MRE versus small bowel series

[jland25]

Hello-

My 12-year-old son was just diagnosed with Crohn's based on colonoscopy/pathology and now his gastro wants to do either a upper GI/small bowel series or MRE with contrast to see the extent of disease.

I'm so worried about radiation exposure for my young and very small son, especially as we have a history of cancer in my family. But he has autism and I don't know if he can put up with the MRE, including the IV.

Either one is going to be extremely difficult for him. Just drinking the glop necessary for both will require a herculean effort.

I would love some opinions on this. Am I overstating the radiation concern? Is the MRE manageable? I know I have to pick one as I need to get going with treatment (he's already on Pentasa and Entocort), but I also know he has a long road ahead and would like to minimize risk if I can.

Thank you to anyone who answers. This came out of nowhere for us and I'm walking around in a bit (or more) of a daze. The whole thing is surreal.

Jennifer :ybatty:

 

[Sascot]

Sorry I don't have any great advice. Just wanted to wish you well for whichever test your son ends up having

 

[CrohnsKidMom]

Welcome to the forum, jland25, but sorry to hear of your son's dx. My 9yo son was dx'd a yr ago. He had an MRE with contrast done. He was able to put some "Mio" water flavouring in the liquid he had to drink, which helped. The IV was uncomfortable for him, but I think it was more the thought of having it in there that bothered him most. You do have to stay quite still during the MRE and hold your breath at times. The machine is a bit loud, and they gave both me and my son ear protection. I imagine the procedure would be more upsetting for a child with autism, but talk it over with the dr. Perhaps there is something they could give him to keep him calm. As far as radiation, something is telling me it is much lower than X-rays and such, but I can't remember any details. Take care, I know the feeling of shock when you receive that unexpected diagnosis.

 

[Maya142]

Hi and welcome!
My daughter had the upper GI/small bowel series test. To be honest, at the time I was so worried about her diagnosis that I didn't even think about the radiation issue!
The test itself wasn't too bad. The barium she had to drink did not taste good but if you the test at a children's hospital, they often flavor it. I think they could place an NG tube if your son does not want to drink for either test (not entirely sure though, I'm sure someone more knowledgeable will chime in soon!). There was a bit of waiting around, but otherwise it's a pretty easy test.
Good luck!

 

[Mehita]

Someone correct me if I'm wrong, but MRE's do not have radiation, a benefit of an MRE over a CT scan.

A benefit of an MRE over scopes is that they can get pretty good imaging of the small intestine where scopes can't reach. I believe, in rare cases, they can put a child under anesthesia for an MRE...? Not ideal, but possible.

Might a pill cam be an option?

 

[DanceMom]

We were given the option of sedation for MRI/MRA....can't remember if we had that option with the MRE. Definitely something to ask about though.

 

[Jennifer]

I was going to ask about a pill cam as well. Is their GI really taking the autism into account? The small bowel follow through is easier and the radiation level is fairly low compared to a CT which is one of the better imaging tests out there (some argue even better than the MRE). An MRI is also an option and for me was easier to handle yet for a child with autism you may want something quick with minimal effort and those would be the CT scan and Pill cam.

CT scan machines can have the radiation adjusted. I was diagnosed when I was 9 years old (I'm 31 now) and I have no idea how many x-rays and CT scan I've had throughout my life. All I know is that I'm fairly healthy, blood work is great and I don't glow in the day time or at night (not that you thought that, I'm just trying to lighten the mood). Seriously talk over your concerns about the radiation with their doctor. Fact is there isn't any real evidence that CT scan radiation will cause tremendous damage over time because the test is so new. The benefits of having one may outweigh the risks of him suffering through a test he's not able to handle.

 

[my little penguin]

Also look for a children's hospital near you.
Our has movie googles for when kids have MRE
So they don't hear or see the noise just their favorite movie.
They will sedate the kids who are very little less than 4 or of the parent requests it for special needs .
A small Bowel follow through was done on DS prior to dx and it did not show the thickening in the TI that was caught on his MRE /CT.


Most can give silly juice (versed )prior to anthesia so the kiddo will not care of remember the procedure . The iv can be inserted while he is out and taken out when he wakes up some have them place it in an ankle so it's covered by blankets and the kiddo doesn't see it .

Good luck

 

[jland25]

Thank you all for responding. I feel like I've been hit with a two-by-four to the head, I'm so blindsided, so all help is appreciated.

As far as the MRE: I was told he couldn't be sedated because he had to drink the contrast right before the MRE and the anesthesiologist was not comfortable with that. Also, that he had to "cooperate"(hold his breath at certain times) so it wouldn't work. When he was in the hospital they went back and forth on this several times, which is one of the reasons I didn't have this additional testing done when he was an inpatient. And this was at a children's hospital.

 

[my little penguin]

then maybe a CT- much faster and less time to wiggle.
sure there's radiation but much much faster than a small bowel follow through which had something like 15-20 x-rays and took forever - i think 3-4 hours total.

 

[Patricia56]

I would not try a SBFT if he will have trouble cooperating. This procedure requires that he move around as they take Xrays of the contrast as it moves through the bowel.

Either way he will be asked to drink some kind of contrast whether it's CT, SBFT or MRE.

CT is high in radiation load and SBFT can be too depending on the number of pictures they have to take.

MRE at a children's hospital (if possible) would be my choice. I completely understand the anesthesiologist's concern. If they will give versed or ativan orally prior to placing an IV this may work OK. I would vote for ativan which is known to have a tendency to cause post-procedure amnesia.

Do you work with an autism specialist? Perhaps they can give you some advice on helping your son cope with what is likely to be a procedure he has to go through more than once over the next few years. Making this first one go smoothly would be a priority for me so as not to set a precedent for future procedures.

If you are at a Children's Hospital ask for a Child Life Specialist to attend the procedure.

You might think about making a book with some pictures showing the MRI machine, someone drinking something out of a container with a straw, a person inside the machine, a child getting an IV - you get the idea. Then you could use that to help prepare him for the experience.

 

[DustyKat]

I don’t think you are overstating the your concern about radiation mum. :ghug: If it does come down to needing say a CT then it is possible that they do what is called a phase 1 scan which reduces the radiation to the lowest level. MRI/E does not use radiation to obtain images, it uses magnets.

So things to consider:

1. The enterograph, MRE (or CTE), that the GI wants your son to have has largely replaced the older SBFT as it is seen as a superior form of imaging.

2. Both a CTE and MRE requires an IV and the consumption of a large amount of oral contrast. In an adult it is 1500ml - 2000ml, I am not sure how much is used in younger ages. Your son may be able to drink it, but given his age, if he was able to tolerate having an NG tube inserted that would be preferable. The contrast tends to be sweet and sugary in most cases and may cause diarrhoea. The difference with the contrast used with an enterograph as compared to a normal MRI or CT is the fluid is designed to line the small rather than be absorbed by it. Therefore images tend to be more detailed and accurate. In my son’s case, CTE accurately identified the exact amount of diseased terminal ileum.

3. A normal scan requires 500 - 600ml of oral contrast for an adult. Regardless of whether a normal scan is done or an enterograph the oral contrast must be consumed in the hour prior to the test.

4. An MRI/E will take at least 45 minutes and a CT/E a few minutes. Each test will ask that the breath be held. Of course when it comes to children they can’t expect that scanning is going to produce perfect outcomes in many cases and that is where sedation comes in.

5. Pillcam has mentioned and that may well be an option for you but a recording device will have to be worn so that needs to be taken into consideration if he has issues with touch. A patency capsule should be used first to rule out any strictures and so negate the risk of the pill cam becoming stuck.

6. If all of these options prove to be impossible you could always drop back to an ultrasound if your son is able to tolerate something like that being done. It is not the most ideal form of imaging in this case but it is better than nothing.

I mentioned CT scanning in my opening paragraph for one reason only. If it does come down to needing accurate scanning that is fast then I would say to consider it. I know the thought of any radiation is scary but if it gives you the answers you need to get your lad well and on top of things again then the trade off will be worth it as Crohn’s can be cruel at times too which by the sounds of it you already know.

Dusty. xxx

 

[jland25]

Boy, I can tell I will be leaning heavily on this group in the months--and years--ahead. I haven't slept all week trying to decide what is best for my son and what test I might actually get him to do with some success. I'm leaning toward the MRE as I have an indolent lymphoma myself so the cancer risk feels very real. If he can't get through that….I'll have to talk to the doctor. My son is who he is.

I have been working to try to familiarize my boy with the MRE. He is verbal and on the high-functioning side, but very sensitive to sounds and other sensory output.

Thank you all again for your input. I'm a single mom who's been trying to deal with one "issue" with my kid and here comes a huge medical concern. I am trying my best to be strong and support like this really does help!

 

[mrjohns2]

One of the reasons the MRE was developed was to reduce the lifetime exposure to radiation for children who may be starting a lifetime's worth of tests.