Does anyone here use the formula neocate?

If you use itis it because of allergies or intolerances, or did you use it because of the reflux?

I have been doing a LOT of reading, and I have come to the conclusion that Brooke, not only has reflux, but I think she is allergic or has an intolerance to the formula........this could very well be the whole triggeof her reflux.

The only time I have ever seen Brooke good, was for 3 days when I finally put her on hypo allergenic formula......she had 3 excellent days, and then was not too bad for a few weeks, but in the last 4-5 weeks has slowly got worse.......the pain, the shits, the rash the weezing, stuffy nose etc etc.....I know these symptoms are for reflux, but there are ALSO symptoms of allergies or intolerances.
I have thought for a long time now that Brooke has something else going on with her tummy apart from the reflux.....just little things, and of course MUMS INTUITION (which we know is the best)

I asked my A doctor to write me a script for some to try it out.....but she wants to do test first to see if she is lactose intolerant......she even had to look up neocate to see what it was used for.....and then comes back with the lactose thingy, when neocate is used for so much more than lactose intolerance...
Anyways......Keep in mind my Brooke is 4 months old....she needs to FAST for 12 hours before the test...which is not so bad as she sleeps 12 hours, but she wakes at about 6-7am.....the testing plave doesn't open until 9...she then has to drink some sugary stuff and be tested over a 4 hour period, THEN she can finally have a milk bottle.....so 12 hours sleep...plus another 3 hours before the centre opens, then 4 1/2 hours for the test......so 19 1/2 hours without a bottle of milk???????? Are they mad??
There must be another way to check....and ideas? I think in the neonaal unit when Brooke was born they tested their pooh.

Anyway......I am more leaning towards an allergy or an intollerance to milk...not so much the lactose part, and I know they can check for allergies with blood tests, but she didn't even offer this.

I have ordered a can of neocate in from my local chemist, it gets here in the morning, I have to pay $50 for it...I really dont care I would pay a $1000 if it meant my Brooke was pain free!........I am going to see if it makes a difference...and I am positive I think it will.

I did a LOT of reading last night.....and it is so damn obvious that Brooke has more going on than reflux...it actually bought tears to my eyes that the doctors have not tested her for ANYTHING!
On every web site I read, it says by 3 months, if a baby is still crying, that all these tests should be done to rule things out.....and what does my doctor say......at 6 months she should start to get better......^%%$#*&&^#.....he just doesn't get it, or how much pain she is in.

Can anyone give me some insight into neocate and allergies and intolerances?

Sorry this is so long and yet again a half rant.

Hi Kimberely... I can shed some light for you, well I hope I can. My daughter Lauren is now 15 mos. old and has grown out of her reflux.

Her reflux started from day 1 and her regular ped. labeled her as colicky and had us switch her formula. We started on milk formula, switched to soy, and then onto hypoallergenic. We went through 11 types of formula trying to find something that helped.

When she turned 7 mos. old, dh and I took it upon ourselves to see a pediatric GI. Upon the GI stepping into the exam room and seeing Lauren, he stated "I can tell she has reflux just by watching her, there's no guessing about it". I have to mention that I really love this guy. That day he diagnosed her with GER due to MSPI and put her on Neocate and Zantac. Together, these two were a miracle for us. However, I would have liked to see the results on just Neocate, but didnt' want to take the chance.

He explained that Neocate is completely comprised of amino acids and there was nothing in it that Lauren could be allergic to. The OTC hypoallergenic formulas still have ingredients that kiddos can be allergic to... hence the reason Lauren was still puking. He said that it would take a good 4 weeks to get everything out of her system once she started Neocate. He was right too... it took a little over 3 weeks for her to get better.

At our local pharmacy, a can of neocate ran about $45 a can. You can get it directly from SHS online a bit cheaper. However, and this is up to you whether or not you'd want to try, but I bought factory sealed cases of Neocate off of ebay. You have to check the exp. dates though. When I did it this way, I generally ended up paying around $25/can including shipping... so all in all, it ended up costing what the OTC formula did.

Hope that helps.

Hi

Dumb Dr
I would put all the test on the back burner and get her on neo only...
It has been a miracle for some moms but I have heard that it can take 3-4 weeks to see results (and some babies get worse before better...still don't know why)
We were going to try neo with my ds but never got around to it....if your Dr calls the company they will send your a FREE case....
I would call your ped and see if they would help you out...this way you could try Brooke on neo for a good mnth to see if it will help her

Fingers crossed

I am SO sorry you are dealing with such a horrible doctor. The thought of doing a hydrogen breath test on a 5 month old for secondary lactose intolerance sounds absolutely ridicuous to me! What harm is there in trying this formula???? It IS used for many many conditions--none of which include lactose intolerance. Lactose intolerance is an intolerance to the milk sugar. They have lactose free formula in the grocery store. You dont need a breath test to find out if she is intolerant or not and you dont need neocate for that. Your doctor needs to know that!

Neocate is for protein intolerances.....big difference from sugar intolerances. It is completely protein free--different from the hypoallergenic formulas that still have protein. Neocate replaces protein with a base of amino acids. There is no soy or milk in it AT ALL--the hypos still have small percentages.

It DOES sound like Brooke needs this formula, and I think it is great that you took it upon yourself to get the formula. You can get free samples from dieticians sometimes (they can call the rep and get you some--you just have to find one that is willing) and the company may send you a free sample if the doctor calls. If your doctor writes a prescription, the cost is often cheaper and your insurance may cover it.

There is a stool test if your doctor really wants something documented. They cAn test the stool for blood--evidence of allergic colitis brought on by intolerances to milk and soy (MSPI=milk soy protein intolerant---very different from lactose intolerance). A negatve test though does not mean she does not need the neocate. My son is on it based on symptoms and how he does on it--not on the basis of a test confirming the need. How they feel and respond is more important than test results.

Neocate has been a miracle food for Gavin. He is 14 months old and on this only. He became FTT at 9 months old, and when he switched to this he has been on the chart ever since. He still has reflux and DGE, still takes meds but the formula has helped him so much that now the meds do what they are supposed to do and he is comfortable and growing (slowly but growing!:wink: ).

I answered another post on neocate and allergies--if you want to see it, it is under the allergy section, the post is titled detecting allergies. I responded first I think. It explains a little more about why allergiy tests would likely be negative for her right now, and that it does not mean she does not need the formula.

I hope you get some much needed help for her soon....I am sorry it has been so hard!

Thanks so much ladies.....this info is invaluable :)

CARLA....already read the other thread before I read your reply here....and was amazed at the info of that answer too.

I would be a head case without this forum and everyones support!

I just wanted to mention that not a lot of people have insurance that covers the cost of Neocate. Our insurance did not, and I consider our health insurance to be very good. With a prescription, I ended up paying more.

We have top health insurance here........The cost to me, means nothing.......I will gladly pay it, to know she is not in pain....We are just lucky to be in a position to be able to afford it...10 years ago would have been a different story.

Hi Kimberley
My baby is on neocate because we tried a cow's milk based formula and her face swelled, diarhoea and cramps on top of her reflux. It works well and we will probably continue using it but count yourself lucky it costs $70 a tin in South Africa. Thats $70 every 4 days......you do the maths we'll be selling our house by the end of the year!!

Kimberly,

My daughter is on Neocate as well.
We went from Milk based Formula to Soy to Alimentum (still unhappy) to Neocate.
It's been wonderful. Mind you, it took her over a month to get completely better.
She is now on Neo+Prevacid combo and is doing as best as she can.
Ava never threw up anyway (silent reflux), she was just writhing in pain, had blood in her stool, eczema allover her cheeks and legs, lethargic, not interested in playing (I even thought she is lagging behind schedule for a while), had sweaty palms and feet (due to stress of being on the wrong stuff) and drank too much formula almost from birth.
The moment she went on Neo her intake decreased from 32oz to 24oz, eczema went away, she is now alert and palyful and is reaching all her milestones on target.
I strongly suggest you switch Brooke as soon as possible.
Order from SHS directly, they charge $128 for a case of 4 cans and then apply for reimbursement by insurance. Most insurances cover it, mine did not, but I am still trying to appeal.
Ask your GI (not regular ped) to write a letter to your insurance, that may help.
Neocate is like Gold to us and like you said it does not matter how much it is - it's working and that's all that matters.
I hope Brooke imporves and I know she will.
Hold off on all the unnessary tests, if you think she's got intolerance, go with your intuition and put her ont the right stuff.
It wont do any harm.

Good luck and if you have further questions, pm me.

Our little guy is on neocate jr. He's been on it for about six months now. Previously he was on peptamin jr. Max is a bit different as he was born with a bowel malrotation (surgically corrected) which makes his digestion less "efficient"; as well, we suspect there may be a neurological or neuro-muscular component to his reflux and digestive issues. Anyway, we switched because he would get very crampy at night on the peptamin (he is j tube fed continuously through the night). Our GI had us switch to neocate because he explained it is so "broken down" that it is more easily absorbed by the bowel than Peptamin. We found that Max is less crampy on neocate but still has problems with reflux and gas. Even though we don't suspect any allergies or intolerances, we are sticking with neocate to ease his cramping.

Good luck with the neocate. It is very expensive but it will hopefully help. We're lucky here as we qualify for a government program which covers a lot of our medical supplies (feeding bags, tubes, extensions, etc) including the neocate.

I can still hear the screaming from Jayden, he was 4 months old and the Dr's were enough to make you crazy. I am so sorry you have to take this on, it's hard enough when the Dr's are helpful. Don't back down from what you think she needs, for some reason Dr's tend to play the wait and see game and in some situations that can not be an option. I belive when your baby is in unconsolable pain you fix it now, not after some tests that sounds like are not nessasary at this time. Stephanie is still in search of a Ped that takes this seriously.!! Obnoctious swinging in his car seat calmed him and put him to sleep. We think he was getting that over the hill feeling in his tummy and that releaved his reflux for a bit. Steph got callisis on her hands from swinging him for hours literally..

I bougt a can this morning it cost me $50.....and will probably last 3-4 days.
I did however find out, that IF I can get an authority script from the doctors, I can get 8 tins for $4.75 yes $4.75 for 8 tins.......Now just getting a doctor to write a script..that will be the hard part, since they dont even know about neocate!

Kimberley, I was going to say that I know that a GP can give you a script, and if it works he has to refer you to an allergist, so that they can write repeats, otherwise it is the full cost The neocate is a small tin, probably only half the size of a normal tin, so if you can get it on script you will save a lot of money, I know what you mean about wanting to pay whatever, I am at the same stage- we are very lucky top have our healthcare in Australia- but in the same sense, you should get what you deserve and that is cheap formula, if other people can get so should you too!

I have already decided that if I have another child I will be asking for Neocate, although like you know I used the Nan and this was for top ups only, so I didn't notice a lot of difference, but next time I am going to get dietician advice and go MSPI and all top ups will be with neocate.

I wish I knew as much about reflux when Parker was little I think I would have seen a lot of improvement a lot sooner, but I just didn't know, I think it is great that you are doing this for her.

Good luck with the Dr, eventually you will get through.

I just want to point out as well....that you can get a case of Neocate from e-bay for around $70-80. I would think as long as they have positive feedback it would be safe enough.

Mason was on it a while and was terribly constipated. But he had that on Nutramigen as well. Beware of Neocate poop!! lol Cooked spinach anyone? :D

Brookes poop is like a spincah green anyway, and the consistancy of a cake mix.......sometimes even runnier....never ever in lumps or solid.....which has always bothered me, thinking something was not agreeing with her.

GO Neocate ....it has been wonderful for us. How is Brooke doing now?

Connor has been on Neocate since he was two months old and it has made a huge difference for us. We started out on milk based then soy then both Allimentum and Netramagen and finally our GI prescribed Neocate. It never helped Connor's Reflux but he use to scream and have horrible loose poops and stomach cramps on all the other formulas and it all went away when we started Neocate. Unfortunatley, our insurance won't cover it and our GI said he will be on it until he's at least 15 months. I hope it works wonders for Brooke:D

Brooke is still doing wondefully...she is like a different baby :D

The spit up today has also been very slight, without thickening.

Kimberley that is really good to hear. Hope she keeps it up.

You were asking if anyone had good results... YES!!! Our daughter had excessive vomiting and diarhea and was slowly losing weight. We tried, over the counter, hypoallergenic formulas such as Enfamils' Nutramagen with no luck. We finally had to take her to a Childrens Hospital to pediatric gastroenterologist. After doing a thorough medical history of her and the parents (my wife and I), an analysis of symtoms, etc... he concluded that she more than likely had a "milk protein allergy". He suggested that we try Neocate formula, as the over the counter hypoallergenic formulas, including the lactose free type, STILL have milk proteins in them. We were happy that he wasn't going to jump right in with a bunch of tests, but we were concerned about wasting anymore time with a diagnosis. As it turned out, he said, if he was right, we would see a change within 24 hours. We saw a difference from her very first bottle. To make a long story a little shorter... IT WORKED! She started on it at approximately 2 months old and we weened her off at approximately 11 months. She is now 13 months old and we believe, outgrown the milk allergy. I strongly suggest, you at least try Neocate formula, at all costs. It could have been literarily a case of life or death for her. That was the only thing she could tolerate at that stage of her life. Hope this helps.
FYI... I don't think I'll be checking this forum often, if at all. If you had any comments you wanted/needed to make to me, by e-mail is edward-campbell@sbcglobal.net .
Good Luck!

Shae-Lynne was six in May and that is all she has survived on for the last 4-5 years (and still that is all she can tolerate). Roni writes about the ordeal she went through with Shae-Lynne and trying different forumlas in our book, not fun. I think the Neocate cost Roni about $40.00/per can which last a day. She is j-tube fed. I think she did have a problem with constipation, but I don't think it is as bad now. Good luck, I am glad the Neocate seems to be helping. Best wishes

My daughter is just about 8 weeks old and we are on day 2 of Neocate. She is diagnosed with milk and soy protein allergies, reflux, allergy induced colitis(bloody stools). We are very frustrated as we are on our 4th formula and kep thinking each change is going to get our little girl better, but so far no permanent improvement. We just came off of them Alimentum. Sydney has several symptoms, but the one that is the worst is the pain that she is in. To see her like that is really difficult when you are trying all you can and nothing is helping. Because of her pain/discomfort her sleep is disturbed as is ours. : O

Like I said day 2 of neocate and no improvements yet, still very fussy/painful (maybe even more so today) and her stools have turned a greenish/black, very loose and foul smelling. Has anyone had this experience? What was your transition to neocate like? How long for improvement?

My son had the same symptoms after coming off the alimentum and changing to elecare (same stuff just diff company makes it) it takes time for the intestines and stomach to heal on it. I would say you will notice a difference after a week or two.
Hang in there... it will get better!

Hi, gosh i haven't used this site for a long time, so suprised you found me. My daughter has been on Neocate for nearly a year and we have just taken her off it. When she was on Neocate alone and no solids she did only green / black poo's runny with the most foul smell possible. So yes i would say that's from the formula. If she has been properly diagonised with soya and milk protein allergies then i would say Neocate is you best bet, it should take a few days for the old formula to be out her system so hopefully you should notice an improvement soon. If she still continues to be in pain i would put it to the reflux and i hope she is on some medication which also takes about 5/7 days to start working. Our poor daughter is 14months and is in pain for up to 6 hours a night with reflux, nothing has seemed to work. So i feel your pain of no sleep we haven't slept in over a year. Good luck if you would like to ask me anything else please do. Regards Kate South Africa

miki is on neaocate and we think it is great we noticed a difference in the amount of puking after about 2 days as i said on a nother thread a few weeks ago , i actualy forgot to put in there that is actualy took about 2 months to notice a difference with the amount of fussiness she had and acording to the GI it was because using the neocate doesnt fix the imflamation already there it just does not create any more alergy related inflamation, so as i siad we love and have great results on it