Hi. We have a 16-year-old son who has dealt with Cyclic Vomiting Syndrome since he was 8. He would typically experience 5-6 CVS episodes per year. Last summer he started having them every 7-10 days and was admitted to the hospital 8 times between May and August. Additional testing resulted in a Crohn's diagnosis which has caused a stricture at the ileo-cecal valve. We've started Remicade infusions and Methotrexate in hopes of avoiding surgery. Just found this forum and look forward to learning from y'all.
CVS with a Crohn's chaser
- Thread starter DeeDubya
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Ds was dx with cvs prior to Crohns dx
Turns out it was crohnsall aLONG
So something to keep in mind
Turns out it was crohnsall aLONG
So something to keep in mind
Thanks for the replies. MRE showed no scar tissue, so we're working under the assumption that the Crohn's is a recent onset, but who knows? Just glad to know what we're fighting and have a plan of treatment. S had a scare last night with nausea and vomiting, but felt better this morning. He ate a few grapes last night, which might have been the culprit. We're still newbies at this, trying to figure out what his triggers are.
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When Ds did een at the beginning (exclusive enteral nutrition -formula only
Peptamen jr)
All vomiting stopped
It can help remicade get the inflammation under control faster
Typically done for 6-8 weeks
Mine drank it orally no tube
Peptamen jr)
All vomiting stopped
It can help remicade get the inflammation under control faster
Typically done for 6-8 weeks
Mine drank it orally no tube
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:lol:
Mine was only 7 at the time
So he didn’t know he had a choice
Now at 14
He knows if we go that route for a bit
It helps
He currently drinks 50% of his calories from
Amino acid based formula (neocate jr)
This keeps growth /weight normal as his peers
They think it’s a protein shake
Mine was only 7 at the time
So he didn’t know he had a choice
Now at 14
He knows if we go that route for a bit
It helps
He currently drinks 50% of his calories from
Amino acid based formula (neocate jr)
This keeps growth /weight normal as his peers
They think it’s a protein shake
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You could try using an NG tube for overnight feeds if he is totally against drinking the shakes. My daughter used that. She was VERY against it at first (she was 17 I think) but she was so underweight that her GI insisted. The first night was rough, the second night was better and after that, she did great. Got very good at inserting it - could do it in under 10 seconds.
Also, in the beginning, my daughter had a VERY hard time with fiber. So we tried avoiding it and she felt better. A low residue diet might help, especially since he has a stricture. We avoided raw veggies and even certain cooked veggies- anything with a lot of fiber hurt.
I hope Remicade and MTX work well for your son!!
Also, in the beginning, my daughter had a VERY hard time with fiber. So we tried avoiding it and she felt better. A low residue diet might help, especially since he has a stricture. We avoided raw veggies and even certain cooked veggies- anything with a lot of fiber hurt.
I hope Remicade and MTX work well for your son!!
Thanks Maya. We're doing the low residue diet, but still get surprises from time to time as he figures out what he can and can't tolerate. I think the NG tube would be a battle, and hopefully he won't get to the point where he needs it. Good to know that your daughter adapted to it quickly though.
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Just wanted to mention it because my daughter is flaring currently and we figured out she can't tolerate grapes and can't digest raisins (don't ask me how I know ).
There are a lot of hospitals that will now let kids do 80% formula and 20% food, which is much easier on the kid and still can help a lot with inducing remission. So hypothetically, he could still eat lunch with his friends at school and at home do the tube feeds. After my daughter got used to the tube, she declared she would never be drinking formula again and the tube was SO much better!
She now has a more permanent tube surgically placed in her small bowel (she has Gastroparesis as well as Crohn's, so we need to bypass her stomach), which she can use for formula and medications.
I will add that she was unable to do 100% formula (that was just too hard for her) but when she was at her sickest, she was getting 85% formula and 15% food. That allowed her to feel like she was still eating but really most of her nutrition was coming from the formula.
Good luck and keep us posted!!
).There are a lot of hospitals that will now let kids do 80% formula and 20% food, which is much easier on the kid and still can help a lot with inducing remission. So hypothetically, he could still eat lunch with his friends at school and at home do the tube feeds. After my daughter got used to the tube, she declared she would never be drinking formula again and the tube was SO much better!
She now has a more permanent tube surgically placed in her small bowel (she has Gastroparesis as well as Crohn's, so we need to bypass her stomach), which she can use for formula and medications.
I will add that she was unable to do 100% formula (that was just too hard for her) but when she was at her sickest, she was getting 85% formula and 15% food. That allowed her to feel like she was still eating but really most of her nutrition was coming from the formula.
Good luck and keep us posted!!
My son is 11 years old and also has crohns. He has been on remicade and methotrexate since September 2017 and is doing well with that. He did follow a low fiber diet initially but now can eat most things without problems. Hope your son feels better soon!
crohnsinct
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Welcome to the forum and teen parenting!
He is on a therapy with a good success rate.
Wanted to ado the chorus that especially with a stricture that you suspect is due to inflammation, you are going to want to wait on raw veggies, salad, nuts, seeds, steak, high fiber etc.
When my daughter was first dx'd she was put on low fiber and the hospital was giving her fruit loops, white bread etc. My friend said, "don't let my son find out or he will start faking Crohn's". It was hard to watch her eat that crap but in time they heal and can go back to normal. They learn the foods that will always bother them. For my daughter it is most restaurant and fast food and coffee.
Good luck!
He is on a therapy with a good success rate.
Wanted to ado the chorus that especially with a stricture that you suspect is due to inflammation, you are going to want to wait on raw veggies, salad, nuts, seeds, steak, high fiber etc.
When my daughter was first dx'd she was put on low fiber and the hospital was giving her fruit loops, white bread etc. My friend said, "don't let my son find out or he will start faking Crohn's". It was hard to watch her eat that crap but in time they heal and can go back to normal. They learn the foods that will always bother them. For my daughter it is most restaurant and fast food and coffee.
Good luck!
