Update on Jack

[katyc]

We had our appt with the GI today....

Jack will have his endoscopy and colonsocopy on April 9th.....the GI does not want to do but I told her I would like to rule crohns out if she doesnt believe he has it....

She is still convinced that he has a milk protein allergy so she put him on Ellacare vanilla formula that he hates so for.....

And now its off to figure out new menus for our dairy/soy free house now
thats a bit overwhelming.....

She also ordered a "sweat test" I cant remember why or what it entails but she wanted it done by the end of the week....

We also scheduled for our primary to see if he will look at PI or possibly asthma since he always has a chronic cough.....

His IBD 7 panel....showed postive for C-bir and fla????? anybody know much about these....

 

[Jennifer]

Here maybe checking out the wiki on blood tests will help out: http://www.crohnsforum.com/wiki/Blood-test-codes-and-results-explained

Here's info on the sweat test: http://children.webmd.com/sweat-test I don't think I had that test done when I was a kid (or ever really).

I'm lactose intolerant and was brought up on Lactaid milk. Tastes kind of like watered down whipped cream. Its ok. There are a lot of different alternative milks out there so give some a try and find one he likes.

 

[imaboveitall]

Sweat test is to r/u cystic fibrosis.
Did she do labs for inflammatory markers?

 

[katyc]

Sweat test is to r/u cystic fibrosis.
Did she do labs for inflammatory markers?

Not sure what those are????? they just did the IBD panel 7 and its showed c-bir and fla??

 

[tots]

My kids had the sweat test- they were ruling out cystic fibrosis. They all have asthma- that like Crohns is auto immune. I have no idea if they use it for anything eles. Makes sense if they made Jack dairy free.

 

[tots]

My kids had the sweat test- they were ruling out cystic fibrosis. Turns out they all have asthma- that like Crohns is auto immune. I have no idea if they use it for anything eles. Makes sense if they made Jack dairy free.

 

[Catherine]

Are they talking about caesin allergy (one of the milk proteins)

You may want to at some the autism sites (only because there is lot of information on caesin free diet).

If it is caesin it is found in a lot a packet products and is listed under many names.

Best of luck with this diet.

 

[Devynnsmom]

Good luck!

 

[Dexky]

I hope it is just an allergy Katy, but good for you for pushing for the scopes. The risks are minimal compared to the satisfaction of a real look-see! Good luck!! Be sure to let us know!

 

[Firework]

the sweat test is easy. they put two electrode paddle things on the skin, wrap them once, then put heating pads on and wrap it up in ace bandages and then set a timer and take it off in about half an hour. Thats it.

 

[dannysmom]

Good luck. My son had the same IBD7 results & milk protein allergy. He has asthma & had 4 positive sweat tests ... but did not have 2 cystic fibrosis mutations, so he is still undiagnosed. He is not PI. His colonoscopy did not show enough inflammation to seal a Crohn's diagnosis. I hope they find a way to make your baby feel better! He is just too young to suffer. Please let us know how the tests go.

 

[DustyKat]

His IBD 7 panel....showed postive for C-bir and fla

Although the IBD 7 panel isn't always accurate in it's conclusions the above are antibodies to antigens. I know the Cbir1 is present in about 50% of Crohn's but I don't know the figures for Fla-X but it is an indicator of disease type and it seems to point toward stricturing disease.

I am no expert mind! So take my explanation with a grain of salt.

I agree about the sweat test...Cystic Fibrosis.

Good luck!

Dusty. xxx