Obsessed With FPIES Research? You're Not Alone...
Realizing Matthew possibly had FPIES was the beginning of a journey unlike any other I had taken. It's hard being the parent of a child with a health issue so little is known about...whether we're talking about FPIES or anything else, it's emotionally and physically exhausting. There were so many questions that a quick (or even detailed) internet search couldn't answer for me. Questions Matthew's doctor couldn't even answer. I quickly became obsessed...I ate, slept, and breathed FPIES.
Even Nick, my husband, wasn't totally buying the FPIES "internet diagnosis". He kept cautioning me to slow down on the FPIES research that was quickly taking over my life, to hold off until we saw a doctor. I listened to him, and backed off. Then Matthew failed his second food, peas. It was the first time Nick had seen Matthew vomiting, dry heaving, and becoming lethargic. All of the sudden it was real to Nick too. There was no denying that something was definitely wrong with Matthew, and that all of his symptoms were perfectly in line with an FPIES diagnosis. My obsessive researching came back full force (with my husband's encouragement, this time)...I didn't feel I could rest until I found every little bit of information out there on what FPIES was and how it was going to affect Matthew's life.
My first obsession was finding a doctor I could trust with Matthew's health. I called around and interviewed doctors until I found one who was knowledgeable enough and comfortable enough with FPIES to perform food challenges in their clinic. Once we had an appointment booked all my energy went into trying to find as much information as I could to guide me in choosing Matthew's next food. I stayed up late at night, reading and rereading journal articles, trying to wrap my head around what I needed to do to keep Matthew healthy. I came up with a pretty long list of questions to take with us to Matthew's first appointment with the Allergist.
One problem was that Matthew's appointment was a month away...and I really felt like he needed to start eating something NOW. He had just started rolling and army crawling everywhere, and the number of calories he burned was increasing daily. We went from having a baby who slept ten hours straight to having a six month old eating through the night on a newborn schedule. Desperate to get food in him we plunged into our first food trial - potatoes. We were terrified...what if he had another reaction? What if we never found a food he could tolerate? I could tell that our fears were increasing everyday we put off trialing food, so I knew that we were making the right decision to start before it became too overwhelming. But this was the health of my precious baby boy...I was so afraid of making him sick again. As each day passed with no reaction, we had to fight getting our hopes up. After five days we were breathing easier - he had always reacted on day five before. After two weeks we felt like it was a pass, but the real celebration was at the three week mark. We finally had an actual food that Matthew could eat!
When it was time for Matthew's first appointment with the Allergist, I insisted that Nick come too. I needed him 100% on board with what the doctor said, and I didn't want to be put in the position of explaining any information I received at the appointment. I had already done all of the research and shared all the highlights with him. Now Nick needed to be there too, because an FPIES diagnosis would mean that our son has a health condition that we have to tackle as a team for the next three years.
We left the appointment with a confirmed diagnosis of FPIES. Matthew would have to stay away from dairy for at least another year, and because of his rice and pea fails, would have to avoid all grains and legumes for another year and a half. It felt like a ton of bricks had hit me...I mean, I knew it was FPIES way before the appointment, all the symptoms fit. But now I really KNEW he had FPIES, no more maybes. I must have been holding onto the hope that it wasn't really FPIES, somewhere deep down inside. And now there was no denying it - the next three years were going to be very different than we had imagined them. Matthew wouldn't be able to share food with his sister or his friends. We'd have to watch him like a hawk anytime we were away from the house. He probably wouldn't be able to eat cake by his first birthday...the list just went on and on.
I was in a daze, but I held on and held everything in until the next day. It was my first trip to the grocery store since Matthew's diagnosis, and I totally lost it. Every food I passed in the produce section made the question "Will Matthew even be able to eat that?" pop into my head. But I had my kids with me, so I fought back the tears and stayed strong. Then I hit the middle of the store, and had to start looking at labels for things I was buying for myself (I was eliminating Matthew's triggers from my diet). There were so many things I had to put back on the shelf because they contained rice. I finally had to just pull my cart over to the side because I couldn't stop sobbing. If it hadn't been for this sweet little old couple I would have been there for an hour, because I just couldn't stop the tears. They were so cute - they just stopped and started talking to the kids. They gave me the distraction I needed to pull myself back together...and never even asked me what was going on. The wife just patted me on the shoulder as she walked away. Those were the angels God sent me that day to give me the strength to make it through the store. I think I really needed to cry - I needed the release. But I do wish it hadn't happened in such a public place :)
It's been easier since then. I thankfully haven't broken down in the store again. We went on a streak of six food passes and FPIES became part of the background in our lives. We knew it was there, but it didn't consume our thoughts...it's just our way of life. We had two more fails, and that made it more real again, brought FPIES back to the forefront. But we already know more than most doctors do about FPIES, so there's nothing to obsess over anymore.
Looking back it's so weird, there are so many phases to being a FPIES parent. There's the initial "Aha!" moment when you find the name to what's going on with your child. After that is the obsessive phase, where you can't rest until you know everything there is to know about FPIES. Then there's this underlying denial going on even as you're fighting to find a doctor who can help your child. After that comes the shock of the diagnosis...the sadness that comes with mourning the "normal" childhood you had envisioned for your child. Then there's acceptance, when you focus on planning how to keep your child safe. And then you finally move to where I am now, where you just want to help all the other parents out there..to make this easier on them than it was on you. That's why I wrote this, to let all the FPIES parents out there know that the things they are feeling and actions they are taking are totally normal. You love your child, and you'll do anything you can to keep them healthy and safe. If there is anyone in your life telling you that you're crazy...well, listen to me, not them. You are not crazy. You're a good parent, and your child is blessed to have you watching out for them :)
If you're going through this right now, please, take a moment to breathe. I've been there, and I know how impossible it is to stop searching the internet to keep your child safe. If I tried to sleep, a million questions I hadn't searched yet would run through my head, making sleep impossible, because once that mental switch turns on it's impossible to turn it off. But it's hurting you...I was so stressed and low on sleep that my milk supply dropped, which is exactly what I didn't need to happen. I was the only source of nutrition for my sweet baby boy, and now the milk was disappearing...which added even more stress to my life. Please take care of yourself too...you need it and your baby deserves it. The screen you're sitting in front of makes it harder for you to get to sleep. The information you need will be out there when you wake up, just keep a notepad by your bed to write down anything that pops into your head when you're trying to go to sleep. Then you can continue your research when you wake up. There is an end to this...it varies for every FPIES parent, but usually the exhausting research lasts a few weeks...after that you've read every article at least twice, and searched every nook and cranny of the internet. There is no more to learn about FPIES. You move past researching FPIES and begin living with it.
Even Nick, my husband, wasn't totally buying the FPIES "internet diagnosis". He kept cautioning me to slow down on the FPIES research that was quickly taking over my life, to hold off until we saw a doctor. I listened to him, and backed off. Then Matthew failed his second food, peas. It was the first time Nick had seen Matthew vomiting, dry heaving, and becoming lethargic. All of the sudden it was real to Nick too. There was no denying that something was definitely wrong with Matthew, and that all of his symptoms were perfectly in line with an FPIES diagnosis. My obsessive researching came back full force (with my husband's encouragement, this time)...I didn't feel I could rest until I found every little bit of information out there on what FPIES was and how it was going to affect Matthew's life.
My first obsession was finding a doctor I could trust with Matthew's health. I called around and interviewed doctors until I found one who was knowledgeable enough and comfortable enough with FPIES to perform food challenges in their clinic. Once we had an appointment booked all my energy went into trying to find as much information as I could to guide me in choosing Matthew's next food. I stayed up late at night, reading and rereading journal articles, trying to wrap my head around what I needed to do to keep Matthew healthy. I came up with a pretty long list of questions to take with us to Matthew's first appointment with the Allergist.
One problem was that Matthew's appointment was a month away...and I really felt like he needed to start eating something NOW. He had just started rolling and army crawling everywhere, and the number of calories he burned was increasing daily. We went from having a baby who slept ten hours straight to having a six month old eating through the night on a newborn schedule. Desperate to get food in him we plunged into our first food trial - potatoes. We were terrified...what if he had another reaction? What if we never found a food he could tolerate? I could tell that our fears were increasing everyday we put off trialing food, so I knew that we were making the right decision to start before it became too overwhelming. But this was the health of my precious baby boy...I was so afraid of making him sick again. As each day passed with no reaction, we had to fight getting our hopes up. After five days we were breathing easier - he had always reacted on day five before. After two weeks we felt like it was a pass, but the real celebration was at the three week mark. We finally had an actual food that Matthew could eat!
When it was time for Matthew's first appointment with the Allergist, I insisted that Nick come too. I needed him 100% on board with what the doctor said, and I didn't want to be put in the position of explaining any information I received at the appointment. I had already done all of the research and shared all the highlights with him. Now Nick needed to be there too, because an FPIES diagnosis would mean that our son has a health condition that we have to tackle as a team for the next three years.
We left the appointment with a confirmed diagnosis of FPIES. Matthew would have to stay away from dairy for at least another year, and because of his rice and pea fails, would have to avoid all grains and legumes for another year and a half. It felt like a ton of bricks had hit me...I mean, I knew it was FPIES way before the appointment, all the symptoms fit. But now I really KNEW he had FPIES, no more maybes. I must have been holding onto the hope that it wasn't really FPIES, somewhere deep down inside. And now there was no denying it - the next three years were going to be very different than we had imagined them. Matthew wouldn't be able to share food with his sister or his friends. We'd have to watch him like a hawk anytime we were away from the house. He probably wouldn't be able to eat cake by his first birthday...the list just went on and on.
I was in a daze, but I held on and held everything in until the next day. It was my first trip to the grocery store since Matthew's diagnosis, and I totally lost it. Every food I passed in the produce section made the question "Will Matthew even be able to eat that?" pop into my head. But I had my kids with me, so I fought back the tears and stayed strong. Then I hit the middle of the store, and had to start looking at labels for things I was buying for myself (I was eliminating Matthew's triggers from my diet). There were so many things I had to put back on the shelf because they contained rice. I finally had to just pull my cart over to the side because I couldn't stop sobbing. If it hadn't been for this sweet little old couple I would have been there for an hour, because I just couldn't stop the tears. They were so cute - they just stopped and started talking to the kids. They gave me the distraction I needed to pull myself back together...and never even asked me what was going on. The wife just patted me on the shoulder as she walked away. Those were the angels God sent me that day to give me the strength to make it through the store. I think I really needed to cry - I needed the release. But I do wish it hadn't happened in such a public place :)
It's been easier since then. I thankfully haven't broken down in the store again. We went on a streak of six food passes and FPIES became part of the background in our lives. We knew it was there, but it didn't consume our thoughts...it's just our way of life. We had two more fails, and that made it more real again, brought FPIES back to the forefront. But we already know more than most doctors do about FPIES, so there's nothing to obsess over anymore.
Looking back it's so weird, there are so many phases to being a FPIES parent. There's the initial "Aha!" moment when you find the name to what's going on with your child. After that is the obsessive phase, where you can't rest until you know everything there is to know about FPIES. Then there's this underlying denial going on even as you're fighting to find a doctor who can help your child. After that comes the shock of the diagnosis...the sadness that comes with mourning the "normal" childhood you had envisioned for your child. Then there's acceptance, when you focus on planning how to keep your child safe. And then you finally move to where I am now, where you just want to help all the other parents out there..to make this easier on them than it was on you. That's why I wrote this, to let all the FPIES parents out there know that the things they are feeling and actions they are taking are totally normal. You love your child, and you'll do anything you can to keep them healthy and safe. If there is anyone in your life telling you that you're crazy...well, listen to me, not them. You are not crazy. You're a good parent, and your child is blessed to have you watching out for them :)
If you're going through this right now, please, take a moment to breathe. I've been there, and I know how impossible it is to stop searching the internet to keep your child safe. If I tried to sleep, a million questions I hadn't searched yet would run through my head, making sleep impossible, because once that mental switch turns on it's impossible to turn it off. But it's hurting you...I was so stressed and low on sleep that my milk supply dropped, which is exactly what I didn't need to happen. I was the only source of nutrition for my sweet baby boy, and now the milk was disappearing...which added even more stress to my life. Please take care of yourself too...you need it and your baby deserves it. The screen you're sitting in front of makes it harder for you to get to sleep. The information you need will be out there when you wake up, just keep a notepad by your bed to write down anything that pops into your head when you're trying to go to sleep. Then you can continue your research when you wake up. There is an end to this...it varies for every FPIES parent, but usually the exhausting research lasts a few weeks...after that you've read every article at least twice, and searched every nook and cranny of the internet. There is no more to learn about FPIES. You move past researching FPIES and begin living with it.
