Toddler with Crohn’s disease! Desperate mom!!!

[Mari101]

Toddler with Crohn’s disease! Desperate mom!!!

My son who is 3 years started having blood in his stool when he was about 2 1/2 and he was diagnosed about two months ago. We are trying the pediasure therapy now but we don’t see any improvements but then again we haven’t been constant due to him getting a terrible cold. I keep reading how rare and scary very early onset IBD is and today I just couldn’t stop crying. I keep hearing very early onset ibd and immunologist tests to tests for genetic diseases or auto immune disorders. For those moms with young kids, what was the outcome? A huge hug for all of you. This is such a difficult road.

 

[my little penguin]

The only way pedisure (exclusive enteral nutrition-formula only no food )
Works is if the child only drinks drinks formula /water only for 6-8 weeks
This induces mucosal healing
That said toddlers can be picky
Tagging farmwife pilgrim Polly malgrave
Both had kiddos dx very young

Some have used ng or g tubes to pump the formula in so they don’t have to rely on the toddler drinking enough

Once food is reintroduced then the formula is considered supplemental
It helps with weight and growth but does not stop the inflammation from coming back
Some parents of little kids try formula only as atherapy but that can have issues due to kids need /desire to chew and eat what others eat
They don’t understand what they did wrong and why they can’t eat
Otherwise it’s maintenance meds
5-asa are the weakest but about as useful as aspirin for a brain tumor per most GI
Immunosuppressants are next (6-mp and mtx )
Mtx is used for arthritis safely in kids as young as 2
And has worked well in Crohns patients
It can be a shot once a week or pills to swallow
Lastly you have biologics (remicade /humira /entivyio/Simponi /Stelara)
Again with these a shot or infusion (iv at the hospital)

Een takes a while to work
As does steriods
The genetic panel for veo ibd takes three months for results

Ds was dx at age 7 but has had GI issues since birth

It’s tough in the beginning
But now 7 years out I can say it does get better
You will learn a lot
And you will be amazed by your child everyday
Crohns is just something he has
Not who he is

And it will be ok

 

[Farmwife]

Hi and a warm welcome.
Yes, the young ones group is a small one. Sadly it's getting bigger each year.

A little about my girl.
Grace diagnosed at 3 but had symptoms long before that.
Her road was a long one.

Remember, each child is so different.
One can have mild disease and the next severe.
No, rhyme or reason.
Of course that knowledge doesn't help much when it's your child.

Meds often have to be tweaked or changed.
They're two prevailing methods doctors just with medications.
The top down approach.
Meaning : they tend to treat with the "bigger drugs" like Humira or Remicade.

The bottom up approach.
Meaning : The smaller drugs first, like sulfasalizine, my and such. Of course what meds is considered bottom up is debatable.

We did the top down approach with Grace since children tend to have a more severe course. But remember every child is different.
I'll take more when I have time. I'm home schooling.
Got to get back to them.
Hugs to you and your child

 

[Farmwife]

Lol, mlp always says it better.

 

[Mari101]

Thank you so much ladies for replying. So does the pediasure tx does not help with inflammation? Our doctor mentioned that it helps with remission with some patients. She also mentioned that if doesn’t work she wants to try two different kinds of antibiotics for 3 weeks. The only thing with pediasure is that I keep hearing different times and methods. I heard that you have to take it for 2 weeks with no food and then each 3 months add 10 percent of food. However I heard that sometimes the typical treatments do not work on those patients that had the very early set of ibd. Thank you for your support, means a lot. I apologized about my language, sometimes I forget verbs because English is not my first language.

 

[ladyphoenix1010]

Mari my heart goes out to you!

My daughter was older when diagnosed (10 years old) but she had 12 weeks straight of no food, only pediasure. She did go into remission. A year later she is still on pediasure every other week. When she is on a pediasure week, she gets no other food. So far so good only doing pediasure as treatment for her.

 

[my little penguin]

Mari101
You are correct
First they drink pedisure only -no foods for about 6-8 weeks
Then some switch over to 10% food and 90% pedisure or 20% food -80% pediasure
90 formula -10 food is more accepted

And has lots of different studies confirming it can work

Formula only wasn’t enough for ds
So we added meds

Good luck

 

[Maya142]

My daughter was diagnosed at 16, so I have absolutely no experience with VEO IBD but wanted to send hugs.

Here is a presentation from CHOP that talks about it a little: http://media.chop.edu/data/files/pdfs/latest-ibd-research2017.pdf

One of the mentioned studies in the presentation is an antibiotic protocol. The treatments used for VEO IBD can be anywhere from slightly different to VERY different from those for early onset IBD or adult onset IBD.

Biologics are used sometimes - Remicade and Humira are used on very young kiddos. Methotrexate is also sometimes used. Some kids do ok with one medication, while others need a combination.

EEN is usually 6-8 weeks of no food, formula only. If your kiddo is not tolerating Pediasure, a more broken down formula might help. If you can't get him to drink it, then a tube isn't a bad option - it's much more intimidating than it sounds.

Good luck!!

 

[Pilgrim]

Lol, mlp always says it better.

Lol!

 

[Pilgrim]

Hello and welcome. I'm glad you found us but sorry you needed to.
My daughter was diagnosed at 3 and is now 7. We used Ensure at the beginning with no other food for 6 weeks to calm her symptoms. It was tough, but after 3 days of sticking to it she accepted it and we succeeded.
It gave us some time to research our options, accept the diagnosis, and so on. But it took about 2 years for it to be the new normal. What you are dealing with is very hard right now.
I remember how hard it was to interpret her descriptions of how she felt at age 3. They have creative descriptions.
Anyway, the Ensure really helped but once food returned, so did symptoms. We tried Azathioprine next, she was allergic. So we were moved right to biologics about 4 months after diagnosis. We had the choice of Humira or Remicade, and we chose Humira because we live hours from the hospital and we could give her this med at home.
We agonized over it. How could we give this little child such a major med? It took some convincing by her GI. But it truly helped and by the time kindergarten rolled around she could actually play, and was able to start school. She loved it and had a great year.
Because she is very early onset, we feel we need to fight it aggressively to protect her from surgery as long as possible. Inflammation is the enemy.