Son (11) newly diagonsed with Crohn's

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MomRocksOut

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Dec 24, 2012
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I'm so glad I've stumbled across this board. My son, 11, has recently been diagnosed with Crohn's. His Promethus results didn't show indicators, but his scope was conclusive of Crohn's. He has not had joint pains, fevers or sores in his mouth. He has had lots of diarrheah and lost weight.

He is on methotrexate right now. His GI is probably going to change our course of medication because his liver counts keep rising.

I'm interested in changing diet and am thinking SCD may be worth a shot. What about medication? If methotrexate doesn't work what are our options? I have read about Remicade and Humira and the side effects worry me.

I look forward to gleaning information from all of you. Knowledge is power and I want to learn as much as I can to help my son.

Amy
 
Last edited:
There are other immunosuppressants 6-mp and Aza( Imuran).
Those may or may not go to his liver as well.
My son was in 6-mp but it kept going to his liver so the Gi added allopurinol.
This helped some but did not let us get him to therapeutic levels without his ast and alt levels rising.
Oddly DS trailed Mtx for 8 weeks and his liver levels were fine.
His Ibd was not however and we had to switch him to remicade .

One thing to remember those are potential side effects .
Read the potential side effects to Tylenol or Motrin very scary .

DS has been on remicade since Aug.
It has made all the difference.
No real side effects so far .

Good luck
 
Amy,

Welcome to the forum, and my heart goes out to you and your son.
You will find great support and helpful information as you help him get his Crohns under control and into remission...
My daughter was diagnosed with Crohns last year. We went from Prednisone, to Asacol to Mercaptopurine to antibiotics to Remicade. She seems to be in remission as of last week :) It took awhile to find the right combination of meds, but we are finally there.

With diet, you are probably already keeping him off of seeds, no high fiber foods for now, and there is a liquid diet that many recommend.

Keep us informed of how he is doing and maybe they might need to back off the methotrexate if that is raising his liver counts.

Julie, Baylee's Mom
 
Hi and welcome. Medications are a minefield and unfortunately all of them have horrible side effects, however remember they have to list them all and alot of children can have very little in the way of side effects. My son took Aza and although we came off it because of his liver, he had no actual side effects while on it. We are going to be starting 6mp this month so I am also nervous. Good luck with whatever gets decided.
 
Welcome Amy - it's A LOT to take in, I know.

You have to weigh the risk/benefit of the medications and the medicines your doc is asking you to consider are proven to work. The risk of unchecked disease progression is far greater than the risks with the medicine. It's a terrible spot to be in. We all "feel you" on that!!

As you research, check out the CCFA website too. I'll try to find you the link about standard of care for pediatric disease that talks about the risk/benefit we are faced with for our children. These little bodies have a long way to go!!

Big hug - glad you found us - hate that you had to!

J.
 
Welcome Amy! There are many med options out there. Sometimes combinations of meds are required. I hope they find the right solution for him quickly. Unfortunately, that's not always the case. Good luck!
 
Hi Amy - I just posted under today's 'New to Crohn's' post about our experience with enteral nutrition and how it helped our 12 year old son (diagnosed at 11) reach remission and get the nutrients he needed to gain back significant weight.
Sending positive thoughts!
 
Hi Amy and welcome! I am sorry you've had to find this forum, but it's a great place to be. It's overwhelming, I know. You can make yourself crazy with reading the potential side effects, but the inflammation is a horrible threat too. Many GI's use the top down approach now where they go straight to remicade to get it under contol. Your GI might suggest that since the liver enzymes are up.

Our kids sound similar. My son's scope was definitive for Crohn's but his prometheus test was not indicative of Crohn's. He's not had the joint pain or other symptoms. It's funny how different you'll see the symptoms on here. It's amazing it's the same disease!

The SCD is different for people too. There are some people on here who have gotten great results from it. We did not. He felt good, but the bloodwork went haywire, we just didn't recognize it. That being said, eating a healthy Crohn's friendly diet is never a bad thing!

Some other things that we do are probiotics, multivitamins and fish oil. He also drinks some boost and has done straight EN when it was bad.

I hope things get better soon and that you get a plan in place. You will feel so much more at ease once you see some improvement. We've only had a few manageable side effects from Ryan's meds (knock on wood). I hope the same for you!
 
Thanks for all the information. I will be checking out EN and I do remember the GI saying he had several teen patients that chose to go that route. It really scares my son because he had a tube for the barium for his MRE and hated it. So, it really needs to be his choice.

Is it possible to do a primarily liquid diet without using a feeding tube?
 
Yes, there are some shakes that he can drink - Peptamin, Boost, Ensure, Elemental are some... There are some that are more easily absorbed (it has to do with the formulation) but I'll tag my little penguin , she can explain it much better than I can!

There's also some info in the following two links:

http://www.crohnsforum.com/forumdisplay.php?f=161
http://www.crohnsforum.com/showthread.php?t=36345

Also, there are different tube sizes. My son did the exclusive EN (formula only) for six weeks to induce remission and has kept up with the EN on a maintenance dose (with a regular diet) for the last year and uses an NG tube (ingests the formula overnight). His tube size is 6FR - it is very small (believe it's considered infant/child sized), however, he is 18 years old and 5'10" (he hasn't had any problems using this size of tube).

I believe I have also read that the tube can be coated with a numbing gel that helps with the insertion (no experience with this though).

Let me know if you have any other questions re EN and I'll try to help! :)

Good luck!
 
When Ryan was on EN, he drank Boost Kid Essentials Chocolate. I had to order them by the case online and yes they're a little juice box, but it worked. So he can drink his EN, it's like 6-9 shakes depending on whether you get the 1's(240 calories) or 1.5's (360 calories). The Boost website can help you locate them in your area. Ryan liked the taste of the 1's better and was willing to trade drinking more.
 
DS drank peptamen jr.
It is designed for Ibd. The formula is peptide based and only needs a few inches of healthy instestine to be absorbed .
Normal formula boost is a whole protein so is needs more intestine and requires more work by the body to absorb.
Elemental elecare e028 is the easiest to absorb but tastes the worst
Peptamen is semi elemental so in between
Boost whole protein harder yet
Food is the hardest of all.
 
Hi Amy,
Welcome to the forum. My daughter also drank the formula. She didn't like it very much but said it was better cold and over ice. The formula that My little penguin said is the type that is better because as she said less work for the body to break it down.
 
Hi and :welcome:

I can't add anything to the fab advice you have already been given. Are things still going on as before or have changes now been made?

Dusty. xxx
 
My son had blook work drawn yesterday, but I haven't gotten the results yet. He's gained 4lbs over the last 8 weeks and grown 1/2". This is awesome considering he gained 1 lb and grew 1" from age 10 to 11.

We have started the SCD diet. I guess I won't know how effective it is since he is on medication. I figure it can't hurt him and he's eating great so we'll keep at it.


Amy
 
MomRocksOut said:
My son had blook work drawn yesterday, but I haven't gotten the results yet. He's gained 4lbs over the last 8 weeks and grown 1/2". This is awesome considering he gained 1 lb and grew 1" from age 10 to 11.

We have started the SCD diet. I guess I won't know how effective it is since he is on medication. I figure it can't hurt him and he's eating great so we'll keep at it.


Amy
Click to expand...

Great news!
 

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