Any other Neocate users?

LCB34 · October 2010

We have had a really hard time with Kate over the past 2 weeks - extreme fussiness (more like screaming her head off 24/7) and TONS of spitting up/ vomiting.

After spending hours and hours at Texas Children's this week (ruling out Pyloric Stenosis, having an Upper GI and small bowel study done, getting xrays, labs, etc) they think Kate may have a severe milk protein allergy. The 1-5% milk protein in Alimentum appears to be too much for her little tummy.

So, we are on a 14 day trial run with Neocate to see if it helps. We got 4 cans free from our Pedi but man is this stuff expensive - it makes Alimentum look like a generic brand.

Does anyone else have a LO that is on it? If so, why is your LO on it and have you had luck getting insurance coverage?

I know Texas will be a mandated state come January 1 and all insurance companies will be required to reimburse amino acid formula expenses for certain reasons (CMPI being one reason) and am so thankful for that!

shipoopiisforme · October 2010

i am so sorry you guys are having such an awful time. i really hope the neocate does the trick with little miss!

smilee · October 2010

Oh, I am sorry you guys are going through this. I know how awful that screaming is; it is truly heartbreaking. I feel like I remember Firsttogo saying her son was on that.

I really hope this is the answer for you guys- poor Kate.

debdebtx · October 2010

Or could you get on the prescription to restart your breastmilk production? Did she ever tolerate breastmilk? Just curious to see if you had tried breastmilk, maybe you could get it from a milk bank? Since it sounds like she is really suffering maybe you could try that?

smilee · October 2010

debdebtx:
Or could you get on the prescription to restart your breastmilk production? Did she ever tolerate breastmilk? Just curious to see if you had tried breastmilk, maybe you could get it from a milk bank? Since it sounds like she is really suffering maybe you could try that?

Having gone the milk allergy route with D ( although not as severe as poor Kate) she would have to severely limit her diet if the allergy is that bad.

Mouseygail · October 2010

aww! I'm sorry to hear that Kate has had such a rough time lately!! Sad

And poor mama!

LCB34 · October 2010

smilee:

debdebtx:
Or could you get on the prescription to restart your breastmilk production? Did she ever tolerate breastmilk? Just curious to see if you had tried breastmilk, maybe you could get it from a milk bank? Since it sounds like she is really suffering maybe you could try that?

Having gone the milk allergy route with D ( although not as severe as poor Kate) she would have to severely limit her diet if the allergy is that bad.

I never breastfed but Smilee is right. I would have to eliminate all dairy and all hidden dairy (meaning anything made with dairy or dairy products) in order for K to be able to have breastmilk.

Pretty much all babies with an allergy as severe as they think K's is have to go on amino acid based formulas b/c it is nearly impossible for a mother to limit her diet enough for the baby to tolerate her milk.

preheatedoven · October 2010

Our DS in on Neocate. We tried so many formulas (Alimentum included) while he was in the NICU and he still had blood in his stool and very nasty residuals. Neocate was the only one he could tolerate. He was getting EBM, but like you said, I would have had to eliminate so much from my diet, and since I am already a vegetarian I decided against trying.

Thankfully we were able to get insurance coverage. We just got our delivery yesterday and had we had to pay OOP it would have been nearly $1,600 for the month!

I really hope you can get coverage. We had a NICU rep fight on our behalf. Could your pedi and/or GI make the case? I don't think our insurance normally covers it, but our NICU team must be awesome.

yankee42 · October 2010

Hey! The boys were on neocate for 15 months!

it really did make a huge difference when we were finally strictly on that, and they had gotten all of the residual out of their systems.. It is SO freaking expensive... We researched SO many ways to get it cheaper, but ended up qualifying with WIC... I was not proud, I grew up in a strict conservative household where you work hard for everything, it felt so wrong to get something for free... But we made up for it by donating everything else we had to them, diapers we didn't use, formula we couldn't use, etc. Anyways, after paying for that crap for about 4 months.. I think we earned the free ones, haha! You should look into that.. As well as our GI appealed to the insurance to try and get it covered too (didn't work, haha) but still worth a try!

j11skate · October 2010

smilee:
Oh, I am sorry you guys are going through this. I know how awful that screaming is; it is truly heartbreaking. I feel like I remember Firsttogo saying her son was on that.
I really hope this is the answer for you guys- poor Kate.

I think I also remember Firsttogo saying her son was on it. Hopefully the Neocate will fix her problems!

LCB34 · October 2010

preheatedoven:

I really hope you can get coverage. We had a NICU rep fight on our behalf. Could your pedi and/or GI make the case? I don't think our insurance normally covers it, but our NICU team must be awesome.

We are going to try. My cousin is a Pediatric GI so he said he knows several of the "tricks" to get insurance coverage. And, I am really hoping the state mandate will help the case. I think there are only a handful of states that have any laws about reimbursement for speciality formulas and I am so thankful that Texas is one of them.

kme930 · October 2010

No advice, just wanted to say I'm so sorry you and little Kate are going through all of this to figure out what works best for her tummy! I hope Neocate is the right answer and you can get it covered before January! Good luck!!