Almost 4 year old now dx with UC

[Jessrexx]

I had posted before that the docs were ruling out UC vs crohns vs infection. As it turns out with have UC for the win!
My head is literally spinning and I don't even know what questions to ask!
He is starting on sulfasalazine (hopefully you know what I mean as I am surely messing that up). What are your experience with that?

Where do I start? What are good resources for information for the newly diagnosed??

 

[Mr chicken]

Big hugs
The parents research section is a good place to start
http://www.crohnsforum.com/showthread.php?t=43002
It's divided by drugs etc....

Little ones dx with UC sometimes go on to be dx with crohns later on
Just how the disease presents
Sulfanazine is basically an old school drug the acts as a cream on the surface layer of the intestines and reduces inflammation
But if she is in a flare then typically you are given steroids to reduce the inflammation first so the sulfanazine can keep it under control
Sulfanazine works quickly and she should be normal in about 4 weeks if the drug is going to work
So if she is still not feeling good be sure to tell the Gi

It is the lowest level drug on the drug pyramid but seems to do ok for UC
Nothing for crohns as a monotherapy

Een ( formula only ) can be used instead of prednisone to reduce the inflammation as well
Kids drink all pedisure or kids boost
Some need broken down formula like mine
He drinks peptamen jr

This also helps with growth and nutrition
Something Ibd kids struggle with

Hugs

 

[crohnsinct]

What made them change their mind?

Here is a link to a collection of short videos intended to be a primer for IBD.

http://www.crohnsforum.com/showthread.php?t=73237

The research section of the parents forum, like mr chicken suggests is a good place. There are a lot of other resources posted throughout the parents section, often not specifically in resources and research.

On you tube if you look for advancements in IBD conference there are lotsof pediatric videos but they are more advanced than what you are probably looking for at this point.

Good luck. :ghug: We are all here gor you so ask away.

Sorry my girls have Crohns and we have no experience with the drug you mention. One of my daughter's friends has UC and she had luck with EEN although it is not usually as successful with UC as it with Crohn's. She was also on Pentasa as monotherapy for a while but has since moved up the ladder to Remicade.

 

[Jessrexx]

All the stool culture stuff came back negative. I saw the GI doc today and she said based on presentation so far it looks like UC. She did say it was hard to tell at this point and it may still be Crohns. We are going to start the med, get a barium study and recipe in 6 months. My daughter may need scope too if her reflux does not settle.
She recommended a good multivitamin and probiotic. Any recommendations for that?
Also, nutrition guidelines?
I know that stuff may be trivial, but this is all so new I am working from the ground up!

 

[Jessrexx]

Oh and start Prevacid for his throat clearing. He says he feels like something is in there. They didn't do an upper scope because they had been convinced of polyps so no way to know for sure. Everyone is regretting not getting the upper at this point, but what can you do?

 

[Mr chicken]

Is she in steroids ?

 

[Jessrexx]

Yes. Steroids too. Sorry. Too much to remember! Going to have to start a binder!

 

[kimmidwife]

Welcome to the forum. Sorry you had to find us but glad we are here for you. Since your child is young it is recommended to ask for a consult with an immunologist. Some of these very young children present with IBD when IBD is sometimes secondary to an immune issue going on. It is good to get and appt and have it ruled out.

 

[Jessrexx]

We are going to get more land drawn soon and go down the immunology road as well. She just wants the smoke to clear a little first with all the other stuff first! Which again I can appreciate.