What to Expect?

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lad473

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Jun 17, 2012
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Hi, my 10.5 year old son was diagnosed 5/31 with severe Crohn's: ulcers spotted from duodenum to rectum. The first symptoms we noticed were diarrhea and stomach pains. These started in March. Looking back, we now realize that his lowered energy and "sad" affect were probably due to this as well. We also did not realize that he had all but stopped growing-- he's really tall for his age. Since the diarrhea started, he has lost 8 lbs and is down to 74 lbs on his 5 foot frame.

His doctor is having him start Remicade on Thursday. We are nervous but hopeful that we will get our son back. What can we expect? Will we notice a change suddenly or gradually if the medicine is working? Has anyone paired a liquid (Ensure Plus) diet with Remicade? Aside from wanting to get him into remission, we would really like him to gain some weight and start growing again. Any advice or experience would be helpful. Thanks!
 
Hi lad and welcome to the forum.

My 12 year old daughter O was diagnosed on 2/1 of this year (she is 5 foot and 74 pounds also...but this is her high weight...she gained 10 pounds since diagnosis) and was put straight away onto Remicade with prednisone so I can't really say how long it will take as I don't know which our early results are attributed to but she felt better pretty quickly even if results in the bathroom took longer. Each child responds a little differently. However, from what I have seen around here if Remicade works for them it seems to work quicker than a lot of the other drugs.

Unfortunately, as we tapered prednisone my daughter's symptoms returned so we played with Remicade dosage and schedule (she is now on max dosage and 5 week cycle) but ultimately the doc decided we needed to add something else to help the Remicade along. We did EN exclusively with shakes and are just now transitioning to food very slowly. It seems to have worked very well for her as her most recent blood results are improved for the first time since removing prednisone.

There is a thread here called "kids on EN" and there are a number of Remicade discussions. I encourage you to check them out.

Good luck and keep us posted on how things are going. I hope the Remi works it's magic for your boy!
 
Remicade gave me a reaction so I was immediately pulled off after my third infusion, but so man people have had great sucess with it! A friend of mine, who started Remicade at age 8, gained 20 pounds in two months and grew four inches!! That is amazing! It is safe to drink Ensure while on Remicade or with any of the other biologics. Remicade should help your child grow & gain weight because it should fix the problem that has caused his stunted growth. You probably won't see results immediately and it can take up to 6 months for your child to see any relief. Everyone is different.

Is your son on Prednisone? Usually doctors immediately prescribe it. Especially for a moderate-severe case. As he tapers down the prednisone he might see some symptoms return but that's where Remicade comes in to do the job. Remicade will help improve his symptoms and hopefully get him and keep him in remission.

Good luck!
 
we did remi for a while before adding enteral nutrition. i would actually recommend peptamen jr or another peptide based formuka-they are easier on the bowel-over ensure. Remi didn't ultimately help us but enteral nutrition helped dd to to stop losing weight/kept her out of the hospital. We used an indwelling ng tube to facilitate compliance, but a few members here place the ng nightly and remove during the day. Good luck and keep us posted!!
 
Welcome to the forum! So sorry to hear about your son. I have a son who just turned 11 who was diagnosed in Feb. He's also 5 foot and lost down to 74lbs too. He's been doing EN via an ng tube since April and now weighs 88lbs. I just bumped the Kids on EN thread up to the top so it's easier to find. Take a read and see if it's something you think would work for your son. There's lots of people here that can anwer any questions you have about it. Good luck with the Remicade. I hope it gives him quick relief!! Keep us posted.
 
Thanks for all the quick replies. I will update Thursday after his first infusion. Is EN something the doctor prescribes, or is it something I do on my own? I"m guessing those on NG tubes must be prescribed, but the shakes sound like something I manage?

This weekend we noticed he had a good day after plain chicken and white rice for dinner, and a less successful day after pizza, so I imagine some diet modifications would be helpful.

He loves sports and is getting frustrated that he can't keep up with his usual self and his teammates. His coaches are extremely supportive and try to find ways to keep him involved that don't require as much exertion (like when his lacrosse team was ahead by 10 goals, they had him play goalie for the second half). If he can get his energy up, I know he'll buy into whatever treatment makes this happen.
 
Hi,

You don't need prescriptions for many of the formulas. We do have a prescription for ours, however, I know it is also available without prescription (prescription may be more for reimbursement reasons from insurance, etc.).

As for the NG tube, with or without a prescription, you and/or your son would need some training in its use so it would still be done through your doctor.

My son uses the NG and ingests his formula overnight. He found it very easy to learn to insert, literally takes just seconds and has not had any problems with it. However, he is a bit older (was 16 when diagnosed) so that may have helped. In his case, being picky, etc., I know he prefers the convenience of the tube opposed to drinking the shakes during the day.

It's worked very well for my son; so far, it has been his only treatment (only drug has been Nexium), it has alleviated his symptoms, he's regained all his lost weight plus some but there is still some inflammation so I can't say it has taken him completely into remission.

Also, as he is a picky eater, it is probably the first time in his life that I am NOT worried about his nutrition! :D If your son is able to drink the shakes or use the tube, it can only help him as it will provide so much of his nutrition! :)

Good luck!
 
Some insurance will cover the shakes if they are prescribed by a doc. We bought O's first two weeks of shakes in the market (Boost and Ensure) and then insurance was approved and we now get monthly shipments as needed. Our doc wrote the script for 15 months. Not that she will be exclusive EN for 15 months but he said once in remission she will transition to food and then when symptoms reappear due another cycle of exclusive EN.

There are more absorbable shakes than Boost and Ensure and they apparently have an even better affect on inflammation. However, our doc uses B & E because the taste doesn't bother the kiddos too much and so they are more compliant...plus O was petrified of the tube. She just wanted to drink, drink, drink.

I think on Remi and shakes (even if the shakes are supplemental) you will see a big difference soon. Lots of kids here are athletes and many do return to their post dx level of play. It just takes time and patience. O is getting there with her swimming. I would say she is 80% and in only 4 1/2 months...not bad.
 
Sorry to hear about your son's diagnosis. Good luck with the Remicade - sorry we have never used it so no idea how long it takes to work. Hope it works quickly for him so he can feel better!
 
Have never used Remicade but my son was 10 when he was diagnosed and will be 13 next month. He drinks the Boost Breeze juice type drinks as opposed to the shakes, we tried the shakes when he was first diagnosed but he would be too full to eat anything else and at 250ish/per shake 3 of them a day were just not enough calories and he got sick of them. The Breeze (he prefers wildberry and the peach is pretty good- says it tastes like drinking the juice out of a can of peaches, but the orange has a nasty after taste.) These are like drinking a juice box with dinner/lunch even breakfast. We are still working on the weight/growth issue. He has only gained a pound in the last year 76lbs and grown 1.5 inches (4'10.5"). His 11 year old brother is now taller then he is and outweighs him by a good 10 pounds.
My son is also very athletic and he was diagnosed at the start of baseball season and we had the same problem - let's just say his batting was way off that year. The energy does come back especially when their bodies are not expending all that energy trying to heal itself.
Best of luck to you, keep us updated.
 
Welcome and sorry to hear about your son. My son was on Remicade for about 8 months last year and it worked great. He never had an infusion reaction, they gave him tylenol and benadryl and took blood before each infusion. The nurses in the lab were awesome with him. We saw results within a week - more energy, color, gained weight, bloodwork good. Unfortunately, his body built antibodies to it and it stopped working. We did not do any additional meds at the same time. Since dx 2 years ago, we've tried all the shakes and Breeze was good for awhile, but he's gotten sick of all of them. Good luck to you!
 
Hi and :welcome:

I am so sorry to hear about your boy...:hug:

You have been fab advice already :) so I would just like to wish you well with the infusion today! I hope all goes well and your son is soon feeling better and raring to go again, bless him.

Good luck!
Dusty. xxx
 
First Remicade infusion went well. A weight was lifted off his shoulders. He is no longer dreading the IVs because the first one went well. Then he had an MRE done today. That did not go as well. It was done at a regular radiology center, so nothing was kid-friendly. I just hope he doesn't have to do that again anytime soon.

2nd Remicade is next week. Could be wishful thinking (or less anxiety), but he seems to have more energy. He still doesn't eat much...
 
Sorry about your son's diagnosis, but so glad the first infusion went well. Only thing I would add is to ask the GI to check his HACA levels (this checks for antibodies against Remicade). My son only had 4 infusions before he started developing antibodies against the Remicade. We have added methotrexate now which stops the body from producing these antibodies (hopefully). If his HACA increases any more, we will have to stop. In hindsight, I wish we had added the methotrexate at the start knowing that his immune system is so resistant.

On the EN, there is a brand by BOOST called Kid Essentials that tastes pretty good and is made for kids. They have a 1 formula that has 240 calories and a 1.5 which has 360 calories. We get our pharmacist to order them. Unfortunately they are expensive and insurance would not cover even with a prescription.

Good luck next infusion!
 
Jmckinley-- I will ask about the HACA. I heard the nurses talking about a blood test (I couldn't hear the exact letters, but it was A, something, A, so maybe they were already doing it.

We had shaped poop-- first time in 3.5 months. Trying not to get too hopeful, but my son is really happy this afternoon, so I'll take it for now.

Remicade #2 next Thursday.
 
Thanks for update! :)

Good luck with the next infusion. Fingers, toes and everything crossed that your boy keeps getting better and better! :goodluck:

Dusty. xxx
 
My son had second Remicade infusion this morning. He was nervous, so the initial needle stick didn't go as well as last time, but other than that, it went well. He gained 2 pounds (of course he had been to two fourth of July parties the day before...) The nurse emailed me to tell me his ESR and CRP results came back in the normal range today. His iron and protein are both still low but the protein was higher than two weeks ago. I'm guessing the inflammation had to come down in order for him to start absorbing. We are now cautiously optimistic that things will start to improve from here. We go in for third loading dose in 4 weeks and see the doctor that day. I don't want to get too excited, but I felt like it was good news.
 
That IS good news! :dance::dance::dance:

Yay weight gain and improving blood results!!:applause:

May it just get better from here on out!
 
Here's hoping that it is all good from here!! I understand how you feel nervous about getting excited.

Take care and let us know hoe it is all going.
LilyRose
 
Thanks for the fab update lad, soooooooooo happy for you! :):):):):):)

:mademyday:

Dusty. xxx
 

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