felt a bit better, they gave her more barium to drink (since she had basically thrown up everything she'd drunk). The second time, she did not try to chug it and sipped it slowly, even though it tasted bad.

That time, she was able to keep enough down and they were able to do the test. They did let her do the test with the minimum amount of barium for a good scan, since it wasn't clear how much she'd keep down.

With the MRE, we were prepared for vomiting, so we gave her Zofran before and had her drink slowly (and we put half through her G-tube, but that only works if your kid has a tube!). But anyway, it worked.

(This is probably not relevant since you're inpatient, but if you do either test as an outpatient, take an extra set of clothes for your kid!!! You might be very thankful for it!)

It may be that your son has had some simmering inflammation that led to where you are today. Crohn's can be pretty sneaky - there have been kids who had no symptoms, but ended up needing surgery because of ongoing inflammation.

That is why scopes and MREs are so important.

I know it has to be done but his GI (and DD's GI in same practice) try to avoid scopes during active inflammation.

I understand the rationale for avoiding scopes when there's inflammation (less risk of perforation when there is less inflammation), but chances are, that's when he's going to need scopes. When my daughter had an FC come back high last year, her GI ordered scopes, because otherwise there was no way to know where the inflammation was and how bad things looked.

Scopes really can't be replaced with other tests.

So I guess I just want to say, be ready for scopes. Even when he's flaring - especially when he's flaring.

I hope he feels better tomorrow and your GI comes up with a plan.

 

[Tesscorm]

I hope he's feeling better today. The sneakiness of crohns is hard - all can seem well but, inside, inflammation is simmering. That thought (and fear) is what keeps me from becoming complacent. Hugs...

I don't recall, did your son ever use an NG tube? My son did take the contrast thru his NG tube in the past - helps to bypass the 'drinking'.

Hope he's going home today!

 

[kernelmom3]

Thanks again! I always know where to go to get great answers and ideas

Today his white count is down to 4 (from 17 so that's great)! His CRP is at 18 but they didn't do one at the ER yesterday so we're waiting for the ESR to come back and compare. He's on a general diet and we'll see how today goes but hopefully he's going home to follow up outpatient. In other news, I got my daughter and her friend (and me) tickets to see Ariana Grande for Christmas and the concert is tonight! So I'm doing my best to let go and hope my husband advocates for DS when I leave here in an hour. I'll have to remind myself to at least PRETEND to be worry free and dance like no ones watching

 

[pdx]

Sounds like he's doing well--glad to hear it. Have fun at the concert!

 

[Maya142]

Glad he is doing better!! Enjoy your evening!

 

[Tesscorm]

Yes, have fun!!! He'll be fine!!

 

[kimmidwife]

Help you had a good time and he is doing better!!!!