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Raising Special Needs Kids Raising Special Needs Kids
My son had a GI scope and an MRI done.... His Trach was successfully removed, but he apparently has periventricular leukomalacia, and eosinophilic esophogitis.

Has anyone had experience with either of these issues? I am trying to research and find a good plan of action for these things, as our appointments to follow up are all at least a month out.

I had to argue with his feeding therapist because she wanted to keep trying to feed him solids. Clearly he's allergic to something we're giving him, I refuse to cause permanent damage to his esophagus by making him continue to vomit.
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by on Oct. 6, 2012 at 3:05 AM
Replies (11-20):
mom2zachy122
by on Oct. 8, 2012 at 12:16 PM

What is your feeding therapist's background?  Is she a speech therapist?  Occupational therapist? Nutritionist?  That might explain some of her thinking.  I worked for about 15 years with adult feeding issues and losing interest in food is generally not a huge issue, although it was for some.  It would be difficult to seperate loss of interest in food from general decline/old age, though. 

Interest in food is a pretty basic instinct.  I would think that, even if it went away, you could re-stimulate it just by re-presenting favored foods.....?

Good luck!  :)

mom2zachy122
by on Oct. 8, 2012 at 12:17 PM

Found this through google....

http://curedfoundation.org/site/

mlogsdon
by on Oct. 8, 2012 at 12:41 PM
We have two therapists in the session, PT/OT with one lady (love her!) and Speech/feeding with the other. Not so much a fan of her. The PT actually explained a bit to the other lady and told me to look at gastrokids.org as it had some general info and a list of the most commonly problematic foods. we have a fantastic connection with his PT, the speech/feeding lady just doesn't click I think.

Quoting mom2zachy122:

What is your feeding therapist's background?  Is she a speech therapist?  Occupational therapist? Nutritionist?  That might explain some of her thinking.  I worked for about 15 years with adult feeding issues and losing interest in food is generally not a huge issue, although it was for some.  It would be difficult to seperate loss of interest in food from general decline/old age, though. 


Interest in food is a pretty basic instinct.  I would think that, even if it went away, you could re-stimulate it just by re-presenting favored foods.....?


Good luck!  :)

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mom2zachy122
by on Oct. 8, 2012 at 2:48 PM
1 mom liked this


Quoting mlogsdon:

We have two therapists in the session, PT/OT with one lady (love her!) and Speech/feeding with the other. Not so much a fan of her. The PT actually explained a bit to the other lady and told me to look at gastrokids.org as it had some general info and a list of the most commonly problematic foods. we have a fantastic connection with his PT, the speech/feeding lady just doesn't click I think.

Quoting mom2zachy122:

What is your feeding therapist's background?  Is she a speech therapist?  Occupational therapist? Nutritionist?  That might explain some of her thinking.  I worked for about 15 years with adult feeding issues and losing interest in food is generally not a huge issue, although it was for some.  It would be difficult to seperate loss of interest in food from general decline/old age, though. 


Interest in food is a pretty basic instinct.  I would think that, even if it went away, you could re-stimulate it just by re-presenting favored foods.....?


Good luck!  :)

gotcha...interesting b/c it's usually speech who has the background for feeding.  HOpe it clicks better or you get a new one ;)

natesmom1228
by on Oct. 8, 2012 at 4:15 PM
I have no experience with this.
zolanmel
by on Oct. 8, 2012 at 4:54 PM
You need to get a scrat h test done
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mlogsdon
by on Oct. 8, 2012 at 7:11 PM
We meet with the allergist at the end of the month

Quoting zolanmel:

You need to get a scrat h test done
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ashleywheeler13
by on Oct. 8, 2012 at 9:27 PM
My daughter has PvL. We didn't find out until she was almost 3 :( but I knew down in my heart that was the cause of her cp. There are some awesome support groups on fb. :) message me anytime also :)
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mlogsdon
by on Oct. 8, 2012 at 9:45 PM
Thank you!

We have been very lucky with the majority of his doctors, his pediatrician is very dedicated to his care and gets us to specialists as soon as there's a concern. He's just now 14 months.


Quoting ashleywheeler13:

My daughter has PvL. We didn't find out until she was almost 3 :( but I knew down in my heart that was the cause of her cp. There are some awesome support groups on fb. :) message me anytime also :)
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bellarenee94
by on Oct. 29, 2012 at 3:18 PM

My daughter is now 3 years old and was diagnosed with mild PVL when she was 10 months. If you need someone to talk to feel free to message. No expereince with EE.

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