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Crohn's Disease Forum » Parents of Kids with IBD » 2nd Infliximab today and gained 1kg in 2 weeks


03-25-2013, 11:26 AM   #1
Bubbly
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2nd Infliximab today and gained 1kg in 2 weeks

Well, son has had his 2nd infusion this morning and all gone well. He is very chilled and relaxed about the whole thing, which i think is a good thing.

He has gained 1 kg in 2 weeks, which is good news, and a positive sign, he has been feeling hungry and wanting to eat, as a rule little and often and what ever he wants. He doesnt have any restrictions at all in his diet, i appreciate alot of people do find some foods triggers flare ups, however the hospital where son is being treated dont seem to feel this is the case for him, so basically eat what he like, the higher the calories the better, so i need to buy more at the supermarkets as he is munching away.

They had said, that the infliximab they find generally it takes children 6 months to feel really good, so dont expect to much to soon, so small steps and we will get there.

No answers for the burping he does, thinks it a male thing!

Bloods will be taken at each infusion and to keep an eye on how well azathioprine is working for him, as they have just had to reduce it, so close eye required.

So, son is feeling better and in a slightly more positive mood, he is also on easter holidays for 3 weeks, which will spent with the odd day out, if the weather picks up maybe go to the coast, fingers crossed we get some sun soon, had enough of the snow!!
03-25-2013, 02:18 PM   #2
upsetmom
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Glad everything's good i hope it continues.
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03-25-2013, 04:37 PM   #3
positivemum
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Glad it went well and he is ok. mt son also able to eat what wants but has himself identified some problem foods. We finish on thurs for Easter hols - always a relief so don't worry if he will get in and how long for.
03-25-2013, 04:53 PM   #4
my little penguin
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good luck
hope things continue well
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03-26-2013, 07:02 AM   #5
Sascot
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That's good news. We are also still having snow up here - not much of a spring yet!
03-26-2013, 08:57 AM   #6
Bubbly
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Just done another post.

Son has hand to come off azathioprine due to doing to good a job, white cells low and some other bloods low, hubby took call and couldnt remember what the nurse said.....the one time he takes a call!! So stopped aza and blood being done next week then reviewing what meds to give him! One thing after another, just would really to be given a break and everything settle down, and to try and enjoy some sort of a normal life, oh well guess thats crohns for you!! One day is never the same as the next!!
03-26-2013, 09:05 AM   #7
positivemum
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Yet another issue to deal with - I know how you feel!!

My son now has a white patch in his throat and GP says not tonsillitis or oral thrush. Not really sure and to check next week again. Apparently nothing to worry about. But that doesn't help him eat and swallow as he feels like something is stuck in there. Someone give him a break. He has to spend the Easter hols revising for exams and has only been in 50% as well as doing suppositories every day. How fun for him!

I am exhausted too as every day is something else to deal with. I work full time teaching Year 6 just to add to it all!!!!
03-26-2013, 09:38 AM   #8
awmom
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Bubbly...it's really good news that the remicade seems to be working to the extent that his appetite and weight are improving.....I think that is a really good sign. It seems like they are keeping a very close watch on his labs and will hopefully be able to adjusts his meds quickly. I can relate to that rollecoaster feeling......you think things are going well and you relax a bit, and then something happens. keep us posted,
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