Elemental Formula for ME!? Know anything about Tolerex or similar?

[Gypsymom]

Doing a hardcore ED for my little guy...

Lucked into a few minutes on the phone with a real ped allergy specialist RD and she told me that if I've got a decent baseline, she would recommend I stop trying new foods and just hold the fort, except that my own nutrition is certainly suffering so she wants ME to go on formula. Bizarre, right!? She recommends Tolerex made by Nestle but so far I haven't found a pharmacy that carries it. Apparently it tastes just as bad as the stuff for the LOs 

Anyone tried this route to keep nursing?

p.s. I'm thinking I might still keep trialing foods, but it's a very, very, slow process for us.

[scarlettsmom]

I did not go that route but was extremely close to it.  I think it is a great suggestion and can't believe I didn't think to suggest it!  .

You can check out several different elemental Formulas here http://www.allegromedical.com/blog/buyers-guide-to-adult-and-child-nutritional-products-1024.html  (under digestive health support). Will probably have to order it online, but would be nice to get it covered through your healthcare.

[Gypsymom]

I did not go that route but was extremely close to it.  I think it is a great suggestion and can't believe I didn't think to suggest it!  .

Hmm. Why do you think it's a great suggestion? It has so many ingredients! And the first one is corn-based. How did you decide not to do that? I was thinking maybe I could be tested to see what I'm actually deficient in? It seems to be if I take good supplements and cover my calories via my safe foods, that should be enough???

[*Liz*]

No idea about the main question but tests for deficits in nutrition are not very reliable as they only really measure blood levels - so can't really say how low your stores are getting - in other words a problem will brew for ages before it shows.

Plus I would guess you have issues with calcium and protein? I think that is why she is suggesting the formula - to keep everything balanced - supplements would only do the vitamins and minerals.

And it should be OK for your guy as that us the whole point of the stuff - I mean if you wanted to stop BFing that is what you would wean onto iyswim?

[scarlettsmom]

I did not go that route but was extremely close to it.  I think it is a great suggestion and can't believe I didn't think to suggest it!  .

Hmm. Why do you think it's a great suggestion? It has so many ingredients! And the first one is corn-based. How did you decide not to do that? I was thinking maybe I could be tested to see what I'm actually deficient in? It seems to be if I take good supplements and cover my calories via my safe foods, that should be enough???

I think it's a great suggestion because you are so incredibly limited that it is extradorinarly difficult to get everything you need to remain balanced and healthy.  Even though the first ingredient is corn it's an elemental formula, the proteins are broken down so much that it should pose no issues.  As Liz said, if you stopped nursing that is what you would give your LO (think Neocate).

I decided not to do it because at that point we began seeing a turn around with foods that I could add to my diet and I knew we were coming out the other side.  If I had it to do over though I would have been on something like that from the beginning.  I was on to limited an ED for too long and it took it's toll. 

[Gypsymom]

Thanks for the thoughts, ladies.

Plus I would guess you have issues with calcium and protein? I think that is why she is suggesting the formula - to keep everything balanced - supplements would only do the vitamins and minerals.

I do have a safe calcium and I'm eating the chicken twice a day. I also bought some protein powder (for protein shakes made from sprouted brown rice which says it has a complete array of both essential and non-essential amino acids and has a net protein utilization score of 98.. I will trial that very soon.

Friends visited this weekend with a tube-fed baby and he gets Neocate. They told me it costs them $1K a month!! And the smell of that stuff was pretty bad. I'm not sure I could swallow something like that if it tastes anything like it smells...
The RD recommends mixing the powder not into a liquid, but into a puree such as pears to help disguise the flavor.

[*Liz*]

I must confess that the elemental forumlas make me heave - I don't think I could drink them - not in enough quantities to make a difference.

[Gypsymom]

I must confess that the elemental forumlas make me heave - I don't think I could drink them - not in enough quantities to make a difference.

I'm worried about that; I have especially sensitive tastebuds (formerly a good cook and foodie before all the m/s etc!!). What about injections?? I know people who go on super strict lo-carb diets but they get shots to keep things up (medical clinic runs it).