Tagged With "family"

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Re: New Label Neocate Jr.

The FPIES Foundation ·
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...
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Re: New Label Neocate Jr.

sadmama ·
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...
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Re: New Label Neocate Jr.

momma gonz ·
Hello Sad mama. I am looking to speak with you. Can you message me information? savelittlemichael@centurylink.net also these are our kids https://www.facebook.com/savelittlemichael https://www.facebook.com/lidijashope https://www.facebook.com/Pennyspennies https://www.facebook.com/superkelson https://www.facebook.com/LivyLove and Team TNT :
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Re: New Label Neocate Jr.

Mommy's Happy Baby ·
@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...
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Re: New Label Neocate Jr.

Mommy's Happy Baby ·
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...
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Re: New Label Neocate Jr.

The FPIES Foundation ·
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...
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Re: New Label Neocate Jr.

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,...
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Re: New Label Neocate Jr.

Save Little Michael ·
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...
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Re: New Label Neocate Jr.

Penny's Pennies ·
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.
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Re: New Label Neocate Jr.

My Little Man ·
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.
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Re: New Label Neocate Jr.

Penny's Pennies ·
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...
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Re: New Label Neocate Jr.

My Little Man ·
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...
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Re: New Label Neocate Jr.

Frances Robinson ·
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...
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Re: New Label Neocate Jr.

The FPIES Foundation ·
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...
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Re: In-Clinic Food Challenge Experience?

EatmonFamily ·
We had an amazing experience at Duke Children's Hospital. We had 1 to 1 nurse care, a nutritionist, and an FPIES specialist. The hardest part of the challenge was accepting we had to have an IV put in for precautionary measures. Luckily, the numbing cream they used prevented him from feeling the IV so there were no tears (just looks of worry). We knew going in that sweet potatoes, squash, and oats were trigger foods for our son. We decided to test for poultry instead of veggies. We brought a...
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Re: In-Clinic Food Challenge Experience?

Darbelp9 ·
Hello, we just brought our 1yo daughter to the hospital last Monday for a cow's milk challenge. I was very afraid of this test, but she passed it, so it is a wonderful ending and surpassing this fear and anxiety was worth it! It was an outpatient way, we went in the morning, (no eating since midnight, that was hard!),worst part was the iv line (very hard to find), but with numbing cream it was a little bit better. They made blood tests before and 6h after drinking the milk, to see if there...
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Toussaint Family News Segment

AmandaB ·
This news spot aired on WGNtv in Chicago, and focuses on the Toussaint Family http://www.wgntv.com/news/medicalwatch/wgntv-med-watch-a-rare-food-allergy-doctors-know-little-about-20110715,0,285316.story
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Holidays!

music_rxmama ·
Hi all-- after hearing some other mamas talking about FPIES and Halloween, I wanted to share something I wrote up last year about FPIES and the holidays (family get-togethers and...
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In-Clinic Food Challenge Experience?

The FPIES Foundation ·
A family asks: "Can you please ask others to share their experiences of what to expect for a clinic based food challenge?"
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New Label Neocate Jr.

The FPIES Foundation ·
 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...
**The FPIES Foundation does not provide medical advise, diagnosis, or treatment. ******THIS INFORMATION HAS NOT BEEN REVIEWED BY THE FPIES FOUNDATION'S MEDICAL ADVISORY BOARD.********* Terms of Use: http://www.thefpiesfoundation.org/index-9.html
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