Routine Scopes & MRE's

[Mehita]

DS is due for scopes and an MRE next summer. I know it's a ways off, but I'm already dreading it! Just curious what your thoughts are... do you scope and scan if your child is doing well even if it's been a while?

DS's last MRE was October 2012 and scopes were May 2013. His disease has primarily been in the small intestine, so the MRE has been more helpful than anything. He's been on Remicade since November of 2013 and in pretty solid and stable remission since starting Remicade with good labs. Historically, CRP has been a good indicator of his disease.

You might recall, MRE's are a nightmare for him. Very traumatic and he always looks like he should be admitted versus being sent home after it's done. He doesn't mind doing scopes. They're easy compared to the MRE.

Last spring, when his GI wanted to do an MRE and scopes last summer, I reminded him about DS's Child Life folder. He skimmed through it to refresh his memory and then said we can wait a year. I'm embarrassed to say he has a pretty extensive and ugly Child Life file.

My questions are:

- do you scope/scan even when your child is stable and in remission? Or do you wait for the need?
- could he do a pill cam with his anastomosis?
- can he be given Versad or something for anxiety, mostly for the NG tube part because he's never been able to drink enough, and still have a successful MRE? He's has Versad once, prior to getting his PICC line in, and got pretty loopy and happy. A little too loopy.

DS has an appointment coming up and I want to have a plan (or argument) ready. What do you think?

 

[my little penguin]

He is a lot older than his last scopes/mre
AND
You have plenty of time to deal with his anxiety with cognitive behavioral therapy with a good psych since whether he likes it or not
These are things that have to happen on a regular basis
Typically 1-2 years to be on the look out for furthering disease and to put it bluntly cancer screening .
Ds has had the disease for 4 years and is scopes yearly even when doing well
Plus given your kiddo had surgery it's really important they look

Cbt can be extremely effective just takes time
Which he has .
Putting off screening tests is generally not a good idea .
Add in if you are that stressed over it then so will he be.
Are you talking to someone so you can reduce your stress ?
Sometimes we moms forget to take care of ourselves
Remember oxygen mask on yourself first.

My kiddo had a bad allergic reaction to two of his mre so those might be less often now since life threatening reactions are not something they want to do for routine
Radiology has a plan to reduce the risk some for Ds .

As far as versed your kiddo needs to be able to follow commands to do the mre
Breathe hold his breathe etc... So probably won't work

I think therapy would be his best bet starting now so ..,
Since it's not going away

 

[pdx]

I'm really interested in hearing people's answers to your questions, because E also had a terrible time with her MRE. Even sedated (with atavan), she was very freaked out, and just couldn't hold still enough for them to get good pictures. The whole horrible process didn't yield any useful information, and our GI ended up deciding to use just scopes to decide on treatment. Because of that, we didn't know how bad her small intestines really were, and that led to a lot of problems down the road.

When she ended up in the ER 8 weeks later, they did a CT scan (which was a lot easier on her) and finally saw what was going on. I wish we could just do a CT scan every time, but it's way too much radiation.

E didn't have that much trouble with the oral contrast for both the MRE and the CT scan--her trouble was more with the loud environment, having to hold still for so long, and the IV contrast part. She has sensory issues, and it was just too much for her. I don't think she could ever do it again without being much more heavily sedated. And I'm not sure that the pill cam is an option either, since she may have some strictures.

So I'm in a similar situation to you. And I suspect that E's child life file is similar to your son's. No need for embarrassment, though, especially not here! Some kids feel things more than others, and all our kids have to go through so much hard stuff that most kids don't.

 

[crohnsinct]

Yes! You scope and image whenever doc wants. Why? Because you can have a kid like O who looks fantastic. Scopes visually look pristine but biopsies show inflammation. You want to stAy ahead of the disease.

I agree with mlp. He is older now so you might be surprised. Plus he is also feeling better. I was surprised at how much easier things were post dx and in remission.

We are all anxious about something. Best to learn how to deal with it. It is great that you are thinking About this now. Gives you time to get psychologist on board and start some therapies so when the time comes he is ready to go.

Good luck!

 

[Maya142]

I also agree - both my daughters had a horrible times with MRI's and MRE's but now handle them quite well.

In terms of Versed (IV), they use it for NJ tube placements (with Fentanyl, which a pain med). M has been sedated with this particular combination 7 times this year so we have a lot of experience with it! Versed makes it so that M pretty out of it but can still follow commands. The Fentanyl takes care of pain and makes her sleepier.

Oral Versed is probably a better option. M had it once for a procedure and it made her calmer but she didn't really think it did much. BUT she wasn't stressed out for that particular procedure and didn't think she needed it so I'm not sure her view is accurate.

Ativan (orally) we've used several times for MRI's. M has had 8 in the last year so is pretty sick of them. She's not scared or bothered by the noise, but lying still in a certain position (for her hips for example) is very uncomfortable and painful. So her rheumatologist suggested Ativan and she goes straight to sleep. She doesn't have to follow commands for an MRI though, unlike an MRE, but then again, Ativan doesn't have to put you to sleep, it depends on the dose given.

We also have had a LOT of success with CBT and working with a psychologist. She has really helped M cope with all this and M has gotten better and better. This last week she was awake and dealt with many painful injections into her stomach, so they could make an incision to remove a suture near her tube. She was annoyed because it was painful but not distraught like I'd expected her to be. Finding a good psychologist to help them deal with all this makes a world of difference -- particularly since they're dealing with this for their whole lives.

Our GI does scopes every 2-3 years if the kiddo is doing well. MRE's as needed. We did a pillcam too, about two years ago but M does not have a stricture.

Some hospitals allow you to listen to music duRing MRI's. That helps. Others have movie goggles - M got to watch a movie during a jaw MRI and said it was the best MRI ever! If you're not already doing them at your children's hospital, that might make a difference. Since they know M (from all the tests) the radiologists let her take breaks to walk around. It's a pain and means the scan is longer but sometimes she gets really stiff and her joints hurt and just needs to move. They're very accommodating with kids, if you tell them beforehand, what you need.

Good luck!

 

[Maya142]

E didn't have that much trouble with the oral contrast for both the MRE and the CT scan--her trouble was more with the loud environment, having to hold still for so long, and the IV contrast part. She has sensory issues, and it was just too much for her. I don't think she could ever do it again without being much more heavily sedated.

pdx - did your daughter get noise canceling headphones for the scan?

And wanted to say - my daughter also probably has a huge Child Life file somewhere. Things have gotten much better as she has gotten older. Hang in there!

 

[pdx]

pdx - did your daughter get noise canceling headphones for the scan?

Nope, no noise-canceling headphones. That's good to know about!

 

[Maya142]

Most centers will give noise canceling headphones and some will even let you pick the music you want to listen too (others will have you bring your favorite music). We've actually never been to a hospital that hasn't given noise-canceling headphones, but I guess we've just been very lucky (and I think my girls have had MRI's at 6 or 7 different hospitals!).

 

[Catherine]

For Sarah her scope was just over two years ago. Our Gi doesn't like scope when in remission due to risk of flare.

But her Gi best guess is that she developed Crohn's as approxinately a 12 year old but was dx at 16 years. This means due to cancer guidelines our Gi uses she will need began cancer screen either at 22 or 26. This would mean a scope will be to be done least every three years depending what is found.

 

[Jmrogers4]

We were just this discussion at J's last appointment. GI wants MRE since we have small bowel involvement. Jack told him he doesn't want MRE because of barrium and asked him about pill cam. His GI told him we could but pill cam could miss something. We have about a year before next one, he likes to do every 3 years unless something calls for it to be done sooner.
His GI keeps talking about MRE with Jack, saying to him I know you don't like but it has given him the best picture of disease so far so he's working that teenage angle of making it seem like it's Jack's idea of what needs to be done.

 

[kimmidwife]

I think asking for Ativan is not a bad idea to help. I do think it is important to do the screening to make sure he is okay. Like others have said appearances can be deceiving.