Food Challenges Through the Eyes of a Mommy
We haven't done a food challenge yet for Matthew. To be honest, I'm (more than) a little scared of what will happen. I've been through the food fails, but I've never intentionally given Matthew a food I know will make him throw up. And of course that's the whole point of a food challenge...you're hoping the food WON'T make him throw up. But that little voice in my head is going to know the truth until it's proven wrong. That rice, peas, coconut, dairy, and venison are the enemy...and by giving them to him I will be hurting my little guy on purpose. If he fails his challenge, I don't know what I'll do, but I do know that I'll feel horrible. That I'll never be able to forgive myself for putting my sweet, smiley little boy through all of that pain.
That's why I'm fine with pushing back challenges. I tell myself (and the world) that I'd like to have a year where we don't max out our insurance deductible, that I'm totally used to living the "FPIES life" and avoiding his triggers...it's our normal and it's not that hard (yeah right), and that I'd like to give him a little more time so that we up his chances of passing the challenge. But the truth is, I don't want to have to face what a challenge fail will mean. First, it will mean that I hurt my precious boy, and he'll be able to understand what's going on this time. His last fail was at 17 months old, when he still didn't really get it. But challenges will happen when he's three (or four), and he's going to understand exactly what's going on, and who did this to him. ME. Mommy. The person who is supposed to protect him and keep him safe drove him to the doctor's office and made him sick. Will he blame me? Will he forgive me? Will he realize how much I love him and how much this hurts me?
The second thing a fail will mean is that our FPIES journey is not over. And I've been clinging to there being an end...I really need that light at the end of the tunnel. It's how I've made it this far. The literature says that most kids outgrow FPIES at the age of three. So when Matthew hit 18 months I did a little dance, because we'd made it halfway...yipee!!!! But then I thought about it again and my party ended. Because "at the age of three" really means "by the age of four." So I put off my halfway celebration another six months, and did a little dance when he turned two. I've been banking on four, and I really need it to be true. I'm tired of taking his food everywhere, of freaking out when he picks up a crumb and puts it in his mouth, of having him not be able to eat the cake at birthday parties. I'm tired of FPIES, and I really want to move on. But not every family gets to move on, and you find that out when your kid fails a challenge. You show up with all this hope, and leave devastated. Please God, let Matthew be one of the lucky ones. Please...
So, that's my Mommy's view from before the challenges even start. One of my FPIES Mommy friends is on the other end of the challenges. Her name is Laurie, and her sweet little daughter failed her food challenge at the age of three AND the age of five. The next food challenge is approaching, two years after the last fail, and Laurie shared her thoughts on what's going through her mind right now, and how she's struggling with holding out hope that their journey will ever end. Her words really touched me, and she kindly gave me permission to share what she wrote. I hope that her words will help the non-FPIES families out there understand what FPIES parents go through. Or that the FPIES families out there who have failed a challenge find that they are not alone in this journey, that others are feeling the same pain that they are.
"I am tired....I am having a bad food allergy mom day! Step into my life and my thinking of an allergy parent for a few moments please. I am not going to be talking from the side of anaphylaxis (throat swelling, etc.) we do not have that. We however have a very critical allergy that is a delayed reaction that causes dehydration and shock, and can lead to death very easily. All from a little bit of food.
"It was tough to figure out what was wrong at first, and many of you know the beginning story. However, it was the oral challenges that are and were so tough! You sit in the doctor’s office giving your child the actual food that makes her have reactions. You fill a bottle of what is equivalent to feeling like a toxin. Your stomach hurts, your heart hurts, and you are filled with hope yet are afraid of failure. You wonder if you are doing the right thing, you cannot take it back after it is drank. You get afraid when the child starts acting like they are the littlest bit sleepy. You hold back all of your tears or turn your back when one slips out. As your child is asking for her Daddy, holding her stomach, retching, vomiting, and needing the bathroom time and time again. She is pale, tired, lethargic, sometimes listless or her eyes are rolling in her head. It is scary, it is horrible, vile, nasty, and it’s one of a parent’s worst nightmares. I HATE IT!
"You are told that more than likely your child will grow out of this by 3 years old. You go into the challenge around at almost three years old thinking, ok, this is it! The last one, only to have the food once again fails your child. The next one is at almost 5 years old. Now she understands what is going on. She has anxiety over what is to become. You spend every day helping to be safe from the offending food, and now you are asking her to let the doctor give it to her. You feel like the scum of the earth, and the worst parent ever.
"You go into the doctor’s office armed with pillow pet, blankets, bottled water, propel, straws, oral syringes, games, DVD’s, laptops, etc. The nurses snicker at the amount of items you bring. They have (in our case) never seen an oral challenge result like we are HOPING not to show them! However, we are prepared. We know we will be there all day, we know they will be getting ready to go home and we will just be recovering if all does not go well. I am a wreck inside, and a tough mom on the outside. I want to grab my baby and run to destination unknown, but where ever we do not have to deal with allergies ever again. Soy milk is in, slowly over an hour she drinks it. Within an hour she is already looking tired, and she is over the toys and wants to start curling up with her pillow pet and her blanket. I put a cd in the laptop, she starts asking for Daddy. She starts complaining in the second hour of her tummy hurting. She is anxious, her eyes tell a tale of a scared little girl, who has a feeling she knows what is coming. She falls asleep for a little while, unusual for a kid who has never really napped since she was 18 months old. The rest I just do not want to write. She got sick many many times, the doctor who was watching his first FPIES reaction seemed to get a few tears in his eyes. The nurses started thanking me for bringing everything I did, as I used a straw and oral syringe to keep my girl hydrated and saved her from having IV’s. Daddy picked us up at the end of the day, and we went to Memere’s where she recovered pretty well. We spent the next few weeks getting her bowels right, and the next few months trying to get her whole system straightened out.
"Ok, so you are probably thinking…there has to be a better way! There has to be an easier test, skin prick, atopy patch testing, something. Why are you doing this to your kid you horrible parent? I wish. It’s the research we need, the funding we need to do the research. We do not wish this on anyone, but we need more cases to be recognized and studied. We need answers! Until then this is what we have.
"So, in July, almost two years from the last test, we will try this again. This time it will be at Boston Children’s hospital at the clinic. There will be more FPIES experienced doctors and nurses (We love our allergist here and appreciate him very much! He is very experienced in what he does, and is very smart and thoughtful; we also do not want to put him or his staff through this again!). We will spend the night at a hotel, we will try to keep things as light as possible and take advantage of the good things to do at Boston Children’s. This will also be the first time I allow anyone to put my daughter out. She will have a scope to see why she has acid reflux.
"We will again have my daughter drink this scary drink. She will be even MORE aware of what could happen, and we will be even more skeptical because again we are 3 years past the magical 3 number, when she was “supposed” to outgrow this. Are we closer to “outgrowing” this, or are we going to have to figure out if we ever try to challenge again. When is the last challenge the last challenge?
"You wonder why I am careful with my little girl and what she eats? You wonder why it is important for me to make sure she is included in as much as possible, but in a safe way? Maybe you do not wonder. Maybe you think I minimalize the issue, and maybe reading the above will help you to understand, think twice before moaning and groaning anytime I bring up Leah’s allergies, maybe you will think twice about judging my family for how we take care of our child. On the other hand, maybe now it helps some people to get it a bit more, and the others, thank you. We appreciate all the help we get!
"I have not proof read this. I do not plan on it. It is a rambling of my thoughts this morning, and my way of venting, processing, and just trying to get through this! Thanks again!"
Laurie Ellen French
That's why I'm fine with pushing back challenges. I tell myself (and the world) that I'd like to have a year where we don't max out our insurance deductible, that I'm totally used to living the "FPIES life" and avoiding his triggers...it's our normal and it's not that hard (yeah right), and that I'd like to give him a little more time so that we up his chances of passing the challenge. But the truth is, I don't want to have to face what a challenge fail will mean. First, it will mean that I hurt my precious boy, and he'll be able to understand what's going on this time. His last fail was at 17 months old, when he still didn't really get it. But challenges will happen when he's three (or four), and he's going to understand exactly what's going on, and who did this to him. ME. Mommy. The person who is supposed to protect him and keep him safe drove him to the doctor's office and made him sick. Will he blame me? Will he forgive me? Will he realize how much I love him and how much this hurts me?
The second thing a fail will mean is that our FPIES journey is not over. And I've been clinging to there being an end...I really need that light at the end of the tunnel. It's how I've made it this far. The literature says that most kids outgrow FPIES at the age of three. So when Matthew hit 18 months I did a little dance, because we'd made it halfway...yipee!!!! But then I thought about it again and my party ended. Because "at the age of three" really means "by the age of four." So I put off my halfway celebration another six months, and did a little dance when he turned two. I've been banking on four, and I really need it to be true. I'm tired of taking his food everywhere, of freaking out when he picks up a crumb and puts it in his mouth, of having him not be able to eat the cake at birthday parties. I'm tired of FPIES, and I really want to move on. But not every family gets to move on, and you find that out when your kid fails a challenge. You show up with all this hope, and leave devastated. Please God, let Matthew be one of the lucky ones. Please...
So, that's my Mommy's view from before the challenges even start. One of my FPIES Mommy friends is on the other end of the challenges. Her name is Laurie, and her sweet little daughter failed her food challenge at the age of three AND the age of five. The next food challenge is approaching, two years after the last fail, and Laurie shared her thoughts on what's going through her mind right now, and how she's struggling with holding out hope that their journey will ever end. Her words really touched me, and she kindly gave me permission to share what she wrote. I hope that her words will help the non-FPIES families out there understand what FPIES parents go through. Or that the FPIES families out there who have failed a challenge find that they are not alone in this journey, that others are feeling the same pain that they are.
"I am tired....I am having a bad food allergy mom day! Step into my life and my thinking of an allergy parent for a few moments please. I am not going to be talking from the side of anaphylaxis (throat swelling, etc.) we do not have that. We however have a very critical allergy that is a delayed reaction that causes dehydration and shock, and can lead to death very easily. All from a little bit of food.
"It was tough to figure out what was wrong at first, and many of you know the beginning story. However, it was the oral challenges that are and were so tough! You sit in the doctor’s office giving your child the actual food that makes her have reactions. You fill a bottle of what is equivalent to feeling like a toxin. Your stomach hurts, your heart hurts, and you are filled with hope yet are afraid of failure. You wonder if you are doing the right thing, you cannot take it back after it is drank. You get afraid when the child starts acting like they are the littlest bit sleepy. You hold back all of your tears or turn your back when one slips out. As your child is asking for her Daddy, holding her stomach, retching, vomiting, and needing the bathroom time and time again. She is pale, tired, lethargic, sometimes listless or her eyes are rolling in her head. It is scary, it is horrible, vile, nasty, and it’s one of a parent’s worst nightmares. I HATE IT!
"You are told that more than likely your child will grow out of this by 3 years old. You go into the challenge around at almost three years old thinking, ok, this is it! The last one, only to have the food once again fails your child. The next one is at almost 5 years old. Now she understands what is going on. She has anxiety over what is to become. You spend every day helping to be safe from the offending food, and now you are asking her to let the doctor give it to her. You feel like the scum of the earth, and the worst parent ever.
"You go into the doctor’s office armed with pillow pet, blankets, bottled water, propel, straws, oral syringes, games, DVD’s, laptops, etc. The nurses snicker at the amount of items you bring. They have (in our case) never seen an oral challenge result like we are HOPING not to show them! However, we are prepared. We know we will be there all day, we know they will be getting ready to go home and we will just be recovering if all does not go well. I am a wreck inside, and a tough mom on the outside. I want to grab my baby and run to destination unknown, but where ever we do not have to deal with allergies ever again. Soy milk is in, slowly over an hour she drinks it. Within an hour she is already looking tired, and she is over the toys and wants to start curling up with her pillow pet and her blanket. I put a cd in the laptop, she starts asking for Daddy. She starts complaining in the second hour of her tummy hurting. She is anxious, her eyes tell a tale of a scared little girl, who has a feeling she knows what is coming. She falls asleep for a little while, unusual for a kid who has never really napped since she was 18 months old. The rest I just do not want to write. She got sick many many times, the doctor who was watching his first FPIES reaction seemed to get a few tears in his eyes. The nurses started thanking me for bringing everything I did, as I used a straw and oral syringe to keep my girl hydrated and saved her from having IV’s. Daddy picked us up at the end of the day, and we went to Memere’s where she recovered pretty well. We spent the next few weeks getting her bowels right, and the next few months trying to get her whole system straightened out.
"Ok, so you are probably thinking…there has to be a better way! There has to be an easier test, skin prick, atopy patch testing, something. Why are you doing this to your kid you horrible parent? I wish. It’s the research we need, the funding we need to do the research. We do not wish this on anyone, but we need more cases to be recognized and studied. We need answers! Until then this is what we have.
"So, in July, almost two years from the last test, we will try this again. This time it will be at Boston Children’s hospital at the clinic. There will be more FPIES experienced doctors and nurses (We love our allergist here and appreciate him very much! He is very experienced in what he does, and is very smart and thoughtful; we also do not want to put him or his staff through this again!). We will spend the night at a hotel, we will try to keep things as light as possible and take advantage of the good things to do at Boston Children’s. This will also be the first time I allow anyone to put my daughter out. She will have a scope to see why she has acid reflux.
"We will again have my daughter drink this scary drink. She will be even MORE aware of what could happen, and we will be even more skeptical because again we are 3 years past the magical 3 number, when she was “supposed” to outgrow this. Are we closer to “outgrowing” this, or are we going to have to figure out if we ever try to challenge again. When is the last challenge the last challenge?
"You wonder why I am careful with my little girl and what she eats? You wonder why it is important for me to make sure she is included in as much as possible, but in a safe way? Maybe you do not wonder. Maybe you think I minimalize the issue, and maybe reading the above will help you to understand, think twice before moaning and groaning anytime I bring up Leah’s allergies, maybe you will think twice about judging my family for how we take care of our child. On the other hand, maybe now it helps some people to get it a bit more, and the others, thank you. We appreciate all the help we get!
"I have not proof read this. I do not plan on it. It is a rambling of my thoughts this morning, and my way of venting, processing, and just trying to get through this! Thanks again!"
Laurie Ellen French
