• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Miles

I am a new Mom to Crohns disease....My 9 year old son Miles was just diagnosed 3 weeks ago. He is doing a treatment of tubal feeds 12 hours a day, with pure nutrition for 3 months. They also put him on Imuran..... Has anyone else ever did this type of treatment? He also has several elyum nodelum(sp) in his legs...very, very painful. This is all new for me and my sweet Miles....any suggestions would be helpful.
 

Trysha

Moderator
Staff member
Hello Miles
Welcome to the forum.
Sorry to hear of your son's illness.
There is plenty of information to be found in the Crohn's forum pages and if yop-u take a look around you will find lots of useful information.
There is also a parents section.
I do not have children so I am sorry I have no experience in that area, but there are plenty of others on the forum that I am sure will be along to help you.
Hugs and best wishes
Trysha
 

David

Co-Founder
Location
Naples, Florida
Hi there and welcome. I'm so sorry to hear about your little one, that must be so tough :( Ok, we have a few things to cover:

1. The parents of kids with IBD forum is here. That's the forum Trysha above mentioned. It will be invaluable for you. There are parents with kids there who are on the same treatment as you.

2. You can read more about his current nutrition treatment here in our enteral nutrition forum.

3. The thing on his legs is called erythema nodosum. It is what is called an "extra intestinal manifestation" of Crohn's Disease. We have a few thread about it in our skin forum here. In my opinion, it's likely a nutrient deficiency of some sort causing it. It is also a rare side effect of a medication called Pentasa.

4. We have a forum dedicated to Imuran located here where you can educate yourself about it. Did he have TPMT testing done before he was put on it?

Let's start there. We're here for you. I know this is an overwhelming time but you're not alone. Let us know how we can help. One of my biggest suggestions is to educate the heck out of yourself about this disease so you can advocate for you son.

All my best to you and your family.
 

Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum. I am sorry that your boy Miles has been diagnosed with this nasty disease. I can only agree with David about educating yourself as much as possible and all the places I would say to look at at he has posted the links for.

I hope things get better for Miles soon and at that you find the forum has helpful as I have.

xxx
 

DustyKat

Super Moderator
Hi and :welcome:

I'm sorry to hear about your son. As David has said, there are other parent's here that have or are using enteral nutrition either on it's own or with other medication.

His extra intestinal manifestations of his Crohn's should settle as his nutrition improves and the intestinal inflammation settles.

Good luck and welcome aboard!

Dusty. xxx
 
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