Today, February 29th is Rare Disease Day. It's been really humbling to read all the information running across my facebook news feed about the thousands of rare diseases that afflict so many people. Makes me feel lucky that Cutie Pie is only dealing with food issues. It sometimes seems like an insurmountable battle for her, but in reality we are surviving and surviving well.
It's pretty fitting that we received a letter in the mail from Cutie Pie's allergist today. He sent us a copy of the letter he was sending to our pediatrician so we can all be on the same page with her medical care. It was very spelled out about what his findings were (most likely has FPIES) and why and our plan of action. However, it does say on there that we would hold off introducing any solids until she was a year old and that's not what we talked about at his office. But with taking 2 weeks to trial each new food, at this rate if she passes each food between now and her birthday she would have a whopping 9 safe foods. That's not a lot.
Tomorrow we are seeing a chiropractor for the first time. I found a pediatric certified chiropractor about 30 minutes from home. My husband thinks it's kinda wacky and doesn't think they are going to do anything to actually help except collect a $20 co-pay but I'm optimistic. I'm more on the holistic/crunchy side of medical beliefs so since "normal" modern medicine can't do anything for her, maybe a non-traditional approach will help. I've read lots of success stories about chiropractic care helping with digestive issues and auto-immune disorders, so why not. I'm not expecting a cure, but if they can help her little body accept at least ONE safe food I would be incredibly grateful.
Speaking of safe foods, I think we are going to start food trails again later next week. It's been almost a month since Cutie Pie has had anything other than breastmilk. She has started waking up hungry(?) in the middle of the night and she'd put every little crumb of anything she can find in her mouth if I let her. I've picked out avocado to try first - it has a lot of good fats and nutrients in it and I feel like it gives a little more of a punch than say green beans. Avocado was the first food we ever tried with her back when she was 4 months old. She didn't have any major reactions to it, so I hope we are at least safe from a full blown vomiting attack. Plus, if it is a pass then she can start having it as finger foods! Now THAT would be exciting!
Wednesday, February 29, 2012
Sunday, February 26, 2012
He won - like always.
God, that is. He won the argument and I went to church this morning.
I left church feeling renewed and challenged and refreshed. Talk about an amazing service. I go to a pretty spirit-filled church. It's not uncommon to hear someone speaking out in tongues or speaking words from God. Today a man stood up and talked about how God sent His son for us. HIS CHILD. As I help my sleeping Cutie Pie in my arms I started to cry. All I could think about was how He watched His child grow and develop. His first steps. First words. First carpentry attempt. Watched him play with his childhood friends. And the whole time God knew he was destined to be tortured and killed. Can you imagine that? Really puts things in perspective. Yes, I know my daughter may not be able to eat Cheerios or pizza or french fries. She won't have a birthday cake at her first birthday. But you know what? She will have a birthday. She will have LOTS of birthdays because I will do everything in my power to keep her healthy and happy. When I look at her I can imagine her future as a doctor or an astronaut or a race car driver. She will grow up. Have kids of her own. She will have friends and lovers. She will live long enough to experience her first love, first heartbreak. She will live.
I am humbled by the responsibility God has given to me in this little Cutie Pie. She needs a little extra love, a little extra attention. And I will give her every ounce that I can.
Proverbs 27:17
"As iron sharpens iron, so one person sharpens another."
Man, I'm gonna be one sharp momma after this!
I left church feeling renewed and challenged and refreshed. Talk about an amazing service. I go to a pretty spirit-filled church. It's not uncommon to hear someone speaking out in tongues or speaking words from God. Today a man stood up and talked about how God sent His son for us. HIS CHILD. As I help my sleeping Cutie Pie in my arms I started to cry. All I could think about was how He watched His child grow and develop. His first steps. First words. First carpentry attempt. Watched him play with his childhood friends. And the whole time God knew he was destined to be tortured and killed. Can you imagine that? Really puts things in perspective. Yes, I know my daughter may not be able to eat Cheerios or pizza or french fries. She won't have a birthday cake at her first birthday. But you know what? She will have a birthday. She will have LOTS of birthdays because I will do everything in my power to keep her healthy and happy. When I look at her I can imagine her future as a doctor or an astronaut or a race car driver. She will grow up. Have kids of her own. She will have friends and lovers. She will live long enough to experience her first love, first heartbreak. She will live.
I am humbled by the responsibility God has given to me in this little Cutie Pie. She needs a little extra love, a little extra attention. And I will give her every ounce that I can.
Proverbs 27:17
"As iron sharpens iron, so one person sharpens another."
Man, I'm gonna be one sharp momma after this!
Sad.
I am mad at God.
There. I said it. It makes me feel very guilty that I feel that way, but it's true. I am mad. Why my little girl? Why would he allow such an innocent beautiful little girl to be afflicted with FPIES - especially one in a family full of cooks and foodies. It's just not fair.
I'm not typically one to be mad at the Almighty. I am a devout Christian. I did oversees mission work while I was a teenager. I love going to church. I love teaching my kids about Jesus and I pray a lot. I see God in all the little things and he has been amazing to me. I know he is trying to teach me something and has a purpose for all of this, but for now I would be lying if I said I understood Him in this. And since I'm continuing with the online confession, I'll admit that I haven't been to church ONCE since this all started. I've told myself that it's because church + a three year old that refuses to go to the preschool class + a baby that loves to fill silent times with "talking" does not equal a recipe for success. But I am beginning to wonder on this Sunday morning as I debate the church-or-no argument with myself for another week if there is more to it. And there is.
I've told myself lots of things about FPIES and God over the last couple months. I don't know if any of it is true, but some of it makes me feel better. I truly believe that her little soul was destined to come to this earth - with all of its problems and insecurities and food issues. I am HONORED that God chose me to be her mom. That must mean he trusts me to take care of her and keep her safe and to provide the best I can for her. I also know that he has a lesson in all of this for me. When my son was diagnosed with food allergies, I made it my mission to cook as much as possible for him so he could be a "normal" baby/toddler and still enjoy life's goodness. I learned more about cooking and food and nutrition during that time than all my college heath classes could have taught me. Now with Cutie Pie, I am learning more about how the body works and even more about food and the importance of going back to the basics than ever before. Science and Health and nutrition have always intrigued me - so this learning and research has in some way been a twisted pleasure of mine. I don't understand a lot of it, but I sure enjoy learning!
But that doesn't change the fact that I am still mad. Just today a friend of mine on facebook posted how she took her 6 month old niece out for Skyline Chili and gave her a couple bites. *insert mommy cringe* but more than anything, it just made me sad. My Cutie Pie may NEVER be able to run through a fast food restaurant. May NEVER experience the joy that is a Happy Meal. She will be healthier for it, and she will never know the difference, but I will. And I'm sad.
There. I said it. It makes me feel very guilty that I feel that way, but it's true. I am mad. Why my little girl? Why would he allow such an innocent beautiful little girl to be afflicted with FPIES - especially one in a family full of cooks and foodies. It's just not fair.
I'm not typically one to be mad at the Almighty. I am a devout Christian. I did oversees mission work while I was a teenager. I love going to church. I love teaching my kids about Jesus and I pray a lot. I see God in all the little things and he has been amazing to me. I know he is trying to teach me something and has a purpose for all of this, but for now I would be lying if I said I understood Him in this. And since I'm continuing with the online confession, I'll admit that I haven't been to church ONCE since this all started. I've told myself that it's because church + a three year old that refuses to go to the preschool class + a baby that loves to fill silent times with "talking" does not equal a recipe for success. But I am beginning to wonder on this Sunday morning as I debate the church-or-no argument with myself for another week if there is more to it. And there is.
I've told myself lots of things about FPIES and God over the last couple months. I don't know if any of it is true, but some of it makes me feel better. I truly believe that her little soul was destined to come to this earth - with all of its problems and insecurities and food issues. I am HONORED that God chose me to be her mom. That must mean he trusts me to take care of her and keep her safe and to provide the best I can for her. I also know that he has a lesson in all of this for me. When my son was diagnosed with food allergies, I made it my mission to cook as much as possible for him so he could be a "normal" baby/toddler and still enjoy life's goodness. I learned more about cooking and food and nutrition during that time than all my college heath classes could have taught me. Now with Cutie Pie, I am learning more about how the body works and even more about food and the importance of going back to the basics than ever before. Science and Health and nutrition have always intrigued me - so this learning and research has in some way been a twisted pleasure of mine. I don't understand a lot of it, but I sure enjoy learning!
But that doesn't change the fact that I am still mad. Just today a friend of mine on facebook posted how she took her 6 month old niece out for Skyline Chili and gave her a couple bites. *insert mommy cringe* but more than anything, it just made me sad. My Cutie Pie may NEVER be able to run through a fast food restaurant. May NEVER experience the joy that is a Happy Meal. She will be healthier for it, and she will never know the difference, but I will. And I'm sad.
Wednesday, February 22, 2012
My Monster Has A Name!
Our allergist appointment today was amazing. Did I mention that I love that doctor? He sat down with me for a good 30 minutes at the beginning of the appointment and we went through all the symptoms that Cutie Pie has been showing. And then you'll never guess what happened..... HE MENTIONED FPIES. Before I could throw the term out there, before I could mention the medical journal articles I had brought, before anything he said it sounded more like "enterocolitis" than an allergy. I thought I was going to jump off the chair and kiss him. I'm not crazy. I'm not over-reacting. SHE HAS WHAT I THOUGHT SHE HAD! I feel verified.
And then I realized something - although I was right and we have a label to this madness, my baby is still sick. She still can't eat. She won't have a birthday cake at her first birthday party. I can't use Cheerios to bribe her into taking her first steps. She may never experience ice cream or french fries or chicken nuggets. She may never be able to go to the movies and eat her weight in popcorn. She may never be "normal." I may never feel comfortable letting her go to school. Or spend the night at a friend's house. Or go to grandma's house in the summer. And according to our allergist, there is no evidence to say for sure if she will grow out of it. This may be the beginning of a LIFE LONG struggle with food. Maybe this is my punishment for my battle with wanting to be anorexic as a teenager (I never made it more than a day or two because I couldn't handle being hungry...lol).
So after doing a skin prick test for her current trigger foods plus some extras to rule out a typical allergy the good doctor and I sat down and tried to figure out a current plan of attack for this nasty FPIES monster. Here is what we came up with:
1. Breastfeed as long as possible. AT LEAST to a year, and then we will meet again and re-evaluate and discuss possibly slowly introducing dairy/soy into her diet.
2. Hold off on giving her any more solids at all in order to let her digestive tract mature a little more. Wait at least a month (or as long as she can tolerate only having breastmilk) and then slowly introduce veggies and then fruits and then meats, giving each food at least a week at a time before trying something new.
3. No grains, dairy, or soy AT ALL until we meet again in July.
I'm sad, relieved, depressed, and overwhelmed all at the same time. As we got back into the car the song "Unwritten" was playing on the radio and I thought the lyrics were so incredibly appropriate:
"Today is where your book begins, the rest is still unwritten."
And then I realized something - although I was right and we have a label to this madness, my baby is still sick. She still can't eat. She won't have a birthday cake at her first birthday party. I can't use Cheerios to bribe her into taking her first steps. She may never experience ice cream or french fries or chicken nuggets. She may never be able to go to the movies and eat her weight in popcorn. She may never be "normal." I may never feel comfortable letting her go to school. Or spend the night at a friend's house. Or go to grandma's house in the summer. And according to our allergist, there is no evidence to say for sure if she will grow out of it. This may be the beginning of a LIFE LONG struggle with food. Maybe this is my punishment for my battle with wanting to be anorexic as a teenager (I never made it more than a day or two because I couldn't handle being hungry...lol).
So after doing a skin prick test for her current trigger foods plus some extras to rule out a typical allergy the good doctor and I sat down and tried to figure out a current plan of attack for this nasty FPIES monster. Here is what we came up with:
1. Breastfeed as long as possible. AT LEAST to a year, and then we will meet again and re-evaluate and discuss possibly slowly introducing dairy/soy into her diet.
2. Hold off on giving her any more solids at all in order to let her digestive tract mature a little more. Wait at least a month (or as long as she can tolerate only having breastmilk) and then slowly introduce veggies and then fruits and then meats, giving each food at least a week at a time before trying something new.
3. No grains, dairy, or soy AT ALL until we meet again in July.
I'm sad, relieved, depressed, and overwhelmed all at the same time. As we got back into the car the song "Unwritten" was playing on the radio and I thought the lyrics were so incredibly appropriate:
"Today is where your book begins, the rest is still unwritten."
Tuesday, February 21, 2012
Tomorrow, It's Only a Day Away....
Tomorrow is our big appointment with Cutie Pie's allergist. He is such a nice man - young, not bad looking, smart, and has never made me feel crazy. My Little Man has struggled with food allergies since he was three months old, and praise God our relationship with the allergist has been pretty distant the last year or so. But while we were in the thick of it we got to know the good doctor fairly well. Although he isn't associated directly with the local Children's Hospital and isn't really a PEDIATRIC allergist, he used to be a pediatrician so I'll take it! He's great with the kids. I just cannot sing his praises loud enough.
Anywhoo, I am a nervous wreck. You would think I'm taking her for surgery or to be fed to the wolves tomorrow, when in all reality all I want is a diagnosis. And ideally I'd like for HIM to come up with it instead of breaking out the copies of medical journal articles I have printed and ready to take with in the morning. I know there is at least one other local mom with an FPIES child who has seen our allergist so I'm hoping that means it at least isn't completely foreign to him. But from what I understand, since FPIES is so rare it isn't uncommon for doctors to be unfamiliar with it. In all honestly, there are days I feel like Cutie Pie deserves a role on the show House. They are always coming up with off the wall diagnosis for patients! I think FPIES would make a great medical mystery for that show actually. Projectile vomiting, bloody diarrhea, cute babies.... sounds like good TV to me!
Today as Cutie Pie struggled with her 10th case of the hiccups for the day I began to think about how much my hatred of FPIES has evolved over the last two months. Those first few weeks were mostly marked by confusion and disbelief. I didn't really understand what the big deal was - yeah, so she can't tolerate rice. So what? It's just rice. There are plenty of other foods out there for her. Then she started having issues with pears. Dang you FPIES, but at least pears are fairly easy to avoid. Then we started a food journal and started trialing oatmeal. Fail. Then prunes. Fail. Then I started to notice a relationship between symptoms and me eating peas and onions. And maybe corn. Fast forward to today and I am PISSED at this stupid FPIES. It is robbing my beautiful Cutie Pie of a "normal" infancy. And it is robbing me of some of my favorite foods since I am still breastfeeding! Now I am desperate for a diagnosis. I want to know I am directing my anger and frustration and depression at something I can for sure call by name.
So tomorrow me, my Cutie Pie, and our huge notebook filled with details about every bite of food, every rash, every mucus filled diaper will march into that office and ask for a diagnosis. Wish us luck!
Anywhoo, I am a nervous wreck. You would think I'm taking her for surgery or to be fed to the wolves tomorrow, when in all reality all I want is a diagnosis. And ideally I'd like for HIM to come up with it instead of breaking out the copies of medical journal articles I have printed and ready to take with in the morning. I know there is at least one other local mom with an FPIES child who has seen our allergist so I'm hoping that means it at least isn't completely foreign to him. But from what I understand, since FPIES is so rare it isn't uncommon for doctors to be unfamiliar with it. In all honestly, there are days I feel like Cutie Pie deserves a role on the show House. They are always coming up with off the wall diagnosis for patients! I think FPIES would make a great medical mystery for that show actually. Projectile vomiting, bloody diarrhea, cute babies.... sounds like good TV to me!
Today as Cutie Pie struggled with her 10th case of the hiccups for the day I began to think about how much my hatred of FPIES has evolved over the last two months. Those first few weeks were mostly marked by confusion and disbelief. I didn't really understand what the big deal was - yeah, so she can't tolerate rice. So what? It's just rice. There are plenty of other foods out there for her. Then she started having issues with pears. Dang you FPIES, but at least pears are fairly easy to avoid. Then we started a food journal and started trialing oatmeal. Fail. Then prunes. Fail. Then I started to notice a relationship between symptoms and me eating peas and onions. And maybe corn. Fast forward to today and I am PISSED at this stupid FPIES. It is robbing my beautiful Cutie Pie of a "normal" infancy. And it is robbing me of some of my favorite foods since I am still breastfeeding! Now I am desperate for a diagnosis. I want to know I am directing my anger and frustration and depression at something I can for sure call by name.
So tomorrow me, my Cutie Pie, and our huge notebook filled with details about every bite of food, every rash, every mucus filled diaper will march into that office and ask for a diagnosis. Wish us luck!
Saturday, February 18, 2012
Why?
Sometimes I think that people who put their lives up on the Internet must be some crazy, egocentric, narcissistic loon. I mean, really? What makes your life/kids/work/etc so special that it must be put out for the world to see? I guess I have crossed over to the land of the loonies, because I somehow feel this blog is already semi-cathartic. I used to fill up notebook upon notebook journaling when I was a teenager. I had a LiveJournal account in college in which I went a little overboard detailing my escapades and accidentally admitted to cheating on a boyfriend. (Oops) And now there is this blog for my Cutie Pie. But why?
1. I need a place to vent/whine/complain. People I know in real life probably could care less that my beautiful little girl had a diaper filled with mucus today. Some details should just be kept private - or aired on the Internet for any stranger to read.
Plus, I feel the somewhat compulsive need to have other people see me as rock solid. The mom who goes to bat for her kids without blinking. The mom who isn't afraid of anything. The mom who has it all together. The truth is I feel like I am grasping at strings and barely hanging on. Every case of the hiccups or new itchy spot of eczema makes my heart race. I vacuum my floors three times a day - not because I'm superwife and want a clean house, but because I'm terrified my three year old will drop something and Cutie Pie will pick it up and eat it. I'm afraid the doctors will give me bad news or worse - no news. I'm afraid to give Cutie Pie a lick of a lollipop or let her chew on board books. Right now I'm the exact opposite of who I want other people to see me as so I can only turn my thoughts and confessions onto the ears of strangers.
2. I feel alone. How do you describe FPIES to friends/family? My son has "typical" food allergies and I still have to very closely watch his food interactions with people who have known him his whole life. Just a few months ago I had to take away a bag of M&Ms that my mom bought him because they have the possibility of containing peanuts. Apparently my mom doesn't understand that she needs to read EVERY food label warning. How in the heck do I expect her to every understand the lengths I need to take to keep Cutie Pie safe?
3. Other FPIES mommies that have blogs have been a huge lifeline for me. After I initially came across FPIES as a possibility for Cutie Pie I felt as if I had a huge black cloud following me around. Reading other people's experiences helped me know that yes, this sucks but at the same time it can work. Hopefully I can return the favor one day.
4. I read something on another FPIES mommy blog about feeling like one of the "cool kids" by having a blog about it. It's kinda true. It seems like the thing to do, so why not. I love to write, I love my kids, and it just kinda fits.
So Blog-o-sphere, here I am. Good to meet you.
1. I need a place to vent/whine/complain. People I know in real life probably could care less that my beautiful little girl had a diaper filled with mucus today. Some details should just be kept private - or aired on the Internet for any stranger to read.
Plus, I feel the somewhat compulsive need to have other people see me as rock solid. The mom who goes to bat for her kids without blinking. The mom who isn't afraid of anything. The mom who has it all together. The truth is I feel like I am grasping at strings and barely hanging on. Every case of the hiccups or new itchy spot of eczema makes my heart race. I vacuum my floors three times a day - not because I'm superwife and want a clean house, but because I'm terrified my three year old will drop something and Cutie Pie will pick it up and eat it. I'm afraid the doctors will give me bad news or worse - no news. I'm afraid to give Cutie Pie a lick of a lollipop or let her chew on board books. Right now I'm the exact opposite of who I want other people to see me as so I can only turn my thoughts and confessions onto the ears of strangers.
2. I feel alone. How do you describe FPIES to friends/family? My son has "typical" food allergies and I still have to very closely watch his food interactions with people who have known him his whole life. Just a few months ago I had to take away a bag of M&Ms that my mom bought him because they have the possibility of containing peanuts. Apparently my mom doesn't understand that she needs to read EVERY food label warning. How in the heck do I expect her to every understand the lengths I need to take to keep Cutie Pie safe?
3. Other FPIES mommies that have blogs have been a huge lifeline for me. After I initially came across FPIES as a possibility for Cutie Pie I felt as if I had a huge black cloud following me around. Reading other people's experiences helped me know that yes, this sucks but at the same time it can work. Hopefully I can return the favor one day.
4. I read something on another FPIES mommy blog about feeling like one of the "cool kids" by having a blog about it. It's kinda true. It seems like the thing to do, so why not. I love to write, I love my kids, and it just kinda fits.
So Blog-o-sphere, here I am. Good to meet you.
Thursday, February 16, 2012
Spoiled Little Cutie
Cutie Pie has been having rough nights lately. She's been waking up around midnight and then crying/whining/whimpering in my arms until about 2am when she finally relaxes enough to let me put her in the swing (which no longer will actually swing because she is too heavy!) or her car seat. I have no idea what is causing it. My wonderful husband thinks she is just spoiled, but to prove him wrong I packed us all up this morning and trekked down to our pediatrician's office. SURELY my little angel must have an ear infection or something. I was on a mission to prove him wrong. Well, it didn't exactly work out so well. Our pediatrician could find nothing medically wrong with Cutie Pie. He gave her a thorough check-up without even once making me feel like a loony mom. He checked her ears, her teeth, her tummy, her breathing, her muscle tone, her scalp, everything. Then he sat down with me and we talked about her bowel movements (or lack thereof lately!) and discussed strategies to keep her feeling comfortable and regular. Then we went over her allergy test results in more detail than he gave me over the phone last week when I talked to him. He even remembered and brought up the journey we had with my older son when he was in the process of being diagnosed with food allergies.
Did I mention that I L-O-V-E our pediatrician?
Wednesday, February 15, 2012
My Cutie Pie and FPIES
Cutie Pie is almost 7 months old. Looks perfect in every way. Chubby cheeks, pudgy thighs, and a Buddha belly. You would never know that there was anything wrong with her. Unless you were here on December 23, 2011. That's when she had her first FPIES reaction. Our first clue in a string of many that our perfect little girl was facing some challenges ahead of her.
FPIES stands for Food-Protein Induced Enterocolitis. I could go into a lot of detail about what it is, but I'll opt for the short version. For us it means a lot of throwing up and not a lot of food options. It means a million questions and not nearly enough answers. It means getting more information from other moms who have been there, done that instead of the medical community. It means many hours of rocking a screaming baby in the middle of the night. It means crying at the grocery store because I'm wickedly tired and I don't know if Cutie Pie will *ever* get to eat an Oreo. It means pages and pages of documentation about all her food input and all her output.
Maybe I should start at the beginning. December 23, 2011 Cutie Pie enjoyed a big heaping bowl of rice cereal mixed with a container of prunes. All was great in the world. Family was visiting for Christmas, presents were wrapped and under the tree. About three hours later she started vomiting. VIOLENTLY. I have never in my life seen puke come out of a little baby so forcefully. It would have been comical except that it wasn't. It was scary. After 30 minutes of continuous puking and a very frazzled phone call to the pediatrician Cutie Pie collapsed into a deep sleep. When she woke up several hours later it was as if nothing had happened. We brushed it off and went along with life.
January 2, 2012 we were so excited to give Cutie Pie her first finger food - a Baby Mum Mum. Her big brother had loved them as a baby and it seemed as if Cutie Pie would be no different. She chowed down and gummed her way through it. It was so much fun to watch her eat. Until two hours later when the puking began again. This time it continued for over an hour and she puked until there was nothing left. Then she puked some more. By the time the reaction stopped she was falling asleep between episodes and wasn't even lifting her head or fully waking up before vomiting again. Had I figured out a way to get her to the ER without her choking on the bile she was expelling I would have. Again she finally passed out and awoke hours later a happy normal baby.
That was when I began doing research and stumbled upon an FPIES support board on Babycenter.com. The symptoms described Cutie Pie down to the last mucusy poop filled detail. Every story I read was like reading about my own daughter. It was then we started to suspect FPIES. I started keeping a journal to detail our adventures in food. Since I am still breastfeeding I have to monitor my own food intake as well as Cutie Pie's. We also had her tested for "traditional" allergies. Everything came back negative except for a moderate positive reaction to peanuts.
Since then we have trialed a few foods, all of which have been given a big fat rejection letter by Cutie Pie's body. Oatmeal led to green slimy mucus filled diapers (gross, I know). Pears and prunes led to the horrible constipation that made Cutie Pie cry out in her sleep. Strawberries were flat out rejected. We also noticed a pattern of eczema flare-ups and bright red slapped looking cheeks when she was exposed to peas, onions, or chickpeas through my milk. So far, she has NO foods that we can call safe. So when most babies her age are expanding their palates, we are going back to only breastmilk. It is the only thing she can tolerate.
As of now we are officially undiagnosed, except by Dr. Google. Our pediatrician has been very supportive and we have been in close contact with his office to track her symptoms. Next week we have our first appointment with an allergist, and hopefully we will be able to get some more answers then.
By far the worst part of FPIES is the fact there is nothing I can do for Cutie Pie. No medicine will make it all better. No medical test can give you a definitive diagnosis. All you can do is avoid trigger foods, and when you don't know what exactly those trigger foods are it all ends up as a game of chance. Maybe today she will be happy and comfortable. Maybe today we will find a safe food. Maybe today we will get some answers.
FPIES stands for Food-Protein Induced Enterocolitis. I could go into a lot of detail about what it is, but I'll opt for the short version. For us it means a lot of throwing up and not a lot of food options. It means a million questions and not nearly enough answers. It means getting more information from other moms who have been there, done that instead of the medical community. It means many hours of rocking a screaming baby in the middle of the night. It means crying at the grocery store because I'm wickedly tired and I don't know if Cutie Pie will *ever* get to eat an Oreo. It means pages and pages of documentation about all her food input and all her output.
Maybe I should start at the beginning. December 23, 2011 Cutie Pie enjoyed a big heaping bowl of rice cereal mixed with a container of prunes. All was great in the world. Family was visiting for Christmas, presents were wrapped and under the tree. About three hours later she started vomiting. VIOLENTLY. I have never in my life seen puke come out of a little baby so forcefully. It would have been comical except that it wasn't. It was scary. After 30 minutes of continuous puking and a very frazzled phone call to the pediatrician Cutie Pie collapsed into a deep sleep. When she woke up several hours later it was as if nothing had happened. We brushed it off and went along with life.
January 2, 2012 we were so excited to give Cutie Pie her first finger food - a Baby Mum Mum. Her big brother had loved them as a baby and it seemed as if Cutie Pie would be no different. She chowed down and gummed her way through it. It was so much fun to watch her eat. Until two hours later when the puking began again. This time it continued for over an hour and she puked until there was nothing left. Then she puked some more. By the time the reaction stopped she was falling asleep between episodes and wasn't even lifting her head or fully waking up before vomiting again. Had I figured out a way to get her to the ER without her choking on the bile she was expelling I would have. Again she finally passed out and awoke hours later a happy normal baby.
That was when I began doing research and stumbled upon an FPIES support board on Babycenter.com. The symptoms described Cutie Pie down to the last mucusy poop filled detail. Every story I read was like reading about my own daughter. It was then we started to suspect FPIES. I started keeping a journal to detail our adventures in food. Since I am still breastfeeding I have to monitor my own food intake as well as Cutie Pie's. We also had her tested for "traditional" allergies. Everything came back negative except for a moderate positive reaction to peanuts.
Since then we have trialed a few foods, all of which have been given a big fat rejection letter by Cutie Pie's body. Oatmeal led to green slimy mucus filled diapers (gross, I know). Pears and prunes led to the horrible constipation that made Cutie Pie cry out in her sleep. Strawberries were flat out rejected. We also noticed a pattern of eczema flare-ups and bright red slapped looking cheeks when she was exposed to peas, onions, or chickpeas through my milk. So far, she has NO foods that we can call safe. So when most babies her age are expanding their palates, we are going back to only breastmilk. It is the only thing she can tolerate.
As of now we are officially undiagnosed, except by Dr. Google. Our pediatrician has been very supportive and we have been in close contact with his office to track her symptoms. Next week we have our first appointment with an allergist, and hopefully we will be able to get some more answers then.
By far the worst part of FPIES is the fact there is nothing I can do for Cutie Pie. No medicine will make it all better. No medical test can give you a definitive diagnosis. All you can do is avoid trigger foods, and when you don't know what exactly those trigger foods are it all ends up as a game of chance. Maybe today she will be happy and comfortable. Maybe today we will find a safe food. Maybe today we will get some answers.
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