Son with Crohn's…don't know where to turn next!

[jimger14]

Son with Crohn's…don't know where to turn next!

Hello! This is all new to me, so bear with me. My son, who is 14 years old now, has been diagnosed with Crohn's Disease since he was 6.5 years. It was very manageable at the beginning, but we have had nothing but trouble since. He was on all sorts of different meds, some being: Prednisone, Pentasa, Azaithioprine, Remicade, & Humira. All of those drugs, minus the Humira, worked for a short time, and then quit. He had his entire colon removed in November 2012, and had a temporary ileostomy. He was put back on Remicade as a "maintenance" drug, and we thought he was well on his way to recovery. He did ok for the whole 16 months he had his "bag."

This past March, he had his take down, and it was a rough time in the hospital. He lost A LOT of blood, and they were talking transfusion, but luckily we didn't end up having to do that. Prior to his takedown, he had been losing weight, didn't want to eat much, and just felt yucky most days. I thought maybe once he had the takedown, things would get better. WRONG!! He has been declining ever since. Still losing weight, doesn't want to eat, nothing smells or tastes good. He claims he isn't having any pain, and we don't notice any bleeding. I am like 98% sure it is his diet, so I had him start seeing a dietician who performed the LEAP/MRT Food Sensitivities test on him.

That came back and showed he is SENSITIVE to LOTS of things. We are on day 12 of 14 of a very restrictive diet. Mainly meats and a few fruits and veggies he can have. He still does not want to eat much. It doesn't help he is a VERY PICKY child. He claims nothing tells him he is hungry. I called the GI doctor AGAIN, and he wants to up his Remicade dose from 5mg every 6 weeks to 10mg every 6. He won't prescribe an appetite stimulant drug for him because he doesn't believe in those. Suggested drinking 3-4 Ensure drinks per day or getting an NG tube to start TPN.

I am just at a loss. I am scared for my baby. He is now down to 86 lbs. (He was 120lbs when he was feeling the best!) I don't know what to do or where to turn. I am losing my faith in the medical field. I know a lot of his issues are food driven, but he doesn't even want to eat ANYTHING.

Has anyone out there ever had to deal with any of this? What do you suggest? I am thinking about getting a second opinion, but I don't even know where to start. Just when you think things are ok--BAM! Just want him to lead a "normal" teenage life, and not have to worry about his stupid disease.

Any advice/suggestions/support would be greatly appreciated!! Thanks for reading this!

 

[my little penguin]

If your in the US then the top pediatric Ibd centers are
Children hospital of philidelphia
Boston children's
Cincinnati children hospital

After having a child with crohn's and food allergies I am very Leary of food sensitivity testing .... There are a lot of unfortunate testing that leads to severely restricting a diet that does not need to be .
Did your GI recommend the diet restrictions - ?

A lot of kids have had great success with EEN or en supplements here..
DS drinks peptamen jr daily with food
EEN is formula only no food .
EN is formula with food.
EEN is as effective as pred in children.

DS was on 7.5 mg of remicade every 6 weeks at one point prior to his allergic reaction.
With en he has been able to gain 36 lbs .


Other kids have used boost or ensure.
Those are easier to drink but harder for the gut to absorb .
Peptamen or peptide are semi elemental
Elecare, neocate etc are elemental and hard to drink .

 

[CrohnsKidMom]

Welcome to the forum, but so sorry to hear all you've been through. Your poor boy. I really don't have advice, but there are lots of others here with more experience with this disease than me, so you are in the right place. I hope you get the answers you need and get your boy on the road to wellness soon.

 

[lbligh]

Oh, I am so sorry for the ordeal that your son has been enduring. It sounds just ghastly.

As you know, Remicade is the best drug in the arsenal of medicine. There is no "next step" after Remicade. It's the second most profitable drug in the world, I read recently.

The results of the food sensitivity tests probably have you second-guessing everything you have found helpful before. Do any of those sensitivities correlate with your own observations? In other words, do you think they are reliable?

Your son is so much more ill than my daughter was, even at her worst. I will tell you, though, that a few days on exclusive enteral nutrition did help her a lot, and that approach is the first-line pediatric treatment in some other countries, before any drugs are even attempted. As My Little Penguin stated above, and as the research shows, it can be very effective. Unfortunately, my daughter hated it and refused to do it again. I can't really blame her, but she wasn't as sick as your son is.

What did work for us -- and you'll have to forgive my zeal in talking about this, because it was such a miracle for my daughter that I simply have to talk like a missionary -- was the Specific Carbohydrate Diet. A friend of a friend told us about it, and we bought the book "Breaking the Vicious Cycle" by Elaine Gottshall, and thought it sounded really stupid. A few months later, though, we came to realize that our empirical approach to changing our daughter's diet, was bringing us closer and closer to the SCD. Before starting her on the 6MP that the doctor was urging, we decided to try the "fanatical adherence" to the SCD for a month, just so we would have tried everything.

I kid you not, it took two days for her constant fever and stomach ache to disappear. They have not returned. She is in complete remission, her bloodwork is all solidly normal, she easily tapered off Prednisone and is now off all meds except a few vitamins. I think most people take a lot longer than two days to benefit from the diet, but the author says you'll know within a month if it works for you.

The diet involves eating lots of fruits and vegetables and meats and fish, so it might well work even with the food sensitivity list you were given. The main thing is, no grains, no starchy vegetables such as potatoes, no sugar, no liquid milk. Some dairy products are permitted, such as aged cheese and homemade yogurt that has been fermented for at least 24 hours. Honey is permitted. So is butter, which makes my daughter very happy! There are a lot of details you need to know -- you would need to do your research, if this approach interests you at all. There are a lot of online resources, some better than others.

 

[Clash]

My son is having trouble gaining weight due to active disease so to up his nutritional status and weight he started EN. He inserts his nasogastric(ng) tube at night before bed and it runs until he wakes in the morning. At that time, he pulls the tube out. It took about a week and a change to ng tubes with stylets before it became second nature to him. Now, it takes longer to brush his teeth than it does to insert the tube, literally seconds. Also, he he whatever he wants during the day.

In a month of 90% formula / 10% food he gained around twenty pounds. After 8 weeks, we dropped to a maintenance dose of about 1500 calories of formula. All was done overnight.

C has no CD symptoms whatsoever except inability to gain weight. His blood work has always been normal. We are only aware of the active disease through a colonoscopy. His disease, originally located at the ileocecal valve has spread upward some in TI and now into the Cecil. We recently dropped remicade since the disease was progressing on high dose, 15mg/kg every six weeks. He was also on MTX and we just switched that to injection while awaiting followup on Tuesday to decide the next step, med etc.

The EN had been great for weight gain.

 

[Patricia56]

Sounds like you could benefit from a 2nd opinion. In addition to the locations mlp mentioned that are all on the eastern side of the country you might want to consider:

Cedar Sinai (LA)
UCSF
Mayo Rochester

Has your son seen a counselor or been evaluated for depression? If not I strongly recommend it as some of these issues may stem from depression which is a physical illness that can be treated in a variety of ways. It is very common for our kids to be depressed and instead of recognizing it for what it is we think some/all of the symptoms are from their Crohn's.

Good luck

 

[jimger14]

What is Methotrexate? Never heard of that drug….

 

[my little penguin]

If you click on the underlined word methotrexate it will go over it .
Mtx ( methotrexate ) is an immunospressant similar to 6-mp
It is used by itself or in combination with a biologic .

 

[AZMOM]

A second opinion is never a bad idea.

We are in the middle of EN feeds through NG tube on an 11 year old and I'm thrilled that she's averaging about a pound a week weight gain. Now, her loss is nowhere near as dramatic as your son's but I, like you, would be pushing for solutions.

Like Clash, I'm very happy with the EN to help support the nutritional needs. Sounds like for whatever reason, he's not getting what he needs with food alone. Bless your heart - I know you're worried!!!

J.