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Just Diagnosed

G

Gram

My 10 year old grandson was just diagnosed after a month and a half of doc visits, symptoms and not knowing what was wrong. The doctor said he could have a regular diet, yet I am seeing TONS of information on food and diet and the different meds, side effects, etc. We have bought some of the items mentioned, but he was such a fussy eater to begin with. Right now he is on steroids to combat the inflammation and increase appetite I am told and then he will be getting a maintenance med through an IV every eight weeks. I am calm on the outside, but totally confused and scared to death for him on the inside. Where do I start with all this? Of course it all is his mom's decisions, but I want to do anything I Can to help, especially since I take care of him a lot.
 
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my little penguin

my little penguin

Moderator
Staff member
We have a great parents group
You can try posting there
Grandparents are welcome as well....
http://www.crohnsforum.com/forumdisplay.php?f=49


Remicade would probably be the iv drug
Ds was dx at age 7 and started remicade at age 8
He is now 11.
Diet is very individual what works for some doesn't work for others

Een ( formula only - peptamen jr kids boost or pediasure ) without food works as effective as steroids in kids but isn't a maintence med .

Remicade should kick in anywhere from the first infusion to 8 weeks later( after third infusion)
It just takes time for the gut to heal
So even a food diary now really isn't much help
You need to wait until he is feeling good a while then try things but honestly kids need lots of nutrition to grow so avoiding foods without a back up formula isn't recommended

Ds is on a partial enteral nutrition plus crohns exclusive diet since humira plus mtx alone wasn't holding his Gi symptoms
The convo of drugs formula and diet seems to be working
But he drinks a lot of formula every day
 
G

Gram

Thank you for your reply. What is enteral nutrition mean? Doc has him drinking two Pediasure a day. He was always an extremely active child prior to all this, always on the go - he wore us out. Will his activity level be what it once was once his stomach heals and disease is controlled.
 
my little penguin

my little penguin

Moderator
Staff member
Enteral nutrition is formula - either polymeric ( kids boost or pediasure ) or semi
Elemental ( peptamen jr or peptide ) or elemental ( neocate , elecare)


When humira was working well Ds just drank 2-3 peptamen jr a day


Physical activity will go back to close to normal once he heals
Ds swims competively so sports are not a problem
His coaches could tell when it was time for his next remicade infusion and when he started remicade .
The difference was night and day
But realize it will take time
Months not days in most cases
Typically it takes a year
But your grandson might fair better since he is starting on remicade
It took about a year before they tried remicade on Ds
Once they did he was great
 
G

Gram

That is encouraging. He has asked a few questions here and there mostly related to when his tummy will stop hurting and if he will have it forever. I've tried to explain in simple terms and reassure him he is still the same and lots of other children have this. But he only seems to have patience for bits and pieces of information at a time, which I suppose is normal. How did your little guy handle it?
 
my little penguin

my little penguin

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Staff member
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