Parents and Caregivers

6 Year Old Daughter with Crohn's Disease



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amandal0514

Joined: July 30, 2012

Posted: Jul 30, 2012 4:14 PM
Hi everyone. I am the mom to a beautiful little girl named Harley who was diagnosed last October with Crohn's Disease. She started out with a week's worth of diarrhea last June and stomach pain that never went away. After a few ultrasounds and some bloodwork, her pediatrician referred her to a pediatric GI because her father has CD. After a colonscopy and endoscopy it was confirmed.

I had absolutely ZERO clue a child this young could get Crohn's and if I had known, I'm not sure I would have had children with my now ex-husband. I thought she would at least be able to enjoy her childhood sad Her dad (we have been separated since she was 6 months old) doesn't really take care of himself (he's just starting to some now) so all she's seen is him being constantly in and out of ICU for Crohn's complications.

November 1st she got her first dose of Remicade and it worked great. We tried stretching it out to 8 week intervals but she metabolizes it too quickly. She's on a double dose (10mg/kg) and it runs out at about 4-5 weeks so she gets Remicade every 6 weeks and we've added on 6MP. She's had to start taking the adult dose of that (50mg tablets) because the labs showed she barely had any of it in her system. She also has problems with perianal disease and when everything was wearing off she had horrible horrible pain when using the restroom. Thankfully now that the 6MP is picking up the slack things have went a little smoother while we wait for Remicade appointments.

All this happened during Kindergarten last school year. Her teacher was very understanding and a huge help. I went ahead and got her Section 504'd for several accommodations. She starts First Grade in 4 weeks so hopefully her new teacher will be as understanding. She'll also be in the Gifted & Talented classes so I'm praying we don't fall behind!

Looking forward to getting to know you all!
Amanda
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carsynkranz

Joined: October 15, 2014

Posted: Oct 15, 2014 5:08 PM
 Reply posted for amandal0514.

I was diagnosed when I was six years old! I hope your daughter is feeling better now. It's really hard getting diagnosed so young, I've been through what most people go through in a lifetime with crohns and I'm only a junior in high school. But if I can do it so can she! So neat but sad that someone got it the same age I did:(
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mblyons

Joined: April 15, 2008

Posted: Oct 10, 2012 10:05 PM
Hello,

I had to respond when I saw your post.  My son was diagnosed right after his 6th birthday.  I couldn't believe it.  He is now 11.  He has been on pentasa, 6mp, methotrexate, then remicade.  He also metabolized the remicade and soon after we switched to humira.  He has been doing very well on humira, but we are looking at other options as he has been on it for about 3 years and and we are starting to see flare ups again.

I just wanted to say to hang in there.  I know how difficult it can be to see your child go through all this.  We have definitely had our ups and downs, but always try to keep a positive outlook.

Teachers have been great.  We are actually meeting with our son's teachers tomorrow to give them a look into what they may see and expect this year, as well as go over his 504.

Hang in there and I'll be thinking of you and your daughter!
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sindyf84

Joined: October 06, 2012

Posted: Oct 6, 2012 7:19 PM
 Reply posted for amandal0514.

I'm sorry, I meant to say Amanda, Harley's mom, lol. What is 504? I've never heard that before?
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sindyf84

Joined: October 06, 2012

Posted: Oct 6, 2012 7:15 PM
 Reply posted for amandal0514.

Hi ladies. I too went through the same with my daughter Mya who was diagnosed with ulcerative Colitis @ 7.  She was on Remicade too but after about a year and two allergic reactions to it, her GI doctor decided we had to go a different route.  She's now on Methotrexate which seems to be helping but because its an chemo therapeutic agent we have to constantly get bloodwork to make sure her liver is in good condition.  Amanda's mom, I completely felt the same way about school. She missed a lot of days first and second grade but her teachers were very understanding. And it's definitely important to let them know there's nothing different about our children except they need that "extra" bathroom time! :-) 

Sindy
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loving mother

Joined: November 28, 2008

Posted: Aug 14, 2012 8:35 AM
 Reply posted for amandal0514.

Hello Amanda!
I just wanted to offer my support and understanding.  My son was diagnosed with Crohns when he was 7.  He is stable on Imuran. He also is on an adult dose of 100mg a day because he also had trouble getting to a good level.   I agree with Lizzie's mom, Camp Oasis is a wonderful place where these kids can escape for a week with other children who are just like them.  My son who is now 11 went for the first time this past summer and had the time of his life.  I can't say enough good things about this camp and how happy and content my son was when he came back home.  I wish you and your daughter the best and will keep you in my thoughts always.
Take care!
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lizzies mom

Joined: September 09, 2009

Posted: Jul 31, 2012 8:31 AM
 Reply posted for amandal0514.

Wow, you both have had one heck of a year!    I can tell you it will get easier.   I think like with anything else that is new, there definitely is a learning curve.   It sounds like you are on the right path with the school with 504 already in place.  
Our daughter was 4 when she was diagnosed and it was a tough time for us, but we survived.  Liz is now 12 and is going into middle school this year (the time just flies by)!  I generally advise all of her teachers each year of her dx and let them know that she is to be treated like every other child with the exception of bathroom usage.  I also keep "safe" snacks on hand in the event she is going to a friend's house or if the class is having a party (though they have cut back because of all the food allergies) this way there is enough for everybody and she doesn't feel left out when the popcorn gets passed around. 
Though your daughter is only 6, keep Camp Oasis in mind for the future.    I think you have to be 9 or 10, but it is the best thing you can do for your child before they get to be opinionated teens and reluctant to try something new. 
I wish you guys all the best in the coming school year.   Fingers crossed that all of our children have an uneventful/normal school year!
Lizzies Mom

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