Tagged With "FPIES"

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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: 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.

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.

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: Amanda B. - Matthew's Mommy

My Little Man ·
"look for trends"....very good observation to make Amanda, and one we'd like to begin to put compile and connect as there does seem to be some shared trends....and bonds created with the families whose kids share them. A research doctor did tell me that they are doing some studies on the different immune responses seen in FPIES- how some kids respond to the elimination diet and others do not as well (my Sam). Thank you for sharing your story...and your connected observations!
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Re: Rare Diseases Day Feb. 29, 2012

My Little Man ·
Empowerment. Knowledge IS power! The FPIES Foundation is proud to share 'About FPIES,' http://thefpiesfoundation.org/aboutfpies.html a collaboration between our Board of Directors and Medical Advisory Board, which provides a great definition of FPIES, as well as information about symptoms, triggers, diagnosis, testing and treatment. Empower yourself. Empower your family, friends, doctors, child's classmates, neighbors, teachers and the family next door by sharing this article!
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Re: FPIES?

Zookeeper ·
Hi! And welcome to the group! I am glad you have found us, but sorry you have to be here. It is so hard to watch our little ones struggle. What you are describing sounds very much like a classic FPIES reaction to rice. The other issues you are having with your little guy being reactive to things in your milk can also be pretty common to FPIES. It sounds like you have some great support from a good allergist. I would suggest taking some articles to the allergist and/or GI and see what they...
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Re: FPIES?

DSmyWorld ·
Thank you! We actually have not been to an allergist yet because I thought my son's GERD and allergies were under control after seeing the GI, but I guess I was wrong and am now convinced that FPIES is also an issue. I actually don't think we ever reached a baseline and that could by why he is still spiting up/vomiting a few hours after every feeding (I was told that might not go completely away, so I guess I over looked it). The rice was by far the worse reaction, with puddles and puddles...
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Re: Medical Literature

Mrs.Hobbit ·
Anyone else out there with adult symptoms? When I had autoimmune disease triggered a few years ago, I also discovered that even a tiny nibble of certain foods gave me terrible stomach troubles (yerba mate, artichoke, butter lettuce, and more recently spinach). My second son has multiple fpies triggers (and third new son possible rice trigger), and I started to wonder, because his symptoms were the same as mine, if I had adult fpies. Never bothered to see the allergist about it though,...
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Re: Medical Literature

Tummyache ·
I'm 74 and still am unable to tolerate any dairy - so am 100% dairy free since the 1970's. It started the 2nd week after birth [1942] with projectile vomiting + diarrhea. As an infant I was switched to raw goats milk, which I tolerated somewhat better, with rice gruel. Then, in my late 30's when I was having violent episodes, in and around pregnancies and some concern I would loose a particular baby, that it was finally addressed again. It was then that I saw GI specialists, who all proved...
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Re: Medical Literature

Tummyache ·
I forgot to mention that we have done DNA testing in recent years to search for possible LCT variances for Congenital Lactose Intolerance [ no sign of it so far, though I do lack the "persistence" part of LCT ] -- upper endoscopy to check for Lactase Deficiency [ yes this was very positive!]. But, we think that whey and/or casein are somehow involved too.
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Re: Swimming Lessons?

Ewilliams0312 ·
I've never even thought of this before. My son is 2 with fpies and we've been swimming many times. And water has gotten into his mouth many times. Maybe the parent was just telling you just for your knowledge. Just in case someone brings snacks or food to swim class. I definitely wouldn't feed him anything though unless the parents brought something. I think the best thing to do is contact the parent and voice your concerns.
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Re: Swimming Lessons?

RD mama ·
I can't imagine that there would be any problems. I always mention my child's FPIES because of the snack time/treat issue. FPIES reactions would typically be less severe than a severe nut allergy, for instance, and it wouldn't happen with contact with teeny amounts of food particles in the water. Ask the parent what kinds of reactions the child has had, and which foods are most important to avoid, and I think you will be put at ease -- my child does also have regular severe nut allergy, but...
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Re: Swimming Lessons?

Theresa ·
Hi I hate to be the bearer of bad news but my 2 sons have FPIES & EEG they have had reactions on swallowing water in pools. They get pale, shakes & their blood pressure drops. I just give them lots of bottled water & that helps them n they will be out of it for a little bit. As long as you are aware of his symptoms & can react with the appropriate steps all will be good!
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Re: FPIES Book for Children?

VR ·
I don't know about any books about FPIES but my kids GI wrote a children's book about eoe and it talks about food trials and scopes and hospital stays. It's called 'Eating Isn't Always Easy' by Dr. Yuan. http://www.amazon.com/Eating-I...411478939&sr=1-1
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Re: Milk "pass" but still not tolerated?

C-R ·
It also depends on what the cows eat as it gets transmitted through the milk just like in humans' milk. try researching if there is any grass fed cow milk around you. sometimes it may be a vitamin or supplement in the milk. one of my daughter's reacts to B12, she has a cobalt allergy. so while the milk is ok, most have high cobalt from either supplements or fertilizers put on the fields. Goat milk is low in cobalt though. they can do allergy patch testing for things like that though.
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Re: FPIES changes to more chronic as they get older?

EFoster ·
This has definately been the case for our 4.5 year old daughter. We started having more chronic food reactions at around 2.5 years old. We lost almost all of her safe foods at around 3.5 years. Most but no all are now chronic and some have turned IgE. Our daughter wasn't dx'd until age four and we use a rotation diet to give her more variety and to hopefully keep her from building reactions to foods.
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Re: FPIES changes to more chronic as they get older?

Theresa ·
I am so sorry this is so hard to say but I have a 4 1/2 & 6 1/2 yr old boys who have it. They are only on erewhon cornflake w elecare formula. They can't eat anything else. It hasn't lessend at all. despite what drs say.
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Re: Milk "pass" but still not tolerated?

Narelle ·
Our 6yo is the same, after years of trialling, passing and then failing we finally gave up and keep him on rice or almond milk.
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Re: Behaviors in toddlers with reactions?

VR ·
Hi! My son is 18 months old and fpies/protein intolerant to lots and lots of foods. We have noticed some behavioral changes but nothing quite as drastic as that. We will have major sleep disruptions and very very cranky behavior. We have pulled foods when those are the only symtoms. With that said, I have spoke to other mom's who describe similar situations to what you are going through. Sounds like a good idea to pull the dairy.. especially with the vomiting.
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Re: FPIES and hives?

Mamahuston ·
Oh and she also has eczema too and still has flare ups of cradle cap or something like cradle cap.
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Re: FPIES and hives?

TaraF ·
In my understanding, hives are not a symptom of FPIES. Perhaps she also has a typical (IgE) allergy to something? My little one has FPIES to oats, as well as an IgE milk allergy (confirmed by skin prick test) and a suspected (but unconfirmed) IgE peanut allergy. He broke out in hives during/immediately after consuming milk products and peanut butter. Are you keeping a food journal for FPIES? If so, that may help you narrow down some potential triggers. Good luck
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Re: If a Sibling has FPIES, will it be to the same foods?

C-R ·
I have 2 with completely different diets. one can eat only rice and the other only wheat. I have found most of it lies with the grains or roots. But my first diagnosed with rice, corn, oats, soy, apples, bananas, white potatoes, carrots, peaches. The other didn't have problems for years except with corn. Its scary, but once you find a safe food try expanding to others similar like butternut squash to other squashes. It can help with a bit of variety. Same goes for other reactions. If your...
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Re: If a Sibling has FPIES, will it be to the same foods?

Ashtyn'smom ·
My 14 month old also has Fpies to rice and oats.....I was wondering what type of a diet does your child have? Are they able to eat noodles since they are made with wheat flour? I'm too scared to do a trial with it!
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Re: If a Sibling has FPIES, will it be to the same foods?

C-R ·
it took a long time for me to try any of it. I wanted to be sure to find a company that didn't cross contaminate. I use Davinci pasta http://www.davincipasta.com/ for testing wheat. She just eats it with land o lakes butter and salt. I trial it one tiny bite at a time over 6-8 weeks. That's what the gastro dr rec. and then I also found that not stopping an item is good too. I stopped peanut butter once and then she reacted to it. Not sure why but haven't been brave enough to try it again.
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Re: If a Sibling has FPIES, will it be to the same foods?

C-R ·
Sorry, the diet for one of mine is fresh fruits like strawberries, blueberries, cherries, pears, oranges; veggies like sweet potatoes, peas, green beans, butternut squash, zucchini, yellow squash, acorn squash, broccoli, lettuce, tomatoes; and some meats like oscar meyer bacon, certain brands of ham, chicken without added solutions, beef. We only use Promise land milk, salted sweet cream land o lakes butter, cheeses, minute made OJ with calcium and D, Poly vi sol vitamins. want any more...
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Re: If a Sibling has FPIES, will it be to the same foods?

Ashtyn'smom ·
Thanks for the info! My daughter can eat pretty much anything that doesn't contain rice, rice flour, oats, and any other type of flour. I've just avoided all foods with flour because I'm afraid that she will react to all wheats. Thankfully she loves meat and vegetables!
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Re: 8 week old showing telltale signs....

Ewilliams0312 ·
That's great news that your 2.5 year old has grown out of her FPIES. That gives me hope for my newly 2 year old. I've been too hesitant to test him out on his beef and dairy allergy. As for symptoms of your 8 week old, that's when I started noticing something was off feeding wise with my baby. He did have runny diapers through out the night, woke up fussy constantly, and cried ALOT but the doctors would not diagnose him as colic. So yes, there is a possibility that he could have FPIES. But...
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Re: 8 week old showing telltale signs....

FPIES Mum ·
Hi, I am sorry to hear that your little one is reacting. My DD (now 2.5 and FPIES free) used to have attacks from corn and carob. This was noticed at around 3 weeks of age, when we tried thickening her feeds. She still reacted to corn at 9 months old and still is intolerant to carob now. Might be worth a shot? I hope you have your answers soon.
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Re: 8 week old showing telltale signs....

Belinda ·
HI, My little boy is 10 months, I'm still breastfeeding, I've had to eliminate, Dairy, eggs, Tomato, capsicum and spices so far so good, but hard roads I've lost 23kg on this diet. Good luck.
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Re: 8 week old showing telltale signs....

kim's mama ·
Its great to hear your 3 yr old outgrew it. For us my child had fpies to breastmilk no matter what I took out. I had to switch her to nutramigen which she tolerated ok. But elemental formula might be a good option if your doctor agrees to it. For ours she started out with horrible explosive diarrhea and over time progressed to vomitting from birth to 4 1/2 months. Good luck I hope they get it under control quickly
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Re: 8 month old likely FPIES

FPIESinMI ·
So sorry to hear about your little one's reactions! Oat and Rice cereal are really common. Baby oatmeal was our first trigger for both of our kiddos. Our allergist recommended to me while I was still EBF our oldest who had FPIES, and again with our second who also has FPIES, to "soft trial" things via my diet first to see if there were any major signs (stool issues, increase in fussiness, etc.). Neither of our children seem to have clear strong reactions to anything except oatmeal (stooling...
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Re: 8 month old likely FPIES

TiniCher ·
Thanks. Some good ideas here. I eat oats every day, sometimes twice a day. It will be so hard for me to cut those out because they are filling and I'm ALWAYS hungry not being able to eat soy and eggs. I am also severely lactose intolerant so I only have a little lactose free cheese once in a while, no other dairy. Will think about trying the goat milk with some lacaid pills and see what happens there. Thanks again!
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Re: FPIES Journal Article, January 2005 - Scott H. Sicherer, MD

My Little Man ·
Dr.Sicherer is the "it" doctor for FPIES! He has written many articles, and Mt.Sinai has done so much of the research that enabled these articles to be written. They are doing active research right now!
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Re: How to Explain FPIES?

Mommy to Thomas ·
One of the websites I've read about FPIES calls it "anaphalaxis of the gut." So when I've explained it to people, it's like a reaction that some people have to peanuts, except instead of their airway closing, getting hives, and their breathing going crazy, everything happens in the GI tract. It's worked for some people. And depending on how interested they are on what happens to my son, I tactfully try to say it's not a pretty sight because it makes him violently sick "on both ends, if you...
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Re: How to Explain FPIES?

music_rxmama ·
I know exactly what you mean, Amanda!!! I struggled with this for a long time as well and I still struggle from time to time but here is what I found helpful. I consider my audience. Is this someone who is asking because they really want to learn more and want to really know how to help my child or is it someone I am telling so that my child is protected? Is it someone I am having a casual conversation with (maybe they asked why your LO isn't eating food X like their little Joey, etc)? Then...
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Re: How to Explain FPIES?

My Little Man ·
I saw it is a severe food allergy of the gut- ana of the gut (as previous poster said)...and then I consider the audience too...many people are familiar with how sensitive a person with celiac disease is to gluten- I say it is like that but to more than wheat. Also, I remember what Janice Vickerstaff Joneja said about how she, in the 70's- with her child having multiple IgE allergies that were NOT YET DEFINED related to FOOD approached it...she actually worked WITH the man who patented IgE...
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Re: How to Explain FPIES?

Jill ·
Yeah, I basically just say it's a severe food allergy of the gut. If they ask more questions or appear to want to know more, I get into a few more details about the type of reactions. I mostly leave it at that. If people ask more questions, I give more info though!
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Re: How to Explain FPIES?

EllieBelly ·
Boy can I relate to this. It is irritating when you say 'allergy' and then they make it seem like no big deal, right? I decided early on that I would use that to my advantage, and yes, consider my audience, but sometimes have a little fun. I mean if they really dont care to know what FPIES is and are not going to remember anyways, then who cares? Sometimes I say things like "She has a severe immune system disease"...and then wait for their concerned look to say "Dont worry she isnt...
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Re: How to Explain FPIES?

Jill ·
Haha!! Yeah I have to admit, when we first told our families, we MAY have made it been a little bit drastic. I wanted to get my point across though...NO feeding her unless MY HUBBY AND I say it is ok. I told them about the ER letter and that we were directed to immediately go to the ER if she starts to vomit and daycare was instructed to just immediately call an ambulance. Those are direct orders from our allergist, but we told daycare to call us instead of ambulance and we actually haven't...
**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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