Posted By Posting
Sep 25, 2010
ijetmx
DHA & ARA in formulas
Hello, I am new here. I have a two month old son that suffers from AR. We had him on ALIMENTUM to start like our first son, but he seemed not to be doing as well. Had the stool test done and came back positive leading to the MSPI problem. So to the financially devastating Neocate it was. A very large difference with that alone. However his AR seemed to be bad, and he was put on Zantac. That seemed to work and then after two weeks not so much. I did A LOT of research that seemed to be never ending on the internet about this. I came across MARCI kids and many other forums. I was dead set that based on the info, the Zantac had stopped working and I needed to try for a PPI. Of course the battle of the Pedi and requirement for an upper GI started. We were not ready to have our little guy subject to radiation for the UGI when he was eating, gaining and evacuating fine. Just the AR as our first son had. So due to his MSPI and ever worsening AR I ordered the CaraCream Max for Zegerid OTC. In the meantime I had to order another case of Neocate Infant from Ebay due to the cost (despite alleged NYS legislation for insurance coverage which we are still fighting to this day). Due to an over sight on my part I ordered a case without the DHA and ARA added. It arrived, and my wife who was suspicious of the additive to begin with due to knowing a child that had an allergy / reaction to it decided to start using it before the old can of Neocate with DHA/ARA in it. Within 24 hours we had an 80 to 85 percent change for the better. An almost new baby. So that lead me to find this link : http://www.cornucopia.org/DHA/AdverseReactionReports.pdf Note the cases of AR / colic. We did not experience the loose poops but did the AR, fussiness and gas / spit up. He has only had two doses so far of the CaraCream with Zegerid. I am not sure if we will see any difference or not at this point. I will update this post when we do. I don't know if this will help anyone or not. I really wish I had found the info on the DHA / ARA problems earlier. I had no idea that it may have been causing some of his problems, but you can't argue with the results.
Sep 27, 2010
adelines mom
Thank you for posting this! I have had the same opinion regarding DHA/ARA. I have been telling my doctors the same thing for the last 28 months. I took prenatal vitamins my entire pregnancy with DHA in them. I was sick 24/7 the entire time. My daughter Adeline has had terrible reflux. We first started out on Enfamil AR. She developed blood in her stools. We quickly changed to Alimentum Ready to Serve and things did get alittle better. Months later I changed her to Nestle's Good Start Nourish Plus, which was their basic formula with no DNA/ARA in it. I got a letter from them last December saying they were no longer going to make it. Bought up all that I could get my hands on and we just ran out of it a month ago. We are currently using Nestle's Good Start Protect Plus 2B. She has transitioned pretty well, but the last two weeks reflux has gotten worse again. Think she might be getting her two year old molars. Anyway, just wanted to pipe in that I do think the DHA/ARA makes the reflux worse and our children sick! It was amazing reading the adverse reaction report. Just like reading Adeline's medical chart with all the problems. Thank you and you are not alone.
Sep 27, 2010
ijetmx
You're welcome. I'm glad the info could help or at least shed some light on it. Our son is now back on a fussy wave and spitting up much more than before. We have not figured out why. It might seem as though based on some research and talking to a pharmacist that he has somewhat outgrown his Zantac dosing. We are changing that a bit to see if it helps. There is still a noticeable difference having him off the DHA /ARA formula. We did try the Zegerid with the CaraCream from Buffer Babies, but we stopped it. Of course his new wave of relapse started right before the introduction, however at the time we thought it may have caused it. After things settle out a bit we will revisit the PPI with Buffer. Sorry to hear about your troubles with the formulas as well. It is always my luck too that once I find something I like or in your case works they stop producing it or will no longer carry it. I think I read about that happening to another family on one of these forums as well. Good luck and thanks for the info on your daughters reaction to the DHA /ARA
Sep 28, 2010
dcd
So what formulas are available without DHA/ARA? Are there any elemental formulas like Neocate/Elecare available without these additives?
Sep 28, 2010
dcd
Ps. I see you are using Neocate without DHA/ARA. I didn't think they made that anymore...what will you do when it runs out?
Sep 28, 2010
ijetmx
Yes, we are currently using and ordering Neocate Infant (without DHA / ARA) from Walgreens as it is the only "in network" provider for our insurance to cover it. After you mentioned hearing they were going to discontinue it (which I had not heard) and fearing for the future of my sanity I checked their website and then called the customer service number and asked. They said they had not heard anything about discontinuing it. You can still currently order it now. http://www.neocate.com/aaa_neocate/700-neocate-products-Neocate-infant.html Again we still have the spitting up in waves / AR but the squirming, arching of back and tucking of legs has pretty much gone away once changing from the DHA /ARA to formula without it.
Sep 28, 2010
dcd
Oh, ok! That's great news. We may give it a try. I hope you don't mind me asking - how did you get your insurance to cover it? We're in Texas and although HB 2000 requires insurance companies to reimburse us for it, ours has so far denied our claim.
Sep 28, 2010
ijetmx
We are currently in the process of getting the Neocate formula covered. I do have friends who have had it covered, and our Pediatrician says that she has been able to get Neocate covered in the past. I first made the mistake of submitting an appeal to our prescription company, they denied our claim. I then found out that our health care insurance will cover the Neocate under "major medical." Neocate is considered a "medical food." Some health insurance representatives are misinformed. When I call, some of the reps insist that the formula is only covered if it is given through a feeding tube, I asked for a supervisor. The supervisor said that the reps were incorrect. The formula must be an "enteral" formula, which Neocate is. Our Dr. had to write a letter stating that the formula is an enteral formula, that it is the sole source of nutrition, and why our baby is on this formula. www.neocate.com has sample letters and the information on Texas Law. We have to purchase the formula then submit a claim for reimbursement. We are waiting for reimbursement at this time. I hope this helps.
Sep 30, 2010
dcd
Thanks. We are in the same place ourselves. Customer Service kept trying to file the Neocate under the Pharmacy but it's a Major Medical Benefit.

We're working with a Case Manager now. She has already taken our claim directly to the Director of Care once, who denied it. We found some additional phrasing in our policy yesterday that further supports our case, so she is taking the claim to him again today. If he denies it we will have to go through the long and arduous appeals process.

I wish you the best of luck. When you do finally get it covered, please post to update us!

Check with your
doctor first!