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Re: If your baby isn't eating...OT Tips

AmandaB ·
RD mama, we're in Austin too. We ended up paying out of pocket for Matthew's OT, but he also only needed six sessions before they "graduated" him to us handling it at home. We went to OT Connection in Pflugerville, and they were great. The initial eval was quite a bit (I can't remember if it was $150 or more than that), and then each session was $70. That is expensive to pay out of pocket, but considering how frustrating feeding was, we still feel it's some of the best money we've ever...
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Re: Hey Texas!

AmandaB ·
RD Mama, we LOVE Dr. Varshney She's awesome, and though she'll give her own recommendations as far as foods to trial, if you're not comfortable with them she'll let you take the lead or go your own way. We see a RD in Austin, Anne Wilfong, and she was SO helpful. Researching FPIES for Matthew really gave her a whole new area to look into, but she was awesome and did a great job at keeping him w/in the food families of his safe foods while getting his nutritional profile more complete. Did...
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Re: Hey Texas!

AmandaB ·
Hey Austinites! My son will be three in December, and we're still dealing with FPIES. If you'd like to get together for a playdate sometime, that would be awesome We're up in Cedar Park, what part of town are y'all in?
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If your baby isn't eating...OT Tips

AmandaB ·
For any of you with babies who won't eat due to control, texture, or tongue thrust issues: I just added a page detailing our occupational therapy experience (with the techniques and tools we used) to Matthew's website...I hope it helps ...
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Re: Food. For. Thought

AmandaB ·
This is awesome, Beth! Here's the recipe from my kitchen aid ice cream maker's manual - it's actually for a raspberry sorbet, but you should be able to mod it easily, so I just replaced the word raspberry with strawberry below It calls for an ice cream maker...if you don't have one I can pull the "ziplock baggie ice cream lab" out from my Science teacher days...Good Luck! Strawberry Sorbet 6 cups Strawberries (cored and stems removed) 1/4 cup plus 2 Tbsp Water 1 1/4 cup Simple Syrup (recipe...
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Re: Food. For. Thought

AmandaB ·
I think I have a strawberry sorbet recipe around here somewhere.....let me know if you want it! Good luck
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Re: Food. For. Thought

AmandaB ·
LOVE this, Beth!!!! You have such a beautiful way of writing, of putting me right in the moment, right there with you and your family in the ER. I gave up on the cake idea a couple of months before Matthew turned one...it was such a stress point, and there were no foods we were allowed to trial that would make a cake possible, so I just gave up on it. And once I did everything seemed so much easier. I focused on finding something he could have that was sweet (we did a coconut sorbet) and...
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Re: How to get baby to eat food

AmandaB ·
Sorry you're having such trouble getting her to let you put food in her mouth! We had a lot of issues with Matthew, and ended up going to occupational therapy for it. He always wants to be in control, has texture issues, and had a tongue thrust problem. Even if you could get past his defenses and sneak some food in, his little tongue would just pop it right back out. I wrote about a lot of tips we learned in occupational therapy on Matthew's website, if you're interested. Here's the link to...
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New Food Passes or Fails for the Survey?

AmandaB ·
I was updating the Food Survey with Matthew's latest fail (venison)...anyone have passes or fails they'd like to add? Just give me your state, child's initials, and the foods that they passed/failed lately, and I'll update their info!  Private...
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Re: Just a vent =) LOOOOONG!

AmandaB ·
I can't imagine going through all of that....I think my husband would have blown a gasket. It sounds like my worst nightmare - we haven't had to go to the ER yet, but are prepared for the worst with all the paperwork in the diaper bag. I really wish there was just some way to force the doctors to research a topic before giving you the "crazy mom" blow off! And good for you for refusing to let them release her Hugs!
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Re: The TFF Cookie Swap--- Sharing Recipes for Non-food and food holiday treats!

AmandaB ·
I know a we all have to be careful of ingredients, but here are a few I found for kids with allergies...I can only dream of having so many safe ingredients, but we will someday! http://www.budgetgourmetmom.com/ It should pop right up, but in case it doesn't, it's the "12 days of Cookies" post. Happy Baking!
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Re: update on Mason, need advice on trials

AmandaB ·
Nervous? Sounds like he's rocking the food thing so far! We've got carrots, potatoes, broccoli, spinach, and avocado under our belt so far - Matthew is 10 months too You guys are doing a great job - so hang in there!
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Re: update on Mason, need advice on trials

AmandaB ·
How old is Mason? If he's at the stage where he's rolling on his tummy or army crawling, extra spit-ups are just part of the game (I sometimes fall into the "it's FPIES!" for everything thoughts, and forget some of the normal baby stuff). And (someone please correct me if I'm wrong), but since we reacted to rice and peas, our allergist wants us to stay away from all grains and legumes until after Matthew is one. The older these kids get the more mature their digestive system is, so they are...
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Re: FPIES AND BREASTFEEDING

AmandaB ·
DWmyWorld, I'm in the same boat with EBF. Thought I'd go a year (just like I did with my daughter), but with all the food complications I'm realizing that even if we pass dairy after Matthew is one (he's 10 months now), the food choices available to him just won't provide the level of nutrition he will need. So, we will continue to breastfeed until we know he's getting the nutrition he needs from solids. I will say, it's WAY different breastfeeding a kid who knows what's going on. I had to...
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Re: FPIES AND BREASTFEEDING

AmandaB ·
I would do it your way...it just makes more sense as long as you are up for the sacrifices. Going to a bare bones diet that you have a baseline with and then working your way up from there will just make the detective work easier. But remember, if Reagan reacts to something through your breastmilk it may take up to two weeks for her to reach a baseline again. And 10-12 times a day????? I so feel for you - hugs
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Re: A new definition

AmandaB ·
Yay!!! I was just thinking about you today and wondering how the tests went - awesome news! If you pass potatoes then you HAVE to try CheeCha Puffs original flavor (ingredients: potato flour, potato starch, salt)! Matthew LOVES them - they are the only thing he willingly puts in his mouth
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FPIES Food Survey

AmandaB ·
When we first found out Matthew had FPIES we were frustrated trying to figure out what his next food trial would be.  We failed rice, then peas, and felt like we were in the dark playing russian roulette with our next choice.  I created this...
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Re: A new definition

AmandaB ·
Oh Beth! Little Jaiden is adorable, and you're right - he doesn't deserve ANY of this! And I can't imagine throwing something else on top of dealing with FPIES. The only thing I can think is that you caught this early, possibly because you've had to be SO in tune to everything going on with him b/c of his FPIES. We'll be praying for your whole family, I wish I could just hug you! Hang in there, Jaiden has been blessed with such an awesome Mommy - you're going to get through this because you...
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Re: Milk Supply Worries

AmandaB ·
Thanks, Amanda Has anyone out there taken prolactin to increase your supply? When I was reading up on prolactin it looked like there were certain activities I could do to increase the prolactin levels in my body (I'd need my husband to help out here). Guess I'll get off the computer and see if I can go increase my prolactin levels w/o a supplement
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Milk Supply Worries

AmandaB ·
So, we're EBF, but now my supply is getting really close to what he's taking in everyday.  I've always been like a squirrel when it comes to my milk, I save as much as possible.  Before we realized Matthew had FPIES and that he reacted to...
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Re: A happy little story!

AmandaB ·
That's hilarious, Jamie! I had to have a talk with my husband about not eating Matthew's CheeCha puffs when they came in the mail - he loves to snack on our daughter's puffs With the CheeCha puffs being so hard to get, I had to put my foot down and stop the snacking...when he feeds Matthew my husband has to clip the CheeCha puff bag closed every time he gets one for Matthew, or he finds himself absentmindedly grabbing one and throwing it in his own mouth!
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Re: Reaction to Elecare?

AmandaB ·
I know that taking a break from a food can intensify the reaction - I know I've seen it in more than one place, but this is the first one I found that references a break: "The disease presents in two phases: the initial presentation is that of a chronic disease while the antigen is being ingested. This can be followed by an acute phase if the antigen is removed from the diet and subsequently re-ingested, with symptoms occurring about two hours after ingestion. In a young child, the...
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Re: Trialing foods within a food family

AmandaB ·
Yeah, the groups are weird. When I go through the survey, the kids who failed peas and tried green beans ALL failed green beans, but some of the kids who failed green beans passed peas. And apple and peach failures seemed more related than apple and pear.... It makes me wonder what the protein structures are like. Too bad you can't find THAT info online
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Re: Homemade Pedialyte Recipe

AmandaB ·
Awesome Did I see someone post once that some types of baking soda have a trigger in them? Or maybe it was baking powder? Am I totally crazy?
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Re: Pork

AmandaB ·
Hey, those unplanned Mommy moments are sometimes the best - you just go with your instincts and see what happens. Good Luck!
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Re: To Blog or Not to Blog...

AmandaB ·
Thanks, everyone I wrote an update on Matthew's latest appointment on the site, and my husband just started laughing at me and said "You've got a blog!" That wasn't my intention, but I guess it's maybe turning into that...it just seems like the best way to get info out and manage my time. But don't tell my husband I admitted it's a blog, I try to limit the number of times he thinks he's right
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Re: A happy little story!

AmandaB ·
oh, now you made ME get teary-eyed
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Re: COCONUT!!!!!

AmandaB ·
We're going to trial coconut at one year - I'm planning on making some kind of coconut sorbet for Matthew's first birthday "cake" - he reacts on day five, so at least he'll enjoy his bday
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Re: To Blog or Not to Blog...

AmandaB ·
I did submit Matthew's story....it's in the proofreading stage
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Neocate Nutra?

AmandaB ·
So, our allergist wants us to trial Neocate Nutra.  I understand that the proteins are already broken down, and that it's iron fortified.  Are the texture and the iron the only things in the pro category?  I see that it has lots of...
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Re: Food survey

AmandaB ·
Hi KevinsMommy At the top of the welcome page there is a "resources" tab. On the resources page scroll down, the food survey links are on there. There's the raw data link in addition to the results link on the welcome page. It's in spreadsheet format, so you can sort the data by your son's triggers to compare what kids with FPIES reactions to similar food have reacted to and passed. To make the survey I used Google Docs (b/c it was free) and the choices were limited, so I have to manually...
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Re: COCONUT!!!!!

AmandaB ·
Yay!!!!! That's SO awesome
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To Blog or Not to Blog...

AmandaB ·
When we first received Matthew's FPIES diagnosis my husband immediately said "We've got to have a website!"  He thought it would be cool to have bibs/onesies/etc. with the address on it so that anyone could go check out what Matthew could or...
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How to Explain FPIES?

AmandaB ·
I don't like to run around proclaiming to the world that Matthew has FPIES, but there have been a few times recently when I needed to explain it, and I TOTALLY botched it.   What's too much detail?  What's too little?  And maybe...
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Re: Finding an FPIES Doctor

AmandaB ·
Another question I've seen is "do we even need to see a doctor?" My personal answer is yes. Even though I was positive it was FPIES, talking to an allergist who was OUR allergist changed everything. Family members (and my husband) were totally supportive when they were supportive but questioning before. My Mom runs around sweeping like crazy when we visit b/c she's so afraid Matthew will get a hold of something. And she makes sure there is no rice in what we eat (I'm EBF and Matthew reacts...
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Finding an FPIES Doctor

AmandaB ·
Update to this post:  I started a submission form so that all the FPIES parents out there can share their doctor's info with each other.  Hopefully it can help you! http://fpies.bofferding.net/who-is-your-fpies-doctor.html So, we...
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Hey Texas!

AmandaB ·
So, I guess we belong here?  Kind of feels like we should get a section all to our own, since we were our own country and all ;) We're in the Austin area - Cedar Park actually.  The allergist we see is with 'Specially for Children...
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Halloween & FPIES

AmandaB ·
Here is an awesome article that Amanda LaFew for the PIC Foundation last year on Halloween tips for kids with FPIES: https://www.facebook.com/note.php?note_id=169844073028410
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Re: Mt. Sinai Study!

AmandaB ·
Awesome!!! Just sent my email to ask if we can participate
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Re: Coconut ice cream!!!

AmandaB ·
I was thinking about starting a coconut trial on Matthew's 1st birthday with coconut sorbet...he doesn't react until day 4 or 5, so at least he'd get to enjoy it on his birthday! So glad this is working for you
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Re: Something FPIES Mommies and Daddies will understand

AmandaB ·
Just WOW....I feel all tingly all over! What amazing friends - you are truly blessed
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Refusing to Eat :(

AmandaB ·
I had a champion eater until he threw up the other day...now we can't even trick him into opening his mouth for food (the tricks work a couple times, then he catches on and can't be tricked anymore). We've tried tempting him with his paci,...
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Re: Reaction to Fish Oil in my Milk?

AmandaB ·
Well, doesn't look like it was the fish oil after all...gotta love the mystery reactions But I'll take this over the roller coaster a lot of the formula babies dealt with at such a young age...so glad I am able to EBF, even though I REALLY miss rice!
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Amanda B. - Matthew's Mommy

AmandaB ·
Here's the "short" version :) We're EBF here, so Matthew had nothing but "Mommy's Milk" until he was six months.  He had textbook FPIES reactions to his first two foods (rice and peas).  I took him to the doctor after the second rice...
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BabyCenter's 10 Best Foods for Babies

AmandaB ·
If you're like me, you are trying to find a balance between avoiding your kid's triggers and getting the best "bang for the buck" foods (in terms of nutrition) you can find into them.   Here's a list BabyCenter put together of...
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High and Low Pesticide Foods

AmandaB ·
Hey, this is from a CNN article from about a year ago, but since a LOT of us here make our own baby food, I thought it would be a good re-post. Non-organic high Pesticide Foods - Some have up to 67 different pesticides in them.  These are...
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Reaction to Fish Oil in my Milk?

AmandaB ·
Hey, has anyone had their kid react to fish oil through their milk?  Just curious...Matthew threw up a bunch last night...nothing new in his diet but I did remember to take my fish oil (I'm not the best at remembering to take it), so that's the...
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FPIES United Family Fund

AmandaB ·
Fundraising for research into FPIES, through The Children's Hospital of Philidelphia (CHOP). Here's the link: http://giving.chop.edu/site/TR...=1030&pxfid=6824
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FPIES Journal Article, January 2005 - Scott H. Sicherer, MD

AmandaB ·
Food protein-induced enterocolitis syndrome: Case presentations and management lessons by Scott H. Sicherer, MD  From the Journal of Allergy and Clinical Immunology, January ...
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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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**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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