Tube Feeds no longer working.....Humira or Remicade??

[middlemcmom]

My Son is 13y/o.
He was 62lbs 4' 7" (hemoglobin was 9) when he was diagnosed with Crohn's Disease in February 2013.

Our treatment of choice was enteral nutrition. He inserts the NG tube each night and takes it out in the morning. Started out 7 nights on 3/12/13. Went down to 6 nights 6/18/13. Went down to 5 nights 10/21/13. He takes 1000mg Pentasa 3x daily, 40mg omeprazole, Iron & fish oil.

Doing "beautifully" per his dr. He hasn't had ANY pain. I can count on 1 hand the times he said my stomach feels kinda "grumbly" in a year! Pain is a "2."

11/27/13 hemoglobin down to 11.5 FEELS fine.
1/30/14 hemoglobin 11.8 / CRP 2.5/ SED rate 11/ Cal protectin 473
Dr. afraid disease is "Smouldering" advise to go back on tube 6 nights for 4 weeks, get bowel ultrasound, MRI & 2nd opinion.
3/4/14 Hemoglobin 11.6 /CRP 3.3/ SED rate 9/ Cal protectin 1335 MRI shows inflammation in a loop of small bowel. Starts Cipro.
3/21/14 103lbs 4'10.47" repeat labs Hemoglobin 10.8/ CRP 3.5 /SED rate 25 He is only drinking a Boost & Doing his tube feeds 6 nights a week!! Still has NO Pain but his numbers are terrible!!

My son gained 41lbs. & grew 3.47" since November 28, 2012. This poor kid has done everything we ask of him.

2nd Opinion Dr. wants to stop tube feeds & start Humira or Remicade. IDK what to do!!!!!

ANyone have a situation like this?? Do you have your child on these Biologics?? Please HeLP!!

 

[Clash]

Tesscorm, another member, has a son that has gone through something similar. He was a bit older when dx'ed but used EEN to gain remission and EN as nutritional maintenance. I don't believe he was experiencing symptoms either but tests showed simmering inflammation and he moved on to remicade.

Each child is so individual. My son started out from dx on Remicade. He was very symptomatic before remicade and completely asymptomatic afterward. It took tweaking the dose and schedule and then we added methotrexate. But we recently found he has disease progression after two years on remicade. His labs have never been indicative of disease activity but fecal calprotectin was and for sometime he was asymptomatic with normal fecal calprotectin levels.

He is on EN now and we will be discussing treatment options in two weeks with the GI. I am truly grieving the fact we remicade is no longer working, it gave me my son back and now I fear he will struggle to find another med that worked as well.

By tagging Tesscorm it should notify her and hopefully she will be along shortly.

 

[my little penguin]

DS has been on all three and more drugs including EEN pentasa remicade and now humira.
Simmer inflammation can cause scarring since the cycle tends to repeat itself over and over again. The scarring can lead to other things so definitely something to avoid.
The average growth rate before puberty is above 3 inches a year .
That is something else to consider .
My kiddo is only 10 and weighs 80 lbs at 4' 8 1/2". He grew over six inches and gained 30 lbs due to remicade/humira plus en ( he drinks peptamen jr x2 day every day ).

If en has stopped the inflammation which by the sounds of the MRI it hasn't then he probably needs something to stop it before the damage gets worse.
The window for growth is also closing .
DS is on a biologic and en since en use reduces the relapse rate on biologics .
Plus it just helps with nutrition.
My son drinks it all orally no tube and has for almost three years .

Good luck

 

[imaboveitall]

Violet was very similar.
Enteral feeds were her SOLE treatment for three years.
She gained, grew and went through puberty and never had a nutrition issue despite active disease the entire time.

She then had to start drugs and has failed them all. She is steroid dependent.
However she still does formula feeds, for nutrition if not anything else.

I would NOT stop tube feeds. They are the reason your boy gained much needed weight and nutrition. Her doc has never recommended stopping feeds, just ADDING drugs.

 

[my little penguin]

HEIGHT

The beginning of the increase in growth velocity is about age 11 in boys and 9 in girls but varies widely from individual to individual.

The peak height velocity occurs at a mean of 13.5 years in boys and 11.5 years in girls.

Pubertal growth accounts for about 20% of final adult height, a total averaging 23-28 cm in females and 26-28 cm in males.

The average growth spurt lasts 24-36 months.

Growth during the year of PHV in the normal female averages 9 cm/yr and varies normally from 5.4 cm to 11.2 cm. In the normal male, the PHV averages 10.3 cm/yr and varies normally from 5.8 cm to 13.1 cm.

Males on average are 12-13 cm taller than females primarily because of the 2-year delay in bone closure as compared to females. This accounts for about a 10-cm difference between the two sexes; in addition, males also have 2-3 cm more of growth during their growth spurt.

From:
http://www.usc.edu/student-affairs/Health_Center/adolhealth/content/a1.html

 

[Patricia56]

How great that your son has improved so much. It's not easy to do an NG tube in/out daily so he must be a very courageous young man.

Assuming he's 13 yrs 6 months, he is at the 7% for height but the 42% for weight. Without more information on the parent's height and growth patterns and having a bone age done, it's hard to say to what extent his growth this past year is pubertal or not. I expect his bone age is delayed which would mean he has more time to grow than he would otherwise. If for no other reason than to encourage his growth I would continue some level of EN. A consult with an endocrinologist might be helpful to you in deciding to what extent the height is something to be concerned about but until you get the inflammation completely under control it is likely he will have some growth delay.

I think you do need to add meds and given the severity of his growth delay and the persistent drops in hemoglobin he has at least moderate to severe disease. That's typical of kids (as opposed to adults who often have a wider spectrum of disease at diagnosis).

As for what med, that depends on you and your son. If you took a step up approach then I would say you want to look at methotrexate which is usually taken by IM injection once a week. Methotrexate takes several weeks to become effective and may not be enough in a child with mod/severe CD.

Starting with biologics, or the top down approach, is very likely to kick him into remission, sometimes as soon as the loading doses are on board. Recent research suggests that this is most likely to get the best results in the "long term". This is a relative term since it is based on studies that go out about a year. I don't think there's anything with longer term endpoints for children yet. If you take the adult research and apply it to kids (not always a good idea but it's what we've got) then he is less likely to need surgery and to be in a sustained remission on biologics given the severity of his disease. At least that's my understanding of the research literature. Hopefully my little penguin can comment on that too.

And we've had about 15 years now with kids on biologics, mostly remicade, and the sky has not fallen. There's a small cancer cluster that scared everyone that struck mostly teen boys. It was initially thought to be associated mostly with use of biologics. But the research on that has shown that azathioprine, a widely used med in the same class as methotrexate, is mostly highly associated with the small but definite increases in the risk for lymphoma and that combining it with a biologic probably increases the risk further. So I would suggest staying away from AZA/6-MP/Imuran.

As for Humira vs. Remicade, the main difference from a parent's point of view is method of administration. Many people like Humira because it is convenient. You do injections by pen or by syringe at home or anywhere you happen to be every 2 weeks. Remicade requires IV infusions every 8 weeks for most patients. Most people find Humira shots moderately painful. They are done in the belly, top of the thighs or back of the arm. My son did Humira for 2 1/2 years and finally stopped because the shots were so painful he just refused to continue them. He is now on Remicade and likes that better so far.

Best wishes with your decisions. They are hard ones and we've all been there so feel free to ask away. In the end it has to be the choice you are most comfortable with given that you aren't going to be happy about any of the choices.

 

[Maya142]

Good luck with deciding! I'm so impressed with kids who agree to use ng tubes, I wish my daughter would consider it!
We have done both Humira and Remicade and both my daughters preferred Remicade (even though it's sort of inconvenient).
The decision to go to biologics is hard but it was one of the best decisions we made for both my daughters. Neither of them have ever had side effects from biologics, they don't even get sick more often. I only wish we had made the decision sooner, we could have spared my daughters (especially my older one) a lot of pain.

 

[Tesscorm]

Welcome to the forum! You've already been given great advice. It's tough making these decisions but I'm glad you've found the forum - you'll find tons of info and advice here! :ghug:

My son did exclusive EN to induce clinical remission and then maintenance for two years to maintain his remission. And while he had very few outward symptoms and gained weight, height, etc., MREs continued to show inflammation. While his inflammation did lessen when compared to diagnosis, the EN was able to only 'control' from a certain point but wasn't enough to completely heal and eliminate all inflammation. When we transferred to an adult GI, his new GI was adamant that allowing the inflammation to continue to simmer, would eventually lead to future complications.

Definitely a tough call to add these when you look at your son and he looks and feels great and just don't see the need for meds!! And, just to add to the frustration is that there's no real way to know 'now is the time to start meds!', from all I've learned, with some people, things worsen very slowly and with others, very suddenly. :ymad: As much as I hated to do it, my son did add remicade just over a year ago.

In our case, our GI preferred remicade/humira over 6MP/Imuran/Aza or methotrexate because he felt the biologics work best and why not go with the best right away? I don't recall exact details but know I've also read that remicade (or, perhaps, any biologic??) may have greater success if used within one or two years of diagnosis and if used as a first treatment. I was also aware of the increased cancer risk of combining immunosuppressants and then biologics and, I suppose, another of my justifications was that if we would eventually be moving to a biologic at some point, then why not avoid the extra risk of doing it after using an immunosuppressant. However, keep in mind, whether alone or as a combo, in EITHER case, the cancer risk is very, very low.

I also very much encourage you to keep your son on supplemental EN. I believe my son benefited greatly from the nutrition he gained through the two years of EN. He's now gone away to university and, while he didn't want to continue the tube feeding while away, he continues to drink 1-2 Boost shakes per day.

Good luck!

 

[crohniekid]

Middlemcmom...
I hope you keep us updated on what you decide and how it works for you!! I feel that we might be heading down that road also. R failed to achieve even clinical remission on EEN...although his bloodwork did improve somewhat. We are adding Entocourt (a steroid) to the mix to give his Imuran time to reach therapeutic levels (he started that 2 weeks ago).
Does your son have a preference for which drug

 

[Farmwife]

Hi and welcome.
My Grace also did full EEN but we had to add drugs like humira and methotrexate.
I'm a huge fan of EEN but sometimes the body still needs help.

Hugs