Posted By Posting
Oct 19, 2010
Running out of ideas!!!
Dear Friends at PAGER!!! I am running out of ideas! I just switched my son who has GERD, DGE and severe food sensitivities from breast milk to Nutramigen after 7 positive tests for blood in his stool. I was on the elimination diet for 3 months and was attempting to add wheat back into my diet! He has been on the Nutramigen for 9 days and seemed to be doing beter. Still throwing up but I could finally identify his cries(hunger/tired/stomach)!!! Of course with the same road like always..... one week and I started to notice an increase in bowl movements per day and then a dark mucus in his stool!!! My gut told me it was blood but I just wanted everything to be ok for ONCE!!!!! I just got back from the peds office and of course, positive for blood in his stool!!! I know the next step is NEOCATE but I can't afford it! I don't qualify for WIC and my insurance company will not pay for formula!! I have to go back to work in November so my time with him is winding down!! I can't go back to work, noone knows him like I do!!! They would have not noticed the diapers and it would have been a longer period of time of discomfort!! I am trying to go back part time but my husband was out of a job for 7 months and just found a job making just enough to pay our mortgage!! OMG what the heck am I going to do????? I am so SAD and need support because my family and friends have never gone through any of this! Why??? I struggled to get pregnant for 5 years and I am sick of being tested!!! Help me with some ideas!! Yes your all right, I think I need some meds! Ha!!!Just so frustrated and sad! Thanks!
Oct 19, 2010
See if your doctor's office can order you a case of Neocate samples to get you started. Our allergist gave us all the samples Neocate would send, which amounted to 4 cases - or 16 cans. We are still using them as we fight the battle with our insurance. The sample cans also come with a coupon for another free can, though you can only use one per child. But still, send it in and it's another $35 you save. Pretty soon we'll have to start paying for the Neocate out of pocket - as we continue to fight with insurance - but it is worth it. We can't really afford it either but we'll have to find a way.

Go to and spend some time reading the resources they have posted. What state are you in? A handful have legislation requiring insurance companies to reimburse for formula in cases of multiple food protein allergies. It still won't be easy (we're proof - we live in Texas with HB 2000, and they're still refusing to cover it so far), but at least in some places the law is on your side.

If all else fails, Neocate has an assistance program you can apply for if it's your only option. I'm not sure exactly how it works because we're trying to exhaust everything else first. But it is probably worth checking into.

The website has lots of helpful information - just click "Reimbursement Support." Neocate even has a number you can call to talk to someone about the process for trying to get it covered. It is very stressful and a lot of work, but when your kid needs it, what choice do you have?

My daughter tried every formula there is. She initially improved on Nutramigen, but her symptoms returned after a couple days. The same thing happened with soy, and then with Alimentum Ready-to-Feed, although we got almost one full week of relief on that. On the Neocate though, her symptoms disappeared immediately and we haven't looked back. If your baby is especially sensitive, this formula is worth every penney.

I am sorry for what you're going through but you're not alone. It's painful to have to leave your baby to go back to work in any case, much less when your baby is sick. But even though it's hard, it can be a good thing in some ways if you find the right place. I love my daughter's daycare and she loves it too. Her girls are amazing - they know her so well and she'll do things for them that she won't do for me at home (like eating all her bottles!). I think it helps for her to be around her peers because all the babies learn from each other. Kylie's girls have supported us every step of the way and tried every crazy idea I had to help her until we finally discovered all the allergies. I'm sure they think I'm the most neurotic mom on the planet, but they keep a good sense of humor and they truly care about my daughter. For her part, Kylie loves being around the other babies and all the learning and playing they do all day.

Oct 19, 2010
Dear dcd, You have always been a big help! Thanks!! I will look into the Neocate website again!! I guess I need to get on the whole daycare thing also!!! I just think if we can some how use our savings for a year and I can work part time while my mom watches him then it would be worth it! I am still trying to get a hold of David at MARCI-Kids! We keep playing phone tag! My son was doing well on Nutramigen but like i said I can see in an increase in bowel movements and now traces of blood!! He is so sad and feels like crap!! thanks for your help!! It is sooo nice to be able to talk to someone because my friends and family here do not understand!!! Oh I am in NEW YORK. Thanks again and you are not neurotic!! Just well informed and want what is best for your child!!!
Oct 19, 2010
Hey I dont know if it will help but I just had to fight with my insurance and the pharmacy plan told me no that they would not cover my sons Alimentum. I then found it on another site to try it through medical supply. I called the insurance back and asked them to try it through medical supply and the said it had to go through a process to be approved. Well the first denied it and I asked for it to be sent for individual review and my ped had to write a letter and state that this was the only 100 percent nutrition that my son was getting that he had been tried on 5 other formulas, that he had to sleep and be elevated at all times and so on. They finally approved it and back paid me for the formula I had purchased myself. I was able to find a supplier to order it for me and have it shipped to my house and they deal with the insurance company to get remibursed. I know what you mean about the support... I think people think I am crazy they all say on its easy with a newborn... not in my case its not. I have to go back to work Monday and I am not looking forward to it but I did find someone that I have been working with to watch him and I did it on a trial basis first to make sure him and her could be ok... its working out so far... fingers crossed!! I def dont have the newborn who sleeps eats and poops... that has never been the case... Good luck!! Hope everything works out for you!
Oct 19, 2010
Wonderful news for your Meredithy! New York is one of the states that requires insurance companies reimburse for Neocate in cases of medical necessity! You can find all the info on the Neocate website like I said before.

Keep in mind it will still be a huge pain and a long process. For us, my husband's insurance is a self-funded plan, meaning they are excempt from the Texas law. His EMPLOYER will make the decision about whether to cover the formula or not - not the insurance company. So we are right now preparing our packet of medical history and letters from everyone (her pedi, her allergist, her daycare provider, and myself) that can attest to the fact that NEEDS this formula. We will submit it to his company's corporate office and hope for the best.

Ours is a special case though - most insurance plans are subject to the state mandates. Honestly, it's a lot of reading through things to figure it all out. One tip - when you submit your claim, do not go through customer service. Ask to speak with a case manager right off the bat. (They may require you to submit your initial claim through customer service and once it's denied, will then match you with a case manager.) MAKE SURE they submit your claim for reimbursement of the Neocate as a "major medical" benefit - NOT as a "pharmacy" benefit.

If you have questions or get confused, call Neocate and they should be able to walk you through the process. Very best of luck. Please keep your fingers crossed for us too! (Jacksonsmom's story gives me hope!)

Oct 19, 2010
ps. If you can make going back part-time and having your mom keep your baby work, that's great! I hope you can. But I just wanted to encourage you that many daycares are not as bad as you are imagining and in fact some, like my daughter's, are really a blessing!
Oct 19, 2010
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site:
Ask the Peds office if they can call you when the formula rep drops off the Neocate samples. Our's did and saved us tons of money, Jedd was the ONLY child in the practice using Alimentum so we got it all.

Also, we bought coupons and formula off of Ebay. Saved tons and tons of money that way!!!! I never had a single issue with either the coupons I bought or the formula cans.

Oct 20, 2010
Dear dcd, Jacksonsmom and jeddsmommy! You ladies are wonderful!!! of course we are now on NeoCate as of yesterday and I have seen an improvement already!! Limited throwing/spitting up and his little hands are not clenched!! He is smiling for the first time in a long time!!! His head is not arched back and crying and no more blood in his stool!! Please work!!!! My ped has been great! I just walked out of her office today with 10 cans of Neocate. The nurse called the pharm rep and was waiting to hear back about getting some more!! My insureance already has given my peds office a hard time about the insurance covering the neocate and told them they have no idea what they are talking about when it comes to reimbursement at the formula according to legustlation article 33!! Ha! I am ready to fight! Because of all of your great suggestions and help, I am submitting letters through my ped office tomorrow!! I will definitely need help and I will call Neocate tomorrow! I will keep you updated! Fingers crossed for all!! What the heck is wrong with these nasty insurance companies denying the only thing that is keeping my son alive!!! Good luck dcd! Way to go jacksonsmom!!! You guys are really helping me out!!! I will be back! Thanks! You have all given me hope!! Best of luck going back to work jacksonsmom!! I go back in November.
Oct 23, 2010
Ginger Bennett
Mom to Stanton - 2 year old with GERD, DGE and MPI
We are on Elecare...but also had to fight to get it covered. Learned that it needed to be coded as medical equipment. Once we finally figured that out - it worked....however, is considered an "out of network" expense so they only cove 50%. The Elecare is $684 a week for us so we wrote a letter of hardship to the medical supply company that delivers it and they granted us a scholarship for our co-pay. Our pediatrician also has a rep who brings us a case (week's worth) every month! I hated to ask for help but we needed it and people wanted to help. I hope and pray the same for you!
Check with your
doctor first!