The effects of a food reaction for an FPIES child?
Vomiting, diarrhea and dehydration leading to possible shock symptoms, for starters...
The effects of FPIES for me?
Although the list is long, the worst of it is the paranoia. I am paranoid. After having friends over I spent a ridiculous amount of time sweeping and vacuuming every corner of our home. I am paranoid that people think I am ridiculously paranoid. I am embarrassed and constantly apologizing for cleaning up food on our floor, or moving their kid's food further away from mine at the table, and moving their kid’s snack trap up to a higher shelf where mine can’t reach it.
The effects of FPIES for Ellie?
She’s paranoid too. She happily grabs ‘her’ vacuum cleaner (the small dust buster-like vacuum that we have) to help me attack every last crumb to keep her little sister safe.
Growing up too fast. Ellie spends an inordinate amount of time pretending that her stuffed animals are sick and often, throwing up. She lines up plastic cups for them to puke into, one after another. Sometimes, they throw up so much that they have to go to the hospital. She is simply re-enacting what has been a part of her life, I know, but it’s disturbing to see how blasé she can be about this. Ellie has been to the ER twice with Ginny for FPIES reactions and once with Ginny after she tumbled down some stairs. Ellie calmly waved goodbye once as I took Ginny to get some stitches after a fall at a friend’s house. She acknowledges the ER when we drive by. Ellie knows which foods are safe for Ginny and got very upset when I fed her watermelon recently, even as I tried to explain that we were trying a new food. The understanding she has of all of this is well beyond her 3.5 years.
Fear. Recently, Ellie had a friend over and that friend got sick while she was here; vomiting repeatedly before her parents arrived to pick her up. It was the flu, but Ellie was in hysterics, certain that the little girl was headed to the ER, knowing that an ER trip for a puking kid is long and not at all fun.
The effects of FPIES for Ginny?
Again, the list is long. Although the health issues and potential issues seem like they should be at the top of the list, the worst and most encompassing of it all, in my book, is the lack of normality. I find it INSANE that she loves to say ‘cookie’ and points to the little table of snacks that we see as we arrive at Ellie’s preschool 3 days a week, yet she cannot eat a cookie. My heart breaks each time she daintily picks up a tiny piece of something from the floor and hands it to me saying, “Here you go!” Shouldn’t kids try to put everything in their mouths? I doubt they should be worrying over every speck on the floor like my kid does. And I desperately want her to get to eat what her friends are eating – that special, delicately frosted, butterfly cookie that the café has for spring time. She doesn’t even ask.
All life experiences change us and shape us. Life is change. What doesn't kill you makes you stronger. I know all that. I get it. Truly, these effects on our life are small. Other families certainly have it worse. Still, it really bugs me that FPIES gets to shape my kids this way – that it gets to shape me. I have to believe that we’ll all come out stronger and better equipped at the end. I have to believe that, but it still makes me sad.
Thursday, April 28, 2011
Saturday, March 26, 2011
Going Kosher
We're going Kosher. That's right. Kosher. And not just for Passover either. Hooray for Passover! Hooray for Kosher Foods!
Okay, so we're not all really going Kosher, but I had some pretty big breakthroughs at the grocery store today with Kosher foods and I'm not yet over my excitement. To be honest, I was so excited (am still so excited) that I think it's irritating John. Sorry honey :)
How did it all happen you ask? OF COURSE I'm going to tell you! Don't I ramble on about everything? Yes, I do. I know. It's okay. Roll your eyes. Done now?
Okay, so we're not all really going Kosher, but I had some pretty big breakthroughs at the grocery store today with Kosher foods and I'm not yet over my excitement. To be honest, I was so excited (am still so excited) that I think it's irritating John. Sorry honey :)
How did it all happen you ask? OF COURSE I'm going to tell you! Don't I ramble on about everything? Yes, I do. I know. It's okay. Roll your eyes. Done now?
Wednesday, March 23, 2011
How You Can Help
I've been putting this off for awhile but it's time. I sat down tonight and caught up on so many other FPIES blogs; the stories of BABIES really struggling through each day and the parents who love them. They are all suffering. I cried too many times. I've been putting this off for awhile, but it's time. So here it is.
I'm not very good at asking for help. So many people have said, "Let me know what I can do to help" but with FPIES, there hasn't really been a way for people to help us. Until now. So, here it is, my plea for help.
When Ginny was 6 months old and had her first FPIES reaction, we rushed to the ER of a major children's hospital in an absolute panic. We live in the third largest city in the United States. No one there knew about FPIES. Since then, we have seen loads of other doctors at that same hospital and many others searching for answers, searching for a diagnosis, searching for understanding to help our child. It has been a long road. At this time, little is understood about FPIES and, in turn, few doctors know about FPIES. I sincerely hope that this will soon change. We are incredibly lucky that Ginny has made so much progress and is tolerating so many different foods. Unfortunately, we know too many kids who rely on elemental formulas, nasal feeding tubes and G tubes for nutrition. We know too many moms whose hearts are breaking as they simply work to feed their children.
The Children's Hospital of Philadelphia (CHOP) is the leading center for FPIES research. When you go online, it's their articles you most often find. When FPIES kids get really ill, that's where their parents take them. This is THE place to find a team approach, with GIs, Allergists and Nutritionists working together; healing children suffering from multiple reactions, preparing plans for parents moving forward, researching to gain understanding of this nasty monster and spreading the word so that more doctors and parents recognize it and can do the same. What Wonder Woman (our Pediatrican) knows she learned from CHOP. What Boy Wonder (our Allergist) knows, he learned from CHOP. What many of the FPIES moms know, they learned from CHOP (and each other of course!). I truly hope we never have to go there, but simply knowing it is there is like having an ace in the hole. Should Ginny ever get that bad... there's always CHOP.
Recently, an FPIES mom we have come to 'know' (via our invaluable/absolutely essential online FPIES community) has paired up with CHOP to create the FPIES United Family Fund. It is the goal of the fund to raise $300,000 to be used for the following:
We appreciate the love and support we have received from family, friends and the FPIES community - and we thank you on behalf of Ginny, and all the FPIES kiddos for any contribution you're able to make.
I'm not very good at asking for help. So many people have said, "Let me know what I can do to help" but with FPIES, there hasn't really been a way for people to help us. Until now. So, here it is, my plea for help.
When Ginny was 6 months old and had her first FPIES reaction, we rushed to the ER of a major children's hospital in an absolute panic. We live in the third largest city in the United States. No one there knew about FPIES. Since then, we have seen loads of other doctors at that same hospital and many others searching for answers, searching for a diagnosis, searching for understanding to help our child. It has been a long road. At this time, little is understood about FPIES and, in turn, few doctors know about FPIES. I sincerely hope that this will soon change. We are incredibly lucky that Ginny has made so much progress and is tolerating so many different foods. Unfortunately, we know too many kids who rely on elemental formulas, nasal feeding tubes and G tubes for nutrition. We know too many moms whose hearts are breaking as they simply work to feed their children.
The Children's Hospital of Philadelphia (CHOP) is the leading center for FPIES research. When you go online, it's their articles you most often find. When FPIES kids get really ill, that's where their parents take them. This is THE place to find a team approach, with GIs, Allergists and Nutritionists working together; healing children suffering from multiple reactions, preparing plans for parents moving forward, researching to gain understanding of this nasty monster and spreading the word so that more doctors and parents recognize it and can do the same. What Wonder Woman (our Pediatrican) knows she learned from CHOP. What Boy Wonder (our Allergist) knows, he learned from CHOP. What many of the FPIES moms know, they learned from CHOP (and each other of course!). I truly hope we never have to go there, but simply knowing it is there is like having an ace in the hole. Should Ginny ever get that bad... there's always CHOP.
Recently, an FPIES mom we have come to 'know' (via our invaluable/absolutely essential online FPIES community) has paired up with CHOP to create the FPIES United Family Fund. It is the goal of the fund to raise $300,000 to be used for the following:
- Research including a sample of 500 FPIES patients
- Education for medical professionals
- The establishment of an ICD (International Statistical Classifications of Diseases) code for FPIES (which could lead to both better awareness and treatment)
- Grant writing for funds to further this research
We appreciate the love and support we have received from family, friends and the FPIES community - and we thank you on behalf of Ginny, and all the FPIES kiddos for any contribution you're able to make.
Thursday, March 10, 2011
What Did I Do?
What did I do?
On Tuesday, I turned my head for a moment and Ginny got one piece of another kid's snack into her mouth. She didn't even get to bite it or chew it or swallow it before I yanked it out, rinsed out her mouth and wiped off her tongue... and then held my breath for the next few hours.
What did I do?
On Wednesday I gave Ginny vanilla yogurt. The only ingredient different from the plain yogurt she's been eating, without issue, is vanilla.
What did I do?
On Wednesday I baked and fed to Ginny whole wheat flour, banana, blueberry muffins, to which I also added vanilla.
What did I do?
On Thursday, without any forethought or intentions of starting an official 'trial' I fed Genevieve freeze dried pineapple. I thought, "What the heck? She's been brilliant! I doubt she's really going to react to any fruits at this point in time."
What did Ginny do?
Last night she woke up at 1 a.m., screaming. I nursed her. We held her and changed her diaper and soothed her and she continued to scream until just after 3 a.m. It's not unusual for Ginny to still wake up once a night to nurse, it's just unusual for her to be wide awake, standing up in her crib, screaming and all but inconsolable for 2 hours.
What won't I do?
I won't give her pineapple again, for a very long time. I will make this week an official trial of vanilla. I will return to my paranoid, eagle eye way of living, even if people do think I'm a little crazy, so I can avoid pain for Genevieve and anxiety for myself. Wheat is safe. Fifteen other foods are too. It's just the thousands of other foods out there that might be dangerous that are keeping me up at night.
On Tuesday, I turned my head for a moment and Ginny got one piece of another kid's snack into her mouth. She didn't even get to bite it or chew it or swallow it before I yanked it out, rinsed out her mouth and wiped off her tongue... and then held my breath for the next few hours.
What did I do?
On Wednesday I gave Ginny vanilla yogurt. The only ingredient different from the plain yogurt she's been eating, without issue, is vanilla.
What did I do?
On Wednesday I baked and fed to Ginny whole wheat flour, banana, blueberry muffins, to which I also added vanilla.
What did I do?
On Thursday, without any forethought or intentions of starting an official 'trial' I fed Genevieve freeze dried pineapple. I thought, "What the heck? She's been brilliant! I doubt she's really going to react to any fruits at this point in time."
What did Ginny do?
Last night she woke up at 1 a.m., screaming. I nursed her. We held her and changed her diaper and soothed her and she continued to scream until just after 3 a.m. It's not unusual for Ginny to still wake up once a night to nurse, it's just unusual for her to be wide awake, standing up in her crib, screaming and all but inconsolable for 2 hours.
What won't I do?
I won't give her pineapple again, for a very long time. I will make this week an official trial of vanilla. I will return to my paranoid, eagle eye way of living, even if people do think I'm a little crazy, so I can avoid pain for Genevieve and anxiety for myself. Wheat is safe. Fifteen other foods are too. It's just the thousands of other foods out there that might be dangerous that are keeping me up at night.
Thursday, March 3, 2011
Wheat Day 3
Wheat is... so far, so good. Ginny seems to love the noodles and has had no reaction thus far. No reaction, but about 1.5-2 hours after eating the noodles she gets a crazy phlegm-y cough that sounds like a pre-puking cough and makes my heart skip a few beats and often has me running down to her, phone in hand, ready to call John or 911 or both... and, thus far, all I've found is a coughing, but still sleeping, kiddo. So we continue to wait and feed her noodles.
That's not a very exciting update, is it? Not so much. So.... just to entertain you, I'll share other Ginny news. Besides waiting to find out if wheat is safe, we've been waiting and waiting for her to talk more. She was great with "Mmmm Hmm!" for yes and "Uh uh" for no. She said "Hi" and waved to everyone she passed (even people in cars we pass on the street). She could happily screech for 'Melmo' (Elmo) and regularly picked up tiny bits of crud off the floor, handed them to us and said something very close to, "Here you go!" She pointed to things and demanded things without words but beyond that, not so much. Tuesday, however, was a pretty incredible day. On Tuesday Ginny, apparently, decided to talk. A lot. All in one day she said: Ellie, pleeeeeeeeeease (mimicking Ellie as she begged for more snacks), Eyes (pointing them out on her dolly), Hi Daddy (on the PHONE!), Bye-bye (to everyone and everything and doors she closed and to her lunch as I took away the leftover bits and and and), belly button (as she begged me to tickle it), cheeeese (in celebration of getting some with her lunch), and go-go-go (repeating what I think I say to both girls a million times a day when they're moving at daddy's pace). And if that wasn't enough, she then decided to learn to use the door handle.
It seems that, in life, we spend a lot of time waiting and then, in a moment's notice, all you've been waiting for is history on you're on to the next anticipated event and reminiscing about how things used to be. I know I've said it before and every parent must say it - and people warn you of it even as you hold your days old newborn in your arms, but wow.... time really flies by. Kids grow up so fast. I think tomorrow Ellie will be getting her drivers license and Ginny will be heading out on her first date. I better charge up my camera to record all these moments in a concrete way because, it my mind, it's just a blur.
That's not a very exciting update, is it? Not so much. So.... just to entertain you, I'll share other Ginny news. Besides waiting to find out if wheat is safe, we've been waiting and waiting for her to talk more. She was great with "Mmmm Hmm!" for yes and "Uh uh" for no. She said "Hi" and waved to everyone she passed (even people in cars we pass on the street). She could happily screech for 'Melmo' (Elmo) and regularly picked up tiny bits of crud off the floor, handed them to us and said something very close to, "Here you go!" She pointed to things and demanded things without words but beyond that, not so much. Tuesday, however, was a pretty incredible day. On Tuesday Ginny, apparently, decided to talk. A lot. All in one day she said: Ellie, pleeeeeeeeeease (mimicking Ellie as she begged for more snacks), Eyes (pointing them out on her dolly), Hi Daddy (on the PHONE!), Bye-bye (to everyone and everything and doors she closed and to her lunch as I took away the leftover bits and and and), belly button (as she begged me to tickle it), cheeeese (in celebration of getting some with her lunch), and go-go-go (repeating what I think I say to both girls a million times a day when they're moving at daddy's pace). And if that wasn't enough, she then decided to learn to use the door handle.
It seems that, in life, we spend a lot of time waiting and then, in a moment's notice, all you've been waiting for is history on you're on to the next anticipated event and reminiscing about how things used to be. I know I've said it before and every parent must say it - and people warn you of it even as you hold your days old newborn in your arms, but wow.... time really flies by. Kids grow up so fast. I think tomorrow Ellie will be getting her drivers license and Ginny will be heading out on her first date. I better charge up my camera to record all these moments in a concrete way because, it my mind, it's just a blur.
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