Just a Quick Update

[Brian'sMom]

Not really much for a whole thread...but didn't know where to post this...and thought it might be beneficial to others on biologics and still not in 100% remission.
Brian's results came back today. And he has NO antibodies against Humira. And his levels are at a good number.
Since we started supplemental EN feeding a night, they think this will help with his mild inflammation that's been lingering. They think that his body has been under nourished and that EN will help with this. Once his body has the calories and nutrients that he's supposed to be absorbing, then it'll fight the inflammation. (At least that is what we're being told by several doctors while in the hospital). They decided to discontinue methotrexate at this time and see how it all works. OH PLEEEAAASE let this plan get us past this. We've been stuck here (off and on with the inflammation) (but always on with the growth) since Last August.

 

[my little penguin]

IF there is still inflammation:stinks:
then why stop the mtx since the humira was not reducing the inflammation on its own?
Also MTX boost HUMIRA so why reduce its effectiveness if it was not working by itself?

ALso EEN has been proven to help with inflammation but from what I read I thought your child was still eating a full diet during the day and then supplementing (750 cal) at night - this has not been proven to reduce inflammation in any study .

I realize you are frustrated ( walking in circles here too).
I am just very confused at what they are proposing as a new plan.
Are you at least seeing an endo to make sure there isnt anything going on there?

:hug:

 

[Dexky]

When were Brian's last scopes Kathy? I guess the prospect of getting off any med would sound good to me too but I wish they'd do more than just routine bloods to test their theory! I'll say it again, EJ's infl. markers have been in range since last fall but on his scopes in June, he showed chronic infl. at the top of his colon. Is there somewhere near you could ask for a fecal cal??

 

[Brian'sMom]

MLP, we see endo August 12th. And labs before mtx was SED 27 and CRP 1.3...with mtx we had one month where SED was 24 and CRP .07. Then on July 10th labs showed that SED was back to 27 and CRP 1.1...??? My husband and I were already concerned at the risks of combining the mtx with humira. So since it hasn't been helping they don't want him on it. They also said its a drug that can be added right back in if necessary. We're also working on changing doctors. Just don't want it so seem obvious. She's pregnant...so switch can seem natural.

Mark, Brian was scoped last March...hence the pentasa, the enemas, the mtx. Not sure where we go from here. The people down at Children's Mercy seemed very confident (not coming from our crazy doc) that EN, even if supplemental, has helped kids in the clinic. I'm working on a fecal cal test. They always claim they don't do them there...but this last time she seemed like she might. Probably cause I bring it up every time. I mentioned Uceris. Is that your GI's plan for EJ. Uceris? Or are you adding mtx?

I just don't like the combo thing. And our doc doesn't think it was working for him. He's 13....... Certainly there is another option

 

[crohnsinct]

Hey Kathy - you are at the point I was with O a little over a year ago. She was on Remicade but just not responding the way they would like. Every time we tried to taper prednisone symptoms came back. Doc suggested adding Mtx, I asked for EEN. EEN did it's thing and we sailed along on Remicade alone for almost another year.

She did do exclusive. All the studies I have read have said it has to be exclusive. Our doctor feels it needs to be exclusive. Although towards the end he did say that there are a lot of differing views on exactly how much of their nutrition can come from food and have the EN work at attacking inflammation. He is old school and still prefers 100% but he was going to start experimenting with the kids in his practice at 10% food and start working his way down. We are going in for infusion Friday and if he is in he usually pops in to say hi. I can ask him how his experiments are going if you would like.

Maybe it is working wit the kids in their clinic because when they are under nourished they can't really heal...make sense?

Our doc doesn't do fecal cal tests either. The one thing that frustrates me but with everything else he has done for us a small price to pay. I do have a ped who would order it for me if I really wanted it.

 

[Brian'sMom]

crohnsinct,
I'd really appreciate it you would ask about his experiments! They have Brian getting over half his food at night. He also drinks 1-2 a day of the same formula.

Its been so frustrating. Just willy nilly gi care. I REALLY liked the nurse that does the ng stuff. She's been there 22 years and is published in ng training. She seemed so confident that Brian will do better with getting this much of his daily intake from EN. I just confused right now.....

 

[Dexky]

I mentioned Uceris. Is that your GI's plan for EJ. Uceris? Or are you adding mtx?

I just don't like the combo thing. And our doc doesn't think it was working for him. He's 13....... Certainly there is another option

Actually, our GI's plan pre-scope in June was to add MTX but after scope and noting that the infl was in the large intestine, he decided uceris. He had already pxed mtx but we didn't fill it. With EJ getting so many pred-like side effects from the uceris, I don't know that it was the best decision. On the plus side, he does feel really great!!

Keep pushing that fecal cal!! Are future scopes in the picture??

 

[Brian'sMom]

We mentioned to doc that Brian has been feeling great too. No diarrhea, no cramps, no blood. etc...She keeps saying, 'Cause its in his small bowel'. MRE shows small bowel ok. Some biopsies in upper and at end of small bowel showed there had been some inflammation...but wasn't visable during scope. His pus area was his rectum and a piece of his transverse colon. (all large bowel problems). That's why we did Rowasa enema's. I just think they don't really know. Unless we did pill cam or something. We just need to get him absorbing stuff. He needs to grow. After doing night feeding for 1 week....1.5 lbs gained!! So that's good

 

[crohnsinct]

O.K. so O had infusion today and I spoke with GI about EEN and food and a bit about Brian. Here is basically what he said:

He now starts at exclusive EN. IF the patient tolerates it and shows improvement over a week or so he will allow 10% of calories from food. After another week another 10% for a total of 20%. He has never been able to go above 20% and have a patient continue to heal.

The 10-20% calories from food are NOT whatever the patient wants to eat. It is basically his reintro diet. The first week 10% of a 2400 calorie diet equals 240 calories and that is one meal of grilled plain chicken and white rice. They eat that for an entire week.

Second week introduce another chicken or turkey or fish and white rice meal of 240 calories.

Each week he discusses changing one of the meals to something different but it is always low res and plain and the patient sticks with that food the entire week.

He told me with some docs it depends on what other meds a child is on. If at dx, the child is terribly inflammed and waiting for another med to kick in he will only do exclusive the full 6-8 weeks because "inflammation pisses me off". His words exactly. If you are trying to give another med a boost (like O did) and the child isn't exhibiting symptoms then he will try the 10-20% food intro but really prefers if you would agree to exclusive.

I hope this helps. Glad to hear he is gaining weight. That is an awesome sign. O didn't gain that quickly!

 

[LJS]

OK, I'm going to butt in here. My son's GI put him on supplemental EN, getting 80-85% of his calories/nutrition at night through NG tube and letting him eat anything he wants during the day. He believes this DOES get rid of the inflammation and help growth - my son's 2 issues. After 5 weeks or so, my son was up 5 lbs and looked awesome. As I mentioned in another post, he's currently "on hiatus" at sleepaway camp and is just maintaining with drinking one can of peptamen jr/day. We go for bloodwork on August 23rd and I'm hoping for good results, even remission. He's still on azathioprine with allopurinol. I've been hoping to avoid MTX and/or biologics, hence the EN.