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Crohn's Disease Forum » Parents of Kids with IBD » Early, positive results with Remicade.


08-12-2014, 10:08 PM   #1
Emily's mom
 
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Early, positive results with Remicade.

My daughter, Emily was diagnosed with Crohn's in March 2014. We started her first Remicade infusion early May. On August 8, 2014 she had a colonoscopy that revealed positive results after three infusions. All the the inflammation had healed and her small bowel looked pristine. There was some scar tissue in her colon where inflammation was the worst. Emily had her fourth infusion on the same day of her colonoscopy. Her blood levels continue to be fine. I know there will be ups & downs, but for now all is well.

Wishing all of you the best!

~Julia
08-12-2014, 10:24 PM   #2
my little penguin
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That's really good news
Long may it continue
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08-12-2014, 10:38 PM   #3
Emily's mom
 
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My little penguin- Yes, long may it last. I would love for her to gain some height. I hope all is well with you and your family.

~julia
08-13-2014, 12:02 AM   #4
Maya142
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Great to hear! Hope it lasts forever!
I've heard parents on here say that kids put on weight first, and then grow, so it may be that she'll start growing soon.
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08-13-2014, 11:40 AM   #5
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News like this is so encouraging to me! I will be watching your story as my 13 yr old begins his remicade treatments this month.
08-13-2014, 01:44 PM   #6
Momtotwo
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Congrats! What was the reason for doing the test after three Remicade infusion. I'm still learning how this is managed, and my child's lab work is still abnormal.

Great news for your daughter. I hope it continues for many years.
08-13-2014, 03:20 PM   #7
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Great news! Hope it keeps going well
08-13-2014, 11:25 PM   #8
Emily's mom
 
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Congrats! What was the reason for doing the test after three Remicade infusion. I'm still learning how this is managed, and my child's lab work is still abnormal.

Great news for your daughter. I hope it continues for many years.

To my understanding the first three infusions are considered "loading infusions." The fourth infusion and every infusion here on out will be spaced out every eight weeks and they are considered " maintenance infusions." The colonoscopy would reveal progress or lack of. Luckily, it was good news. I will say however, Emily has a terrible cough and fever. I know it's something she picked up while getting her infusion. As you will become aware of Remicade suppresses the immune system so I take her colds seriously. She is having a chest X-ray and CT scan done in the morning. I think she might have a possible URI or sinusitis.

We have her infusions done on Fridays so we can come home and chill out over the weekend and keep her away from as many germs as possible. She will miss every 8th Friday at school. Her school is very understanding. She missed three months last school year as she had Crohn's. We at the time didn't know what was causing her to have three months of fever. We went from doctor to doctor, lab test after lab test and once again her school let her proceed to third grade ( mind you she attends a private school.)

This is a great forum with a wealth of info. I'm so grateful for the Crohn's Forum!

Best wishes to all. Please keep us updated on your children's progress! Stay strong!

~ julia
08-13-2014, 11:27 PM   #9
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Momtotwo, I'm still trying to figure out how Crohn's and treatments work, too! 😊
08-13-2014, 11:35 PM   #10
Maya142
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For what it's worth, my daughter has been on biologics almost five years, and does not catch colds etc. more than the average kid. She is on a very high dose of Remicade (higher than the max. FDA approved dose) but still has been ok (thankfully!).

We are very careful about washing hands, not sharing drinks etc. but in general don't do anything special. We've never had to do a chest x-ray or a CT scan for a cold or even a sinus infection. I wouldn't worry too much, unless your child has a high fever.

I hope Emily feels better soon!
08-13-2014, 11:35 PM   #11
Emily's mom
 
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News like this is so encouraging to me! I will be watching your story as my 13 yr old begins his remicade treatments this month.
Jennifer, I read your story and a big hug to your son! I hope the Remicade works wonders for him. The TNF blocker is the only drug that heals the inflammation my doctor has said. Emily's colon had huge ulcers and they are healed, and her disease is located in multiple areas. 98% has healed. I could only hope this for your son.

Keep us posted! Life will get better.

~julia
08-14-2014, 04:48 AM   #12
my little penguin
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Same here
DS has been in biologics for about three years - no chest X-rays or ct scans for a cold .
He has just had normal kid stuff no issues - only issue has been skin.
08-14-2014, 07:53 AM   #13
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That is great news.
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08-14-2014, 09:46 PM   #14
Emily's mom
 
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Update: Emily had a chest X-ray this morning and there was a small spot on her lung. Her pediatrician put her on an antibiotic to prevent it from turning into pnuemonia. Plus, she has had a fever for five days now.

We also met with her gastro and we went over all her labs and biopsy results. The doctor couldn't be more pleased.

Other than the URI all is well.
08-14-2014, 10:06 PM   #15
my little penguin
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Hugs
Five days fever bad cold regardless of biologics would be a chest xray for DS as well .
Hope things calm down.
08-15-2014, 03:46 AM   #16
Sascot
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Hope she feels better soon
08-17-2014, 10:38 AM   #17
Jmrogers4
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Yeah! glad the remicade is working so well, it's something wonderful to see them feeling well and just enjoying life. I hope she is feeling better from the cold.
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