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I'm finally trying the formula (for me, not DD) - Sad news.. post #86 & #111 - Page 3

post #41 of 263
Thread Starter 
No clue. I'm half expecting the insurance company to tell me to send it back, because I know they will be super pissed when they see a second prescription for formula when they just paid for like $1000 worth.
post #42 of 263
You poor woman. I am so sad for you. Drinking all that yucky stuff and LO still reacts. Horrible. Have you thought of doing the ALCAT test? I just got it for my DD and DS. They give you a rotation diet and everything. So far, it's awesome!! They even did the rotation diets the same for the two of them (minus the foods they can't have separately). And DD now is able to have watermelon, string beans, cauliflower, almonds.... I'm excited. I wish you could have such luck. Though there were still a couple of false negatives that I know are triggers though. I wish I could help somehow. Truly.
post #43 of 263
Thread Starter 
Thanks Kathy- but really, you HAVE been a ton of help. I never would have made it this far without all you awesome MDC mamas!

I haven't considered the ALCAT... we went through enough to get the stupid ELISA done. It did help us though, at least to give me a starting point for the rotation diet. But like yours, we've already run into quite a few false negatives.

Keeping my fingers crossed that the Neocate E028 will be tolerated better!!!
post #44 of 263
BEST WISHES TO YOU!! I hope something works out for you. what are you gonna eat tonight and tomorrow?:
post #45 of 263
Thread Starter 
Bone broth with rice noodles.... mmmm.
post #46 of 263
Quote:
Originally Posted by kjbrown92 View Post
You poor woman. I am so sad for you. Drinking all that yucky stuff and LO still reacts. Horrible. Have you thought of doing the ALCAT test? I just got it for my DD and DS. They give you a rotation diet and everything. So far, it's awesome!! They even did the rotation diets the same for the two of them (minus the foods they can't have separately). And DD now is able to have watermelon, string beans, cauliflower, almonds.... I'm excited. I wish you could have such luck. Though there were still a couple of false negatives that I know are triggers though. I wish I could help somehow. Truly.
I dont want to derail at all, but could you possible talk about your experience with the alcat a little more.. what does it entail? is it expensive? is it in the us as well as uk? can you use different trigger foods than the 100 they pick? again, i do not want to derail at all, so I apologize...
post #47 of 263
sorry, i just found the pricing on their website and that there is a location in florida. I might consider trying the pediatric one....
post #48 of 263



Were you taking supplements while on the TED though? Cuz vitamin C is corn. Most acidophillus contains corn. Also, could your child have reacted to the wax on the squash and pears? I don't mean to add to your frustration, I really don't. It's just that corn allergies can be so elusive.

If the formula still seems like the best option in your situation, perhaps you could get a really fragrant essential oil and sniff it while chugging the formula. It's surprisingly easy to fool the tongue with scents.
post #49 of 263
Thread Starter 
I tried with supplements, without supplements.... The Vit C that I take now is pharmaceutical grade ascorbic acid (straight, no buffers) powder, says ok for people with corn allergies. And DD seems ok with it. I have had to switch other supplements though, and am pretty careful about the ones that I take now. They are all *supposedly* corn-free....

Honestly, DD was doing pretty good on the rotation diet. I think with a couple more foods removed, she would have eventually gotton to baseline. The real problem started when my body started rejecting foods. I was really struggling to get enough calories before that, and now....

Plus, I just started school last week, so now I'm trying to care for DD, BF 24/7, and keep my brain clear enough to get through law school... Supplements are a necessity!!
post #50 of 263
OP - have you ever been tested for celiac?? your experience is sounding A LOT like what my BFF went through in the past 6m (escalating digestive issues - appearing a lot like allergies). finally got the endoscopy and a big ol' positive for celiac. she's been off gluten for a month and is feeling 1000% better already.

i'm sorry the formula isn't working.

obvious follow-up question: is there anything in her/your environment that could be *contributing* to an allergy response (not necessarily causing it in and of itself but making it worse...)?
post #51 of 263
Thread Starter 
Good questions menomena...

I have not been tested for celiac. BUT, I cut gluten out of my diet a couple months ago. I have had gluten a handful of times since, but I was careful to watch for reactions, and had none that I was aware of.

There definitely could be additional things adding to our allergen load.... our upstairs neighbor smokes, and it comes into our apartment through our master bathroom (which of course is in the bedroom where we all sleep)... Our apartment is super drafty, and during the winter all of our windows (the rubber seals around the glass) grew mold.... There was new carpet installed just before we moved in, so that's probably offgassing... I'm sure there's more. Not much that I can do anything about though, except open windows....

Back to celiac (this browser won't let me move my cursor back up ), I did ask the doc about it. She said that if I had cut it out of my diet (any didn't notice any reactions the few times I ate it), there was no reason to test for celiac. I don't know that much about celiac, so feel free to let me know if that's not true. But I'm supposed to call for an appointment with the GI tomorrow, and I'm sure they will have something to say about that too.
post #52 of 263
interesting about your GF experience. you've been GF for a few months now? I think you'd probably see an improvement if celiac were the culprit. a word about celiac testing... if you are GF, an edoscopy will be meaningless, because you won't show damage in the small intestine either way (i.e. if you're not celiac there won't be any damage; if you are, the damage will have healed from the GF diet).

have you looked into IBS or Crohn's or a similar auto-immune type disease/disorder?

more later - baby's awake...
post #53 of 263
It's been a few days since I've checked in and so just saw this.

You have my most sincere admiration for trying this for your LO. I've just started a rotation diet myself based on DS's ELISA test (Immuno Labs) and it's (the eczema) starting to get a little better day by day. We've also been to the chiro pretty often for emotional clearing/fear elimination. I'll elaborate when I have the mental energy to do an update post.

But, as others have said, you go girl!
post #54 of 263
Thread Starter 
Quote:
Originally Posted by menomena View Post
have you looked into IBS or Crohn's or a similar auto-immune type disease/disorder?
Thought about it... haven't done any in-depth research yet. I guess I'll see what the GI says.
post #55 of 263
CS,

I tried the elecare vanilla today & it was quite tasty. It is corn solid based so I don't know if it will work but it doesn't taste horrid.
post #56 of 263
Thread Starter 
Quote:
Originally Posted by chlobo View Post
CS,

I tried the elecare vanilla today & it was quite tasty. It is corn solid based so I don't know if it will work but it doesn't taste horrid.
Good to know- thanks!! Maybe it will be in our future...
post #57 of 263
Hey changingseasons, how is it going? When will you get the new stuff? Are you holding up ok w/ school?

Fingers crossed that this will work ...
post #58 of 263
Thread Starter 
I'm already totally overwhelmed with school... but I made it through the first week! :

Hopefully I will get the new formula in the next couple days. It took forever to get the first one, but my doctor's office sent the authorization to the wrong place, then sent it to the right place and they supposedly didn't get it... but once they actually got it, it was processed really quick. So I'm hoping that it goes through quickly this time.
post #59 of 263
Thread Starter 
HA- so much for getting it faster this time... My doctor/insurance/pharmacy is SOOOO slow!! But I finally got the E028 Splash.

They only sent me 9 little juice boxes... they were supposed to send me a few days worth to try out (I think they weren't too happy that they sent me 3+ cases of Vivonex that I can't use... oops.)
So now I only have enough for just over a day, but oh well.... if it works, I just have to call and wait another week for them to send me some more.

OMG- I just opened the first one and took a drink.... this stuff is FABULOUS! It really tastes just like orange juice to me. Wow- what a relief after that last batch of nasty formula! :

Now just keep your fingers crossed that DD doesn't react!
post #60 of 263
nak
Hoping to see a post that dd did fine.
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