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Pilgrim

Pilgrim

Joined
Jul 24, 2014
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We've had a few segments of EEN, and both times we reintroduced food (once was low-residue the other was specific carbohydrate diet) she started showing signs of a flare within 2 weeks of reintroduction.

As soon as we go back on EEN things look good enough, she gains weight, energy improves, and so on.

We are discussing treatment options next week. GI has mentioned Methotrexate, Remicade, and Humira.

Remicade is out. We'd have to travel over 8 hours round trip to the hospital for the infusions and we have other children to juggle. Just can't do that unless there is no other choice.

So we are considering MTX and Humira. But I wonder if we shouldn't just keep her on EEN indefinitely because she is so young (no trials on kids her age for Humira not sure about MTX). AZA and 6-MP are out for allergic reaction.

Also concerned about expense.
 
Sorry to hear that but I hear that often as soon as food is introduced flare/symptoms return. I don't know about using it as a maintenance med though you need to be careful of simmering inflammation. Tesscorm's son was on EEN for a couple of years but eventually went to remicade.
My son was on EEN for 8 weeks and his symptoms went away but fecal calprotectin taking before EEN and one taken right after completing showed raised levels he felt great but simmering inflammation was going on so you would need to make sure she is consistently monitored for that.
I think there was another mother Ethan's Mom who had her son on EEN exclusively but I don't think she has been around much (hopefully that means her son is doing well on it) He was quite young as well.
I have no experience with humira my son is currently on remicade and it has been a 100% turnaround for him. Methotrexate worked well to control his disease for the short time he was on it but had a reaction and had to stop.
farmwife's daughter has been on humira and she is close in age, there are some other young ones on humira as well.
I hope you find the treatment that works and brings her remission quickly and for a long time.
 
Ds has been on all three
MTX made him sick the first time because it was not enough by itself
Remicade was great but he had allergic reactions

Humira is good but took 4-5 months to work.
The medicine is said to feel like a wasp stinging over and over again.
Ds used to scream such a gut wrenching scream DH couldn't take it.
We now add lidocaine into the humira syringe which helps some but not a lot.
Ds gets his every 10 days - he used to be every 2 weeks.
EEN sounds good on paper but I know too many kids who have had to stay EEN for other Gi issues. This causes behavioral issues ( since kids are designed to want to eat ).
It's different for adults they can process things better but still hard.
I suggest if you go this route to try as an adult drinking nothing but shakes for just one week while you cook and watch everyone else eat .
It might make your decision easier .

While breastfeeding Ds I had to avoid all milk eggs soy nuts and a few other things
I did this for almost a year so I get how hard it is .

Never an easy decision
But sometimes it is made for us by merely whatever med actually works is the one you go with .
 
Difficult decisions for you. It would be good to remain on EN, but it can be really difficult. As for medications, I have only had experience with Mercaptopurine but if it was my child I would opt for methotrexate just because I have read how much the Humira hurts. Good luck
 
We've tried all three. Remicade was by far the easiest, but I understand that traveling is hard .
My daughter had bad side effects with MTX (severe nausea and dizziness for two days after the shot) but she's the exception, not the norm. Most kids tolerate it just fine. The shot is not painful and is a very tiny needle. We used to ice before the shot but now don't bother because she says it doesn't hurt. Zofran helped with the nausea and so did daily folic acid.

Humira is a very painful injection. Both my daughters hated it but eventually got used to it (but they were much older than your little girl). We used ice and let them watch tv during the shot but it was still very painful.

There are Humira trials in juvenile arthritis in kids your daughter's age. I know that's not exactly the same, but it was judged to be safe for 2-4 for years olds with juvenile arthritis I believe.
Here are some links in case you're interested:http://www.ncbi.nlm.nih.gov/pubmed/24487484
http://www.ncbi.nlm.nih.gov/pubmed/25086629

Good luck with whatever you choose! Med decisions are so hard.
 
My son was on EEN for six weeks and then reintroduced foods. We were given a reintro diet by Toronto's hospital for sick children and I have posted it, I believe its in the Kids on EN in the Kid's diet subforum... (if you want the diet but can't find it, let me know).

After six weeks, we did reintroduce all foods but he stayed on supplemental EN for two years - so, normal diet during the day and would then ingest formula overnight. His supplemental amount was approximately half of the EEN total (ie while on EEN he had 3000 cal/night, 7 nights/wk; on supplemental he went to 1500 cal/night, 5 nights per week).

The exclusive period took him into clinical remission and inflammation did disappear from a number of areas, however, not all inflammation was cleared. Supplemental EN maintained this status and kept him in clinical remission. Supplemental EN (exclusive or supplemental) does seem to have some success at maintaining 'some' control (but not completely treating!). I don't know how/why it works - if it's due to the nutrition that is ingested or the healing properties or if the extra calories from the formula means you end up eating less food allowing some bowel rest, etc??? I've even read a study indicating that using supplemental EN together with remicade increased remicade's success considerably - but I don't believe the study provided any definitive reasons for why it worked.

I do know we did not alter this schedule AT ALL!! He had the formula 5 nights per week, without fail! If we went away for a few days, I would skip the 2 days 'off' from the week before and after to make up the shortfall. If we went away for a longer period, where I wouldn't be able to make up the shortfall, I took formula with us.

So, regardless of what you choose re meds, I would very much encourage you to continue with supplemental EN. But, I agree with MLP in that trying to maintain exclusive EN for the long term would bring a different set of problems.

As far as meds, my experience is only with remicade. But, something to keep in mind... dosages/schedules may be altered with any of the meds. And, if you do decide to go with remicade, remember the 8 week schedule may be shortened at some point. If it's too difficult to do it every 8 weeks, it will be even more difficult every 6 or 5 weeks. And, deciding 'this isn't working, let's try humira' will not be a good option because if you do, you will likely not be able to return to remicade if humira ever stops working.

As much as I'd hate for any child to have to deal with the pain of the injections, it might be better for you to save remicade for a time when you have no other options (or it is easier to manage).

:ghug:
 
EEN can work just as good as prednisone if not better as results do show mucosal Healing. However, just like prednisone, it only works for while you are on it. Some peole are able to experience remission for a few weeks, some a few months but the disease does always creep back and it is the silent damage it is doing before you get into a full on flare that is concerning.

We use EEN in place of steroids but our daughter is also on Remicade and added Mtx for psoriasis and psoriatic arthritis.

Our doc recently told me that there is some encouraging research coming out of Isreal with a period of EEN followed by a special diet. You cycle between the two. He said CHOP (Children's Hospital of Philadelphia) is also having some success with cycling between the two. If you were to try this, you would have to be vigilent with testing (bloods, fecal cal etc) to get ahead of any inflammation. Heck! Don't we all have to do that anyway?

Sorry I can't be of much service on the meds as my daughter is on Remicade and you have discounted that (understandable). She does oral Mtx and doesn't have any problems with it.

Good luck!
 
These decisions are so difficult and I'm terribly sorry you are having to make them.

My son (3 1/2) has done Remicade and is now on his 5th shot of Humira along with Imuran. I honestly don't think at this age he will get used to shots or infusions, I think it all scares them when they are so little.

For both the Remicade and Humira it did take some time to get it approved through insurance considering his age, letter to reconsider the denial and peer to peer.

The cost was about the same for both medicines. For remicade we only paid our co-pay (we had infusions at his ped. GI office) however, we were making a 5 hour round trip every 8 weeks. Humira we pay our co-pay to visit the GI for labs in addition to $50 to cover a month of Humira.

I don't know about the EEN, our doctor has mentioned it as our next step.
 
I don't think EEN is a realistic permanent solution. Humira works for my son but it is painful. Usually, insurance approves Humira only after Remicade fails, but because of the distance involved for you, you might be able to get around that.
 
Ya, Humira hurt but she put up with it for the right kinds of bribes.:thumleft:
We only use EEN when she flares in place of pred. We've done it twice with success but for the other times we still had to do a pred burst.

What about EEN and mtx for awhile? Or EEN, low dose pred and mtx? Use the EEN to see if mtx can do it alone? Just ideas.:thumright: Most need something more like Remicade or Humira.

Remicade is better for grace but I understand the travel/kids issue.
 
Might you have the option of having a home health nurse come to your house and doing Remicade infusions there? I know some adults on Remicade who do this. Just a thought....
 
Great suggestion Mehita! I know many people do home IVIG infusions and that's something we may look into in the future. After the first few are done in the hospital (and all goes well) the home setting is usually an option.
 
I'm not sure if that could be done with remicade?? Doesn't there need to be a doctor on site because of possible reactions?
 
Also, in the US, you don't have to use the hospital the GI is at to have remicade infusions. Some use hospitals closer to them and only travel for the Dr visits. Also, there are IV clinics as well. I know Tesscorm has a son that may have made use of these in Canada.

We drive around 6 hours round trip for infusions. We have the option to use the local hospital but so far I have allowed C to dictate where his infusions are and he has chosen the GI's office.

I know in some rural areas home health is sent out to do infusions in the US. I've only read about adults doing that on this forum but maybe it is available for children as well. Though I'm not sure about Canada.
 
Tesscorm I wondered about that too when I read a thread discussing it. I wonder what the protocol is? I do know the thread I read seemed to imply it had been made available due to the rural area and making traveling back and forth a hardship.
 
Pilgrim, I'm assuming your GI's office would be aware of local centres and that's why you've been told it would be 8 hours??? But, for your info, S's infusions have been coordinated by AIM Health Network (we were connected with the service through the GI's remicade nurse). AIM was recently bought by Inviva but, for some reason, I can find AIM through Google but not Inviva??

As I said, I'm sure your GI would be aware of local clinics BUT, on more than one occasion, I've found that it's been better for me to check for the info myself! It might be worth looking up AIM/Inviva and asking them if there is a clinic closer to you??
 
IVIG has risks of reactions, just like Remicade. We pre-medicate (and post-medicate...not sure if you do that too) with Tylenol and Benadryl. Our Rheumo wanted the first 4 infusions to be done in a hospital setting, but after that we had options. IVIG infusions are done every 3-4 weeks, so maybe that's why they are done in the home as opposed to every 6-8 weeks with Remicade. But it certainly doesn't hurt to ask and find out what options are available.
 
You definitely can have Remicade infusions at home. I met a couple parents whose kids have them (also IVIG!). I would imagine if there's a reaction they'd give her steroids and IV Benadryl and take her to the hospital if necessary.
That really is a great idea Mehita!
 
Maya142, yep I definitely remember pamphlets about home infusions at the rheumatologist office. Maybe it is something that hasn't gained as much main stream exposure in CD as on the rheumatologist side? I was just talking to my Mom and she said her RA offered at home infusions as an option for her when she first started remicade. She said the rheumatologist said loading doses would be done in office and home infusions could follow.
 
That must be it, Clash. Rheumatologists and GIs are weird. It's like they live in different worlds. For example, we have had several rheumatologists say to us that the Remicade levels/antibodies test does not exist (??!) even though we've had it done by M's GI a couple times.
 
Not sure if different states have different laws but we were told, Kansas at the time, there must be a doctor on site. Our ped GI only did certain days to ensure she or her partner were there. She actually had to cancel on one occasion since she would be leaving before the infusion was done.

We just had the antibodies test for Humira today, hope it gives us some insight. We had to go to a different lab other than the hospital to have blood drawn and then it goes through Prometheus. ADA answer for Humira and IFX answer for remicade I think.
 
My daughter did Humira and MTX and didn't have any side effects. That being said, they didn't work well for her (but nothing did). The shots did seem painful...but we watched her favorite show and snuggled her tight. So glad we aren't there anymore! Hugs for your family!
 
Thank all of you so very much for discussing your experience and offering advice. It is truly a gift to have met so many here who can speak from experience. I really appreciate it.

When he first brought it up, I asked the GI about doing Remicade through our local hospital and he said he only allows that if the patients have reached 100lbs. Otherwise he wants them in the Children's Hospital where he works. So, that won't be an option for us without the travel.

Fecal Calpro on EEN was 1800 while she had no other symptoms. So, it is entirely possible there is simmering inflammation. It's just that I didn't refrigerate the sample and am wondering if that might have messed up the results. We are supposed to repeat shortly.

I like the idea of continuing to use it instead of pred which we have avoided so far.

Yes, the psychological aspects of EEN are tough for long term use. Agreed.

So, maybe adding MTX with the EEN is a good combo, if it works we could add food and it is considerably more affordable? I'm guessing.

I'm open to Humira too, but the shots sound tough. I wonder if I could take her to a nurse for those so I wouldn't have to do them. Anyone do that?

cre - it is interesting that your docter mentioned EEN as the step AFTER Remicade and Humira. I've never heard of it done in that order before and I wonder why that is.

Thanks Maya for the links to the JIA Humira trials in young children as that helps me quite a bit to work through the info.

I meant to reply as the responses came in, but I found that as I was reading them I got a little overwhelmed in my head. This is a stressful time.
 
Samples for Fecal Cal are stable at room temperature for u to 5 days. I have actually heard as high as 11 but I wouldn't push it. Putting it in the fridge or freezer if you are delayed in getting it to the lab us advisable. So I am sure the sample wasn't compromised.

As for a different center...our GI is a control freak. He won't let our daughter go elsewhere for infusions. Maybe he would if it were a hardship but doubt it as there are quite a few patients who travel from many tates away. He said in addition to the safety of being in his hospital, he likes his trained nurses to see the kids and asses their well being. A few times we got a call after infusion from the doc or the doc was called into the room to look at O or other patients. They are well trained in what to look for and he relies on their expertise.
 
We had the first Humira shots done in her pediatrician's office when we were learning how to give M them. I bet you could take her to her pediatrician and someone there could give her Humira, so she doesn't associate you with them. It's an easy shot to give, except that it's very painful.

I have heard Lidocaine (like MLP said) helps quite a bit. We spoiled both girls too, after the shots - TV, cake/ice cream etc.

There are PLENTY of toddlers with JIA - unfortunately it is quite common in that age group. I have met several parents of little ones on MTX or Humira/Enbrel/Remicade.

Sending HUGS!
 
crohnsinct said:
Samples for Fecal Cal are stable at room temperature for u to 5 days. I have actually heard as high as 11 but I wouldn't push it. Putting it in the fridge or freezer if you are delayed in getting it to the lab us advisable. So I am sure the sample wasn't compromised.
Click to expand...

Is denial a stage of parenting with this disease? Because both my husband and I had convinced ourselves based on no research at all the sample was just "off" after 3 days at room temp.:quack: (I was looking for an ostrich smilie, but the closest I could find was a duck.)
 
Well, I'll add to that, to balance out being an ostrich, her symptoms are really minor on the surface (stools are infrequent, doesn't complain of pain, can play, small amounts of blood) and her labs are generally pretty good.

One week before he called with the calpro result, he told us she was in remission.:yfrown: But it seems there is more than meets the eye with her Crohn's.
 
"de Nile " is a very long river all of us parents have been in too many times.
Most nurses train you but you have to give it at home.

Other thing to remember she is 4 so she may not know what normal feels like.
Some kids get used to it :(

Ds has never had FC that high
Highest was 238 but we didn't check till after he had been on remicAde and over a year after dx .
 
Yep! We swim in that river often. Live in our bubbles. Sometimes the disease progresses slowly and we just get used to the new normal and forget how good things really were...until we really see true mucosal healing remission...then it is "what was I thinking guilt" replacing denial!

This disease can be sneaky also and that is just not fair! There have always been a few on here who have little to no symptoms but inflammation is causing damage inside. Seems recently there have been quite a few in that boat. Frustrating! :voodoo:
 
We liked that river too!

The highest FC result C has had was 1700, that was during a flare. With simmering inflammation seen on MRE and biopsies during colonoscopy his result was 300 which doc said was on par for simmering inflammation.

The thing is up until his surgery we thought C had mainly simmering inflammation. The surgeon was shocked at how bad the location he removed was.

So, now I just pretty much live in my bubble...warm and safe...only peeking out to see what the weather is like!
 
Sorry I'm late to the thread... D was on the MTX & Humira combo. It is the first thing that started healing for her. It wasn't strong enough for her in the end for her symptoms, but it definitely started the healing process after she had the reaction to Remicade. I admit it took a bit of getting used to. Mtx wasn't too bad but Humira was a struggle for D. So glad to be on Simponi now. She does the injections herself.
 

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