:Welcome:
Crohns is scary and especially for little kids
It's hard to treat and wrap around the idea of damage since it's all inside
Ds was Dx at age 7
He soon will be 13.
So I get the fear and anger and wanting to make it all better for your child
We have a parents group here
http://www.crohnsforum.com/forumdisplay.php?f=49
Come join us
As far as remicade - and risks and benefits
Doctors prescribe meds when the benefits out weigh the risks
Under treated or untreated crohns can be dealt ALOT of parents here have had their children have surgery or even the icu .
But the good is a lot have been given their kiddos lives back with biolgics including remicade .
It lets them heal and grow and not be in pain so they can be kids again
Every single med you have ever given your child has risks the difference is no one is sitting you down to say
Your infant has a high fever you give infant Tylenol
But there is a risk of liver damage , Steven Johnson syndrome or even death (extremely low risk ) same can be said for amoxicillin etc....
I am not saying that I easily jumped on the drug bandwagon or even the remicade bandwagon, it took a lot of reading here to fully understand that these meds are the best shot kids have right now at keeping their intestine healthy for as long as possible .
I felt physically ill when ds got his first remicade infusion
But then he started to get better and I realized just how sick he was .
As parents we take risks every single day
For better quality of life
The stats for death for kids under 14 in the US
By car 1 in 250
Be drowning -1 in 1000
The average person on the street of having t call lymphoma
2 in 10000
A person with ibd getting T cell lymphoma when on the combination of immunosuppressants and biolgics 6 in 10000
Most insurance though has restricted more expensive meds and may make your child "fail" each class of the lower meds before they will even cover remicade
And by fail I mean months of 5-asa , 6-mp and methotrexate.
It took over a year before Ds was covered for remicade
A year of being sick and getting worse to prove the other meds didn't work .
Really hope remicade is approved and your child gets to be a kid again soon
Realize remicade take 6-8 weeks to work
Methotrexate takes 8-12 weeks to work
6-mp /Aza takes 3-4 months to work
5-asa (pentasa etc..) are not approved or recommended for monotherapy for crohns .
Most studies show it's not much better than a placebo