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Old 07-06-2011, 12:12 PM   #1
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babies with protien allergies, special formulas, and the cost

my dd is on neocate. Every time I have tried switching her to something less sensitive, like alimentum or nutramigen, she gets insanely fussy and cries all the time. The neocate is good, but it is SO expensive~! I don't know what to do. How does anyone afford it?

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Old 07-06-2011, 01:18 PM   #2
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Re: babies with protien allergies, special formulas, and the cost

Have you checked her WIC eligibility? Our DD qualifies (thankfully!!) due to some criteria other than our income, but the income limits are higher than I thought. I have NO idea how we would afford the $900 a month she's currently drinking. DD is 15 months and we have at least another year of medical formula/foods.

Have you checked with your health insurance provider? Most will only cover after a huge fight and only for reasons like "malabsorption," but it's worth looking into it. Some states require insurance to pay, but not many. Here is a good link just in case you are in one of the lucky states. http://www.neocate.com/reimbursement/

Does your state allow you to "buy-in" to the state healthcare system for kids? In our state, it doesn't cover as well as medical assistance, but it's close (better coverage than the private insurance plans, for sure). You might have better luck getting the Neocate covered that way.

Also, we use Elecare because it's cheaper than Neocate. Worth talking to your ped about if you can find a better price on the Elecare.

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Old 07-06-2011, 02:18 PM   #3
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Re: babies with protien allergies, special formulas, and the cost

Check with the formula company's and see if they have a hardship discount. Some do, some don't. Also check with your health insurance as some pay for specialized formula's. We were spending around $350-400 a month and it is a huge chunk of money but I kept telling myself it is time limited and it was. After a year, we were forced due to the formula changing to switch and now its only $60-70 a month as we went form liquid to toddler powder.
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Old 07-06-2011, 03:30 PM   #4
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Re: babies with protien allergies, special formulas, and the cost

thanks
Unfortunately our insurance only pays for the formula with specific diagnosis's, and we don't quality. Apparently hysterical crying and food allergies don't count As far as I know, WIC is only income based in Illinois, and we don't qualify there either

So far we tried switching to alimentum and it did not help, the insane crying came back. We tried the switch about 2 weeks ago, and she has been back on all neocate for about 3 days.

We are thinking about trying a soy based formula next, maybe in the next month or so when she is back to baseline. I think that is probably a mistake, and the screaming will come back, but I have to try. Her prevacid is costing us $100 per month in addition to the neocate and we are talking over $500 per month. Its just so expensive~!

I feel like our quality of life is suffering.
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Old 07-06-2011, 03:37 PM   #5
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I buy DS's Elecare from a formula reseller. They're online at thesellingpost.biz
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Old 07-06-2011, 04:35 PM   #6
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Re: babies with protien allergies, special formulas, and the cost

My ds is 2.5yo and has been on elemental formula since 2.5mos. Our state does not mandate coverage, our insurance (BCBS) only covers for "inborn errors of metabolism" which I guess not tolerating one single food protein and failing to thrive doesn't fall under, and we do not qualify for WIC. Yep, it's been fun.

I used to buy off Ebay but that option has closed now. I still find some here and there on craigslist but it is higher so I don't go there unless desperate. Thankfully, I bought a ton before Ebay quit allowing it to be sold so I am good for a bit.

Things we tried to avoid elemental formula:
~every single formula on the shelf (including soy, nutramigen, alimentum powder, alimentum RTF)
~raw goat's milk
~donor breast milk from mama's eating reg diet, dairy free, dairy & soy free, TED mamas
~me relactating (which I wasn't able to do cause I don't produce to begin with)
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Old 07-06-2011, 05:36 PM   #7
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Re: babies with protien allergies, special formulas, and the cost

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Originally Posted by wendow View Post

Things we tried to avoid elemental formula:
~every single formula on the shelf (including soy, nutramigen, alimentum powder, alimentum RTF)
~raw goat's milk
~donor breast milk from mama's eating reg diet, dairy free, dairy & soy free, TED mamas
~me relactating (which I wasn't able to do cause I don't produce to begin with)
Randomly I relactate with my period. The other month there was enough for me to squeeze it out and for some reason I thought "You know? If I hadn't given my pump to my sister I would try to use it now." Next time I notice this I should probably give it a shot and rent a pump for a few days. I'm scared to though cause I had a miserable time with producing (over supply, milk hoarding my boobs would go up to a I cup inbetween pumping, and chronically clogged ducts.). I'm not sure I could go dairy, soy, wheat, and nut free either.
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Old 07-06-2011, 05:43 PM   #8
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Re: babies with protien allergies, special formulas, and the cost

my insurance paid for dd's elecare, but can i just say how cute your avi is!? omword!
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Old 07-06-2011, 10:37 PM   #9
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Re: babies with protien allergies, special formulas, and the cost

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Originally Posted by purpledayz View Post
Randomly I relactate with my period. The other month there was enough for me to squeeze it out and for some reason I thought "You know? If I hadn't given my pump to my sister I would try to use it now." Next time I notice this I should probably give it a shot and rent a pump for a few days. I'm scared to though cause I had a miserable time with producing (over supply, milk hoarding my boobs would go up to a I cup inbetween pumping, and chronically clogged ducts.). I'm not sure I could go dairy, soy, wheat, and nut free either.
I would probably try especially since you are looking to give your ds a formula that is $$ and gonna not taste so wonderful. I am already mostly dairy free (went dairy free when I was trying to relactate and realized I feel much better off dairy). Cutting nuts would be easy. Wheat and soy would both be hard for me but might be worth a shot!
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Old 07-07-2011, 06:26 AM   #10
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Originally Posted by wendow

I would probably try especially since you are looking to give your ds a formula that is $$ and gonna not taste so wonderful. I am already mostly dairy free (went dairy free when I was trying to relactate and realized I feel much better off dairy). Cutting nuts would be easy. Wheat and soy would both be hard for me but might be worth a shot!
You know, I've wondered about whether I could use the milk when I relactate with my period. I've actually always had some, even before being pregnant. But it tastes kind of salty ( yes, I've tried it) like what's called "weaning milk." Though DS is on elemental formula, I pumped exclusively for twin DD for 5 months, and also dealt with oversupply and frequent engorgement. Since DD doesn't latch, it would just be a matter of expressing a bit into her formula, just for the antibodies and other bm goodness. Should I try it?
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