Still confused for my 3 year old.
- Thread starter cre
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theOcean
Moderator
For as long as your body allows you without building up antibodies! If you're a case where you need biologics, you generally don't want to risk going off of them. And if you do, it's usually just to switch to another one.
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Thank you theOcean, I suppose I should be more blunt. I feel I am being a bit niave about my 3 year old just going through his 5th infusion. I am so torn as to keep on remicade and if it will kill him and at what point to try something more natural......oh what i would do to trade places with my sweet angel
DustyKat
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Hey cre,
What an incredibly difficult and heartbreaking time for you. :ghug:
To say these drugs are scary would be the understatement of the century and whilst the most serious side effects are a very rare event indeed it doesn’t make the worry any less real or valid.
We surely are between a rock and hard place and there is nothing harder in this world than having to make decisions for those we love more than life itself. Whilst we don’t know what the side effects of a drug will be, if any, for our children what is more certain is what untreated or under treated Crohn's is capable of doing.
Unfortunately when children develop Crohn's the course tends to be more severe and complicated. I more than understand your desire to give these drugs the big heave ho but to do so then opens up the very real possibility of further damage and surgery. My children never made it to the biologics as complications set in hard and fast and surgery was our only option. Surgery proved both a life saver at its inception, complications come with the same serious side effect (death) as any biologic and are more common, and in the long term has provided them with lasting remission with the help of Imuran. But it doesn’t come without its lasting legacies and once that piece of bowel is gone it is gone forever.
How we see these drugs is variable and no doubt your outlook will change many times too mum. We find ourselves replacing one fear with another, take me for example:
My daughter was diagnosed via emergency surgery, so never had any treatment and we very nearly lost her. I was new to all this and didn’t hesitate to grab the meds with both hands, I was scared, not of the meds but of what I had just seen. Then my son was diagnosed and I hated the thought of him being on Pred. He was also prescribed Imuran but as Sarah was already on it I didn’t give it another thought. Then the GI started talking about Humira and I was like having my own freaking party at the thought of it! Then the complications set in and surgery was it, then all I wanted was the Humira! :eek2:
The main thing mum is to keep the disease in check and get rid of that inflammation as it is that that will cause your little lad the most grief, bless him. :ghug:
Dusty. xxx
What an incredibly difficult and heartbreaking time for you. :ghug:
To say these drugs are scary would be the understatement of the century and whilst the most serious side effects are a very rare event indeed it doesn’t make the worry any less real or valid.
We surely are between a rock and hard place and there is nothing harder in this world than having to make decisions for those we love more than life itself. Whilst we don’t know what the side effects of a drug will be, if any, for our children what is more certain is what untreated or under treated Crohn's is capable of doing.
Unfortunately when children develop Crohn's the course tends to be more severe and complicated.
I more than understand your desire to give these drugs the big heave ho but to do so then opens up the very real possibility of further damage and surgery. My children never made it to the biologics as complications set in hard and fast and surgery was our only option. Surgery proved both a life saver at its inception, complications come with the same serious side effect (death) as any biologic and are more common, and in the long term has provided them with lasting remission with the help of Imuran. But it doesn’t come without its lasting legacies and once that piece of bowel is gone it is gone forever. How we see these drugs is variable and no doubt your outlook will change many times too mum. We find ourselves replacing one fear with another, take me for example:
My daughter was diagnosed via emergency surgery, so never had any treatment and we very nearly lost her. I was new to all this and didn’t hesitate to grab the meds with both hands, I was scared, not of the meds but of what I had just seen. Then my son was diagnosed and I hated the thought of him being on Pred. He was also prescribed Imuran but as Sarah was already on it I didn’t give it another thought. Then the GI started talking about Humira and I was like having my own freaking party at the thought of it! Then the complications set in and surgery was it, then all I wanted was the Humira! :eek2:
The main thing mum is to keep the disease in check and get rid of that inflammation as it is that that will cause your little lad the most grief, bless him. :ghug:
Dusty. xxx
