special needs formula through WIC in North Carolina?

[wednesday]

Does anyone have direct experience with obtaining a non-standard formula for their child through North Carolina WIC? My 16-month-old daughter has FTT (unknown cause, we're going through various testing now). She is dairy-intolerant and gluten-intolerant. She needs to be on a 30 cal/ounce formula. She doesn't eat much so the formula is 80-90% of her daily nutrition and calories. Bright Beginnings Soy Pediatric Drink has worked really well for her and as far as I know is the only soy formula that is 30 cals/ounce and suitable as all or most of a child's diet. It is not on the NC WIC approved list. We did a trial of Pediasure and it really did not work out. I want to go back to Bright Beginnings but since she qualifies for "nutrition supplement" through WIC I really think they should provide it. She can't be the first dairy-intolerant child with FTT in this state, right? Is there a mandate to provide formula appropriate to a child's health needs or is it just kind of like, if you can't eat what's on our list, too bad, so sad? She is not covered by medicaid (we have private insurance but they don't cover formula) but if it would make a difference I guess I could pursue that.

FTR we have a prescription from her gastroenterologist specifically for Bright Beginnings, on WIC's required prescription form, but they don't seem to know what to do with that in my local WIC office. They basically sent me away while they try to decide what to do. I don't know if anything's really happening. They were pretty discouraging that they could provide it for her.

[Lindsay1234]

Im not in NC but I had a similar experience in CA. Even though I had an rx for Pregestimil Lipil, it wasnt on their list of approved formulas and I ended up having to go through a medical supply company to get it.

They literally just said "No, its not on our list. Doenst matter if you have an rx, if its not on the list, we dont give it."

Ours was covered by a program in CA that supplements our state pgm. I didnt know it existed, can you ask a social worker at the doc or hospital you go to?

[wednesday]

Thanks, I will try to see if we have something like that here.

[wednesday]

[MamaOf3Cuties]

Talk to them and ask if you get a letter from your dr stating what your LO needs if they could approve it. Most states have that condition that if you get a letter from your dr stating what you HAVE to have they will provide. Also if they tell you no don't take that for a direct answer. Check the rules because sometimes you do have to fight for it.

[RoadWorkAhead]

http://www.brightbeginnings.com/prod...ric-drink.aspx

Take them that. Per that, BB Soy is Federally Wic approved, and states are just slow on adjusting...at least until a parent makes an issue of it. I doubt they'll make the effort to research it this much.

[wednesday]

They tell me that they can only provide products from a list that their computer system allows them to select from, and that BB is not in the system. I think I'm going to have to take this higher up. I looked at the list of allowed exempt medical foods and there isn't anything comparable. There are some elemental formulas that cost three times as much and that, from what I hear, don't taste that great. She likes BB pretty well and she has shown good growth on it. It's slightly cheaper than Pediasure. Anyone with a brain could see that she should be able to get BB rather than go on one of the crazy expensive elementals. I feel like I just need to reach the person who has the authority to make that decision.

I did call BB directly the other day to get their advice. The rep I spoke with confirmed that they've been asked about NC WIC before and she knew it was not on the NC list. She said to "be loud" about needing it but didn't have any more constructive suggestions.

[brookie514]

I thought WIC was a federal program?? Shouldn't the list be the same state to state?? I would be SO loud about getting it. Start calling WIC people, then work your way up to Gov if you have to. GL, mama!!

[bandgeek]

Originally Posted by brookie514

I thought WIC was a federal program?? Shouldn't the list be the same state to state?? I would be SO loud about getting it. Start calling WIC people, then work your way up to Gov if you have to. GL, mama!!

Most of it is regulated, but there's minor differences in each state. Some allow organics, some don't. Some will offer milk alternatives, some will only with doctor permission, some don't at all. And there's some variation just from office to office. Some are educated about nutrition and bf'ing, other ones tell you that you must stop bf'ing at a year or that rice cereal is a must or your kid will die of anemia. It's regulated, but not WELL.

OP, I would definitely make a fuss. They are just being lazy about getting the formula in the computer. But if all else fails, you could try insurance. Ours will cover formula if WIC doesn't.

[wednesday]

We were told that our insurance doesn't cover formula even for kids who are 100% tube-fed.

HOWEVER we may be making progress. DD's regular dietitian called me today after speaking with the WIC dietitian. She thinks there may be a way to use medicaid funding to provide the formula. Even tho DD does not have medicaid. She said something about it being a separate pot of funding they might be able to tap for her. She also said she would have a social worker from the hospital call me to discuss what other resources might be available.

[schoolmom07]

I am in NC as well. I BF but decided to look into this for you. Here is a link that may or may not help you. I can also get you in contact with a wonderful, caring and supportive woman in a WIC office who is the administrative director for BF'ing BUT who would be most helpful in any way possible for you...Hope this helps you...http://www.nutritionnc.com/wic/benefits.htm

[schoolmom07]

The following was taken directly from that site so use it to your advantage!


In some cases, when medical conditions contraindicate the use of the WIC contract standard milk- or soy-based formulas, infants may receive a special formula. Before a WIC agency can issue any formula other than the contract standard milk- or soy-based formula, the participant must obtain a prescription from a physician or health care provider. See the WIC Program Prescription for Infants (Birth - 12 months of age) (PDF, 216 KB).

It sounds as though you have already done this. But if it is not on this prescription form then they may give you a hard time. I am including it here again just in case:
http://www.nutritionnc.com/wic/pdf/2...FillInForm.pdf


As for the other, the contact person for the WIC dept...I will pm you with that. Maybe she can help you in some way, if not...perhaps she can get you in touch with who you need...

[wednesday]

Thanks! I sent an email to the person you PM'ed me about. We do have a prescription on the required form you linked to above. Unfortunately the Bright Beginnings product is not on the list of "allowed" exempt medical products/formulas. My local director took it all the way to the state and got a pretty terse NO on the issue. However it looks like as of this month DD will qualify for medicaid, and our social worker thinks medicaid will supply the formula if WIC won't. So hopefully we're making progress.

[khaoskat]

Under the new Federal WIC guidelines, you wont be able to get any formula for her unless she has one specific condition, and then they will only supply that until she is 18 months of age.

I can link you to Ohio's information, which incorporates the new WIC standards.

[khaoskat]

Originally Posted by brookie514

I thought WIC was a federal program?? Shouldn't the list be the same state to state?? I would be SO loud about getting it. Start calling WIC people, then work your way up to Gov if you have to. GL, mama!!

The foods you get on WIC (ie milk, cheese, cereal, whole grains, etc) are the same. But each State contracts with the individual manufacturers of things (ie Cereal, Bread, Formula, etc). So, in the instance of Formula, yes all States are required to cover Formula, but each State is allowed to contract out with whatever Formula maker they want to provide Formula for their participants. So, Ohio does Similac, but Michigan could do Enfamil, and Indiana could do Nestle. They work with Formula manufacturers to get a rebate system going, so that they getting a bit of a lower cost on the price of the formula, as the manufacturer will give them X amount back for each can/package purchased.

[khaoskat]

Originally Posted by schoolmom07

In some cases, when medical conditions contraindicate the use of the WIC contract standard milk- or soy-based formulas, infants may receive a special formula. Before a WIC agency can issue any formula other than the contract standard milk- or soy-based formula, the participant must obtain a prescription from a physician or health care provider. See the WIC Program Prescription for Infants (Birth - 12 months of age) (PDF, 216 KB).

It sounds as though you have already done this. But if it is not on this prescription form then they may give you a hard time. I am including it here again just in case:
http://www.nutritionnc.com/wic/pdf/2...FillInForm.pdf

This is the list of prescription formula's WIC will cover in NC...WIC in NC does not have a contract with BB, and as such will not offer it, as there is probably a less expensive option to them through rebates from the manufacturers.

http://www.nutritionnc.com/wic/pdf/N...dicalFoods.pdf

[wednesday]

Originally Posted by khaoskat

Under the new Federal WIC guidelines, you wont be able to get any formula for her unless she has one specific condition, and then they will only supply that until she is 18 months of age.

I can link you to Ohio's information, which incorporates the new WIC standards.

She has a diagnosis of failure to thrive, and they were happy to supply Pediasure for her, but she didn't tolerate it well. There does not appear to be an equivalent dairy-free product on NC's list. She could probably tolerate Splash or one of the other elementals, but then the question is, would she drink it? We tried Splash and she wasn't too wild about it.

It may be moot anyway, as at this point it's starting to look like calories may not be her problem. She's had labs done to look for Turner syndrome and growth hormone deficiency, neither of which is affected by caloric intake.

[wednesday]

Updating to share we finally got DD's formula by going through Medicaid. We had Blue Cross insurance for her already but they don't cover any formula even when medically prescribed. Under Medicaid her doctor was able to write a prescription and fill out a special form, then we placed an order through a home health company, and finally we got the formula delivered to our door. It comes by UPS from a pharmacy in another state and they deliver a month's worth at a time, which is very convenient.

[schoolmom07]

Originally Posted by wednesday

Updating to share we finally got DD's formula by going through Medicaid. We had Blue Cross insurance for her already but they don't cover any formula even when medically prescribed. Under Medicaid her doctor was able to write a prescription and fill out a special form, then we placed an order through a home health company, and finally we got the formula delivered to our door. It comes by UPS from a pharmacy in another state and they deliver a month's worth at a time, which is very convenient.

That is wonderful! I am not online right now except through the use of MIL's pc at her house so I am not able to respond right away! Glad to hear all worked out! We lost our medicaid since "they" say that my hubby makes too much money for a family of 4!!! WHAT??? It is our only income but whatever!