Crohn’s - Prometheus

[KRX]

Crohn’s - Prometheus

I saw a 2011 post on this and hope it’s alright to start a new one.

My gut is questioning if my son's Crohn’s dx is correct. Please share any information.

My son was dx with Crohn’s 1 year ago at age 17. The EGD show some ulcers and later a colonoscopy was done that showed inflammation of the terminal ileum and some villi blunting. The biopsy was by radiology was considered negative. The doctor then submitted bloodwork to Prometheus and my son has markers for both Crohn’s and Celiac and his antibodies were elevated for Crohn’’s. My son’s case was taken to committee for difficult cases and a different radiologist read it as positive.

My son only presenting symptom was upper abdominal pain. No anemia, or other issues often associated with Crohn’s. Budesonide and prednisone did nothing for him and he was started on Remicade. After 6months on Remicade his sx have not improved and last EGD showed ulcers and my son was not cleared out enough at them time to get results on the Lower GI. The doctor felt Remicade was not working the way it should. (antibodies and level checked were fine). I wanted to try dietary intervention and he was put on a the SCD diet (did not help), followed by Boost Plus only for nearly 3 months which worked and then we started reintroducing foods and he did very well on GF and low fructose diet until he got to the point that he was sick of being on a restrictive diet as a teenager (3 months on a liquid diet for teenager is a lifetime). It was also suggested to try tube feedings at night and eat normally during the day (my son vetoed). Remicade is still NOT controlling his pain and the doctor just rechecked antibodies and levels again which are fine (test is a pain to get through insurance). Methotrexate was started and the doctor wants him have his next treatment and then get re-scoped in June. Depending on what that shows he recommends Vedolizumab (another $20K drug) and biologic.

I’m sorry this is so long. My son goes to college in the fall and I hate the idea of him either staying on his current treatment or the recommended due to the immunosuppression (he is getting constant colds). I would like to find some medium ground during his college years.


Natural solutions may not always be the answer however i would have like to try to see if some dietary changes (not extreme) and supplementation would help and then during his college years if needed put him on a lower level medication. I’m really struggling here. My son and husband want me to research and essentially make the decisions however I am trying to educate my son so that he can make informed choices. I’m overwhelmed and have a feeling I may be up for a fight if the doctor isn’t agreeable.

I would greatly appreciate any insight you can share. Thank you so very much.

 

[Clash]

I would be concerned about moving down in meds when the big guns aren't working.

My son has had CD since age 15, he is 18 now. He was on high dose remicade plus methotrexate injections. At one time he did use ng tubes for overnight formula while still eating during the day, this was for weight gain. He only agreed after learning he could place tube in the evening and remove when he woke up. He was 17 when he used by tube.

Anyway, the high dose remicade plus injection mtx could not quell his inflammation although he was asymptomatic. We finally decided on surgery since the inflammation was affecting his ability to gain weight.

Maybe you could get a second opinion or even a records review by a leading pediatric IBD center.

My son starts college in the fall, he will be on humira shots and mtx injection if they are proven efficacious. I wish we still had the choice of remicade(he developed antibodies after surgery). I like the simplicity of having GI appt, infusion and lab work done in one visit.

 

[my little penguin]

Welcome
My kiddo is only 11 but was dx at age 7.
Immunosupressants like remicade plus mtx do NOT make you more likely to get common things like colds . The only time they come into play is with heavy duty oportunistic infections . DS has survived without more than normal childhood illness the 2nd through 5th grade on them . Not to say if you have a bad bactrial infections doctors will be cautious with the immunosuppresants/biologics to make sure the infection is treated with antibiotics
But that is about it.

Agree that if the big guns are failing it's going to be hard to try lesser meds.
Flaring is not recommendd since these are very hard to get under control the second time around.

Second getting a 2nd opinion at a major pediatric IBD center.
We had DS out twice for 2nd opinion
Most good GI will welcome the second opinon as a fresh set of eyes .

As far as options have you looked at humira or simponi ?
Food options are EEN or partial en on an extremely restrictive diet (15 total foods)
Both have shown to induce remission /healing but are not long term solutions .
Other studies show if you add supplement ( few shakes a day ) en to biologics the biologics work long.
DS had normal trough levels but no antibodies when he was on remicade
We still had to increase the dose and frequency to get results .

 

[my little penguin]

http://www.researchgate.net/profile...'s_Disease/links/54b19a200cf28ebe92e18ee6.pdf

Paper on partial EEN diet
DS is doing this in addition to humira/Mtx /pred( arthritis flare )


Also check out the parents group
And parents research section

http://www.crohnsforum.com/showthread.php?t=43002

 

[Maya142]

A second opinion is a good idea. There are some people who just don't respond to Remicade, but do better on combination of Remicade+ an immunomodulator (such as methotrexate or 6MP), or simply just another Anti-TNF, like Humira, Cimzia or Simponi. My younger daughter responds well to a combination of meds, but by itself, Remicade did not do much for her.

Generally doctors try at least 2 Anti-TNFs before moving to biologics with other mechanisms like Entyvio or Stelara.

Kids in particular seem to present in all sorts of ways - many don't have the classic bloody diarrhea. My daughter only had abdominal pain and constipation -- no diarrhea, no bleeding. Some kids just stop growing, no gut symptoms at all. It really varies.

I wouldn't worry too much about college while on an immunosuppressant. My older daughter is in college on Humira and MTX and she has had no trouble whatsoever. Occasional colds, but literally all college students get colds, since they live in dorms and aren't very clean! Just encourage him to wash his hands.

My daughter has been very good about avoiding colds because her arthritis flares when she gets sick - so far she has been quite successful by just washing her hands more often.

 

[SupportiveMom]

What are you thinking is the diagnosis if it's not crohns ? Or are you thinking he really doesn't have a disease at all? Ulcers definitely say something. Remicade not working doesn't mean no crohns. it just means you haven't found the right meds. Humira is worth a try. Jumping to entyvio, I'd ask why the doc thinks that is the right solution. Combo therapy can make a world of difference & should be explored.

 

[KRX]

Thank you for all the replies. I already feel better just talking to you! I don’t really doubt my son has Crohn’s however I couldn’t help but wonder a little since it was first read as negative for Crohn’s and then when the Prometheus came back a second look at his biopsy by a different doctor felt it was Crohn’s. His Peds GI suspected Crohn’s right after the upper and lower GI. I have no idea what else it would be, just wondered since it seemed to based on the Prometheus. Just hoping that we are indeed treating the right thing. Supposed to do an MRI at some point. (new machine that doc wanted to wait a few months to make sure there were no problems with the scans).

I had a talk with my son about treatments last night and it was the first time he told us that while he still had pain, it’s not as severe or as frequent as before he started treatment. And he thought there might be a slight improvement with the addition of MTX. Still has some bad days but more milder days that before. That was new information.

I have no idea why Entyvio. My son (18) would be their only pt on the drug. His nurse relayed that recommendation depending on the next biopsies and the doc felt Humira wouldn’t work on him since Remicade hasn’t. That’s all I know until I talk with him.

Maya, thank your for sharing about your daughter. I felt some relief after reading your post. I am glad my son hasn’t had the weight loss, diarrhea or bleeding, etc that so many experience but it’s also nice to hear others with similar experience. Glad your daughter has done well on campus!

A 2nd opinion or review from an IBD center is a great idea. How does that typically work - do you request from your Peds GI?

Thank you for responding to me! Hugs!

 

[my little penguin]

For a 2nd opinion you just call the Ibd center at the hospital you wish to see.
Given his age it might be trickier.
Some kiddie Ibd centers can't schedule appts once they hit 18. Depends

Boston childrens /chikdrens of Philadelphia /cinnicinati children's hospital are the top Ped Ibd centers in the US.

They have intake coordinators who tell you what they need
Typically meducal records /GI notes :imaging and reports
Biopsy slides and pathology reports - your medical records department /radiology and pathology department can help get those .

Then it's about a 2-3 months for an appt.
We took DS to Cincy twice .
Once just after dx .
Then later right after we started remucade .
We actually made the appt prior to starting remicade but decided not to wait to start it .

 

[Maya142]

Some pediatric IBD centers may be willing to see him for a second opinion appointment despite his age. My daughter is 18 and we are seeing a pediatric GI for a second opinion tomorrow. It's definitely worth trying.

I'm glad he's feeling a tiny bit better - at least it's a step in the right direction. Hopefully he will continue to improve and he won't have to go to Entyvio.

 

[Tesscorm]

Just re your concerns on going away to school and being on biologics... my son started on remicade a few months before going away to school too. He just finished his second year. During the first year, one of his roommates (they had apartment style rooms with four students per apartment), had to leave because he contracted mono! :yfaint: My son was fine. There were lots of flus, streps, etc. that went around and, over the two years, he did get strep once and the flu once - but, in both instances, he wasn't any more sick than he would've been without remicade nor did it seem to affect his recovery. And, I think, given how many of his friends were sick over the year, I don't think he caught either 'because' of remicade.

We were told that being on an immunosuppressant doesn't make it more likely that you will catch something but that you do need to be more diligent in treating an infection. So far, it hasn't been a problem.

My son also did exclusive EN (six weeks, using NG tube at night) and then supplemental EN for two more years (still with tube overnight). When he left for school, he didn't want to take the tube, pump, etc. but agreed to continue with 1-2 Boost shakes per day - I do believe the nutrition he gains from the shakes help keep his body healthy and, perhaps, this has helped in keeping him healthy and in fighting off whatever bugs he has caught.

I hope the improvement you/he are seeing, however small, continue!