My 6 year old boy was recently diagnosed with UC. He had severe pancolitis and CDiff. He received one dose of Remicade in the hospital but after his second infusion two weeks later at home his symptoms have returned(diarrhea and bloody stool). We are new to this disease and I am unsure why the first dose would work and not the second. We did a ton of blood work and stool samples today but I was wondering if anyone had any experience with this. The diet is a struggle too because it seems like he can’t tolerate anything and the insurance won’t cover the formula because he doesn’t have a feeding tube. This is all terribly frustrating.
Remicade worked on initial dose but now more symptoms?
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crohnsinct
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For sure. My first daughter took a good long 6 months to get into remission. She was on prednisone when we started Remicade and every time we tapered the prednisone her symptoms would return. Medicine is just as much art as it is science. It takes a while to figure out the right dose for each child. Hang in there. Sounds like your Gi is on top of things with the testing they are doing.
If testing turns up that he is a non responder they are quite a few other options. But try not to get ahead of yourself and wait for the results.
Good luck and keep us posted.
If testing turns up that he is a non responder they are quite a few other options. But try not to get ahead of yourself and wait for the results.
Good luck and keep us posted.
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As far as formula coverage
Most will cover it through the medical durable equipment clause
NOT the pharmacy side of things
It is known as infusion supplies
Your GI will send the script to ths durable medical equipment company
They have insurance specialists who can get it covered with a letter of medical necessity
There is also the oley foundation due help
Your GI can give you samples to try
Nestle nutrition store gives you a discount for automatic orders
And most time is cheaper than the grocery store since it’s in bulk
Be aware that formula only is not as affective in UC as it is in Crohns
But worth a try
My kiddo took a full 7 weeks (3 plus infusions ) till he was back to doungbok
Lots of ups and downs
Was he on iv pred inpatient?
Vs oral pred outpatient
We didn’t wean off pred till after 7 weeks of remicade
My kiddo was dx at age 7
He is now 14
It does get better but finding that great med is tricky
Hugs
Most will cover it through the medical durable equipment clause
NOT the pharmacy side of things
It is known as infusion supplies
Your GI will send the script to ths durable medical equipment company
They have insurance specialists who can get it covered with a letter of medical necessity
There is also the oley foundation due help
Your GI can give you samples to try
Nestle nutrition store gives you a discount for automatic orders
And most time is cheaper than the grocery store since it’s in bulk
Be aware that formula only is not as affective in UC as it is in Crohns
But worth a try
My kiddo took a full 7 weeks (3 plus infusions ) till he was back to doungbok
Lots of ups and downs
Was he on iv pred inpatient?
Vs oral pred outpatient
We didn’t wean off pred till after 7 weeks of remicade
My kiddo was dx at age 7
He is now 14
It does get better but finding that great med is tricky
Hugs
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- 14,792
No steriods ????
They need a bridge until remicade fully kicks in
About 6 weeks
Bridge therapy is
Steriods and /or formula only
Remicade can’t knovk down the inflammation by itself
Please talk to your doctor
They need a bridge until remicade fully kicks in
About 6 weeks
Bridge therapy is
Steriods and /or formula only
Remicade can’t knovk down the inflammation by itself
Please talk to your doctor
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Like MLP said, generally either steroids or EEN is needed. My daughter was put on Entocort (which is a steroid). Other kids do EEN. Some kids drink the formula and others use a tube. My daughter later began using an NG tube because she was severely underweight and malnourished.
An NG tube is MUCH less intimidating than it sounds. My daughter inserted hers at night and took it out in the morning, so no one at school had to know. Some younger kids at our hospital (7-8 year olds) insert their own tubes every night. Other kids choose to keep it in all the time. It is a thin tube - like spaghetti. It is also very flexible. It is uncomfortable for the first few days, but after that, my daughter did not mind it at all. And for the first time, she began actually gaining weight.
My daughter took 3-4 infusions before she felt really good. She was on Remicade, MTX, a steroid and supplemental formula.
Does he still have CDiff? If he does, he is not going to feel better until that is gone. Have they tested him again to see if he still has it?
An NG tube is MUCH less intimidating than it sounds. My daughter inserted hers at night and took it out in the morning, so no one at school had to know. Some younger kids at our hospital (7-8 year olds) insert their own tubes every night. Other kids choose to keep it in all the time. It is a thin tube - like spaghetti. It is also very flexible. It is uncomfortable for the first few days, but after that, my daughter did not mind it at all. And for the first time, she began actually gaining weight.
My daughter took 3-4 infusions before she felt really good. She was on Remicade, MTX, a steroid and supplemental formula.
Does he still have CDiff? If he does, he is not going to feel better until that is gone. Have they tested him again to see if he still has it?
No, I hope not. Both CDiff tests cleared in the hospital. They probably ran another CDiff test to see if he is infected again. They ran quite a few tests yesterday. Now we are just waiting. Good to know that there are some more options I can ask about. Thanks everyone.
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My daughter was also started off on just Remicade after her diagnosis. That was not enough, and she ended up needing EEN, steroids, and methotrexate too. After 6 months, she was finally able to drop the EEN and steroids, and remicade + methotrexate was enough to keep her in remission for the next few years. Even so, we have had to increase the dose of remicade a few times during those years. Hang in there--there's still a good chance that Remicade will be effective, but you may need some other treatments too, or an increased dose.
crohnsinct
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C Diff stinks but never so happy to hear that result! Glad it isn't his Crohn's. Onward and Upward!
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