Anyone who uses neocate please read

UCONNHuskies

Is your che super gassy? Has bad (smelly) gas? His/her poop black but powdery? Constipated? Do they sleep well? If your LO has excema does s/he still scratch all night? I have been fighting a losing battle since Oct with my son's excema and the dr and allergist declared it a food allergy. We have been on Neocate for two weeks and sadly I feel like there has been no improvement. Even Benadryl doesn't help him sleep. Last night he was up every two hours after his 'long stretch' of 3 1/2 hrs. 

Many advices or comments would be appreciate I you are down or been down this road.

 

TIA 

Miller238

Her poop and gas were horrible on Neocate, but her poop wasn't black or powdery.  It was pretty loose though.

She was definitely not constipated.  Went 3-4 times a day on the formula.  She slept fine on it.  Her eczema improved while on Neocate, so she wasn't up all night scratching anymore.

Are you feeding him anything else besides Neocate?  We started our daughter on it when she was 9 months old and then she switched to Neocate Junior until she turned two in December.  Has your son been tested for allergies?

I am so sorry you are going through this.  It is so hard and frustrating.  It's a complete guessing game and it is hard to get doctors to listen to you sometimes.

pete0121

She is not gassy per say, but when she does pass gas it smells horrible and so does her poop.  Her poop is black-dark green most times.  She goes 3-4 times a day as well and it is looser.  She's never had eczema so I can't speak to that.

UCONNHuskies

He is only eating applesauce. My insurance denied us and the dr's peer to peer appeal. I am struggling to keep my head above water here. On the way home from an emergency allergist visit he scratched himself to bleed so badly his entire face was covered and I started to scream and cry when I pulled over do my husband could move to the back to distract him. We have done the t gel shampoo but now are moving to tar soap and a new moisturizing lotion. My allergist was sad to tell me he has seen children worse than my son who have been denied. In his words, insurance isn't about helping you. It's about them making money.

Miller238

UCONNHuskies:

He is only eating applesauce. My insurance denied us and the dr's peer to peer appeal. I am struggling to keep my head above water here. On the way home from an emergency allergist visit he scratched himself to bleed so badly his entire face was covered and I started to scream and cry when I pulled over do my husband could move to the back to distract him. We have done the t gel shampoo but now are moving to tar soap and a new moisturizing lotion. My allergist was sad to tell me he has seen children worse than my son who have been denied. In his words, insurance isn't about helping you. It's about them making money.

That makes me so sick.  I don't see how insurance companies can do that.  Have you contacted Neocate directly to explain your situation?  I wonder if they can work something out to help you.

Instead of using lotions on him, try using just aquaphor.  Lather him up at night and then cover him with 100% cotton pajamas.  I am sorry you are going through this.

MrsPBNJ0220

Our DS has black poo, and goes maybe once a day. For sure has no rpoblems sleeping. I know it took us about one month to fully see everything start to really work.

Also to PP, Neocate offers a program for assistance. You just have to show proof that insurance denied you and qualify financially. 

stephaniegheller@aol.com

My son was diagnosed with severe eczema at a couple months old. We are on Neocate and were repeatedly denied by insurance regardless of what our doctors said. It was a huge financial burden on us, and we could barely keep our heads above water. I finally got them to pay last July after I wrote a personal letter to the insurance company and told them our story. Our case was elevated all the way to the administrator level, and I was even told by someone at the insurance company that they have never seen them pay for formula before us because it was a specific exclusion. They paid until he turned a year in October, when I appealed again. After two months, and another letter, they are  paying until June. I plan to keep appealing and keep fighting until he no longer needs it. If you want some help with what to say, you can message me. good luck.