Loving Vanderbilt--Update on My 12 yr old son

[chefmommaof6]

So, I know my presence on the forums is hit and miss. But these boards have been such a blessing! Anyway, we had our follow up at Vandy, and I just want to praise the Lord to have such a wonderful team of people helping my son now. We have been doing an NG/EEN feeding using Elecare the past month or so, and my son has improved TREMENDOUSLY!!!!:dance::dance::dance: He is up to 64 lbs, up from 58 lbs about 6 weeks ago! And he has grown 2 inches in height since then!:dance::dance::dance: Plus, his Crohn's pain has went down dramatically. Yeah, this momma is doing happy dancing.

We are still dealing with alot of heartburn, and the doc thinks my son may have eosinophilic esophagitis in addition to the Crohn's. They are going to do scopes in another month or so, to see how he is doing and to check for that disease as well. If it's positive, we'll do allergy testing. No, every thing is not a bed or roses. No, we haven't totally kicked this Crohn's butt yet. But we are making progress, and I just wanted to share our victories with all of you precious souls, to encourage you today as well. I know there are lots of hard days and weeks with this crappy disease, but God is good, and I am so thankful for where we are right now, and just trying to enjoy the victories as they come.

 

[chefmommaof6]

Oh, and we are still on the Remicade and methotrexate weekly injections as well. Joseph's last infusion went well, so our startup infusions are done, and we don't go back for 8 weeks. But he is tolerating them well. :dance::dance:

 

[upsetmom]

:dusty:Good to hear things are going well....except the heartburn
l hope you get that under control soon.:hug:

 

[chefmommaof6]

Dusty, that is my wish for all of us. Onwards and upwards! And I'm feeling so super about things, I had to change my profile pic! lol (I love all things Superman too, so it seemed appropos. lol)

 

[DustyKat]

The avatar looks fab to me! :thumleft:

Dusty.

 

[my little penguin]

Please look into the EoE more.
The main accepted treatment for EoE is
You guessed EEN . Some kids need swallowed steriods in addition to this.
So scoping after being on EEN for 6-12 weeks means you may not find any evidence of the disease (Elevated EOS)

Cchmc is one of the top places in the country for EOE
http://apfed.org/drupal/drupal/what_is_eoe

http://www.cincinnatichildrens.org/service/c/eosinophilic-disorders/default/

 

[chefmommaof6]

They had actually not told us to do exclusive enteral, just to supplement. However, we had gone off everything through this week, due to the fact everytime our son eats other food, he has Crohn's pain, or atleast some kind of pain. So after talking with them yesterday, we are doing a cleanout with Miralax for a couple days to make sure his system is running well and there is no constipation (last x rays showed constipation), then adding back in bland foods, working up to a full diet by the time of the scopes. I asked them about the diet, because I knew with celiac you could get false negatives and thought this could be the same. We asked about pushing the scopes up, but the Doc is wanting to give the Remicade time to work, to be able to check on what he looks like at that point. He is trying to do it all at once, to limit how many tests he is having to do on my son. Hopefully, we will have him on enough things then, we can tell for sure if the EoE is an issue or not.

 

[ChampsMom]

Great news!! Wonderful to hear!!

and LOVE the profile picture!

 

[my little penguin]

Well that sounds better
Make sure he is eating the top eight allergen foods for at least 6 -8 weeks prior to the scope and that he has been off all steriods for at least 7 weeks other wise you will get a false negative .

Here is a site that can help answer your EOE /scope questions better
DS does not have EOE ( Gi thought he did at one point)
But it is not really an area I know all the ins and outs of

The moms on KFA do

http://community.kidswithfoodallergies.org/forum/eosinophilic_disorders

 

[chefmommaof6]

We are weaning him off of budesonide. He has another week or so on that. Is that going to trigger a false negative? And what would be the top allergen foods? Sorry if I sound dimwitted; I still feel so new to all of this stuff. And thanks for the link...will check it out.

 

[my little penguin]

Swallowed steriods are a treatment so ....
Top eight allergens
Milk ,eggs ,wheat ,fish ,tree nuts, peanuts ,and soy

Beef is also a big EoE trigger but some kids flare to coconut .

Opps forgot shellfish