New here! Daughter with terminal ileal Crohn's. Frustrated!

[Ginger Ale]

Hello!

Our daughter (16 yo) was diagnosed in November after having non-specific mid-abdominal GI pains for over a year ("it's stress"). She had a CT and MRI that showed lesions from stem to stern, but most specifically in her terminal ileum; there were also signs of adhesions, but no fistulas.

She has NO diarrhea, only pain and nausea. She has never had growth or weight loss issues. We placed her on Remicade due to the severity of her lesions and started the SCD a week later (intro and all).

She has continued to have painful flares every 3-4 weeks resulting in visits to the ER and is having another one right now. She is eating primarily meats, carrots, squash, apple cider, applesauce, hard cheeses. Every time we think about adding in a new food, she flares. Lately I added in brussels sprouts and now here we are. Last time it was almond butter and almond meal. BUT! No matter whether we add something or not, she flares like clockwork every 3 to 4 weeks. So sometimes it doesn't feel food related. Her doc feels she may have scar tissue narrowing her ileum and when she can't pass something poorly digestible, she flares. But she isn't on stuff with much fiber at all (brussels sprouts notwithstanding - that's very new).

My main questions revolve around how "normal" this is for a recently diagnosed kid to continue to have such issues so far out. I wonder if the Remicade is even helping, or if the diet is helping; her anemia has worsened as well. The official next step is another MRI; her doctor doesn't even know she's flaring right now because they are closed for the holiday today. She literally had her fourth Remicade infusion on Friday, and 48 hours later she's flaring badly.

Does anyone else have any suggestions/experience/advice? We have thought about EEN. She's pretty resistant because the NG tube placement was extremely upsetting and uncomfortable for her and she thinks it will be like that each time. Which we can deal with. But it's been difficult finding out more about folks withOUT diarrhea and trying to determine the best course when we only have a flare every 3-4 weeks to give us any idea about what is helping and what isn't.

Ideas? Thanks in advance!

 

[Maya142]

Hi and welcome!

My kiddo did not have diarrhea either -- only abdominal pain and constipation. She also has Crohn's in her terminal ileum and her colon.

First, a few questions:
Have they done a Remicade level test? It's possible she is flaring about 4 weeks out because she has no Remicade in her system at that point. Some kids need higher doses/more frequent infusions or both.

My daughter started at the standard 5 mg/kg of Remicade, but we quickly went up to 7.5 mg/kg and then finally 10 mg/kg. She always had symptoms about 5 weeks after her last infusion, so we did infusions every 4-5 weeks.

With the levels test, they can figure out how much Remicade she has in her body right before the infusion (so they'd do it at her next infusion). Kids tend to metabolize drugs quickly and very inflamed kids even more quickly.

Is she on any other medications with Remicade?

The other thing to remember is that it took a long time for her bowel to get ulcerated/inflamed/scarred. So it's going to take time for it to heal. If she's on her fourth infusion, you should be seeing improvement, but it can take even longer for a kiddo to really feel a LOT better. Some parents have said their kids took 6 months.

Scar tissue, is of course, different. That won't go away. If that's the case, sometimes they can do a balloon dilation or the other option is usually surgery.

In terms of food, since she isn't in remission yet, I'd stick to low fiber food. Especially since she may have some scar tissue.

My daughter had an NG tube to do EN. She was VERY against the NG tube. Hated the idea of it. She tried very hard to drink the formula instead. But she couldn't drink enough to maintain her weight, much less gain. So her GI insisted and we started tube feeds.

The first night was ROUGH. Her nose and throat hurt and she was miserable. But by the second night, she inserted the tube by herself and felt a lot better. Within a week, she was very comfortable with it. No pain at all with insertion and she could do it in 10 seconds. She chose to insert it every night and remove it in the morning so no one at school had to know.

What kind of NG tube did your daughter have? The kind we used was very flexible and soft. It was also infant sized - about as thick as spaghetti. The size we used was 6Fr. My daughter was a teenager and it worked very well.

She now says she'll never go back to drinking formula and that the tube is much better!

The other possibility is drinking the formula. Some kids are able to do it. It's not easy, but it can be done.

Good luck!

 

[my little penguin]

Ds would not be able to eat anything on her list
Scd is great if it doesn't cause you to flare
Een doesn't mean a tube
Ds has done een 3 different times and drinks his all orally
You can use polymeric formula (boost or ensure )
Or semi elemental (peptide or peptamen jr )
Or elemental (neocate jr elevate jr)
Ds has drank orally neocate jr chocolate and peptamen jr
She may need something to reduce inflammation such as steroid or boost remicade with methotrexate

What is her dose and frequency of remicade ?
Ds never made it to every 8 weeks
He needed 7.5 mg/kg every 6 weeks
He is on humira every 5 days , methotrexate and 50% calories from neocate jr
He doesn't eat red meat or raw veggies (only a few cooked ones )
No dairy no gluten no fish no nuts and no milk
Not a specific diet - just avoiding what makes him sick and what he is allergic to


Almonds and almond meal are very high in fat and very hard to digest

 

[Ginger Ale]

Thank you, Maya142! I'm hoping to hear from her GI within the next day or two about her thoughts on what's happening and whether the Remicade is helping. Some of my frustation stems from being told, at each infusion, "this is the one that will help her feel better." And then we're back still dealing with major issues. I'm curious to see if she recommends a level test or even an antibody test. She has already gone to 10 mg/kg No other medications.

Thanks for the NG tube info. Hers was considerably larger in preparation for a full night of GoLightly for her emergency endoscopy/colonoscopy the next day. I will definitely let her know that it would be MUCH smaller and therefore not a big deal if we decide to do that. Thank you!

Thanks for the info, mlp. She gets 10 mg/kg every 8 weeks. But she flares every 3-4 weeks and has done so even before we started the Remicade - so I'm not sure that the frequency would help much?

I'm curious as to how you know your son can't have certain foods? What lets you know that he can't tolerate something?

Thanks!

 

[Maya142]

My daughter also doesn't tolerate certain foods - if she eats beef for example, that pretty much guarantees belly pain and diarrhea. Things with a lot of fiber - such as salad - also end in many bathroom trips and cramping.

It's trial and error honestly. You figure it out.

You still have some room to play with her dose. My daughter got up to 10 mg/kg every 4 or 5 weeks. It may be that she isn't getting enough Remicade. She also may need an additional medication - sometimes adding an immunomodulator like 6MP or Methotrexate helps.

There are videos on YouTube of kids inserting their own NG tubes. There is also a great site - feeding tube awareness - which has lots of great info about feeding tubes. EEN may help induce remission while you are waiting for Remicade to kick in. Alternatively, you could use try steroids if she won't do EEN.

Getting a second opinion may also help - sometimes a second set of eyes is very valuable.

 

[Ginger Ale]

Thank you - I'm so glad to hear some other options. We will definitely look into a second opinion, probably after her MRI.

Thanks for the info about when to know if a food isn't tolerated. Unfortunately, she really has absolutely NO symptoms (no diarrhea ever, and absolutely no belly pain) for weeks until she has a flare. And multiple times she has flared while eating the same foods for the previous week to 10 days that she tolerated just fine. So many people have said we shouldn't be feeding this or that, but how do I know when she does great when I add those foods?

Twice now, she has flared within a few days of adding in a new food (almond butter/meal - which is still Phase 1 of SCD, and considered okay to add in if the diarrhea or other symptoms have abated, which is why we added it in within about 4-6 weeks of starting SCD - and brussels sprouts). But to be honest, the new foods also coincided with her usual flare timing of every 3-4 weeks. Now I've started waiting until after a flare to add in something new - and again, she has tolerated everything fine at the time. That's why I was wondering who has experience with kids without diarrhea, how do you know? She doesn't even have belly pain. So she's still essentially eating all the same foods we added in at the very beginning and I'm worried about her nutrient intake over these past months with such a limited diet.

 

[Maya142]

It can be VERY hard to tell. Some parents find that using a food diary helps, to see patterns.

It could be that food is not bothering her at all - it's just that there's active inflammation that hasn't been controlled yet. The cyclical nature, the fact that it's every 4 weeks or so exactly, makes me think it has to do with her dose of Remicade and not with food.

But honestly, it's very hard to say. It's really hard to figure out, especially in the beginning, what is causing problems. It's much easier when your child's disease is under control to see if certain foods cause symptoms.

For right now, I would just stick to foods you KNOW she tolerates - don't try to add too many new things. When her Crohn's is under control, then I would add foods. Otherwise there are a lot of variables and it's going to be very hard to tell what's causing what.

 

[Ginger Ale]

Thank you, it IS very hard to figure out. I'm wanting to be sure we're not missing something and that it is relatively common to have difficulty achieving some symptomatic control after all this time. My poor kid!

 

[pdx]

My daughter took about 6 months to respond well to Remicade. We ended up having to add several other treatments--EEN, budesonide, and methotrexate--to get her well enough that the Remicade could take over. We also had to increase the dose and frequency of her Remicade infusions. She still does best when on the combo of both Remicade and methotrexate.

Do you think your daughter's flares could be related to her menstrual cycle? My daughter seems to have more issues with diarrhea and nausea during her period, and others here have commented on this too.

 

[Ginger Ale]

Thanks, pdx! We're in Corvallis, commuting up to OHSU. Do you see GI's there or at NW Peds?

I had thought methotrexate was for diarrhea, but I see that I'm wrong. Yes, it looks like we will have to add something else in - whether it's another drug, EEN or surgery. I think we'll decide once we have the MRI results in - that's being scheduled soon.

Excellent question about her cycles. We have tried to find a connection - she's not the most body-aware kid, and her cycles are also irregular. Several times she's been menstruating, and other times she's been in the middle of her cycle or has even skipped a few cycles and not gotten her period at all for that month. UGH. We will definitely continue to monitor - good to know that others have had issues. Thank you.

Also, I meant to say in response to possibly needing to increase the frequency of her Remicade doses --> she had her fourth dose on Friday and flared on Sunday. I'm much more inclined to think it either needs more time to work or it simply isn't working. Shouldn't she have at least had a week or so of relief after this heavy dose??

 

[Tesscorm]

It's very hard at the beginning So many unknowns and frustrating when, all the while, you see your child suffer. I'm sorry that she hasn't reached lasting remission yet.

I agree with Maya that the 3-4 week cycle seems to be that remicade needs some tweaking. My son's GI did a remicade serum level test the day before his first '8 week' infusion and when the level was low, he moved him to a six week cycle. Tested again, the morning of his first '6 week' infusion and as levels were good, we've stayed at 6 weeks. She may need to shorten her infusion cycle.

It can also take a while for the full effects of remicade to kick in... maybe I missed it but did she take prednisone to induce remission, while waiting for remicade to kick in? EEN can be done in place of steroids. As was also described above, EEN can be much easier than expected! My son, who was also 16 when diagnosed, did EEN for six weeks to induce remission. He learned to insert the tube each evening and remove in the morning (he ingested the formula overnight). Once he learned, which only took a few tries with a nurse, it literally took him seconds to insert the tube in the evening. It was a bit uncomfortable (sensation of something in throat) for the first few nights but, this went away fairly quickly. The advantage of steroids or EEN is that it will help kickstart remission and then allow remicade to take over the 'maintenance' of remission.

I don't believe foods can cause a flare. Certain foods may not be tolerable, which will result in short term pain, cramping, diarrhea, etc. but I don't think it will cause a flare which last weeks (of course, unless it's a food that you continue to eat on a daily basis... ie eating dairy when lactose intolerant or fibre if you have scar tissue, tightening, gluten, etc.) But, given that your daughter flares at the same time period after infusion, I'd lean towards it not being directly food related.

However, during flares, I would avoid any food that she finds 'difficult' to digest or that may possibly aggravate... I'd stick with low fibre, low residue, soft foods, etc. (which I think you're doing??).

As far as nutrition, if she won't do EEN, would she consider drinking some nutritional shakes as a supplement to her diet? Many of the kids here do supplemental EN to add to their nutrition, calories, etc. My son is 22 and still drinks 1-2 Boost shakes most days.

I've also read of some members finding a correlation to their periods?? I don't know much about this but maybe Maya, Kimmidwife or Carolinalaska have some thoughts re this??

As far as having difficulty achieving remission... unfortunately, it's different for everyone! Makes it even harder to understand this disease and know when you're making the right decision! :ybatty: Have patience but do ask the GI what the 'endgame' is... how long before he/she expects to see results? What options to help achieve remission (ie steroids or EEN, adding immunosuppressant to remicade, etc.).

Good luck, I hope the MRE and next apptmt give you a clearer picture and a plan to go forward! :ghug:

 

[pdx]

Thanks, pdx! We're in Corvallis, commuting up to OHSU. Do you see GI's there or at NW Peds?

That's quite a commute--sorry you have to go so far. We have Kaiser insurance, so we see a Kaiser GI, but we've spent quite a bit of time up at OHSU. Kaiser has just one pediatric GI in Portland, who luckily is excellent. She works part-time at Kaiser and part-time at Doernbecher. Kaiser doesn't have a children's hospital, so they have a ward at Doernbecher; we spent several weeks there the year my daughter was diagnosed.

Also, I meant to say in response to possibly needing to increase the frequency of her Remicade doses --> she had her fourth dose on Friday and flared on Sunday. I'm much more inclined to think it either needs more time to work or it simply isn't working. Shouldn't she have at least had a week or so of relief after this heavy dose??

I agree with you on this. It's still possible that Remicade will eventually work, but it does seem like another short-term treatment may be needed in the meantime. I hope that the MRI gives you more information, and that you can figure out good next steps.

 

[Maya142]

My daughter also feels worse during her period. She tends to have diarrhea then and more stomach pain.

One thing to understand - inflammation is inflammation. In some kids, it causes diarrhea, in others, constipation. Some kids have pain and others have no symptoms at all! Either way, it has to be treated.

No matter what your daughter's symptoms are (or aren't, if she's most asymptomatic), if there is still inflammation it will be treated with one of the IBD medications. Since she's already on a biologic, that leaves adding an immunomodulator like methotrexate or Imuran or 6MP. You could also add steroids, but of course, those would be for the short term.

If she's flaring right after her infusion, it does sound like she needs another medication in addition to the Remicade. If a combination doesn't work, then they would probably move her on to a different biologic.

There are several other biologics - Humira, Simponi and Cimzia are all anti-TNFs like Remicade. Entyvio is a newer option (and has a different mechanism) and Stelara is the newest option (an IL 12 and 23 inhibitor).

Hang in there!! When my daughter was diagnosed, someone on here once told me that it's a marathon and not a sprint, and that was one of the most helpful things I heard.

It will take time, but you will find the right combination for her.

 

[Ginger Ale]

Thank you for the replies! I certainly didn't mean to abandon the thread - life took over and then she flared badly Sunday night such that we had to take her to the ER. They've put her on a prednisone taper; she got dexamethasone while there and is feeling lots better. We've put in a call to find out when the MRI will be scheduled. We will also call for a second opinion after we get the MRI results so that we can decide a way forward.

Thanks for the support - I really feel like you folks "get it" more than other groups/message boards I've been involved in, especially the extreme individualization associated with this disease.

 

[pdx]

So sorry to hear about the ER visit. I hope the steroids work well for her while you figure out what to do next.

 

[Farmwife]

My Grace took over a year to respond to Remicade.
She has tried many med combos, so we waited to out.


We have a love hate relationship with prednisone.
It works but I hated how it made her act.
You haven't lived until your 7 year old princess turns into a tyrant!:ylol:
But it does help. :rosette2:

 

[Magnolia24]

I follow an SCD-esque diet, and while I am experiencing a flare I keep it much simpler than what I eat while I am not. While she is still experiencing regular flares it may be worth sticking with a simpler version of SCD, and not add things in for a bit... Especially because while some foods (like almond butter and hard cheese) may be SCD friendly, they can aggravate the digestive tract when there is active inflammation, and lead to flare symptoms.
I was diagnosed as being in a flare about a week and a half ago. Right now my diet consists of cooked and pureed veggies (butternut squash, carrots, spinach and other greens), meat cooked without oil, hard boiled eggs, bananas, gelatin made with 100% juice, homemade yogurt.
I am on prednisone as well, so obviously that is a factor, but I am no longer having flare symptoms, and to me it feels like eating healthy foods that give my digestive tract the opportunity to heal is huge.
Best wishes!!