Introduction

[Momtotwo]

I am a new member who has been reading posts for a few days and already found this forum helpful. Right now, I am shocked, angry and sad as my child was recently diagnosed with Crohn's. I am trying to move past that and onto the next phase of tackling Crohn's.

I am sorry that so many of us are parenting children affected by this disease.

My first question- if you don't mind answering. Did your child have an MRE done? Any chance it was done in the northeast of the US? Where? Please share your experience or any tips.

 

[Jmrogers4]

Welcome,
Sorry you have had to join our club and your feelings are completely normal and you go through the stages of grief (more than once as things change).
My son had an MRE in December although not in the NE.
No food prior to testing and no dairy. We had it done first thing in the morning so this was not an issue. They need to drink contrast about an hour before the procedure. This was the hardest part for my son as it needs to be done fairly quickly and it was quite a lot although he only finished 1/2 before he started throwing up but luckily it was enough. There have been a few who have done this through an NG tube, something I'm going to ask for if we have to do it again as I don't think I could get him to drink it again.
They then give a shot I believe it's glucagon to slow the intestine and allow them to get good pictures this again made my son nauseaous. While in the MRI machine they will be asked to hold their breath off and on to get good pictures and the machine is loud but they are given headphones to wear.
Please feel free to ask any more questions and keep us posted.

 

[Farmwife]

Hi and welcome.

It sure is a process of dealing with the news of Crohn's or UC. Just know we've been in your shoes and some days I still feeling like I'm learning to deal with this.

I'm in Michigan but my girl had an ct scan with contact. The GI thought she was to young for mre, she was four at the time.

More will be along.
Ask as many questions as you like. We're here to help.:hug:

 

[CrohnsKidMom]

Welcome to the forum, but sorry your little one is suffering. My son was dx'd last yr at age 8. He had an MRE done here at our local children's hospital. As already mentioned, there'll be contrast your child has to drink. The nurse added a water flavouring, which helped my son get it down. An IV was also put in. I was able to go in with my son and hold his hand. The procedure itself is painless, just loud. All the best to you and your little one!

 

[myboy12]

My 12 year old son had a MRE done at Lutheran General Hospital in Park Ridge Illinois where his doctor is located. The MRE was done 5 months after his initial diagnosis which was determined through endoscopy/colonoscopy. The results of the MRE indicated 5 cm of inflammation in the terminal ileum.

Drinking the contrast was very difficult for him, we weren't sure he was actually going to do it. Chewing on some ice in-between sips helped.

Good luck!

 

[Jmrogers4]

Oops thanks CrohnsKidMom forgot about the IV, yes my son had one as well.

 

[Momtotwo]

Thanks, everyone. Did you child have trouble being still during the test? Drinking the contrast worries me the most as it took many hours to get my son to drink the Miralax prep before his colonoscopy. I think this will be more difficult!

Another question I have- part of this is denial. I'll admit that. But at what point were you sure the drs were correct? The Promethius panel came back with markers for UC rather than Crohn's. But the dr explained it's often inaccurate. He said the inflammation/erosions in different areas indicated Crohn's and that's really all if can be. The skeptic in me thinks...all of the diseases that exist and yet inflammation can only be Crohn's or UC?

 

[Momtotwo]

We are going to get a second opinion at a children's hospital. I don't doubt our doctor's qualification or expertise. He is a pediatric GI who treats many children with Crohn's. I just need to be sure, and I'm sure every parent here understands that.

 

[Momtotwo]

...I also wonder why my dr is starting with Remicade. It looks like many of your children had drugs before Remicade. I guess that is a question for our doctor and the second opinion.

 

[Clash]

Hi my son has had MRE as well. He didn't want to drink the contrast so he took his through an NG tube. The glucagon was probably the roughest as it made him very nauseated but only lasted a few minutes. He was in the machine for about 45 mins then they gave the glucagon and he was in maybe another 15-20 mins. My son saying being still was difficult only because the position he was in was uncomfortable.

If they did biopsies during the scope and found granulomas then that would be one reason they felt certain it was CD also CD shows a skip pattern whereas UC tends to be more consistent. They van determine if inflammation is acute or chronic from scopes and biopsies as well and that can rule out other causes for the inflammation. A second opinion is a good idea just to determine the different treatment options.

Some GIs use the bottom up therapy starting with drugs such as 5ASAs or immunosuppressants like Imuran and other GIs use top down approach starting with meds like remicade. I believe a recent study showed use of remicade with three months of dx had higher rate of remission and lowered the percentage of surgery.

My son's CD was severe so we went straight to remicade. We later had to add methotrexate. He has still had disease progression so we are determining our next step.

I truly hope things improve for your son quickly.

 

[Maya142]

Hi and welcome Momtotwo (but sorry you have to be here),
We also got a second opinion and I spent a long time denying that my daughter had Crohn's especially since she already had a chronic illness (a form juvenile arthritis). The dr we saw for our second opinion did confirm she had Crohn's, but if you're uncomfortable, a second opinion can be very useful.

Going to Remicade first is a more aggressive form of treatment but there are a number of kids on the forum who were treated that way, including my daughter (who is in remission now).

There's new evidence that shows that using biologics earlier in the disease gives you the best chance of going into remission. It's called the "top-down" approach I think (versus the "step up" approach). There are a number of articles in the research section of Parents Forum about it.
Good luck!

 

[CrohnsKidMom]

Our GI said he knew it was hard for little ones to hold still, and the MRE is just another tool to help arrive at a dx. They just do the best they can. The biopsies done during the scopes are what really confirmed the dx. I felt some denial at first too, but our GI was 100% sure it was Crohn's. But I think my son is closer to a textbook case. I know some parents on the forum here are still waiting and hoping for a confirmed dx.

 

[Momtotwo]

Our biopsies are still pending. The dr said what was said above- granulo-somethings would be confirmation, but without them, he still felt he was looking at Crohn's. But there seems to be some subjectivity since it depends on what the GI is seeing on the scopes. I read so many posts from adults who were misdiagnosed, but I suppose many of those could have been people with negative scopes.

 

[Maya142]

I think it's more common to not get a proper diagnosis (to have negative scopes/MRE etc) than to get one.
My daughter had granulomas but no typical symptoms of Crohn's -- no diarrhea, no bleeding, just stomach aches and constipation, which is why I kept trying to deny it. However, it seems like there really is no "typical" and kids especially have all sorts of symptoms. The biopsies will give you more information, hang in there!

 

[Momtotwo]

I'm still in the wanting to wake up and find out it was all a nightmare phase. But it's the first thing on my mind when I wake, followed by a burning in my stomach.

I know friends are trying to be supportive, but I'm already tired of the comments that make it seem like Crohn's is not a big deal because so many people have it. I want to say- really, talk to me after you take YOUR child in for 8 tubes of blood, anesthesia for a test, bowel preps, more blood work, radiology studies, travel for second opinions and then signing up for drug infusions for God knows how long. Then tell me it isn't a big deal.

 

[Jmrogers4]

That is why we are all here because they don't really get it until you have to deal with it and the whole thing of it being a "silent" disease. The comments of well he doesn't look sick.
But life does get easier and it's not always the first thing you think about. When your child is feeling good and enjoying life I can go days without it being in the front of my mind. Sometimes it takes a long time to get there.
We have followed the bottom up approach and now that he is on remicade I wish we would have had the option to do a top down. We have struggled for 4 years with weight and growth issues and while he has generally felt pretty good, diarrhea, bloody stools, etc have never been an issue he had very slow growth and no weight gain for 3 years! So we always felt we were missing something but blood tests always came back in normal range. We found out in December that he had inflammation throughout his small intestine and he was switched over to remicade and immediately gained weight and has really started growing the last couple of months. He will be 15 in a couple of months but could easily pass for 11-12 and many people think his 13 year old brother is the older one. We missed out on some years of growth/puberty and are only now since remicade seem to be playing catch up but it is hard on him psychologically as his peers are so far a head of him and high school is hard enough.
Sending loads of hugs your way, we are here for support if you need some sympathy, to vent or just to laugh. We have become somewhat of a family and I for one love hearing about all the accomplishments these children make and cheer them on when they are struggling.

 

[malorymug]

Thanks, everyone. Did you child have trouble being still during the test? Drinking the contrast worries me the most as it took many hours to get my son to drink the Miralax prep before his colonoscopy. I think this will be more difficult!

Hi. My 13 year old boy just did his MRE today. He said it was much easier than the EGD and colonoscopy. No troubles being still, had to hold his breathe for 20 seconds about 10 different times (but no rush) and they give a med to slow the bowels. The contrasts wasn't nearly as bad as the Miralax. There was less to drink, it was cold, and it tasted better.

I personally disliked the MRE because it was noisy and cold. But I'm thrilled to have it over with and now we have the whole picture on my son's disease.

 

[my little penguin]

DS had an mre at a children's hospital.
They have a kiddie theme room plus movie googles to watch during the procedure -
Its loud for parents but the kids have headphones on so they can hear the tech and protect their ears.
The top three Ibd pediatric hospitals on the US are
Chop , Bch and cchmc.
They are all in the NE.
We got a second opinion as well.
DS had multiple granulomas so it was easy to check the cd box.
His egd/colonscopy looked visually normal though.
Biologics are currently recommended to be used first since if they are used within 3 months of dx the likely hood of changing the disease course and reducing surgery is good .

Nothing is easy about this
But it does get better - some like DS did bottom up and it took over a year to get to remicade .
Only then did he started to feel better.
Also ask about adding EEN ( formula only)
It helps with growth and weight in kids.
DS still does en ( formula plus food) and is back to his growth curve.
Which is greater most crohn's kids have issues with growth other wise.

Good luck

 

[Brian'sMom]

We had MRE also done at a children's hospital. And also had the movie goggles. The last one he had he said he actually had to keep himself from laughing at the movie (Mall Cop) because he was supposed to be still for certain moments when they took a picture! He didn't like drinking the contrast. For the last 2 he had already been taught how to insert an NG tube for EN, so he inserted a tube and took the contrast that way.

How old is your child? Mine was 10 when he had his first MRE. And, I agree that Crohns is a BIG deal!! I've also heard similar comments. But then I've also heard, "Oh I hear that is a horrible disease" and I hate hearing that too!! So I guess I just don't want my kid to have it at all!!

 

[SupportiveMom]

I want those movie goggles! Great idea. The MRE's that D has had (2 now) were easier than the colonoscopy/endocopy (also had done 2x's), especially because they put our kid under. The MRE shows more than the scope. Still the scope conflicts itself on D's diagnosis (pathology says UC, scope says crohn's). The MRE confirmed Crohn's.

Hang in there! Keep reading & posting. People here are amazing. The first part of diagnosis/treatment is scary but it does get better. When D was first diagnosed the forums helped a lot to understand things that I felt were flying at me trying to understand.

 

[AZMOM]

Momtotwo - Yes on the MRE. No on the northeast. And, we didn't have the movie goggles.

We are glad you've found us but sure hate that you are going through this. It's been several years for us but in some ways, it feels like last week!

Big hug,

Julie

 

[kimmidwife]

Momtotwo,
Just wanted to send you a big hug! I am sorry you had to find us but glad you did. It is a rough road and yes it is hard when people don't understand. But you have a whole group of understanding people here. A second opinion never hurts. My daughter has had multiple MREs.