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When breastfeeding gets too expensive...

5K views 66 replies 34 participants last post by  peaceful_mama 
#1 ·
What do you do?? I'm very frustrated right now b/c WIC will happily give me 9 cans of elemental formula a month (to the tune of 350$$), but has no program in place to help a mom truly succeed at BFing if there are issues (See siggie for ours). I realized that we will begin to go into debt due to my diet by October. I want to know what we can do to change this. Its ridiculous that we can get 350$ in formula, but no one can give me say, $100 in squash or turkey or pears
Who do I start a campaign to? Darn it, I'm working my butt off (quite literally
) to BF a very sick baby but it seems that the fates have conspired against me, and I'd like it to be more reasonable for other mamas facing food allergies and intolerances to get nutrional help that really helps through appropriate programs.
 
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#2 ·
What kind of dietary changes have you had to make that are expensive? Maybe we can help you find ways to save some money with your diet.

ETA: Duh. Eliminatino diet, I see in your siggy. You shouldn't have to stay on the elimination diet forever -- you should be able to reintroduce foods one at a time once you get all the allergens out of your system. If baby is that allergic to a lot of foods, chances are you're not going to have success with the formula anyway.
 
#3 ·
I totally agree with you though, WIC should have better programs to help nursing moms succeed with dietary restrictions. My daughter is allergic to dairy. Well, so am I, really, but I like cheese. Anyway, she had stopped throwing up when I ate dairy, so I thought it was ok for me to have it, and just not give it to her. She stopped growing, and nobody knew why, but when I cut out dairy again she started growing again. So anyway, I can't use the 10 gallons of milk and 3 lbs. of cheese I get each month, because my husband's the only one who can use it. But they can't/won't give me soy milk or milk substitutes, they'll only give me Lactaid, which does diddly squat for us since we're allergic, not lactose intolerant. I'm going to find out if they'll at least give me more eggs or cereal or something to replace the milk, because it sucks that I'm having to give milk away -- I applied for WIC because we need the benefit, not because I want to give my benefit to my friends who don't need it.
 
#4 ·
Take the formula and as much as you can and bring it to a local food bank. Then you won't feel bad taking all the fresh veggies you want. Good luck!
 
#5 ·
I'm a long-term SNS user (used it with my daughter for over a year) so if you want to work something out with the formula let me know. I use the SNS because I have a hormone imbalance resulting in low prolactin levels and I don't produce a lot of breastmilk. Formula is really expensive and I'm always looking for a bargain. Let me know what kind you are using and I'd be happy to work something out with you.
 
#6 ·
I just wanted to offer you hugs mama. I understand some of what you are going through. We had severe bfing issues at the beginning and ended up spending around $800 on LCs (plus $$ on prescriptions, etc.) to get my problems properly diagnosed--b/c of our financial situation at the time, if my parents hadn't paid for most of it, I probably wouldn't be bfing right now.

Dd also has about a dozen food allergies, diagnosed at a year, so I am not on an elimation diet (though not TED), and our grocery bills have gone through the roof.

I might suggest posting on the Random Acts of Kindness, Fairy, and MDC Giving Forums, letting mamas know what grocery stores are close to you and precisely what you can eat. I know there are many here, myself included, who would gladly contribute to help keep a little bfing for as long as possible.
Good luck!
 
#7 ·
What about applying for food stamps? I absolutely have to have them or there are litterally 2 weeks out of the month I can't afford to pay for food because of bills and not much income. You can buy whatever you want using those.
 
#8 ·
Quote:

Originally Posted by wannabe View Post
Yeah, probably not legal, but I'd take the formula and sell it. Or drink it myself in smoothies to help with nutrition.

As an aside - did you know Costco sells rice dream rice milk?
I don't know the OP's child's exact food allergies, but given that she says she's had zero success intro'ing foods, I'm guessing Rice Dream is not an option. Even if the babe tolerates rice, Rice Dream has soy contamination and is not suitable for kids with soy or legume problems.
 
#9 ·
Quote:

Originally Posted by queenbean View Post
What kind of dietary changes have you had to make that are expensive? Maybe we can help you find ways to save some money with your diet.

ETA: Duh. Eliminatino diet, I see in your siggy. You shouldn't have to stay on the elimination diet forever -- you should be able to reintroduce foods one at a time once you get all the allergens out of your system. If baby is that allergic to a lot of foods, chances are you're not going to have success with the formula anyway.
:

It should be very inexpensive to do elimination diet if done properly. And remember, just because they hand out formula like candy doesn't mean it's cheaper. Think about the psychological and health benefits of breastmilk and your child's medical costs from a better immune system and less infections.
 
#10 ·
Quote:

Originally Posted by dnw826 View Post
:

It should be very inexpensive to do elimination diet if done properly. .
Actually, the totally elimination diet for severe food allergies that the OP is talking about can be EXTREMELY expensive. Usually involves 3-4 foods and if one of them is something like turkey, you can be eating literally pounds of turkey per day to get enough calories. And it can't be cheap, processed stuff either, which usually has fillers that are not okay for allergenic kiddos. Forget about buying produce in season or on sale--when there's only one fruit and one veggie you can eat, that's what you're stuck with.

As I said, dd is allergic to about a dozen common foods (wheat, soy, peanuts, tree nuts, sesame, eggs, peas, lentils, beans, etc.) and, while my restrictions are not nearly as severe as the OP's, my food bills have increased staggeringly. Just a few examples: the grains she can eat have to be purchased specially from allergen-free providers b/c bulk bins carry a high risk of cross-contamination. And baked goods have to be made with specialty flours, egg replacer, etc. American-grown oats are contaminated with wheat, so we have to buy the McCann's Irish, which is much more expensive, or special order. And on and on and on.
 
#11 ·
My dd also had allergies to several fruits, and dairy (and we went through many gluten/wheat/yeast free periods) and I went through the elimination diet several times over 2.5 years until we stopped bf.

Even just cutting out dairy alone made a huge impact on our budget. But they are temporary changes until you know for sure which ones are "out". I would suggest getting food stamps if possible, as finding an allergen-free formula is almost impossible.

I am not by any means saying WIC is awesome. We have them right now. In IL they would only give you lactaid, not soy milk. Hello! Lactaid has milk protein in it, you know, what she's *allergic* to? They just don't care.
 
#13 ·
PLease don't remind me of the effects of formula. I think of them every day when DH and I go through our near nightly debate of whether BFing is now doing mroe harm than good.

Thank you to PP who knows the expenses. FTR, I'm doing publix brand turkey (only filler is rosemary extract), pears (fresh and canned, as long as only water/sugar involved), gerber pear juice w/ ascorbic acid, and squash (winter and crookneck) w/ olive oil, sea salt and pure cane sugar. OMG! Never would have believed how much all of this adds up! Particularly since I need about a lb. of turkey a day *Gag*

As an aside, since educating is what we are all about, actually there is an allergen free formula or two, they are just only available by prescription and cost boatloads of money. Its just like you can get ibupofen/tylenol w/ out all the other junk added (which we have to do =( ) but it's by prescription and expensive - Though insurance covers it. I guess I do need to give in and go apply for F/S it's just annoying. We've been making it wokr and I hate that office, but must get over silly pride. I still think there must be someone(s) I can lobby for changes.
 
#14 ·
We didn't qualify for WIC, but I was on a strict TED with Ina (not as strict as yours, but none of the Big 8 plus no legumes) - for a long time; and with SJ I'm on a similar (slightly less restricted) diet. I too know it can become very expensive!
Ina could only tolerate Neocate when she had to be on formula, as well.

I know you've probably heard this elsewhere, but have you looked into whether you might have EOS going on in addition to/instead of allergies? I've a good online friend whose little one can only have three foods and they suspect EOS with him.

In terms of who to contact ....
: - I intended to contact my legislators about our saga and just never did. Wrote off our nearly $1000 worth of Neocate as a lost cause for reimbursement, and moved on. I feel guilty about this, as I know that other moms who don't qualify for WIC ( and/or can't afford the TED foods) are still struggling.

So, here's what my plan was:
1. Contact your local senators and representatives. Each state has its own guidelines for what WIC will do in terms of produce, formula, etc. (this is how some states allow purchases at Farmers' Markets etc.). Explain your situation - meet with them if possible - and bring documentation of what you're telling them in re: proteins in mother's milk, the benefits of breastfeeding an allergic child, etc. (you're embarking on a total reeducation campaign most likely). See whether they'd be willing to work on a bill which will alter/change what WIC can offer.

2. Do the same, on the national level, with the Senator and Rep for your area in FL.

3. Contact the local paper and see if they'd be interested in doing a story about this. This accomplishes two goals - first, publicity (which would be more likely to get politicians moving), and second - there may be someone in your community who would want to help you (if someone in your situation was in my community, I'd be there with bells on, for instance).

4. I agree about getting in the MDC giving boards and seeing whether moms there would be able to help out. It's hard to ask for things like that (especially when the government is supposedly helping you anyway
: ) but I know again, you would be likely to get some assistance.

5. Be persistent with steps 1, 2, and 3. Repeat as necessary!

6. There is a website for families struggling with infant reflux (which is often related to food allergies) - I think it's reflux.org? (PAGER) Check them out, they may have chapters in your area and may know who you should contact as well.

You are doing the right thing - I also like a pp's suggestion about seeing whether a CSA or organic grower would help you out by having you help them in trade for produce/meat? I would imagine that there are some good CSA types in your area ....

The other thought would be - you could probably grow winter and summer squashes in containers year 'round where you live ....? Definitely the summer squash at least. The "Diggin in the Earth" board could help you with that.

ETA: From what I understand about how the government bureaucracy grinds (SLOWLY) - I don't know if steps 1 and 2 will kick in in time for you (it depends on where your state's government is in its legislative process, and how quickly government contacts can be set up and more
). But you never know - it may kick in, in time to allow you to continue to bf beyond the first year if that continues to be workable for you --- and if not, it may help with subsequent children, or other moms in a similar circumstance at least.

Part of the issue is that WIC is funded out of the USDA, and there are also HHS issues too I think, so it gets pretty gnarly on the national level.

If you want to work on this nationally, let me know. I think it would need to be a concerted effort from most of the states and would probably take quite a bit of organization .... I know that I'm on a listserv that let me know last year that the USDA was modifying its WIC guidelines, and I was able to send off input to the USDA (they were considering making soy milk, rice milk and organic foods also available at the national level). I don't think that flew, though.
 
#15 ·
Have you tried freecycle? Sometimes people here offer food.

Have you tried getting to know local farmers? When I lived in WI I approached a farmer and asked if it would be possible to do some kind of pick your own thing and pay for food that way (it's cheaper) and he said sure, we got organic tomatoes for $8 for a huge tub. We ended up using them to make pasta sauce and canned them.
 
#16 ·
Quote:

Originally Posted by queenbean View Post
I totally agree with you though, WIC should have better programs to help nursing moms succeed with dietary restrictions. My daughter is allergic to dairy. Well, so am I, really, but I like cheese. Anyway, she had stopped throwing up when I ate dairy, so I thought it was ok for me to have it, and just not give it to her. She stopped growing, and nobody knew why, but when I cut out dairy again she started growing again. So anyway, I can't use the 10 gallons of milk and 3 lbs. of cheese I get each month, because my husband's the only one who can use it. But they can't/won't give me soy milk or milk substitutes, they'll only give me Lactaid, which does diddly squat for us since we're allergic, not lactose intolerant. I'm going to find out if they'll at least give me more eggs or cereal or something to replace the milk, because it sucks that I'm having to give milk away -- I applied for WIC because we need the benefit, not because I want to give my benefit to my friends who don't need it.
You can ask the nutritionist to modify your food package so that you don't get as much milk and cheese, but they can't give you more cereal, juice, beans or peanut butter. You might be able to get soy formula for your DD and drink it yourself. I know the stuff is nasty. The thing is, that the foods in the package are to fill certain nutritional categories. Cereal and eggs are not going to fill the same nutritional slots as milk and cheese. They don't think of it in terms of how much money things cost, but what nutritional needs are filled. There are only so many substitutions that are available, and not all of them are what we'd rather they be.

Remember, WIC is a supplemental nutrition program and is not designed to provide all the foods you need to consume.

Anna
 
#17 ·
Quote:

Originally Posted by firstkid4me View Post
If you take the formula on WIC they don't give you any supplemental food.
That's not true either. So long as you are brestfeeding at least once a day, mom will get a food package until DC turns 12 months old. They just don't get the carrots and tuna and extra juice. They don't get as much formula unless the child has medicaid to pick up the rest that the doctor orders if it's a special formula. If it's just the normal contract formula you get what you get. Most of my breastfeeding moms supplement with formula because of working and they still get a food package as well as a reduced formula package for DC.

Anna
 
#18 ·
Quote:

Originally Posted by Da WIC Lady View Post
You can ask the nutritionist to modify your food package so that you don't get as much milk and cheese, but they can't give you more cereal, juice, beans or peanut butter. You might be able to get soy formula for your DD and drink it yourself. I know the stuff is nasty. The thing is, that the foods in the package are to fill certain nutritional categories. Cereal and eggs are not going to fill the same nutritional slots as milk and cheese. They don't think of it in terms of how much money things cost, but what nutritional needs are filled. There are only so many substitutions that are available, and not all of them are what we'd rather they be.

Remember, WIC is a supplemental nutrition program and is not designed to provide all the foods you need to consume.

Anna
That makes sense. But it totally sucks. I signed up for WIC because we need the assistance, because we can't afford all the groceries we need. I don't feel that I should have to get fewer benefits because I don't use formula and my daughter is allergic to dairy. I, like the original poster, feel that there should be some way to help moms who need a special diet in order to successfully breastfeed and keep baby healthy. And I NEED a milk substitute of some sort, because I'm pregnant and nursing, so I'm trying desperately to keep enough calcium in my diet -- but we can only afford to get enough soy milk for our daughter, so I'm lacking, and am having a hard time making up for it with the rest of my diet.

I'm not trying to complain to you, I know that with government programs there's only so much latitude given. But it totally sucks. The benefits are supposed to be there to help people who need them, and instead what happens is that people abuse the system (selling formula/food/food stamps/etc., or simply not even trying to breastfeed because "WIC formula is free") and then those of us who are just trying to scrape by and need a little extra leeway get screwed. It's not fair.
 
#19 ·
Quote:

Originally Posted by Kierdan'sMom View Post

As an aside, since educating is what we are all about, actually there is an allergen free formula or two, they are just only available by prescription and cost boatloads of money.
Sorry to pull this off topic again but do you recall the name of them? I'm only familiar with Neocate and it's main ingredient is corn. Thanks!
 
#20 ·
Quote:

Originally Posted by Da WIC Lady View Post
That's not true either. So long as you are brestfeeding at least once a day, mom will get a food package until DC turns 12 months old. They just don't get the carrots and tuna and extra juice. They don't get as much formula unless the child has medicaid to pick up the rest that the doctor orders if it's a special formula. If it's just the normal contract formula you get what you get. Most of my breastfeeding moms supplement with formula because of working and they still get a food package as well as a reduced formula package for DC.

Anna
I think this must vary state-to-state. In my state, if you supplement at all, you no longer get the breastfeeding package.
 
#21 ·
Quote:

Originally Posted by queenbean View Post
If baby is that allergic to a lot of foods, chances are you're not going to have success with the formula anyway.
Just for the record (I'm not advocating formula but want things clear) the OP is probably talking about something like Neocate (I don't know if there are other brands). This is completely elemental, amino-acid based formula for very, very allergic babies and is available only on prescription.
 
#22 ·
Quote:

Originally Posted by Da WIC Lady View Post
You can ask the nutritionist to modify your food package so that you don't get as much milk and cheese, but they can't give you more cereal, juice, beans or peanut butter. You might be able to get soy formula for your DD and drink it yourself. I know the stuff is nasty. The thing is, that the foods in the package are to fill certain nutritional categories. Cereal and eggs are not going to fill the same nutritional slots as milk and cheese. They don't think of it in terms of how much money things cost, but what nutritional needs are filled. There are only so many substitutions that are available, and not all of them are what we'd rather they be.

Remember, WIC is a supplemental nutrition program and is not designed to provide all the foods you need to consume.

Anna
The problem is that none of these foods work for a mom on a total elimination diet: no milk, no cheese, no soymilk, no eggs, no packaged cereal, no beans, no peanut butter. When you have a kid with food allergies like this, and you are bfing, you can only eat a VERY limited range of foods--sometimes, like the OP, only 3 or 4.
 
#23 ·
Quote:

Originally Posted by queenbean View Post
That makes sense. But it totally sucks. I signed up for WIC because we need the assistance, because we can't afford all the groceries we need. I don't feel that I should have to get fewer benefits because I don't use formula and my daughter is allergic to dairy. I, like the original poster, feel that there should be some way to help moms who need a special diet in order to successfully breastfeed and keep baby healthy. And I NEED a milk substitute of some sort, because I'm pregnant and nursing, so I'm trying desperately to keep enough calcium in my diet -- but we can only afford to get enough soy milk for our daughter, so I'm lacking, and am having a hard time making up for it with the rest of my diet.

I'm not trying to complain to you, I know that with government programs there's only so much latitude given. But it totally sucks. The benefits are supposed to be there to help people who need them, and instead what happens is that people abuse the system (selling formula/food/food stamps/etc., or simply not even trying to breastfeed because "WIC formula is free") and then those of us who are just trying to scrape by and need a little extra leeway get screwed. It's not fair.
I totally agree that the amount of latitude the program gives the nutritionists is completely inadequate. Some other sources of calcium include broccoli and fortified orange juice. I'd have to pull out my old culinary school books (from my nutrition classes) to find other foods rich in calcium besides milk. Oh... Salmon is a great source if you eat the bones. I don't drink a whole lot of milk myself and am pregnant and nursing, so I feel your pain in a way. I'm not allergic, but I'm not too keen on the stuff. WIC is also a nutrition education program and the nutritionists should be working with you to help you find foods you can eat and get all the nutrients you need to be healthy. If they aren't file complaints until you get the help you need. The workers are not allowed to retaliate against you for complaining. If they do they get in bigger trouble than whatever you complained about in the first place. I not only work for WIC but am on WIC as a participant, so I get to see both sides of the issues up close and personal. The most we can do at a local level is try to get more moms breastfeeding, work on catching those committing fraud and pass suggestions up the line on how we can better serve our clients. If you're in VA you may have had to fill out a survey. It had questions on would you be interested in :soy, jarred baby foods, fresh produce, etc. So change is coming, but it's slow.

Anna
Anna
 
#24 ·
Quote:

Originally Posted by AlexisT View Post
Just for the record (I'm not advocating formula but want things clear) the OP is probably talking about something like Neocate (I don't know if there are other brands). This is completely elemental, amino-acid based formula for very, very allergic babies and is available only on prescription.

But the first ingredient on it's list is corn syrup solids. And since corn is a very allergenic food I'm wondering if something like that would still work for a baby who has multiple allergies which apparently include corn. I also contains soy oil as well.
 
#25 ·
I really think most people are getting WIC and Food stamps mixed up. WIC is not meant to be a provider of different foods, their package is what it is. Foodstamps on the other hand allow yopu to pretty much get whatever you want, if you buy more expensive foods on it you can't make it stretch as long, KWIM. Look I get Food stamps because I have to, hell my social worker with my state public health has to get foodstamps and wic and childcare assistance. I figure this is what my enormous state and income taxes go towards paying. If my state can't set a livable wage that allows its citizens to provide for themselves than why not use what assistance you can. I would not feel bad about getting some help so you can provide your child with the best nutrition possible, your breastmilk, because in the end it WILL save them lots of money. Of course i don't feel bad, I'm already doing it.
 
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