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Raising Special Needs Kids Raising Special Needs Kids

More diagnosis

Posted by on Oct. 6, 2012 at 3:05 AM
  • 20 Replies
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
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Replies (1-10):
darbyakeep45
by Darby on Oct. 6, 2012 at 8:34 AM
1 mom liked this
My good friend's son has EE...the second diagnosis you mentioned. He was allergic to eggs, milk, soy, and nuts.
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lifeisajoy
by on Oct. 6, 2012 at 7:41 PM

Hugs-don't have any experience with those-bump

mandee1503
by Amanda on Oct. 6, 2012 at 11:15 PM

I know a little guy with EOE, they work closely with CURED, you can find them on fb. She does a lot trying foods. I think her little man is up to dum dum lollipops, and rice cakes. He has a lot of scopes done. I hope you can get some answers!

Mipsy
by Chelle on Oct. 7, 2012 at 12:26 AM
There's a ton of eosinophilic disease groups on fb. Also check out the young children with food allergies group here on cm, there's a few moms in there whose kids have EoE. *hugs*
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i.heart.myboys
by on Oct. 7, 2012 at 9:59 AM
I know a few people who have EE but I do not know much about that malacia. We have a few different malacia's though.
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sammygrl77
by on Oct. 7, 2012 at 8:47 PM
My son has PVL. He was diagnosed at 6the weeks old. The outcome is different for everyone. I have no experience with the other.
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mom2zachy122
by on Oct. 7, 2012 at 10:03 PM

Okay, let me preface this by saying I haven't addressed infant feeding in YEARS (like, literally all the way back in graduate school).  I don't know if this helps, but:

- since the main cause (as I understand it from post-grad literature) is food allergens, I'm not sure why continuing p.o. intake of solids is the FT's first call.  Did she explain why? 

- given the first dx you mentioned, I would expect (and again, I am NOT currently practicing in the field) some gross motor involvement with predisposition to GERD, possibly aggravating the EoE.

I would think that feeding p.o. is useless at best, dangerous at worst if there is constant reflux/vomiting....., not to mention the danger of aspiration of reflux/vomitus.  The last thing your son needs is a burned out esophagus. Wouldn't that complicate p.o. intake further down the line?

Not at all sure what immediate plans would be.  I would guess a period of p.o. rest and then initiate an extremely, extremely conservative p.o. program with very exactly measured amounts, starting maybe even as small as 5-15 mL.  What has your research uncovered?

mlogsdon
by on Oct. 8, 2012 at 1:13 AM
That's exactly my argument. I'm thinking she just has no experience with the issue. To me- common sense says, if I don't know what's causing it, don't play around with it!

When he was just on formula, there was just regular spit up (he does have low muscle tone and motor delays) but no projectile. When we started doing solids, he was constantly throwing up, out of nowhere, projectile vomiting. Even in his sleep.

So- we have (by my decision) stopped solids, and have had him on Zantac for the past month or so until we see the allergist. So far so good. Longest time without vomiting is now a week, vs 3-5 times daily.

I'm sure he would do better without a milk- based formula, but I actually see his GI this week and we will go from there. The feeding therapist will be shown the door if she continues to push me. She's worried about him losing interest in food. NOT a problem, he screams at me when I don't share sometime he sees me eating. Lack of interest is not a concern ;-) so if she can't understand why I refuse to give him food, then I will happily find a replacement.


Quoting mom2zachy122:

Okay, let me preface this by saying I haven't addressed infant feeding in YEARS (like, literally all the way back in graduate school).  I don't know if this helps, but:


- since the main cause (as I understand it from post-grad literature) is food allergens, I'm not sure why continuing p.o. intake of solids is the FT's first call.  Did she explain why? 


- given the first dx you mentioned, I would expect (and again, I am NOT currently practicing in the field) some gross motor involvement with predisposition to GERD, possibly aggravating the EoE.


I would think that feeding p.o. is useless at best, dangerous at worst if there is constant reflux/vomiting....., not to mention the danger of aspiration of reflux/vomitus.  The last thing your son needs is a burned out esophagus. Wouldn't that complicate p.o. intake further down the line?


Not at all sure what immediate plans would be.  I would guess a period of p.o. rest and then initiate an extremely, extremely conservative p.o. program with very exactly measured amounts, starting maybe even as small as 5-15 mL.  What has your research uncovered?

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mlogsdon
by on Oct. 8, 2012 at 1:15 AM
Thank you! I found a group on facebook for EOE. What is CURED?

Quoting mandee1503:

I know a little guy with EOE, they work closely with CURED, you can find them on fb. She does a lot trying foods. I think her little man is up to dum dum lollipops, and rice cakes. He has a lot of scopes done. I hope you can get some answers!

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Elyssa414
by Elyssa on Oct. 8, 2012 at 5:07 AM
I don't have experience with this, but I wish you luck!
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