Experiences?

[klapaucius]

My seven year old son has just been diagnosed with Crohn's, and next week the doctors want to start him on some type of special formula. He'll have that, and no other food, for eight weeks. Apparently the idea is it gives his intestines a rest (?) and also reduces the inflammation. The doctors have said they want to give this a try first, because they want to hold off on putting him on steroids if they possibly can.

Has anyone here tried this formula? I apologise but I don't know the name of it... I was just wondering how palatable it was, and what your experiences with it were. It's going to be very tough explaining to a seven year old that he can't have any other food but this for eight weeks...

Thanks in advance...

 

[mommy1st]

Is this something that he will drink or will it be given through a PICC line or IV. I had both before. The kind that I drank came with flavor packets it did not taste that good but it was okay. The tpn was better because they just hooked it up and you never really seem to get hungery. Hope everything goes well and it really does help.

 

[klapaucius]

Thank you - they want him to try drinking it, but they said if he refuses (which is likely, he is such a fussy eater) we'll have to learn how to give it using a nasogastric tube. The whole idea of THAT freaks me, the husband and I are willing to bribe him into drinking it, if that's what it takes!

Glad to know it helped you, that gives me hope.

 

[jed]

it'll be a drink similar to sustagen if its the same thing they considered with me. they're not the worst thing in the world, some taste ok. pretty annoying for a 7 year old tho.

 

[jed]

lol, definately bribe him into drinking it, NGT's are really quite horrible!

 

[mommy1st]

I was diagnosed when I was 10 years old now 29 so I have been through so much with it. At least there is so much more information out there for you. My parents really didn't know how to deal with it. Sometimes they thought that I was faking until I would end up in the hospital. I know how to deal with the Crohns myself but I think that it would be alot harder if it was one of my kids. No parent wants there kids to suffer and this unfortunately is something that you just can't take away. Stay positive that is probably the best advice that I can give you.

 

[klapaucius]

Jed - oh, Sustagen's not to bad - if it tastes like that we might be okay. There's a new PS3 game he has his eye on, so that might be the bribe, I think!

Mommy1st - wow, you've been dealing with this a LONG time. It must have been hard work for your parents, at least I have been able to Google till my eyes hurt, trying to find out information. I remember earlier this year, when had complained of tummy aches, sometimes they seemed to be sudden, and I'm ashamed to say I thought he was faking it at times. I feel so guilty about that now, of course...

 

[mommy1st]

Don't feel guilty Crohns is really hard to diagnosis. Just support him now I bet he'll be getting quite a few PS3 games out of you until the eight weeks are done. Best wishes.

 

[GoJohnnyGo]

Yeah, don't get too hung up on the whole guilt trip. Accusations of "faking it" is a pretty common experience no matter what the age. It's the type of disease that tests the patience of even the most caring loved ones. Important thing now is that you believe, and having that support will help your boy immeasurably.

Wow. Seven. I don't know your boy, but damn it, I'd hug him too if I could.

You too, don't get stressed out.

 

[kromom1]

GoJohnnyGo - For "one badass dude," you sure sound like a sweetie!!

Klapacius - I can only imagine what you are going through having such a young child with this horrible disease. My prayers to you and your family.

Lisa

 

[klapaucius]

Thank you all so much for the advice and kind words....

 

[amor151]

i was given the liquid diet as my first treatment and didn't get on well with it. it did help my symptoms but i just didn't like the taste of it and was on the steroids after 2 or 3 days of the stuff. i've heard it has a really good success rate with young children and i certianly felt its benefits for the short time i was on it, but as i said the taste and the thought of just that for 8 weeks was just too daunting. hope it works for your son, keep us informed.

 

[My Butt Hurts]

Hi and welcome. So sorry you have to be here, but hopefully we can help you through. A bribe in this case would'nt be a bad thing at all. It's that important to rest his guts, and he just won't understand that. PS3 will be a great help, I'm sure. You might not even want to try the nasal tube. I've heard that they are VERY painful going in.
Good luck, keep us posted.