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13 year old son with crohns, vomits up to 20xday

This is my first ever post. My son Hunter is 13. We found out he as Crohns 1 1/2 years ago. He is on Pantasa and methitrixate. ( That one he started 6 weeks ago) On steroids he's ok, as soon as we wean him to 5 mg, he vomits everything he eats. Sometimes up to 20+ times a day. We did a gastric emptying test and it was negative. We also recently scoped him and did x-ray and cat scans. I don't understand why he throws up so much. I am very carful with the foods I feed him when this happens. Anyone else experience this?
Also he is very down about being sick for so long with little relief. Any success storys I can share with him about similar experiences?
Also as a mom, how hard it is to know when to push him to go to school and when to baby him.
Thanks for any advice,
sherri
 
I am so sorry your son is sick, its so hard because as parents we want to be able to pick it and make it all better!

I was the most successful while going on a low dose and a very very slow taper. Other wise I would flare right back up. For me throwing up was a huge problem when I was first diagnosed. Have they given him anything to help with the vomiting?

I hope he feels better really soon!


Lauren
 

fuzzy butterfly

Well-known member
Hi sherri. Have they checked to see if its any of the meds that he has become intolerant too. That can happen. Also any anti sickness pills being given/taken.
Hope things get sorted soon 💕
 

my little penguin

Moderator
Staff member
We have a parents group here
Lots of experienced parents on here

Tagging
Clash
Crohnsinct
Maya142
Tessincom
Jmrogers

Ds was similar
He would vomit a lot
Pentasa for crohns is equated to taking aspirin for a brain tumor by most gi doctors
It only calms down the top layer on the intestine .
But crohns goes through all layers

Ds tried during the first year after dx at age 7
Pentasa
6-mp
6-mp plus allopurinol plus asacol
Methotrexate
And had similar results to your son
The vomiting didn't stop except the 9 weeks he was on EEN ( formula only no food )

At age 8 he tried remicade
He vomited for the first three infusions ( loading doses )
Then the magic happened
The vomiting stopped and he started to be my kid again
Had energy gained weight
Swam competitions etc...
That was 3.5 years ago
He is on humira plus methotrexate now due to crohns and juvenile spondyloarthritis associated with ibd .
But no vomiting
Can you get a second opinion ?
At one of the top three kiddie hospitals

Children's of Philadelphia
Children's of Pittsburgh
Boston children's

They will even do a records review ( no visit just send the papers)

Methotrexate takes at least 8-12 weeks to become fully effective
That said it wasn't enough for my kiddo
We had to take him for a second opinion

Good luck

Visit the parents section
 

Jennifer

Adminstrator
Staff member
Location
SLO
Hi sherrir and welcome to the forum! :)

I'm so sorry to hear about how your son is doing but there is hope. You'll find a lot of help and information in the parent's section as mentioned above and we also have a section for teens if your son is interested in talking to other teens on the forum who also have Crohn's. http://www.crohnsforum.com/forumdisplay.php?f=67

Again welcome! :)
 
Thank you all sooo much for your responses. I will have my son join the teen forum, i'm sure it will be really helpful for him to feel less alone. Its really good to know methotrexate takes 8 to 12 weeks. My doc had Hunter good down too fast from 40mg of steroids to 5, over 6 weeks, I think Hunter needed to take it slower. Now we are right back at the start again with the flare breaking through 5mg. Bumped him to 8.5 mg on Sunday, still not helping. I'm going to have to put him on clear liquids only for a day to restart him. At the beginning the doc gave him Ensure when this happened, it has dairy though and we try to keep him away from dairy. The clear version does not taste good. Anyone find anything good at a health food store? I found online Kates farm, its from Australia and its vegan, dairy free, gluten free...Thinking of ordering it.
For Nausea they give him 4mg of ondansetron and he feels it does not help at all. Anything else better out there?
Thanks again so much for all of your responses :)
 
Is he dairy intolerant? Drinking formulas such as Ensure, etc, exclusively or even up to 50% of calories works wonders for many people to get them out of a flare.

You may also want to try the introductory phase of the Specific Carbohydrate Diet or other similar diets that start with clear broth.

It will get better. Promise.
 

my little penguin

Moderator
Staff member
Orgain vegan supplements are no milk or soy and organic
But not complete nutrition.
Milk has lactose which causes issues in ibd
Ensure /boost - whole proteins and /peptide /peptamen are semi elemental ( more broken down ) are milk based but broken down so no lactose is present .

Both types are used routinely in ibd kids
Ds drinks 80-90% of his calories from peptamen jr a day to keep his crohns calm
But still avoids normal milk products
 
Sorry to hear about Hunter and I wish him well.I was 12 when I first got sick for the 1st couple years it was all about finding the right mix of meds,I'd be fine when I was on a high dose of steroids but once they started tapering me off I'd start to flare & vomit a lot.Also anti- Nasuea pills helped me a lot.
 

Maya142

Moderator
Staff member
Hi and welcome! My daughter was diagnosed at 16 with Crohn's and at 18 with Gastroparesis. She has also had a very hard time with gaining weight and eating.

My first thought was Gastroparesis but I see he has had a gastric emptying test.

Peptamen and Peptamen Jr work when your kiddo is lactose intolerant. They don't taste great, but my daughter got used to the taste and was able to drink 2 a day. Unfortunately, it wasn't enough to keep her weight up and we had to go to an NG tube.

When she was dxed with Gastroparesis, she then had an NJ tube placed since by then she couldn't tolerate formula going through her stomach. An NJ tube might be an option for your son - since it bypasses the stomach, he wouldn't be able to throw it up.

My daughter hated the NJ tube because it had to stay in all the time, unlike the NG tube which she just inserted at night. Unfortunately, her weight was so low that it was very necessary (she was hospitalized many times for malnutrition) and so she did have to adjust to dealing with it. She had it for a total of 13 weeks. The NJ tube is a pain because if it does get pulled out by accident, you have to go back to the hospital for it to be placed, by interventional radiology. But, it did do the job and she gained nearly 20 lbs while on it.

When it became clear M would need some kind of long-term supplementation, she had a GJ tube placed. She spent 3 days in the hospital, and took about 10 days total to recover. She had a few infections right after it was first placed but now things have settled down, thankfully. She is currently on Neocate Splash (she stopped tolerating Peptamen Jr at some point and so we switched to an elemental formula).

For nausea, my daughter also uses Zofran (ondasetron) and it works for her. We did find that that kind that dissolves works better than the regular kind - so we use Zofran ODT (oral disintegrating tablet).

Definitely check out the parent's sections - there are lots of parents there with kids around your son's age.

What did his scopes show recently? What do the doctors think is causing his vomiting? 20 times a day is a LOT! Perhaps he needs a stronger med, like a biologic?

Sending hugs!
 
When I am very nausea end am vomiting alot, normal nausea pill don't work for me the little bit of water I take with the pill is enough to push me over the edge and make me vomit it al out again. So they have no change to work. So now I have suppository pills for those moments and that works so much better for me! Maybe that is an option for your son?

Good luck!

Maud
 

Jennifer

Adminstrator
Staff member
Location
SLO
If you don't have any supplement drinks right now then you can try making your own soups and have him just drink the broth for now. I agree that the Ensure Clear flavors are disgusting, I've had to force them down myself.
 
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