Paying For Pediatric Formula

Hi everyone,

Charlie had her consult with the feeding clinic last week. Due to CP issues, she is not progressing in feeding as well as we hoped. At the age of two, she continues to be formula dependent. 

The GI wants her to start using a pediatric hydrolyzed whey protein formula and to discontinue using her infant formula. However, the special pediatric formula is exorbitantly priced. Our insurance will not cover it unless she gets the formula via g-tube (she takes it through a bottle). We do not qualify for WIC. We are still waiting for her medicaid waiver to be approved. 

Does anyone have any ideas or experience paying for or getting coverage for specialized formula?  

3 Replies

  • In reply to CharlieAllene's mom:

    Hi Rebecca,

    Oh that's great news about an 80% chance of getting it covered! Ok, so Charlie has some type of Medicaid coverage as secondary, it just doesn't cover much...well, that is interesting.

    Louisiana has several waivers, but the two for kids both have long waiting lists. The budget was increased this year for the first time in a long time, so we'll see if Tucker finally moves up on the list!

    We have the HIPP program here, too, but you have to be Medicaid-eligible, which Tucker is not yet. Maybe once he is, we will apply for that too!

    And about being discharged from the NICU thinking that Charlie would catch up, and not have long term needs that would require a Medicaid waiver....I am sorry that life is not so easy as that! I so wish that it was for all of us!  I have several friends whose micropreemies also seemed fine at discharge, and now years later they are applying for the lists that Tucker has been on for years. The moms thought that they had somehow made it through the NICU and first year and were so thankful that was behind them, but unfortunately it is not.

    Huge hugs, you are SUCH a great mom to Charlie and I hope that you get everything covered to make it all work!


  • In reply to tucker'smom:

    Thanks so much Leigh! I will ask about the blended diet. Charlie does have a milk protein allergy (to caesin) which is why she needs the partially hydrolyzed whey protein formula.

    I spent all day on the phone today and I think we may be able to get it covered. The advocate said I had about a 60% chance of getting our primary to cover it and like an 80% our secondary (medicaid) will cover it. (I will post the story on my blog after I write this.)

    About the medicaid waiver, Virginia has four different kind of waivers. We have applied for the EDCD waiver (which has no waiting list) and won't cover most things. But will cover respite care, home health, and possibly an adaptive stroller. There is over a ten year waiting list for the other waiver.

    Another program we applied for in our state is called HIPP. It would be incredibly helpful. It covers co pays and insurance premiums. We are still waiting to hear back from that.

    Since the NICU doctors discharged us with the idea that Charlie would catch up quickly and easily, we didn't apply for programs in the beginning like we should have. We never saw any of this coming. A post for another time.

    I appreciate you taking the time to answer. I will ask about the blended diet. Thanks for the hugs.


  • Hi Rebecca,

    Ok, I have advice for you from two different angles, just based on what I've seen other people do in the past. We personally did not have this issue, as Tucker had a g tube and therefore his formula was always covered (or we were just lucky!).

    First: in our area, all babies still on any formula past age one are urged to switch to "big kid" formula. Some parents hear it from pediatricians, some from GI, Tucker's surgeon is the one who switched him to Pediasure at one year old adjusted.  It is something I did not even think about, I thought he could get the infant kind until he started eating, but the older kid formula has way more calories, so I get that.

    Because there are so many toddlers out there who need the formula, I think it's awful that insurance doesn't cover it without a g-tube. There are many little ones like Charlie, who have feeding issues but have thankfully not needed a tube. My first suggestion would be to appeal the insurance's decision as many times and as often as possible. Does she have a medical case manager? If you have that with the insurance company, they are very helpful in proving medical necessity for things that the company generally refuses right away.

    Secondly, a fellow Share mom introduced me to the blended diet when Tucker was almost 4. He had been on 100% pediatric formula since age 1, and he was not really growing. She suggested that we blend up real food (veggies, fruits, milk, etc.) and feed him that in order to help his nutrition. It took a while and some tweaking the recipe to get the calories right, but once we did it really helped him to grow.  Of course, he didn't have to taste it, so I never worried about the taste. There are many kids who drink the blended food through a bottle (this fellow Share mom's daughter included-she thankfully never needed a tube either) and love the taste.  I could put you in contact with her, that saved us from using a lot of formula because Tucker had 3 blended meals per day, and two cans of formula at school. So it's just another way to go, of course check with Charlie's doctor first to see if she has any food insensitivity or allergies.

    I am sorry that I don't have any resources for you that offer discounted or free formula, I know several families who pay a lot of money for it. How soon do you think she'll get on the Medicaid waiver? just curious, as Tucker is 8 and still on the waiting list here in Louisiana.

    Huge hugs,