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Re: Does she really have FPIES?

beth ·
Jason, it is odd that the blood is showing up now. It makes me wonder if it is truly the milk causing the blood. Have you tried anything else new? Jaiden had symptoms immediately. He had severe diherea and was so dehydrated by day 4 that he went into shock and his kidneys and liver started shutting down. At just about two weeks old it turned into bloody stools. At 5 weeks old he needed a blood transfusion due to such severe internal bleeding. He started on nutramigen AA (aminio acid...
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Re: New diagnosis. Looking for any and all advice at how to navigate my way though this.

beth ·
I agree with VR! I did trials for 10 days, and EVERYTHING was trial individually, even spices. Baking Powder also has gluten in it. Several foods have hidden ingredients. Anything that says natural or artificial flavoring, that could mean anything. You'll have to call the company to find out what those flavorings are. I would alternate between food groups when introducing foods. Try a fruit, then a vegetable, then a meat, then a grain in order to try to expand her diet. The more you can...
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Re: Does she really have FPIES?

beth ·
Just curious as to how old your daughter is? My Jaiden never threw up (one time he did) but his usual was the blood in the stool. His started with milk as well. He ended up with a "diagnosis" of multiple food protein intolerance. He did not receive this until he was a year old, but symptoms started at birth. I would also avoid soy. 50% of kids that cannot tolerate milk, also cannot tolerate soy. Jaiden could not tolerate anything "cow" related either. Beth
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Re: First time with beef

beth ·
How old is your daughter? I give you so much credit for nstilly through all this! My Jaiden had such severe reactions that we almost lost home twice. The first time he went into shock and his liver and kidneys were shutting down due to such severe dehydration (4 days old). At 5 weeks old, he was GI bleeding so severely he needed a blood transfusion. Because his reactions were so serious we did not have the time for me to eliminate things from my diet, and he went on a formula 5 weeks. So way...
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Re: First time with beef

beth ·
Can your daughter handle dairy. My son reacted very poorly to beef because milk/beef are both proteins from a cow. You might want to try a different meat first if she cannot handle milk! But, yes, you have to introduce a food to a child several times before he/she will be willing to try it. That's pretty much true for all kids. Another thing I did, was I have a broccoli/potato soup that my son liked, and I actually blended it with cooked turkey so he could get the protein. Maybe try sneaking...
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Re: Ultra Care for kids

beth ·
No, we ended up getting formula coverage. He has been on Neocate splash for about 4 months now, and doing great. Our pediatrician wasn't super excited for the Ultra Care, but we are now working with a dietitian. Best of Luck!
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Re: Food. For. Thought

beth ·
Thanks everyone!
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Re: Food. For. Thought

beth ·
I'm thinking about the blog....I just have a lot on my plate right now (don't we all!)
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Re: Food. For. Thought

beth ·
Thank you all so much for the compliments. I attached something I wrote for my family and friends when Jaiden was 7 months old. I wrote it because we were just starting solids with Jaiden, and that was a very confusing and stressful time (as we were starting to figure out he was allergic to more than just milk). The night I wrote this, I felt like all I had been doing for days was cooking for him. At dinner that night, I had one puree left that was safe for him to eat, and I dropped it on...
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Re: Food. For. Thought

beth ·
*a few months back I was sick of hearing
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Re: Food. For. Thought

beth ·
Thanks Amanda! I have thought about starting a blog.....but when I write I wrtite for me, but I am okay posting some things. A few months backwears of ears hearing "so just don't give him milk". Like it is that simple. So I wrote anawareness thing for my friends and family. I will post that on here later for you to read. Yup, I'm over the cake. I'm going to try strawberries with him on Friday anfief they are a pass I'm going to come up with something using strawberries, I am sure he will...
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Food. For. Thought

beth ·
February 5, 2012 So last night I was thinking about how I am not going to be able to make a cake for Jaiden's first birthday, and it made me feel a little sad. But then I started to reflect on my journey with this child over the last year, and...
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Re: Hi from a FPIES mom

beth ·
My little man has also been hospitalized for GI bleeds. We keep a food journal as well. Also, we only introduce one new food every two weeks, and if we notice a bad diaper, we do not introduce anything new until he has had good diapers again for at least two weeks. Sounds like your daughter does have a good variety of foods she can eat ?!?
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Re: hello :)

beth ·
So yesterday (about 24 hours after cookie) Jaiden power pooped in his crib, I mean it was EVERYWHERE! But, it wasn't mucousy so I wasn't convinced it was the cookie. When I got him up this morning he had vomited in his sleep (I feel so aweful I didn't hear it!) and then today he has had horrible mucousy diharea,is not eating much, and is vomiting again. So I guess his milk reaction is still pretty severe. I am hoping to see some improvement by tomorrow, I really would to avoid him getting...
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Re: hello :)

beth ·
*in his system
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Re: hello :)

beth ·
Yes, I think that's what I am going to do....because the no food list is super long! Jaiden only went into shock that one time at 4 days old. The shock was more from the severe dehydration (so I don't really know). His main reaction is severe GI bleeds. We see it 24 to 72 hours after. And lately it seems to be only a day or two and then it clears up. He has not needed emergency medical attention in months!! Now, I thinkif he continued to get it injustice system, it would become an emergency.
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Re: hello :)

beth ·
Thanks! I'm just debating if I want to put picture of things he can't eat, or if I want to make it more positive "this is what Jaiden can eat" ???
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Re: hello :)

beth ·
At dance today, one of the kids passed out sugar cookies with frosting (wheat, egg, milk, soy) and Jo gave it to Jaiden and he ate about half before I realized he had it. So, curious to see how the next few hours/days play out. It's bound to happen, and I've accepted that. I'm doing my best to prevent it. I'm going to take pictures of foods that Jaiden can have and can't have and put them in a book for Jo to try to teach her what she can and cannot share with Jaiden. I'll let you know If...
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Re: hello :)

beth ·
I am actually in the process of eliminating it from my house all together. I have a three year old and a 10month old. It's getting to hard to make sure the 3 yo didn't drop something on the floor. So we are all eating what Jaiden is eating (with the exception of cheese and milk and yogurt) evert hung in our house is soon to be jaiden friendly. I think it will be easier that way and more healthy, less processed foods and more whole foods. Good luck!
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Re: Dietitian

beth ·
It is looking like turkey is going to be a pass (I will know for sure by tomorrow) which figured because thatmeans only 8 more weeks of formula. But, I think we are still going to give him some formula after a year just as a nutritional boost. I actually have some free samples of neocate splash on their way. Hey, if it's paid for, why not?
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Re: Dietitian

beth ·
We got it covered!!! Thanks so much for your help!
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Re: Dietitian

beth ·
Okay so Jaiden failed his first meat trial (beef). He big time failed it. It was the worst diaper I have seen in months, and it only took 24 hours to see it. We still have chicken to try, but at this point I am not hopeful. His body just cannot handle those proteins. So I am thinking we are going to be on formula for a while longer. WE desperatly are starting to need some financial Assistance with this! Anyone have any tips for this? How to get help from insurance companies? Would an...
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Dietitian

beth ·
So Jaiden FINALLY saw a dietitian yesterday, and I wanted to share what I learned from her. 1. The window to outgrow allergies is age 1, 3, and 5-6. The longer the protein intolerance is avoided, the better chance the child will have to outgrow...
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Re: Rice trial today. Not sure what to try next?

beth ·
I only give jaiden brown rice and brown rice flour. Baby cereal rice is made from brown rice. I also give him rice puffs (arrowhead brand is just puffed rice without other ingrediants). Are you looking for more rice ideas bc my LO can only tolerate rice so I could send you some recipes. Or do you want ideas for other foods to try?
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Re: Ultra Care for kids

beth ·
Thanks!
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Re: Ultra Care for kids

beth ·
I got a job yesterday....a preschool teacher. Not super thrilled to leave my babies, but its a really flexible schedule. If I have to work, it's the way to go. But I'm angry at this allergy for taking away life's most precious gift....time!
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Re: Ultra Care for kids

beth ·
He is okay with both corn and rice. Doctor says no on the ultracare, but finally referred us to a dietitian, so we will see how that goes. I have job interview next week....looking for part time work just to pay for formula. Breaks my heart to have to leave my babies! Wish me luck!
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Ultra Care for kids

beth ·
I know I've posted this on like every Facebook page there is, but I am really wanting to try metagenics ultra care for kids in place of his formula, but I hesitate because no one has seemed to try it, and I don't know if I want to be the first?! Has...
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Re: Crayola, play doh and soy

beth ·
I actually was wondering about crayons the other day.....you saved me a call! thanks!
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Re: Possible FPIES?

beth ·
Have you noticed bloody or mucosy stools? That would be a way to get you into a GI.
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Re: Possible FPIES?

beth ·
Gerber brands also contain soy.....so it could potentially be that too!
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Re: For fun-- read on!

beth ·
It's okay, I'm already feeling better. I just needed a few weeks to be angry at the allergy. I just don't think people really understand how overwhelming this can be and how time consuming it is. That is more frustrating somedays then the allergy itself. I think as I find more foods for him it will get easier, it's just so hard bc it takes so long to trial foods. I just get so tempted to give him more then one food at a time to speed up the process!
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Re: For fun-- read on!

beth ·
The other day I dropped the only bowl of food I had left for him on the floor and realized I had nothing I could make him on the spot. I cried and then wrote mine, so mines not so humorous. Now I am in the process of finding a deep freezer so I can stock up on homemade stuff.....I know one day I may find more humor in all this, but I would have to say I'm feeling more frustrated at this point!
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Re: For fun-- read on!

beth ·
I wrote something similar to this to help my family better understand the day to day of this allergy....but I like yours better! I am going to print it off and show it to them!
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Re: Coconut milk

beth ·
How old was she when you tried it?
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Vitamins and toothpaste

beth ·
I am also looking for allergy friendly multi vitamin drops and toothpaste that are allergy friendly. What does everyone use?
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Re: Coconut milk

beth ·
I did see that article. Thanks! Still debating it. I'm curious because I am thinking about trying to switch him off his formula before a year and just give him a multi vitamin. (or at least half formula half coconut milk). I'm going to try to hold off til his 9 month appointment, but he hasn't drank any formula in days.....so I might be doing it sooner then later. I'm actually giving him juice this morning because I'm worried about dehydration.
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Coconut milk

beth ·
Did anyone try coconut milk before the age of one?  Anyone have an valid reasons why to wait or not wait until one?
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Re: A new definition

beth ·
Ironically I posted on fb and heard back from no one . But maybe I'll just order some.
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Re: Is it safe to assume safeness

beth ·
I think we are okay with corn. He is on the formula nutramagin AA which I believe has corn in it. (yup, i just looked, it has corn syrup solids in it) Also, I have given him some frozen peaches/juice that has absorbic and citric acid in it. I guess I will check into the contamination issue then and treat it like a trial. Thanks for the advice!
Topic

Is it safe to assume safeness

beth ·
I have been making all of Jaidens food from scratch and it is starting to get overwhelming. In the fruit department Jaiden can eat pears, apples, peaches, plums, and nectarines. I want to start using some store bought applesauce and some canned fruit....
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Re: A new definition

beth ·
I have heard of the cheecha puffs before and am curios to try them, however not so excited I have to order 12 bags. Jaiden is only 7 months old, do you think they are something he could use as a finger food yet or would they be a chocking hazard. Right now he does eat rice puffs and likes to chew on teething biscuits, and does really well with those. Ohh and he has been 8 days on potatoes, so I'm giving it a pass. We are going to start cauliflower tomorrow
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Re: What's in season?

beth ·
Yup, wish I would have thought that out too. I started yellow squash and now i can't find it anywhere!!! I'm thinking about what veggie to start next, im leaning toward cauliflower. If you haven't tried nectarines yet, they have been really good lately, but not sure how much longer they will be in season?
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Re: A word on Shock

beth ·
Im so glad he is doing well! I hope you get to go home soon! Those long hospital stays are rough! (sorry I have no info on shock)
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Re: A new definition

beth ·
Thank you everyone for your support and good thoughts! I am also so relieved. A moment to be thankful for just having fpies. . Time to start think about food again. We started potatoes this week. I got to make him "hashbrowns" for dinner and he loved them! I'm so thankful my little man! Allergy or no allergy, he is perfect!
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Re: A new definition

beth ·
No osteogenisis imperfecta! He doesn't have anything (I mean beside the allergy). . Yeah for great news!
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Re: A new definition

beth ·
Thank you everyone for your words of encouragement and support! His appointment on weds is quickly approaching. I will let you all know how it goes!
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Re: A new definition

beth ·
I like that - the very best of who we are is our children. That made me smile. I actually ended up going and talking to a counselor yesterday and just spilled my guts about Jaiden. It was just really nice to just completely vent without someone trying to offer advice, but instead to just listen. (not that I don't want advice, it's just that my aunt doesn't believe he has an allergy, and so many people think I'm over reacting, or I end up arguing with the doctors and nurses) it was nice to...
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Re: My Little Man Sam

beth ·
I just wanted to let you know that I have your blog emailed to me and read it very closely. I feel so bad for all you and your little and your family has had to go through. Jaiden had some scary times, but they only lasted for about two months. So in that sense I can relate, but I cannot relate to how you have managed to hold on to strength for so long! How you can be so strong over Abd over again. I know as a mom you just have to, but it is so heartbreaking at the same time. My heart goes...
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Re: A new definition

beth ·
Thank you for the encouraging words, it's like a verbal hug. . Jaidens first two months were in and out of the ICU due to severe GI bleeds and yes we ended up at Mott hospital at u of m. (his story is posted under introductions if you want to read it) I talked with the child life services while we were there. She was able to find a white noise machine for us since we used one at home. This time however we won't be at Mott, we will be at kellogg eye center, across campus from Mott. I looked...
 
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