Reaction to Neocate and EO28- what next??

[rhesp1212]

OMG! My DS has had reactions to both Neocate and EO28 splash. I don't know what else to do!! He has FPIES/ MFPI and I have noticed that he is sensative to canola, sunflower, soy and safflower oils. All of the amino acid based formulas that I have found have atleast 2 of those oils present. Thus, the reactions to both of the ones we have tried!

Anyone else have this problem? Any recommendations of what else to try?

Thanks,
Valerie

[Satori]

My dd was ana to Neocate but did tolerate the EO28 allergy wise but she grew tired of it. We ended up on Vanilla Elecare without a problem. Might be worth trying. You can also make you own elemental formula using modules from SHS. Another one to try is Vivonex Pediatric.

[terrabella]

Originally Posted by rhesp1212

OMG! My DS has had reactions to both Neocate and EO28 splash. I don't know what else to do!! He has FPIES/ MFPI and I have noticed that he is sensative to canola, sunflower, soy and safflower oils. All of the amino acid based formulas that I have found have atleast 2 of those oils present. Thus, the reactions to both of the ones we have tried!

Anyone else have this problem? Any recommendations of what else to try?

Thanks,
Valerie

Oh mama. I just looked at your history, so that I didn't put my foot in my mouth, (I was going to suggest relactating ) and wow! You poor guys. I wish I had some good advice for you.

[WC_hapamama]

Try Elecare...

[rhesp1212]

Yea, DS is sensative to pretty much EVERYTHING! He's only able to eat 7 different foods so far without having a reaction that causes a rash, reflux, delayed gastric emptying and vomiting. It's awful! I'm still BF him so that he's getting the calories and such that he needs. Even so, we're having to add a hypoallergenic complete vitamin that will cover his needs. I really would like to wean him at this point but he's reacted to every type of formula we've tried. I have visions of me nursing until he's 5!! Not that I wouldn't, if I needed to. But I'm already on Domperidone to keep my supply up.

Elecare has soy oil and something else that he's sensative to...can't remember which one! But, I'll call the allergist and dietician today to see what they say. I've never heard of the vivanex, I'll have to check out the ingredients on that one.

If you have any other suggestions, please chime in....I'm at such a loss right now!

[caribousam]

Valerie,
I haven't tried it but there is a liver based formula you can make that might work for you. It does call for sunflower oil, but I'm sure you could leave it out. It's worth a shot anyway....

http://www.westonaprice.org/children/recipes.html

Emily

[Satori]

Originally Posted by caribousam

Valerie,
I haven't tried it but there is a liver based formula you can make that might work for you. It does call for sunflower oil, but I'm sure you could leave it out. It's worth a shot anyway....

http://www.westonaprice.org/children/recipes.html

Emily

Unfortunately the OP's child is on an elemental formula which means it has no intact proteins and is only used in cases of multiple severe food allergies, home made formulas are not an option and would make the child very sick.

[caribousam]

Oh no, sorry about that....thanks for correcting me.

[terrabella]

This must be so frustrating!

[lil_miss_understood]

I hate to ask, but is there a dx of EGID?
You may have better luck posting in the Special Needs forum. I know a lot of the EGID mamas hang out over there rather than here, though they do peek in from time to time... There's one in particular whose name I can't remember atm (rachelsomething or something rachel) who would probably be great to speak to. I think she had a similar problem and one company was really great about formulating a vitamin specifically for her child...