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Raising Special Needs Kids Raising Special Needs Kids
We are doing creon again and will for awhile now. GI said a lot of her Mito kids use it and it helps stools and they're pretty sure Ty has Mito so they want him on it. And then they're having him take flagyl for a week every month for the next 6 months cuz he has bacterial overgrowth in his small intestine. So we added 2 more meds to our list, oh joy! We are going to try weaning him off thickened fluids and see what happens and they want a repeat swallow study to see what his dysphagia is doing. Every time we try weaning his thickened fluids he gets really bad respiratory infections with croup. So they're hoping that trying to wean during the summer (which we tried doing in the summer before) will help since he's less likely to catch a cold. We'll see. Then they want just an initial feeding evaluation done. They don't want to start feeding therapy, just get an evaluation done. Then follow up in 2 months, we'll see if we last 2 months, lol!
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by on Jun. 29, 2012 at 8:26 PM
Replies (11-17):
myfirstborn04
by on Jun. 30, 2012 at 9:25 AM
Wow, that's slot! I pray all goes well with ty this summer. Hang in there momma your one of a kind! Take care! :)
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Mipsy
by Chelle on Jun. 30, 2012 at 10:53 AM

Hey I was hoping you woudl pop in here cuz I knew Brady was on it and I remember you saying you crush his up? Am I remember correctly? We've been told we can put his in applesauce but we are having a hard time finding an allergen free one and I am afraid it will get old really quick but I dunno how else to give it to him cuz he doesn't take pills and I dunno how to crush it or anything :(

Quoting darbyakeep45:

Big hugs mama!  I know how hard this is and how frustrated you must be!  Brady takes creon for his digestion issues with CF, so I'm hoping this works for Ty!  Good luck mama!


darbyakeep45
by Darby on Jun. 30, 2012 at 11:04 AM

What does he eat by mouth?  You can open the capsules and sprinkle the pellets on whatever he's eating...he doesn't really HAVE to be applesauce...I know plenty of CF parents who don't use applesauce:)  You can use a mortar & pestel to crush the pellets and mix it with formula and push it through his g-tube...that's an option that we've used before too!  

Quoting Mipsy:

Hey I was hoping you woudl pop in here cuz I knew Brady was on it and I remember you saying you crush his up? Am I remember correctly? We've been told we can put his in applesauce but we are having a hard time finding an allergen free one and I am afraid it will get old really quick but I dunno how else to give it to him cuz he doesn't take pills and I dunno how to crush it or anything :(

Quoting darbyakeep45:

Big hugs mama!  I know how hard this is and how frustrated you must be!  Brady takes creon for his digestion issues with CF, so I'm hoping this works for Ty!  Good luck mama!



Mipsy
by Chelle on Jun. 30, 2012 at 11:24 AM

He eats ham (deli ham), turkey dogs, rice chex, and sandwhiches that are tapioca bread and sunflower seed butter and a home made allergen free "apple butter". Could I put it in his sandwhiches? He doesn't eat much else right now and where can I get a mortar and pestel?

Quoting darbyakeep45:

What does he eat by mouth?  You can open the capsules and sprinkle the pellets on whatever he's eating...he doesn't really HAVE to be applesauce...I know plenty of CF parents who don't use applesauce:)  You can use a mortar & pestel to crush the pellets and mix it with formula and push it through his g-tube...that's an option that we've used before too!  

Quoting Mipsy:

Hey I was hoping you woudl pop in here cuz I knew Brady was on it and I remember you saying you crush his up? Am I remember correctly? We've been told we can put his in applesauce but we are having a hard time finding an allergen free one and I am afraid it will get old really quick but I dunno how else to give it to him cuz he doesn't take pills and I dunno how to crush it or anything :(

Quoting darbyakeep45:

Big hugs mama!  I know how hard this is and how frustrated you must be!  Brady takes creon for his digestion issues with CF, so I'm hoping this works for Ty!  Good luck mama!




darbyakeep45
by Darby on Jun. 30, 2012 at 1:33 PM
Yes! Put them in the apple butter & spread that on his sandwich....that should work fine:)
You can get a mortar & pestle at Bed Bath & Beyond or Linens & Things....do you have one of those?


Quoting Mipsy:

He eats ham (deli ham), turkey dogs, rice chex, and sandwhiches that are tapioca bread and sunflower seed butter and a home made allergen free "apple butter". Could I put it in his sandwhiches? He doesn't eat much else right now and where can I get a mortar and pestel?

Quoting darbyakeep45:

What does he eat by mouth?  You can open the capsules and sprinkle the pellets on whatever he's eating...he doesn't really HAVE to be applesauce...I know plenty of CF parents who don't use applesauce:)  You can use a mortar & pestel to crush the pellets and mix it with formula and push it through his g-tube...that's an option that we've used before too!  

Quoting Mipsy:

Hey I was hoping you woudl pop in here cuz I knew Brady was on it and I remember you saying you crush his up? Am I remember correctly? We've been told we can put his in applesauce but we are having a hard time finding an allergen free one and I am afraid it will get old really quick but I dunno how else to give it to him cuz he doesn't take pills and I dunno how to crush it or anything :(

Quoting darbyakeep45:

Big hugs mama!  I know how hard this is and how frustrated you must be!  Brady takes creon for his digestion issues with CF, so I'm hoping this works for Ty!  Good luck mama!




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Mipsy
by Chelle on Jun. 30, 2012 at 2:30 PM

Yeah we have a Bed, Bath, & Beyond :) I'll go today and I did put it on his sandwhich. I put it all on one area so I knew he would get it all and luckily he did and I did good at guessing where he would start eating it, LOL! He doesn't always eat his entire sandwhich so I had to guess what part he wouldn't finish, LOL!

Quoting darbyakeep45:

Yes! Put them in the apple butter & spread that on his sandwich....that should work fine:)
You can get a mortar & pestle at Bed Bath & Beyond or Linens & Things....do you have one of those?

darbyakeep45
by Darby on Jun. 30, 2012 at 2:43 PM

Good!  I'm glad it worked!  Hope you're able to find one at Bed/Bath:)

Quoting Mipsy:

Yeah we have a Bed, Bath, & Beyond :) I'll go today and I did put it on his sandwhich. I put it all on one area so I knew he would get it all and luckily he did and I did good at guessing where he would start eating it, LOL! He doesn't always eat his entire sandwhich so I had to guess what part he wouldn't finish, LOL!

Quoting darbyakeep45:

Yes! Put them in the apple butter & spread that on his sandwich....that should work fine:)
You can get a mortar & pestle at Bed Bath & Beyond or Linens & Things....do you have one of those?


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