What does treatment look like for you?

[Goofychicken]

I've been doing some reading around the site and I'm kind of shocked by just how many different approaches there seem to be to managing this disease. I know that everyone's presentation is different and everyone responds to the various medications differently...

Maddie has been on Imuran for 4 months now and has reached what her GI thinks to be an optimum dose of 2.5 mg/kg once per day. She also takes raniditine twice a day and is on iron, multivitamins and vitamin D.

When she flares the NG tube goes in. We do six weeks of EEN with Ensure Plus. She is allowed clear fluids (broth, popsicles, suckers) and nothing else. The first four weeks are exclusively tube feeds, which we run for 12 hours overnight. The last two weeks we maintain her tube feeds while starting to introduce a low residue diet. The tube comes out at 6 weeks and we continue the low residue for another month, at which time we wean her back on to a "normal" diet. The NG tube is a MIRACLE WORKER. I'm so happy that that course of treatment works just as well for her as prednisone would. She may not avoid pred forever, but given the nasty side effects, I'm so grateful that we don't have to use it right now.

Other than that and her medication schedule, that appears to be all we need to do for now to get her out of a flare and keep her in remission. I'm curious to know what a typical treatment regime looks like for your child and how they compare to what we do!

 

[Clash]

EEN isn't as widely used in the U.S. as it is other countries as a first line treatment, possibly due to compliance, but that is slowly changing.

I do know one of the top IBD children's hospitals in the US now has an EN protocol, it isn't exactly like the European protocol but they are more widely using it now instead of steroids. EEN seems to have better efficacy with children and can lose efficacy after repeated use. You can find studies about this in the research thread in the Parents forum.

My son didn't have improvement with steroids and was placed on Remicade a month or so after dx. The steroids were used to keep things in control between the day of his scope by an adult GI and the 1st appt with a ped GI(about a 3 week wait). He got no benefit from steroids.

Remicade was his miracle drug and he went from sickly, bed bound constant pain to normal teen after the first dose. We realized after the loading doses that he couldn't make between infusions without symptoms coming back. So we tweaked dose shortened schedule and eventually added methotrexate. That was over the last two years.

Unfortunately, his disease has progressed and he was deemed failure to thrive due to weight. So he has been on 90% EN 10% food intake for 4 weeks, as of today he has gained 18lbs. Woohoo!

He isn't experiencing any CD symptoms right now but from a CT we know his disease isn't well controlled so we will be discussing the next step in treatment plan at his GI visit next week.

Even after this period of 8 weeks with 90/10 EN he will continue nightly tube feeds at a lower percentage as a maintenance dose to ensure growth and nutrient intake.

It is so great to hear how well your daughter does with the EEN. A lot of GIs in the US have been resistant to it and I hope it is really starting to catch on now!

 

[Goofychicken]

I think that our GI is really just starting to use it now. Another little boy who is under his care who was diagnosed a year earlier than DD has never been on it. Our pediatrician worked at the IWK Children's Hospital in Halifax, NS and she was telling us it's a very common treatment there and that more and more doctors elsewhere are starting to become more familiar with its' benefits. I don't know much about it at this point (we're really just starting to read now that we've kind of come to terms with her diagnosis), but I'm sure there's tons of information to be found on here!

 

[SupportiveMom]

Treatment looks pretty lousy right now to answer the question.

Right now it looks like Humira and Methotrexate which wasn't the first tried methods but what we were left with when others failed. Prednisone was D's buddy for 1.5 years so glad to say goodbye to that frenemy. Looking to add EEN and am trying to be optimistic it will work &/or we get approved for a trial. Found out today our doctor already submitted us to two trials as candidates and we were denied due to the anaphylaxis reaction to Remicade.

Right now we are just putting band-aids to flesh wounds.

 

[Jmrogers4]

We started out with pred and Imuran 4 years ago. EEN wasn't even discussed or given as an option. He went home from scopes with a Rx of Prednisone and we started Imuran 2 weeks later after blood tests to see if he could process the Imuran.
Imuran took care of a majority of the symptoms but he still did not gain any weight or grow after weaning off the pred. Tried Methotrexate, it worked he grew a little but we had to stop after a few months as he had a reaction to it. Went back to Imuran for another 1 1/2 - no growth or weight gain. Tried LDN for 1 1/2 year reached our first true remission he grew and once we added supplemental EN he even gained weight. But then C-diff entered the picture and threw him into a flare and GI gave him the option of EEN or Pred. He choose EEN it worked to get a majority of symptoms under control but his FC numbers kept increasing and MRE showed inflammation in small intestine which led us to starting remicade in Jan. So far it has been a miracle drug he if finally eating. For 4 years I fought with him to eat and had to remind him to eat as he was never hungry and when he did eat he only ate very small amounts.

 

[imaboveitall]

V used EEN/EN as sole treatment for the first three years after diagnosis.
She was very very sick at diagnosis, near death, truth be told. Starving slowly.
She got a great quality of life with EN, excellent nutrition and no delayed growth. She grew, gained and developed like crazy.

However, symptoms began to affect QOL after three years so drugs were started and one by one, failed.
As SupportiveMom said, treatments are bandaids here, V gets sick no matter what we do. I don't think most cases are as refractory as V's, though.

 

[Maya142]

We have been told about EN (80% of calories from EN, 20% from food) but my daughter is very against it even though she's now underweight.
We started on Remicade and methotrexate and Entocort and she did well on Remicade while on mtx. Once we stopped the mtx, she went downhill. We're now trying Humira and Sulfasalazine. Her Crohn's is in remission(!!!!), and we're trying desperately to get arthritis in remission too.
We did a course of Flagyl when she flared which seemed to help.
I think it truly is a different journey for everyone, even though we only have a few drugs to choose from!

 

[Mehita]

When symptoms first appeared, DS was put on pred and nothing else. He did have a short three week stint of EN that didn't go well. We did pred off and on for two years. Had I known then what I know now... ugh. He ended up with a stricture caused by scar tissue and had to have a small bowel resection last year. Pentasa failed him, Azathioprine failed him, and he became pred dependent. Last November we switched to Remicade and he's been in remission for four months and pred free for six months.

I, too, find it very interesting how different the approaches are between doctors and countries. We are on our third GI and even between the three of them all of the approaches have been different.

 

[my little penguin]

DS was placed in pentasa at dx while waiting a second opinon (4 weeks).
2nd opinion wanted pred and 6-mp.
I asked our Gi for EEN and 6-mp from stuff on here.
DS was his first patient to try it.
DS did EEN for 9 weeks then switched to supplemental EN .
6-mp lasted five months -went to his liver -lowered the dose added allopurinol but never got back to therapuetic levels without liver numbers going back up.
After 8 months total with a round of pred and EN plus asacol
Had a scope
Switched to Mtx plus more pred plus EN plus asacol
Never could wean pred since he got vasculitis with every wean.
Switched to remicade plus en and asacol
Allergic rxn
Switched to humira plus en and probiotics and other lower end creams etc..
Now on just humira plus en and probiotics .
So no meds left
Just lots of fingers crossed .

 

[DustyKat]

My daughter went undiagnosed for 18 months and was finally diagnosed in theatre. She had a resection, which immediately induced remission, and she has stayed in remission since, it will be 8 years in July. She has been on Imuran since her diagnosis and various supplements.

My son was diagnosed very quickly, 2 weeks from go to woe. He was commenced on Prednisone, Flagyl and Imuran the day of his diagnosis. Unfortunately he was less than 3 weeks post diagnosis when he developed complications, a micro perforation, fistula and abscess and surgery quickly became his only option. He continued with the Pred course, had a 6 month course of Flagyl, 3 months of Augmentin Duo Forte and has remained on the Imuran, he also takes various supplements and Pentasa was added about 9 months ago.
He had two hospital admissions totalling about 6 weeks and a pigtail drain in for 3 months. His third admission was for the same surgery my daughter had, that was 3 years ago, he actually had his anniversary on the 7th of this month, and he too has been in remission since his surgery.

Dusty.

 

[CDJ]

My son was undiagnosed for around 18 months as his symptoms didn't present as crohns. Luckily when we did see a consultant he was an expert in his field for crohns and diagnoised straight away.
My son went straight onto prednisolne and Pentasa, weaning off pred and onto azathioprine. He went into a flare around six months after diagnoises and was put straight onto modulen [ een feed ] for 6 weeks. It does seem to be a first stage in the UK to use it as it is less invasive than pred and gives the bowel time to rest. This worked really well.
Unfortunatly the second flare he had last year the modulen didn't work. He actually lost a further 6 kg while on it.

Exclusive EEN can be hard, especially to start with. My son was drinking 2000 calories of it a day in beakers, which when the taste isn't really good, is very hard to keep going. Here they aren't allowed anything apart from 4 clear boiled sweets a day plus the modulen, so hard going for a child.
My son was tube fed with it last year, and though it didn't work, it was easier as he didn't physically have to drink it.

 

[polly13]

Lucy started with flagyll and cipro, prednisone next, prednisone + 6mp next, 6 mp with cipro, flagyll and augmenton at various intervals, remicade + 6mp and now humira+methotrexate is finally working