MR-Enterography

[Mallory's Mum]

I might have the "E" part spelled wrong. Wondering what the kids experiences are with this? Mallory is scheduled to have it done on Wednesday morning and the Child Life lady called and has me sort of freaked out. She said that she has to drink about 550ML in 40 minutes. She suggested that we consider doing the NG tube but so far, Malliory doesn't seem interested. What this difficult for you or your kids?

 

[kimmidwife]

Mallory's Mom is this an MRI? My daughter had several MRI's where she had to drink a liquid. It was not to bad. They gave her crystal light to put in it. She actually drank it to fast they had to have her slow down.

 

[Mallory's Mum]

I am not sure why they call it MRE vs MRI as you are right...it's pretty much the same thing. Maybe it's due to drinking the contrast. I Caitlyn did it to see the small bowel etc due to Crohn's, I'm sure it's the same thing. They said that the contrast is sweet before they mix koolade like flavoring. I'm optimistic reading your post that Mallory can do it.

 

[DustyKat]

They are different in so far as the contrast is concerned. The test procedure itself is no different

With a standard CT/MRI you drink about 600mls over an hour. With an Enterogram you are required to drink about 1500mls of contrast over an hour. The liquid for an enterogram is more sugary and is designed to line the small bowel rather than be absorbed by it. I would think that the reduced amount of liquid is due to Mallory's age.

My son had no problem with the amount he had to drink, 1500mls, but he is much older than Mallory. The test was very accurate at identifying exactly how much of his small was affected by inflammation. He had it done the day after his colonoscopy as the surgeon did not want to push through the inflamed area.

Dusty. xxx

 

[Tesscorm]

My son had an MRE in the fall. I was expecting that the drink would be a problem - he had a horrible time drinking the colonoscopy prep and he's a picky eater/drinker. We took his NG tube, etc. expecting to use it. However, he had the drink and said it wasn't bad at all... no problems here...

 

[izzi'smom]

DD had one...sucked that contrast right down! It lasted about 30 minutes, and the only difficult part was the lengthy breath holds...they were tough even for me! I was allowed to go in with her and she tolerated it fine otherwise! The contrast did cause a bit of d about 30 minutes after ingesting it.

 

[dannysmom]

Danny had this too in October ... the worst part was the hospital did not have him fast before hand and did not inform us it was an MRE and that drinking contrast was required. He at pizza for dinner right before test - still managed to drink all the contrast but very slowly as it easily kept coming up. The contrast was entirely in his stomach (blocked by the pizza I am sure) when they tried to start the MRI ... so we waited, tried again, waited, etc. It was an awfully long night (till ~4:00AM) but in the end got the imaging. I read most hospitals do have patients fast 4-8 hours before the test.

 

[Tesscorm]

Yes, that right, I'd forgotten... Stephen had to fast as well.

 

[Mallory's Mum]

Great. You guys calmed my nerves. She does have to fast food/milk 4hours before and all NPO 2 hours before. We have one of the first appts so this won't be too hard since she will be sleeping. Thanks again. One less stress!

 

[DustyKat]

How did the test go Mum?

Dusty. xxx

 

[Mallory's Mum]

Seriously Dusty...you are phenomenal to remember and followup. You are a Super Moderator. Thank you!

Mallory did wonderful and better than I expected. The drink was really sweet but she was a champ and finished it. Of course, after we got home, she was really out of it. No eating or drinking for almost 2 hours. She kept saying she just felt really weird. I guess the glucogon (spelling) shot may have made her gut really slow and she felt nauseous. Don't think she knows what nausea feels like

I already got a call back saying that a majority of the test was normal and or conclusive of her disease. Something about shading in the ileum, which is were a majority of her severe disease is. No fistulas, strictures, or abscess. Yeah but still we are a little confused as to her direction she is going. She has had a fever now since Sunday, which is one of her symptoms prior to diagnosis. Then she was at 24+ days of fever. Last night it got up to 102. So what is causing the fevers or is the disease not in very good control at the moment. We stepped down on Prednisone last Thursday. We had bloodwork last wednesday but I'm thinking of asking today if they could order another count to see if things are changing even more. What do you think?

 

[DustyKat]

It's fab to hear all went well with the test. I'm sorry to hear she felt the effects afterwards though.

Even with the imaging done you may not be able to fully rule out complications. I don't want to scare you but just put it out there as something to consider if Mallory's fever persists or blood work is off and remains so. The fever may be due to inflammation or it may be that the inflammation is hiding a micro perforation and/or abscess.

If it were me I would be asking for a Full Blood Count and inflammatory markers to be done again.

Dusty. xxx

 

[imaboveitall]

Violet also has only ileal disease, revealed via SBFT and capsule endoscopy.
She had low grade fevers for weeks prior to dx, and once in awhile they'd spike to 103F.
As soon as she started EN and disease activity was reduced the fevers disappeared.

 

[Mallory's Mum]

UGH. I should start a new thread after talking to the nurse today. I voiced my concerns over Mallory's recent influx of fevers. Tonight is day 5 and the last two nights they have gotten up to 102. I basically asked the nurse what our docs thoughts were on her fevers coming back. We are to start 6MP tomorrow. She basically said that hopefully the 6MP will take over and make it all better. I basically kept pressing her to find out how we know if anything else is going on that wasn't on the scans and if she was really even anywhere never remission. I wanted to do bloodwork today but she wants to wait until next week when we do bloodwork to follow up 6mp start. Our huge concern is that the prednisone just masked the issues and now that we are dropping in dose, her disease is starting to show it's true colors. She told me the only way to know was a scope and they won't do that. So I asked about CT and following her a little more closely with blookwork...but I'm not sure if I'm just pressing too much. I sort of get the feeling like she is giving just her opinion and not fully running it all by the doctors. So then I asked about EN...and was poo poo'd on. Great for inducing remission but disease starts right up after stopping I was told. Not that we are ready for that but I'm all for knowing our options. I also asked that what if she continues with constant fevers and her weight starts dropping. I've already noticed a lag in eating and a pound or so lighter. I know you fluctuate but I've been seeing some consistent gaining so I'm sort of paranoid. She basically said that we would need to feed her more. My thoughts (and my nerdy husbands analogy) was that if a bucket keeps loosing water due to a whole, you don't just keep putting water in since that is not the problem. I'm sure weight is going to always be an issue for Mallory... So I guess the conversation will be continued tomorrow and I guess I'm back to logging fevers. I also wonder why they aren't concerned about her constant high heart rate. It's going on a month and half + but it doesn't seem like they think it's a Crohn's thing and the other specialist needs to take care of it.

I deserve the award for babbling...

 

[DustyKat]

Have they never suggested that the tachycardia (high heart rate) could be related to the Prednisone? Also if she has infection present that will also increase her heart rate.

The reduction in Prednisone may account for the drop off in appetite, the weight loss and as you have already suggested, the return of symptoms.

I don't think you can ever push too hard Mum. If you didn't think you needed to say something you wouldn't be thinking it or doing it. Trust your instinct and run with that. If there isn't anything wrong then you are no worse off but you would never forgive yourself if there was and you didn't pursue it.

Dusty. xxx

 

[Mallory's Mum]

@DEXTY: I'm glad that I'm not the only one that wanted to bonk the nurse. I was starting to feel like she is answering all of my questions and not feeding any of them through the doctor. I get that she has many years of experience, but it is the doctors decisions that I want most of all. In regards to EN, never heard of it before this forum. I have that inkling that some states doctors don't stand by somethings that are not mainstream medicine. So silly!

@DUSTY: She has had the tachycardia since before we started any of her meds, probably about 3-4 weeks. Of course, I can see how prednisone could keep it going. Guess we shall see what the day and weekend have in store for us. You know that kiddos love to have more issues on a weekend when talking to doctors/nurses isn't quite as easy

 

[imaboveitall]

Mallory'sMum,
That makes me mad and sad to hear what your nurse said...:voodoo:

Formula feeds are PROVEN treatment at inducing and MAINTAINING remission in cases worldwide, there are MED JOURNAL articles on this, I have read most of them, some are from Japan and the Netherlands.

Yes, if the pt d/c's the formula after the six or eight weeks, symptoms can return so WHY D/C it?
WHY discontinue a treatment that is WORKING, and is HARMLESS?
Violet has been on EN (with food, not exclusive) for almost FOUR years now, and she is NOT her GI's only pt on it for years. We are in USA where many people simply refuse to do it, per her GI, but in other countries it is the NORM.

Even if it doesn't completely normalize disease activity, as it has not in V's case, it GREATLY reduces the SYSTEMIC effect of active disease. This is not my opinion, that is direct from V's GI.
He said the formula has anticytokinergic effect, i.e., it "blunts" (his word) the effects of TNF and other cytokines on the whole body, as well as providing nutrients which these kids often lack due to malabsorption.

Violet had active TI disease the entire 3.5 years since dx, but she was WELL and healthy globally despite that. Her growth and development has been stellar, due to being so well nourished.
I am NOT saying it is a cure all or that it will fix all the issues; clearly, for V, it didn't as she is now on Humira.
But it is an important adjunct to meds, and her GI and I both want her on it until she is sixteen and done growing.

If your doc isn't a proponent of it, you shall not get much good information. And as for nurses...I don't deal with them, I email her GI directly and we bypass nurses.

Please investigate this treatment, your girl mirrors V at dx and you have NOTHING to lose by trying it. we use these drugs without blinking an eye but hesitate on a safe treatment...that boggles my mind and according to V's GI is an American phenomenon...in other countries they are not given a choice, EN is first line.

Edited to add:
V was tachy at dx and for weeks prior. It was a direct result of malnutrition PER the DOC.

 

[Tesscorm]

Mallory's Mom,

For the most part, my son's only treatment has been EN since May 2011. The only other meds he has taken was one week on IV Flagyl while in the hospital and, since diagnosis, takes Nexium (antacid).

He did six weeks of 'exclusive' EN (no foods) at 3000 cals per day and then his maintenance has been 1/2 the dose, 5 nights per week.

As was said above, EN provides nutrition and is anti-inflammatory. His symptoms disappeared very, very quickly. It's true that EN is not as successful at maintaining remission as other drugs, however, this does not mean it doesn't EVER maintain remission for an extended time period. My son's GI has told he that he has patients who have maintained remission for years, one going on 5 years remission. And, regardless, as Dexky said, even if it doesn't maintain remission, it can still do the same job as pred while providing nutrition and no side effects.

 

[izzi'smom]

Mallory'smom...you are NEVER pushing too hard. In fact, I would INSIST on an appt with the doc, as it is HIS opinion you value, no offense to all of the wonderful, hard working nurses out there.
While Izz used EN it helped...although *only* if she ate nothing else. This, and the trauma of reinserting an indwelling ng tube when it fell out, are the reasons we decided not to continue.
I have to also add that for refractory/steroid dependent kids (kids who are symptomatic *every* time they come off pred), steroids *also* don't work when you discontinue treatment. So the difference between EN and steroid therapy is...?

Unfortunately, you can have the best doc in the world, but if you feel that you aren't communicating effectively with him, it won't help a bit. I now insist on monthly appointments because I feel that I wasn't being heard because of the exact same problem.
Keep pushing, mom. SOmeone needs to advocate for your child and no one can do it better than you, although it CAN be exhausting at times (I often joke that my daughters medical care can be a full time job some days lol!)

 

[imaboveitall]

Right on, Angie.
V's GI saw her TWICE per WEEK for a month right after dx, then every two weeks for six weeks, then MONTHLY for three months, then went to every two months for three months, then every three mos for three mos, then to four, and finally to every six months. These were sched f/u, not acute care visits. Because he stayed so on top of her w/follow up, she avoided acute visits and frightened calls from me at off hours. She has NEVER had an acute visit since dx.

I don't GET these docs who are impossible to reach and who have nurses that act like castle guards.

Mallory's story is touching me because it reminds me of how Violet presented...:heart:

 

[Mallory's Mum]

**Thanks for all of the advice. I had round two of phone conversations today and I am more confused than ever.**

So the conversation today is a 180 degree turn from those of past emails and phone talk yesterday:

*Now they want to amp up her steroid dose to 40mg (currently on 20mg). Yesterday I was told that despite fevers etc, they would never increase steroid dose. I was told that steroids are her drug right now and pretty much standard in treatment. She said by looking at scopes and scans, there should be no reason she is not responding to steroid treatment. I'm thinking....ok. Not everything works for everyone or is there something else going on that you can't see.

*I mention my research and great advice for other parents (you folk) that sometimes things don't show up on MRE but are found on CT. Some peoples bloodwork looks normal with active disease. I'm told that it's not true.

*We discuss the fevers again for the bagillionth time. Don't people take notes. I reminded her that they went pretty much away with 30mg but came back after lowering. I'm told to only give her tylenol if they get up to 102 again or if a headache or if hip pain. So...pretty much around the clock then like I'm doing.

*Now saying that headache might probably not related but as a mom, I know it is because she never had them before and they sort of go hand in hand with the fevers.

*I'm baffled at this point as I hate the concept of her being on the steroids even longer. She's basically telling me to get used to it. :ybatty: Mentioned that they've discussed putting her in the hospital for IV steroids as they will by pass the stomach. Honestly, I'm ok with this as it might get better results. But she shoots me down saying that that is awful because she can catch something, have an IV, blah blah blah. She gets stuck every week anyway; we wouldn't catch anything if people consistently wash their hands upon entering and exiting rooms etc. Anyone know the benefits/risks of IV steroids versus oral?

*Yet again I mentioned the heart rate that is concerning to me. I am not stupid and I know fevers and heart rate can be symptoms of things yet I'm reminded again. So I ask if it is related to Crohns. Yesterday I was told no. Today I'm told they thought it was thyroid. I remind of the negative tests. Asked where do I want to be referred too? I'm not doctor yet they suggest talking to my pedi doctor who I know will just say go to a specialist. And we finish the call assuming that it's a symptom of her acute inflammation...which we had said in the beginning.

*I don't even try bringing up EN again with her. Pretty much know it's pointless. Anyone know about endocort? I've read about people being on that instead of prednisone. Is that correct?

Just a total frustration leaving me completely baffled as to what to do. I basically hung up the phone and called the hubby to discuss what we should do. I'm not sure if she's been fielding info and the doc just found out today about what was going on and that's where the med raise is coming from. I have the lack of confidence in what choice to make. She kept talking about me having an appt on the 21st but I don't have one until the 4th. So I guess we are going in next week to see if she's made any progress. We have thrown so many ideas around like keeping everything the same and seeing what the fever does, going just back up to first dosing of 30mg, etc.

I SERIOUSLY miss my normal life. My mom told me that think of what my daughter is going through...which DUH I do. But life is so mixed up right now and I can't help of miss our old normal of dance class, spanish, and moments of peace for mom. Crohn's makes me mad and I don't even have it!

 

[DustyKat]

Enteral Nutrition has the same success as steroids at inducing remission, particularly in children. Studies suggest that it is often not as successful after its initial use and that the relapse rate post treatment is higher than with steroids. Like all treatments EN works for some and not for others just as steroids work for some and not for others. To dismiss outright is ridiculous and is testament to their lack of knowledge regarding effective treatments. EN is used in most other countries, outside the US, as the first line of treatment for Crohn's, especially in children. My daughter was diagnosed on the operating table so no chance to use it there. My son did commence on it but complications appeared that EN wasn't going to able to treat.

Often what doctors fail to realise is that knowledge about this disease becomes our quest in life and as a result we often end up knowing more than they do. That is no disrespect to them but why wouldn't we. A GI doesn't only deal with IBD but we do and unless you go to an IBD specialist there is every chance that you are better versed with all things IBD than they are, particularly when it comes to your child.

Entocort is another type of steroid but most of it is actioned within the bowel so it doesn't have the same degree of systemic issues and side effects that Prednisone does. It is often used in children because of this. It is not unusual to have to fiddle the Pred, go up before going down again, and for some this is what it takes before it takes effect. I don't think anyone would deny that Prednisone is not a nice drug and some people will tell you to avoid it at all costs but it can't be denied that it has saved many a life and bowel.
IV Hydrocortisone is a pretty standard treatment when you present to hospital in an acute flare. It is usually pretty effective at bringing inflammation under control quickly and stabilising the presenting condition. It is normally done in conjunction with antibiotics which leads me to ask, is she or has she been on Flagyl in conjunction with the Pred? Flagyl is also a first line treatment as it not only treats infection that is normally present in a flare but it also has anti inflammatory properties.

It is a well known fact and published fact that not everyone with active Crohn's will have abnormal blood results. My daughter was one of those that didn't, her bloods and other tests never reflected what was happening with her. Hence why she went undiagnosed for so long and ended up in emergency surgery.
On the other hand my son's bloods show everything but for him Prednisone wasn't a wonder drug and it was no doubt due to the complications he had. I do think it stabilised his condition though.

I would talk directly with the GI first to ensure that he is aware of all your concerns. Then start seeking second, third, fourth or how ever many opinions it takes until you are satisfied that the treatment your daughter is receiving is appropriate. I always find a good question to ask a doctor or nurse when you are face to face with them is, "Do you have children". If the answer is yes then, "What would you do if this was your daughter", "Who would you send your daughter to".

Dusty. xxx

 

[imaboveitall]

MM, that is the worst. I wish I were there to hug you...and to talk to them FOR you. (Not implying you are not able, I just am all worked up here over your posts) :hug:
Sorry but your doc's way of dealing with mothers sucks.

They are lumping Mallory in with a "norm" (there is none w/IBD as I've recently learned) and dismissing concerns...backpedaling and conflicting stories...WTeffingH?? Saying that bloodwork cannot be normal w/active disease...VIOLET'S is near normal and Dusty's girl was deathly ill w/barely "off" bloods...MANY on here say the same, and V's doc does TOO. V's lactoferrin is WAY low at the moment and not only her GI but the BigDog we JUST took her to two days ago AGREED and said labs can be very misleading as to actual disease activity ESPECIALLY in pts w/o bleeding and WITH ILEAL disease!!

I'd seek another pedi GI personally.

Tachycardia due to low erythrocytes/02 levels secondary to MALNUTRITION is a strong possibility here. They want to pump her full of pred rather than FEED her formula concurrently and see if it helps...WTF.

Don't let your head explode, those early days will do that to you.

Much love from me and Violet...:kiss:

 

[Twiggy930]

Hey Mallory's Mum,

I am late seeing this thread. Just wanted to let you know that my son was put on prednisone (40 mg) at diagnosis and that stabilized him but it has not put him in remission. At our last GI visit 2 weeks ago we were told that we had 3 options.

1. Leave the plan as is. Taper off the prednisone as planned and hope that the Imuran kicks in and is effective. Since my son feels like crap and can't make it through a day of school we both thought this was a poor choice.

2. Admit my son to hospital and start IV prednisone. GI told me that sometimes people who aren't responding to oral prednisone do better after a course of IV prednisone. GI didn't really favor this plan.

3. Start EN to see if that will induce remission and get him feeling better before the Imuran has a chance to kick in. This was definitely the approach that our GI favored.

We decided on the spot to go the EN route and our GI seemed genuinely pleased with that plan. We have unfortunately been in a holding pattern for the past two weeks waiting for our appointment to learn how to use the NG tube. We go tomorrow morning for our NG tube appointment.

We were given the option of EN right off the bat at diagnosis and I got the impression all along that it was the approach that they favored. At the time, however, we just couldn't wrap our heads around not eating for 6 - 8 weeks and it all seemed too hard. Now that we have all gotten more used to this whole Crohn's thing it seems less daunting. It probably also helps that we now know how crappy the prednisone side effects are too.:yrolleyes:

My son's labs are also coming back normal (or very close to it) but he still feels like crap. We are still waiting to get a MRI done so who knows what is going on in there.

Do you go to a children's hospital? I am wondering if EN might be a more accepted treatment plan at a children's hospital.

 

[imaboveitall]

Twiggy, you're in Canada so that's why EN is first line rather than last resort as it is here in States. Here, they push pills as pts don't want to do EN (per V's doc).
V's doc says (here's my broken record again) in UK, Canada and Japan (those were the three he mentioned) EN is first line with ped pts and little choice given.
Interesting that your boy's labs are normalizing but he still feels crappy...that's Violet to a T. :eek2:

 

[Tesscorm]

Hi Mallory's Mom,

How is Mallory feeling? I hope the fevers, headaches, etc. have alleviated. :ghug:


Twiggy - I hope the apptmt re the NG tube goes well!