New Label Neocate Jr.

 

The FPIES Foundation was founded with families in mind-- our mission is to support, educate, and empower. Parents have expressed concerns regarding symptoms and/or reactions from the recent Neocate Jr. label change.

 

In response to our interactions with concerned families and Nutricia representatives, The FPIES Foundation would like to offer this discussion thread to provide an avenue of support for sharing experiences, insights, and constructive viewpoints.

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  • The FPIES Foundation hopes to continue on-going discussions with all invested parties. Subject matter contained in this thread may be shared in the process of facilitating resolution of current concerns and to include future/ongoing awareness of FPIES.
  • The FPIES Foundation has no conflict of interest and is in favor of positive resolution in this matter for all invested parties.

 

The FPIES Foundation

Original Post

My name is Angela Teague and I have a currently undiagnosed child who is 2 years old named Penelope Rose. We have been on Neocate since April of this year and have problem solved through a few different forms of it. Our Occupational therapist has an Fpies kiddo and through her support we have followed the typical protocol to get our reactions under control!

Infant formula was a fail because the Soy was too much, Tropical caused severe acid reflux with some nasty vomiting of mucous and bile, Chocolate caused stomach pains and severe hyperactivity with rashes and swelling, Vanilla seemed to be a step in the right direction but her stools were pure liquid and the rashes were unmanageable. We switched to the Plain/Unflavored/without prebiotics when her doctor suggested that she might be a rare case of HFI or CSID or even PDHA and thus couldn't tolerate sugars.

He was correct in the switch. The convulsions and many of our symptoms went away with the switch. We entered our "gut rest" to prepare her for testing, food trials, scopes, mri's and the WHOLE process that unfortunately as FPIES Moms and dads you understand.  While on a gut rest Penelope started to show signs of serious reaction.  We had no idea what it was and we tore our house apart.

We locked cabinets and the refrigerator, we had a professional come out and clean the whole house, we got rid of our dog but still the reactions were getting worse and worse and she was limping, twitching, not sleeping, not pooping...and her rashes were just so painful that nothing we did would help.

We realized that there was a label change and started to wonder if it was perhaps the neocate jr. I put a call in to the company and waited. During the day long wait I took my daughter off of the new cans and put her back on older blue cans that we had.  We saw a difference with the first sip of the cup.
For the first time in a few weeks she was willing to drink without us coaxing..without throwing the cup across the room.

In twelve hours her rashes were so much better that it was like a miracle.  Her stools went to pitch black for a while but as we gave her more and more of the "old label" they became normal color and consistency again.  Nutricia representative Christine had helped me in the past and she was nothing but supportive. She sent us some old label cans and we began the LONG process of talking every day through the issue while we waited for answers.

Please note: we call Neocate "magic milk" in this house because of the WONDERFUL people and results we have had!  Now......we call it formula.

Christine promised to switch out all of our new label cans for old label as she found them. I received a message on my phone saying "hey we found tons of old label cans YAY call me so we can arrange a swap out for your new cans!"

Then...she was gone. Vacation. Ulrike took her place in calling me and she was condescending at best. She told me that there were NO blue label cans left. When I called every day for a week she finally sent me a package of blue label cans that were so dented we couldn't use them safely.  I called her again and asked her where the open cans I sent them were. (the ones that made my daughter sick) she didn't have a clue and started to ask "are you sure you sent them.." when I reminded her that NUTRICIA had paid for the shipping...she said she would look into it and sent me two more cases (perfect shape after I asked her to be more aware of how she shipped them).

She referred to my support group who buy and trade neocate online as a bunch of black market traders. (we usually try to find it for 10-15 dollars a can, stock up and then give it out to people who need to trial it...are waiting for their shipment from DME or have run out and don't have the funds) I lost faith because now I can see how they view us and it isn't what I would expect.

Every time we talked to someone there we were repeating the same things over and over because the same questions were asked. No one that we talked to seemed to grasp the seriousness of a possible cross contamination with Allergic shock prone children..fpies...hfi..fi...csid.  no one seemed to understand that a LARGE amount of people wouldn't be able to come forward because they simply wouldn't know.

I tried to explain to them how food trials worked and that there might be FPIES or EOE kiddos on their formula whose parents are assuming that their negative reactions are in fact not the formula they have thrived on for so long but peas, or potatoes, or rice, or chicken!  That those parents would continue trying foods and wouldn't understand.

I tried desperately to explain when I was told by Ulrike "there really hasn't been a serious reaction as far as other people are concerned it is only a few families"  It shouldn't matter if it is a few or one!  I explained VERY carefully how we in this community hold tight and buy the formula whenever we have money and stockpile because we never know when the DME will make a mistake or if our insurance wont cover it etc.  I explained that this would be a gradual process that would grow exponentially as parents ran out of old label and got into the new cans!



My daughter HAS tried (because we didn't have a choice) the formula once more and went back to the same reaction but much more swiftly. 

All I have asked for this entire time is the facts. I asked for a print out...no matter how long or technical of the tests that were run, who ran them, what the results were and what nutricia had decided to do since then.

We want to have our own third party lab come in and test these cans! I can't understand why they aren't more forthcoming with scientific data that won't lie and can't be manipulated. Especially if as they say the formula is fine and the tests were conclusive.

Regardless of what is wrong or isn't wrong. what is new or isn't new..why won't they just release the information on the tests and the laboratory reports in detail so that we can carry on with our own investigation?

My son Michael has lived and thrived on Neocate products his whole life. He is only able to tolerate the Neocate Junior Unflaovred without prebiotics or flavor. He reacts to everything you let him ingest, medication, vegetables, fruits, meats, poultry, dairy, grains, candy, etc.

 

The first can we tan into I thought (Michael was on gut rest, so no new food trials for two months prior) that Michael had a cold, or had possibly gotten into something. Then I called my husband as he was the one to watch him in our house as I was in Clinicals for my RN schooling. He confirmed that he did not get into anything. Then Michael had a reaction diaper, it wasn't just screaming and crying and pinching me telling me his tummy hurt. There was blood and multiple filled black specks (blood) then I called my husband and told him to come home right now! Michael had 4 more diarrhea diapers filled up past his diaper by the time 3 more hours passed by. He kept saying yucky to his bottles. So I just kept making new ones every 15 minutes and he just didn't want them. I thought what in the world is going on.

 

My husband got home from work threw out his lunch garbage and saw it was a new can in the garbage (he makes mixers pre scooped to the amount of water that are in his bottles) and said Jen you told me that just the label was changing. I said that's what Neocate told me.

 

We dumped the mixers out, washed and sanitized those and the bottles. When we opened a can expiring in January (mind you this is November 16th) Michael started drinking all of his bottles, he had three cans of good stuff in two days. Then we tried the new label again because I was certain that there was no way his medical food that is the only thing keeping him alive could cause a reaction. And within the first bottle he said icky, and we made two more, he only consumed 4 ounces maybe 5 maximum. Then started screaming in pain and back to bloody mucous diarrhea. So I called Neocate they told me they were testing the product and that they wanted to pick up this lot. So I let them. I trusted them after all. Now my trust in them is gone.

 

After talking to them and putting him back on before mfd May cans he started to improve again. They told me to trial a different lot, so we did and he reacted all over again, pain diarrhea, vomiting, sleep disturbances, tippy toe walking, etc. He lost weight and was very weak. So we put him back on old lot.

 

A few days went buy and I thought it was just the cans that had the new label on them, so we were going through all of our old label, we ran into a may can that caused him to react after about 4 ounces. He wasn't complaining about the taste until he finished those 4 ounces. So we put him on before may cans.

Then we ran into it on a May 1st but he made it through more than 4 ounces, so I am thinking that is the date that this all started in the facility.

 

I have so many questions. Where are our raw data testings? Who tested them? What all did you test for? Are you using the substitution act? Are you just done, and willing to let these children die? What are you doing to continue your effort as my son can not tolerate any of your other products or competitor products which is your way of trying to help us.

 

Why does it smell different, taste different, mix different and separate different, and turn a different color after sitting out?

 

Please help us I am sure this is just a simple mistake, you need to fix it. We are suffering here and we need help finding before may cans.

We noted that it turns Yellow when it sits out in her sippie cups Jennifer. I never even thought of that!

Edited to add...her clothing also holds the stains when the formula spills on them. We have tons of white t-shirts and onesies that she wears when lounging around the house and they all have this foul greasy looking yellow stuff on them.

I'm glad the group posted this page. I never would have thought to note the color.

I am so sorry to hear of these reactions....so hard, I know.   

 

What is the thought on what is causing it?  Is there a commonality? The potential for rice contamination (due to the Nutra)?  


I pray there is a solution somewhere....I know personally how difficult it is to not have a safe formula; although my son is doing well now, we've struggled because of the very sensitive nature of his FPIES triggers. 

At this point as you probably know (My Little Man) we are worried about every detail possible and all I have personally asked for is a report so I can take it to my local university and ask their chemical engineers and some friends of mine in the science department to just talk me through it and help me brainstorm before going to an outside laboratory. They refuse....flat out talk AROUND the question.

I can't understand if there is no issue with the formula why we aren't being given information.

The UK clients have reported that they HAVE received a new formulation of neocate over there!

Yes, I had suspected the biggest suspicious culprit is the rice but also did hear of someone talk about a potential soy contamination.  And, as you state- it's all just guessing and here-say until things are looked at more closely.   


I know just how you feel about wanting to analyze it, I wanted to do the same with my breastmilk that we knew my Little Man was reacting to - we went cold turkey at 7.5mo. to elementals - which he also couldn't tolerate but at that point, the differential was lessened to what he could've been reacting to.  I was sad to stop breastfeeding but glad for the step that the elemental formula gave us;even though we couldn't continue on it after 5mo. of gut rest showed more intestinal damage. 

 

Do the other families have rice as an allergen/trigger as well?  Do you know?  Is that one of the commonalities? 

 

I know this is very hard and you're just seeking an answer- something to help your child, and the others experiencing reactions or symptoms.

Hi from the UK! This topic is of great interest to me - our now 33 month old little man who suffers from mutiple non-IgE food allergies & suspected FPIES is still breast fed due to not even being able to tolerate the "hypoallergenic" formula that is known as Neocate LCP over here!  We were told endlessly by his very poor Paeds that there was no way a child could react to Neocate.  so our faith was well & truly lost in Necoate then.  Due to the rubbish Paeds we kept our baby on LCP (up to twice daily to make up food) for 8 months until I decided enough was enough & that it had to be that he was reacting to - I knew my breast milk was right for him & the foods he was then eating weren't upsetting him either.  We have also trialed Neocate Active with the same problems.  Some months later we paid to go Private nearly 300 miles away from home to be told by that Paed that of course some children can react because formulas have to be cultured from something & that thing can be an allergen to some children.  From research I have done I've discovered that before August 2012 LCP was made with Corn & is now made with Rice - corn is thankfully an allergen that our little man has outgrown but rice still very much affects him.  I was also told by the Private Paed that LCP is cultured from funghi - well we know that he has bad reactions to mushrooms so this would also make sense why he could never tolerate it!  I think its shocking how so many Paeds make us parents believe that such supposed "hypoallergenic" formulas are THE best thing for our children, meaning that if reactions do occur to them its literally the last thing we look to while our poor babies endure months if not years of horrendous symptoms.  33 months on & I still breast feed out of necessity.  If the rubbish Paeds had had anything to do with it they would have made me stop just after he turned 1.  I'm so thankful that I'm a strong Mum & believe in myself & my ability to know my children inside out.  If I had listened to the "professionals" I dread to think where we would be with our little man today!

 

This is mine & my little man's story: http://cowsmilkproteinallergys...bs.com/frances-rufus

The families that have children currently affected in this Neocate Jr. label change may be low in number or high in number right now, but no voice is too small to be heard.  Sharing your child’s experiences (tolerating or not) and providing further insights and experiences may help.  Many of us, who are well aware that the answers simply may not be there in this rare diagnosis, take comfort that our experiences can be used for future knowledge and awareness of this allergy that affects infants/children in such basic ways.  With this in mind, The Foundation would like to share the following information from our conversations with Nutricia representatives:

  • Nutricia is committed to helping these families
  • Nutricia is very much interested in learning from families (both currently affected and non-affected) and furthering awareness of FPIES.
  • Nutricia has encouraged families, and the practitioners who treat their children, to contact them directly to provide further, individualized needs for their children.  The Foundation encourages families who would like to work with Nutricia directly to contact Nutricia. 
  • From these discussions and any other private contacts to the Foundation from families, Nutricia would like to continue on-going discussions with the FPIES Foundation to work through a solution that may help affected families to include future/ongoing awareness of FPIES.

    Please continue to share, and encourage others (in the FPIES community and beyond) to share their experiences to help further awareness of the needs of our children.  

    Thank you for your time and dedication to families!  

The FPIES Foundation continue to follow these events with empathy for fellow FPIES families and beyond this community. Please continue to bring any concerns regarding new label Neocate Jr forward, here or to Nutricia directly.  


Also,we wanted to let everyone know we received additional communication from Nutricia to pass along.  

"Thank you for the time you took to speak to both Steven and me. Thanks for providing us with valuable insights into FPIES and the FPIES community as we explore questions that have been raised about Neocate® Junior Unflavored resulting from 15 families that have reported to us that their children with unique and extremely sensitive conditions had varying levels of difficulties tolerating the product.
 
  
We want to reassure the thousands of families whose children continue to thrive on Neocate Junior products that the results from exhaustive evaluations confirmed that the product formulation has not changed in the past year. Still, we understand there have been questions among your community about the situation. 
  
To help answer these questions, Nutricia has posted information to www.neocate.com/about-neocate/neocate-junior-update. We are sharing this page directly with healthcare practitioners, patient groups and families through various communication channels, including direct outreach and a post to our Neocate Food Allergy blog. 
  
As you are aware, we have been in contact with each of the 15 families, and we continue to be committed to doing everything we can to find answers and individual solutions for those families whose difficulties seem to be continuing. 
  
Additionally, as with all of our products, we will also continue our work to improve the Neocate Junior formula in line with the latest scientific knowledge and medical consensus. When changes to the formula are planned, we will communicate them in advance both to healthcare professionals, families and to you.. 
  
We encourage you to share this information with your members, and visit www.Neocate.com/aboutneocate/neocatejuniorupdate. Our team is also available at 1-800-365-7354 to answer any questions you or your members might have."



I am so relieved and shocked to have stumbled upon this site and conversation about Neocate Junior.

 

My nine year old son has EE and is allergic to all food.  He has a gtube and survives on neocate junior.  This formula saved his life, made him gain weight, gain color in his otherwise pale face, and greatly improved his life.

 

Until the end of September 2012.

 

At the end of September he suddenly got very, very ill.  Headache, extreme fever, coughing to the point he couldn't breathe.  He didn't leave the couch for a month.  He refused his tube feeds.  Even 20 mls would make him sick, vomitting, diarhea, extreme stomach pain.  We thought he had the flu?  Maybe swine flu?  Maybe bad virus??? With a child allergic to food and many allergens you never know what's going on.  I never suspected the Neocate.  He had the same neocate happily for the last two years-it never occurred to me something could be Wrong with his miracle food!!

 

October, November, December, and now January.  He hasn't gone to school since September 27.  He can hardly stand for ten minutes.  He feels dizzy and not good and in pain all the time.  He does not play with his friends anymore.  He lost 13 pounds.  He looks like he did before we found Neocate-extremely pale, dark circles under his eyes, lethargic, etc.

 

He spent two weeks in Childrens Hospital with a team of specialists.  They couldn't figure out what was wrong.  His ige level had tripled since last blood test.  They thought he must be sneaking food he's allergic to.  He told them no.  Nobody believed him.  We nagged and nagged and nagged and forced, forced,forced him to have his feeds and get to school.  He cried and cried and just kept saying how he can't and his tummy hurts too bad.

 

I am going to phone Neocate tomorrow.  Had I not been desperately strolling google for help for my boy, we would never had been added to the list of families suffering from the change in Neocate.

 

Whatever the change to the formula - my boy was so weak that he didn't even want to go to his grandparents at Christmas to open his presents.  He has now dropped a year behind in school.  His parents and doctors have nagged the kid to death over something that wasn't in his head.

 

Neocate last year-you save his life and we were so very very grateful for your product.  Please go back to that product.

Nutricia announced changes and upgrades to their product line and wants communities, such as those served by The FPIES Foundation, to be aware of changes to their Neocate range over the next coming months. "Neocate Infant, Neocate Junior and Neocate's EO28 Splash will be improved and made available with an updated nutrition profile based on latest scientific recommendations. The first product to be updates will be Neocate Junior. The change is in the micronutrients whereas we are following latest recommendations for DRI's by the Institute of Medicine." For more information visit www.neocate.com or see News & Events section of our website for a flyer shared from Nutricia. 

@Penny's Pennies, would you be able to share with me your Neocate Support Group. I am new to all of this. No one has been able to pin point what is causing my 8 month old daughter to have bleeding stomach ulcers and enlarged lymph nodes along her colon. We have tried every regular formula imaginable, goat's milk, Elecare and we are currently on Neocate Jr. with Prebiotics diluted to 20cal/oz (we started today). My daughter is a wonderful baby, she hardly fusses during the day, but she has mucus bloody poops, diarrhea, and doesn't sleep well. The GI told us we had to stop Neocate Infant and I believe the DHA/ARA is her problem that's why we are trying Neocate Jr. 

 

Does anyone have any experience/tips/advice/suggestions regarding Neocate Jr. with Prebiotics?  

 

Regarding the yellow coloring of the Neocate. We experienced this on and off starting in August which is when our daughter got really sick resulting in bronchiolitis. Anyone have this problem on Neocate Infant?

Can you share your Neocate Support Group. I would love to be a part of it!
Originally Posted by Penny's Pennies:

My name is Angela Teague and I have a currently undiagnosed child who is 2 years old named Penelope Rose. We have been on Neocate since April of this year and have problem solved through a few different forms of it. Our Occupational therapist has an Fpies kiddo and through her support we have followed the typical protocol to get our reactions under control!

Infant formula was a fail because the Soy was too much, Tropical caused severe acid reflux with some nasty vomiting of mucous and bile, Chocolate caused stomach pains and severe hyperactivity with rashes and swelling, Vanilla seemed to be a step in the right direction but her stools were pure liquid and the rashes were unmanageable. We switched to the Plain/Unflavored/without prebiotics when her doctor suggested that she might be a rare case of HFI or CSID or even PDHA and thus couldn't tolerate sugars.

He was correct in the switch. The convulsions and many of our symptoms went away with the switch. We entered our "gut rest" to prepare her for testing, food trials, scopes, mri's and the WHOLE process that unfortunately as FPIES Moms and dads you understand.  While on a gut rest Penelope started to show signs of serious reaction.  We had no idea what it was and we tore our house apart.

We locked cabinets and the refrigerator, we had a professional come out and clean the whole house, we got rid of our dog but still the reactions were getting worse and worse and she was limping, twitching, not sleeping, not pooping...and her rashes were just so painful that nothing we did would help.

We realized that there was a label change and started to wonder if it was perhaps the neocate jr. I put a call in to the company and waited. During the day long wait I took my daughter off of the new cans and put her back on older blue cans that we had.  We saw a difference with the first sip of the cup.
For the first time in a few weeks she was willing to drink without us coaxing..without throwing the cup across the room.

In twelve hours her rashes were so much better that it was like a miracle.  Her stools went to pitch black for a while but as we gave her more and more of the "old label" they became normal color and consistency again.  Nutricia representative Christine had helped me in the past and she was nothing but supportive. She sent us some old label cans and we began the LONG process of talking every day through the issue while we waited for answers.

Please note: we call Neocate "magic milk" in this house because of the WONDERFUL people and results we have had!  Now......we call it formula.

Christine promised to switch out all of our new label cans for old label as she found them. I received a message on my phone saying "hey we found tons of old label cans YAY call me so we can arrange a swap out for your new cans!"

Then...she was gone. Vacation. Ulrike took her place in calling me and she was condescending at best. She told me that there were NO blue label cans left. When I called every day for a week she finally sent me a package of blue label cans that were so dented we couldn't use them safely.  I called her again and asked her where the open cans I sent them were. (the ones that made my daughter sick) she didn't have a clue and started to ask "are you sure you sent them.." when I reminded her that NUTRICIA had paid for the shipping...she said she would look into it and sent me two more cases (perfect shape after I asked her to be more aware of how she shipped them).

She referred to my support group who buy and trade neocate online as a bunch of black market traders. (we usually try to find it for 10-15 dollars a can, stock up and then give it out to people who need to trial it...are waiting for their shipment from DME or have run out and don't have the funds) I lost faith because now I can see how they view us and it isn't what I would expect.

Every time we talked to someone there we were repeating the same things over and over because the same questions were asked. No one that we talked to seemed to grasp the seriousness of a possible cross contamination with Allergic shock prone children..fpies...hfi..fi...csid.  no one seemed to understand that a LARGE amount of people wouldn't be able to come forward because they simply wouldn't know.

I tried to explain to them how food trials worked and that there might be FPIES or EOE kiddos on their formula whose parents are assuming that their negative reactions are in fact not the formula they have thrived on for so long but peas, or potatoes, or rice, or chicken!  That those parents would continue trying foods and wouldn't understand.

I tried desperately to explain when I was told by Ulrike "there really hasn't been a serious reaction as far as other people are concerned it is only a few families"  It shouldn't matter if it is a few or one!  I explained VERY carefully how we in this community hold tight and buy the formula whenever we have money and stockpile because we never know when the DME will make a mistake or if our insurance wont cover it etc.  I explained that this would be a gradual process that would grow exponentially as parents ran out of old label and got into the new cans!



My daughter HAS tried (because we didn't have a choice) the formula once more and went back to the same reaction but much more swiftly. 

All I have asked for this entire time is the facts. I asked for a print out...no matter how long or technical of the tests that were run, who ran them, what the results were and what nutricia had decided to do since then.

We want to have our own third party lab come in and test these cans! I can't understand why they aren't more forthcoming with scientific data that won't lie and can't be manipulated. Especially if as they say the formula is fine and the tests were conclusive.

Regardless of what is wrong or isn't wrong. what is new or isn't new..why won't they just release the information on the tests and the laboratory reports in detail so that we can carry on with our own investigation?

 

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