Introduction

[SeattleGirl]

Let me introduce myself, I'm Jeanne and my son was diagnosed about 8 months ago with Crohn's. Over one month he lost 10% of his body weight and we had discovered that he'd only grown 1" that year. (I obviously don't measure alot)

He was on Methotrexate for about 2 months and needed to discontinue due to liver problems. He's now on Remicade and we have been following the SCD diet now for 4 months.

Since the diet change he feels better and looks better. He says his stomach no longer hurts and isn't tempted to eat anything not allowed.

Are any of you combing medication with SCD? I would love for him not to be on Remicade forever because of side effects, but for now it's working.

Since his diagnosis he's up 18lbs and grown 1 1/2" We still have a ways to go to get him up to were he should be, but he sure looks 100% better!

BTW - so glad to find this. I've been looking for a place to connect with other parents who get it.

 

[Hope345]

We havent tried that diet. so glad it is working for your son.
Hope he keeps doing well.

 

[Jim (POPS)]

Seattlegirl,
Welcome to the forum. You have found the site that will help you and you son. Come into the chatroom and talk with the people there, they are a big help for me and I'm sure you will find the samething.

 

[Farmwife]

Hi and welcome.
Diet is an wonderful option but also an iffy thing.
Works great for some and not so well for there.
In the diet section we have many threads on diets.

How old is you son? I'm so glad to hear he's doing well.
Welcome aboard.

 

[my little penguin]

Welcome
DS is on remicade as well .
He is also doing en supplementing ( peptamen jr)
Like your son he has gained 20 lbs and grown 3"

The important thing when they are young is to keep there gut healthy for as long as possible and keep things under control as long as possible .

As far as diet versus remicade that would be something to discuss with your doc in terms if the risks for your child.
Realistically - most kids with Ibd have "superpowered " immune systems so remicade tends to not be effective for very long - most hope to get a few good years out of it until something better comes along.
That is our plan - hopefully it works for the next 80 years but....,
Not betting on it kwim

 

[SeattleGirl]

I plan on keeping with Remicade even though we've made diet changes. Our GI thinks you should get kids through puberty and after that if you want to try drug free - go for it. So, my son is 12 and am thinking we have several years on Remicade (hopefully).

I don't know what we would do if Remicade stopped working.

 

[Crohn's Mom]

Hi SeattleGirl, and welcome !

We personally don't have any experience with the SCD or Remicade, but there are lots of discussions going on here about both of them.

KWalker has a great thread discussing the SCD here http://www.crohnsforum.com/showthread.php?t=45273
and I'm sure he'd be more than happy to have you join the discussion and answer your questions.

Also, there are quite a few parents with children on Remicade here, and also lots of information in our treatment section as well.
Take a look around and feel free to ask any questions !

Best of luck, and again, welcome to the forum...we're glad to have you! :hug:

 

[AZMOM]

Hi! And welcome! Im so glad to hear that your son is doing well. And I think your GIs philosophy is a good one!!

J.

 

[CarolinAlaska]

Hi Seattlegirl. How old is your son? I'm impressed with the 18 lb weight gain. My daughter was diagnosed in January and has been on EEN for 4.5 weeks. She's gained 3-4 lbs so far. She is very underweight and has a long way to go, so I'm impressed with your son. I think you'll find this forum very helpful. I spend most of my time in the parents of kids with IBD section, mostly so I don't get overwhelmed. We are a gentle and encouraging crowd here.

 

[SeattleGirl]

My son is 12.

Thanks for the welcome everyone!

 

[Jmrogers4]

Hi SeattleGirl,
We don't have any experience with remicade. We tried SCD for a short time and we could not stick to it, my son is such a picky eater and he just wasn't getting the nutrition from it.
We have been doing supplemental drinks (EN) Peptide for the last month and he has gained 14 lbs so far, he will be 14 in a few months and had only gained about 5 lbs in the last 3 years and grown 1 1/2 inch so this has been a huge improvement for us.
I'm glad the diet is helping and he is willing to follow it.
Welcome to the forum

 

[Devynnsmom]

Hello and welcome to the forum. My daughter is not on SCD so I have no experience, I just wanted to say I'm glad your son is feeling better.

 

[Dexky]

Welcome SeattleGirl! If he's looking good, feeling good and growing properly, I wouldn't change a thing until you have to! Good luck, I wish you and him smooth sailing!!

 

[Niks]

Hi SeattleGirl

Glad to hear that your son is a feeling better!!

This is a fabulous forum, such good advice and support.

:ghug:

Hope things stay positive for you and your boy xx

 

[Mylittlesunshine]

Hi Seattle girl

I don't have any experience on meds

I'm so glad your son is doing well.

This forum has some lovely people here

And a lot of support and advice x x