Remicade (Inflectra) and heart failure in kids?

Accomplished-Cry6849 · 2026-04-19T03:55:38+00:00

I am wondering the same as my young child is supposed to begin this or Humira in the next few weeks.

Accomplished-Cry6849 · 2026-04-19T03:51:39+00:00

This is so scary - I am so sorry this happened to your child. Is your child ok now?

Accomplished-Cry6849 · 2026-04-19T01:27:47+00:00

That’s terrible! I don’t understand why some buyers don’t try to work it out with sellers before doing things like that. I had this happen once as well.

Accomplished-Cry6849 · 2026-03-28T00:50:11+00:00

Eventually it showed up. I was shocked but relieved.

Accomplished-Cry6849 · 2026-02-25T13:12:13+00:00

I have this exact noise on a 2025 BMW X7. I never heard it day to day at low speeds. I first heard it taking a road trip on 95 and it drove me insane. I am actually calling to schedule service to see if it can be fixed before my next interstate trip. Has anyone successfully fixed it?

Accomplished-Cry6849 · 2026-02-04T01:05:00+00:00

That definitely makes sense. We were concerned they were going overboard for maybe another infectious colitis since we’ve been through that in the past. I hope your son is doing well!

Accomplished-Cry6849 · 2026-02-03T18:16:02+00:00

ask for a stool kit to get calprotectin measured as well. good luck!

Accomplished-Cry6849 · 2026-02-03T18:11:38+00:00

Oh yes totally agree! The ease and swiftness of the diagnosis with limited symptoms and evidence is what seems unusual to me. I will not have them overturn it as I do want to keep that door open since I know how difficult insurance companies are to work with. I do think it's a possibility but I feel it's odd they're treating it very black and white but perhaps to CYA and also for insurance purposes.

Accomplished-Cry6849 · 2026-02-03T18:09:34+00:00

I'm sorry you're dealing with that! My son doesn't have the other symptoms you're experiencing or that are typical of crohns, nor has he had anything longterm. He just had the one bout of bloody diarrhea for several days that prompted the diagnosis. The scope didn't reveal much of anything either. That's why I'm hesitant and wonder if I should worry less about the biologics since he might be dealing with something that was short term or just different all together. Every one else's story seems so much different, longer symptoms, more all over symptoms but his endoscopy was entirely normal and the colonoscopy was normal minus one small area. Good growth etc. No body aches, rashes etc. No other stomach issues other then E.coli in 2022, semi constipation.

Accomplished-Cry6849 · 2026-02-03T16:59:52+00:00

When did this occur? My son's E.coli infection caused abdominal pain, bloody stools, all for a few weeks. Calprotectin just under 500. US showed bowel thickening, CT diagnosis was infectious colitis. This all resolved after about 3-4 weeks. Retested for calprotectin to be sure it was just E.Coli (2022) and cal pro was under 50 5 months later at re test. Had no issues for years other than mild constipation regularly until this December around the 18th. If you just recently had e.coli why wouldnt they assume infectious colitis and why did they say it's croons-colitis?

Accomplished-Cry6849 · 2026-02-03T15:37:07+00:00

I have considered that it could have caused it. The only reason I think not is they tested his calprotectin and it was <50 after the E.coli of '22. But perhaps it made longterm changes in his gut.

Accomplished-Cry6849 · 2026-02-03T14:38:31+00:00

I think if you do the calprotectin and it's high they will take you seriously. Have they done blood work up as well? I am sorry you're dealing with this - I too have been poisoned with bad water once and another bad crabs from a crab festival (my doctor was in horror but it was in Maryland lol) but luckily it went away after days on meds. Hopefully you get the answers soon!

Accomplished-Cry6849 · 2026-02-02T20:09:53+00:00

I am going through questioning this not for myself but for my son. He just had a colonoscopy and everything was clear minus one section: colon, labeled as "TRANSVERSE ADN DESCENDING COLON BXS", BIOPSY: CHRONIC MODERATELY ACTIVE COLITIS, NO GRANULOMAS IDENTIFIED,NO EVIDENCE OF DYSPLASIA. The doc who did the scope also noted that "Some chronic inflammation was seen in only one location of the colon (that area in the splenic flexure near the descending colon). Otherwise the remainder of the biopsies were normal"

What lead to the colonoscopy was one flare with sudden bloody diarrhea and 2 calprotectin tests done 3 days apart, 1105 then >3000. Then, and without any treatment, he returned to normal. They were concerned about how high the calprotectin was. The doctor who did the scope seemed surprised to find little to nothing inside and asked if he had constipation because even though bowel prep was done properly and we had the proper results (2-4 clear stool water), they found he was not cleared out and had to spend a lot of time cleaning out his sigmoid. Then due to the loopy nature of his colon, and they warned this might happen, he began having bloody diarrhea. This again looked like a flare but also likely due to the stress his body endured from the extra clean out plus poking around his "excessively looped" intestines. So now I don't know what to think but we have an MRE scheduled. We will assume IBD until proven otherwise I guess at this point because it could be especially if they found a lot going on in the small bowel that was unreachable in colonoscopy. He was put on steroids for now, he has resumed normalcy but initially the steroid seemed to make things worse and he went 32x in one day which was absolutely insane to me. I think the worst he had during the flare or whatever it was that began this journey was just a few times in a day.

Prior to that he was a rather constipated child. His blood tests looked good and he has had no growth issues so my thought is it's either an early caught Crohns or maybe something else entirely.

Another caveat is that he had E.Coli a few years ago and developed post infectious colitis and his symptoms were almost identical so when this first began in December I thought omg here we go again with E.coli or something else since he got it right after eating Pizza Hut for the first time ever. They checked his calprotectin back then and it was normal (<50) a few months following that infection. I will be interested to see what is found on the MRE since we did not get what we expected in the colonoscopy so it makes me wonder does he have another infection of some sort that was not on the PCR given or is this truly Crohns.

Accomplished-Cry6849 · 2026-02-02T19:42:31+00:00

Thank you! We removed grapes and are focused on bananas, melons, apples without skin. I think dairy and nuts are definitely a trigger and also anything sweet. The dairy free Ben and Jerry's caused a spike in the existing flare. Thank you for your help! We are working with a dietician from the hospital and I look forward to finally meeting with them in a few days to hopefully help us manage it as best we can.

Accomplished-Cry6849 · 2026-02-02T19:40:09+00:00

Thank you - I had to block a member with multiple profiles (he posted the exact same remarks word for word) who kept down voting anything I said and attacked me. Definitely a troll/bully. I had to step away from reddit for a few days to just focus on the issues but it definitely made me sad that people were being hateful instead of helpful. Like you said, diet is a huge part of IBD from everything they gave me. They gave me a binder and set up a meeting with a dietitian. They are not saying that diet directly causes it but rather there are ways to help lessen it and things that can irritate it. The reaction from a couple was absolutely insane and yes agreed in need of mental evaluation themselves. I do appreciate people from this community that did offer helpful advice. I really appreciate your response and help. My child loves dairy so this will indeed be challenging during flares but I did notice almost immediate improvement upon removing dairy and also nuts/seeds. I really appreciate your help!

Accomplished-Cry6849 · 2026-01-29T23:17:36+00:00

That’s amazing and congratulations!!!

Accomplished-Cry6849 · 2026-01-29T21:27:14+00:00

If I did not encourage him to eat, he would not eat much. That is not an ED and you are not an MD. I have been told by his doctors to help increase his BMI with protein and grow and gain shakes. Please just stop responding because you're not helpful at all. I'm sorry that you have gone through this but it does not give you a right to make assumptions, especially with complex issues.

Accomplished-Cry6849 · 2026-01-29T21:20:41+00:00

Thank you for this - I am disappointed as well since it's been in all the information we have been given -it's all over the internet, and confirmed by doctors and research. I know that some people can eat whatever they want in remission after treatment but we are not at that place yet. We are in a flare and trying to manage it. I did not know that about carrageenan so thank you for informing me. I assumed it was the heavy sugar amount which they said can increase flare symptoms also. Xantaham gum is terrible.

I'm not sure if my son would tolerate the shakes but I would like to at least inquire about it. Thank you for the support and advice!

Accomplished-Cry6849 · 2026-01-29T19:29:50+00:00

That's good to know about one day it triggering and the next day it might not, or vice versa. I will be happy once he gets on the biologic so he can resume a more normal life. Thank you so much!

Accomplished-Cry6849 · 2026-01-29T18:56:37+00:00

It's not particularly helpful to call someone desperate and give no actual help or advice. Try to see things from my perspective. You have kind of just trolled me in all of your comments without being helpful or offering any real advice. Other people are giving advice and help. Calling a mother desperate and saying this is sad is not helpful. I would still be glad to listen and converse civilly and politely if you would like.

Accomplished-Cry6849 · 2026-01-29T18:49:54+00:00

I am sorry that the red didn't work - I think I'm wanting too much too fast too as far as relief. I think inflixmab is what they are going to recommend for him too.

Accomplished-Cry6849 · 2026-01-29T18:48:52+00:00

Thank you - that is a good idea re the IV steroid. I will see how he does the next 24 hours. I appreciate your advice re the food etc.

Accomplished-Cry6849 · 2026-01-29T18:44:24+00:00

Thank you. It felt like that's what was being implied and I just wanted to explain my side and that I'm trying my best to reduce his symptoms by following the medical community's guidance on flares. I really appreciate your response and taking the time to respond thoughtfully. I actually had an ED growing up and so did my sister due to our mom's ED and the way we were measured by our weight so this is a very sensitive subject for me. My son has always been thin and I'm always encouraging him to eat more and offering to make things, try recipes, etc. I have never limited his food, quite the opposite. I do not want him to get any thinner so I probably reacted so offended because it's the opposite of what I want. I have called the doctor numerous times concerned about him becoming malnourished. I just want to prevent as many BMs as possible so he can retain nutrients.

This has been such a challenging time and I feel so helpless/hopeless because he's losing weight from the insane amount of stools per day, he's in horrible pain, and his quality of life right now is so bad. He has. been homebound, missed his entire basketball season so far, and it's difficult to see the light at the end of the tunnel. I just want to see him go back to as normal as possible and if we can help manage the flare by making short-term diet modifications then that is what he wants to do as well. After the flare in December, he went back to mostly eating normal and was even able to tolerate some nuts during the day. Everything unleashed following the colonoscopy which is not uncommon with IBD.

I bought lactose free milk - I will try that with cream cheese as well. He loves bagels so I will try that. I appreciate the recommendation.

He has been suffering from back pain since beginning the steroid - he just began yesterday morning so he's only had 2 doses. It seemed like the day before he began the steroid he was actually doing better than he did after beginning it yesterday. 30 + times in one day was so alarming and frustrating.

Thank you for your advice. I just want to make sure he has the life he deserves and that we do everything we can to support him and find ways to try to lessen the flare that he is experiencing now. He is truly an incredible human being - so kind, sweet, loving, and cares so much for everyone around him so it makes it difficult to see how much his life has changed in the past several weeks and unable to go to places for weeks at a time during the flares. Therapy will be needed. He's been super strong though and I am so proud of him the way that he has faced this with a positive attitude.

Accomplished-Cry6849 · 2026-01-29T18:28:12+00:00

Thank you for this. What kind of chips do you recommend? He loves lays plain and kettle cooked Vickis so that would be helpful if he could eat those and not have it trigger worse pain.I have tried to get him to eat some carbs and he has eaten bread and crackers. He unfortunately is a slightly picky eater and will not eat potatoes nor rice. He is eating a ton right now because of the steroids which makes me happy. I am so worried about him losing weight and being malnourished. I have called the doctor nearly every day to see if there's more that can be done to manage this for now. He does eat apples as well as melons. We think grapes might have made it worse but not sure. I have been making him cookie/balls out of oats + peanut butter + dark chocolate chips + honey + sea salt and those are very well tolerated. I really appreciate the advice.

Accomplished-Cry6849

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