Evan was born in May 2011. His life with FPIES really started on day one at the hospital, but we did not have a diagnosis until I self-diagnosed him at 7 months, and had it confirmed by a doctor at 9 months. He was a tiny baby and always hungry. I nursed him for 13 months, along with supplement from day 1. Already on his first day, he spit up and vomited so much, his clothes and blankets needed changed very frequent. I mentioned to the nurses that it seems more extreme than normal, and was told that he must just be one of those babies with excessive spit-up. He lost 10% of his weight the first three days, despite nursing almost every hour and receiving supplement every few hours. He would drink, vomit, become very sleepy, but only sleep for a short time and be hungry again...
Because he also vomited during the night, we kept him in our room close to our bed the first six months, so I could listen when he was uncomfortable and attend to him right away when he was vomiting. Most nights I jumped out of bed several times, to quickly pick him up, to prevent all the vomit to get in his face. Although I tried to be fast, his eyes, nose and whole face would sometimes be completely covered in vomit, almost blocking his airway. So scary. I often had to change his sleeper, swaddling blanket and all the bedding several times at night. I felt so bad for him, and it was exhausting me.
Evan also had foul-smelling diarrhea with mucous in almost every diaper, had reflux, and often seemed very congested, sometimes breathing very loud. His eczema started on his hands and feet when he was only two weeks old, and we tried numerous different ointments. We switched him to many different formulas and I myself switched to soy, and avoided dairy, and it seemed to be even worse. Also, when we switched to soy-based formula for supplementing, he seemed to have even more reactions. Because he was still gaining weight, he was labeled as ‘thriving’, and no one seemed to believe that something was wrong.
At 6 months, we started him on solids, with oatmeal cereal, and he seemed to do fine, although eczema and diarrhea remained part of his 'normal' state. Two weeks later, we gave him sweet potatoes. Two hours later he started with profuse vomiting that lasted for an hour, over and over again, until it was only dry heaves. He was very lethargic afterwards, looked pale, and felt cold, and it took extra effort to wake him up, and make sure he gets some liquid. Even with his eyes open, he seemed to be out of it. The next day he had diarrhea. Of course now, we would give him the epi-pen and call 911. We decided to try butternut squash 10 days later, when he was 7 months old, and again, he had projectile vomiting 2 hours later, over and over for 45 minutes, and again, was very lethargic and pale, and had watery diarrhea the next day. At this point, we called the pediatrician, and were told to hold off with solids, except maybe try banana. We were told that we might not have pureed his food fine enough. Fortunately, he does fine with bananas, so we continued giving him those along with the oatmeal. He also slowed down with growth, and at 9 months was weighing what he weighed at 6 months. He dropped from being in the 60s% weight for his age group into the single digits.
By then, knowing, something was very wrong, I started researching on the internet with his symptoms, and kept coming across FPIES. The more I read about it, the more I knew for sure, that this is what poor Evan has been dealing with all along, yet those around me still thought I was making up a diagnosis. I was so glad, when I found out that one of the allergists on the national FPIES advisory board, has her office not very far from us, so I promptly called and made an appointment at the Kaneland Allergy Center. When he was 9 months old, we received confirmation that Evan has FPIES. What a relief to have a diagnosis and to find a medical person who knows about FPIES! The patch testing and prickle testing showed strong FPIES and IgE reactions to numerous foods, including peanuts, soy, dairy, potatoes, sweet potatoes, squash, rice, chicken. Hence, from then on, Evan’s journey has been accompanied with epi-pens and an ER-letter. Since I was still nursing, I went on a partial elimination diet, to avoid the foods I knew so far, that Evan was reacting to.
Along with the allergist, we decided to try the hypoallergenic formulas, of which there are three kinds in the US, for supplementing along with continued nursing. He reacted to the first one we tried with vomiting, and stool in the blood, but did fine with the second one! We want to thank our pediatrician group, for helping us get approval from health insurance to provide us with the formula. It required many, many hours on the phone, and even when we’ve ordered the next 3-month shipment, we’ve encountered difficulty and many more hours on the phone and several weeks of delay. Yet, so far, insurance has sent it to us in the end.
Because he also vomited during the night, we kept him in our room close to our bed the first six months, so I could listen when he was uncomfortable and attend to him right away when he was vomiting. Most nights I jumped out of bed several times, to quickly pick him up, to prevent all the vomit to get in his face. Although I tried to be fast, his eyes, nose and whole face would sometimes be completely covered in vomit, almost blocking his airway. So scary. I often had to change his sleeper, swaddling blanket and all the bedding several times at night. I felt so bad for him, and it was exhausting me.
Evan also had foul-smelling diarrhea with mucous in almost every diaper, had reflux, and often seemed very congested, sometimes breathing very loud. His eczema started on his hands and feet when he was only two weeks old, and we tried numerous different ointments. We switched him to many different formulas and I myself switched to soy, and avoided dairy, and it seemed to be even worse. Also, when we switched to soy-based formula for supplementing, he seemed to have even more reactions. Because he was still gaining weight, he was labeled as ‘thriving’, and no one seemed to believe that something was wrong.
At 6 months, we started him on solids, with oatmeal cereal, and he seemed to do fine, although eczema and diarrhea remained part of his 'normal' state. Two weeks later, we gave him sweet potatoes. Two hours later he started with profuse vomiting that lasted for an hour, over and over again, until it was only dry heaves. He was very lethargic afterwards, looked pale, and felt cold, and it took extra effort to wake him up, and make sure he gets some liquid. Even with his eyes open, he seemed to be out of it. The next day he had diarrhea. Of course now, we would give him the epi-pen and call 911. We decided to try butternut squash 10 days later, when he was 7 months old, and again, he had projectile vomiting 2 hours later, over and over for 45 minutes, and again, was very lethargic and pale, and had watery diarrhea the next day. At this point, we called the pediatrician, and were told to hold off with solids, except maybe try banana. We were told that we might not have pureed his food fine enough. Fortunately, he does fine with bananas, so we continued giving him those along with the oatmeal. He also slowed down with growth, and at 9 months was weighing what he weighed at 6 months. He dropped from being in the 60s% weight for his age group into the single digits.
By then, knowing, something was very wrong, I started researching on the internet with his symptoms, and kept coming across FPIES. The more I read about it, the more I knew for sure, that this is what poor Evan has been dealing with all along, yet those around me still thought I was making up a diagnosis. I was so glad, when I found out that one of the allergists on the national FPIES advisory board, has her office not very far from us, so I promptly called and made an appointment at the Kaneland Allergy Center. When he was 9 months old, we received confirmation that Evan has FPIES. What a relief to have a diagnosis and to find a medical person who knows about FPIES! The patch testing and prickle testing showed strong FPIES and IgE reactions to numerous foods, including peanuts, soy, dairy, potatoes, sweet potatoes, squash, rice, chicken. Hence, from then on, Evan’s journey has been accompanied with epi-pens and an ER-letter. Since I was still nursing, I went on a partial elimination diet, to avoid the foods I knew so far, that Evan was reacting to.
Along with the allergist, we decided to try the hypoallergenic formulas, of which there are three kinds in the US, for supplementing along with continued nursing. He reacted to the first one we tried with vomiting, and stool in the blood, but did fine with the second one! We want to thank our pediatrician group, for helping us get approval from health insurance to provide us with the formula. It required many, many hours on the phone, and even when we’ve ordered the next 3-month shipment, we’ve encountered difficulty and many more hours on the phone and several weeks of delay. Yet, so far, insurance has sent it to us in the end.
Some photos of the itchy rash, Evan had for many months, at times even worse than shown in these two photos, and bleeding in many spots on his face, hands, and feet. Unfortunately, these are the only photos I ever took when his skin was reacting.
He reacted with vomiting, diarrhea and itchy rash to all the new foods we tried in the last few months. Some days seem so frustrating, yet we thank the Lord that, despite his many difficult days and nights, he has mostly been a very happy child, almost always with a smile, and loves to move. We are so thankful that at 18 months, he has a list of 10 safe foods, although some days we wish it were more. FPIES has certainly taught me to be more creative in making more variety with few foods, although right now he will often only eat if it is pureed! His main nutrition remains the medical hypoallergenic formula EleCare.
Our biggest concern right now is that he picks up a crumb that is not safe, or touches an object that is not clean or not safe for him and then puts his hands in his mouth, or his brother or anyone else gives him unsafe food or touches him after holding unsafe food. He vomited after swallowing a tiny piece of crayon, after licking off some color from a colored pencil, and after swallowing some cardboard and after nibbling on a maple leaf. He loves putting everything in his mouth, which makes it extra scary! Last month, when we were on the road, he accidently received some cow’s milk, and within 10 minutes he had projectile vomiting and was itching everywhere, and within minutes, was covered in big hives, and was lethargic for almost a day. He continues to have frequent itchy rash, but not as severe as in the past, most likely due to so many things he touches and puts in his mouth. Many nights he still screams loud and sudden, not sure if it is due to stomach pain, itchiness, or having difficulty breathing from being congested, or a normal phase at this age …
Our next big challenge: Flying with him to Switzerland to visit family for Christmas 2012. Now that he is very mobile and does not like to sit still, I always get nervous having him in public places, trying to keep him away from everything he reacts to.
Our older son born in April 2009, often had spit-up, and every 10 to 15 days he had an evening of vomiting, ending up lethargic. With him, we just never received a diagnosis, but now I know, they were likely FPIES reactions. He was almost 3 when he had the last reaction. Although Evan seems to react to many more foods, we are hopeful and praying that he too will one day tolerate most foods.
We are so very grateful to the national FPIES foundation (http://fpiesfoundation.org/) and the international FPIES organization (http://iaffpe.org/) for all their efforts in helping families with FPIES children, and informing others, and for the FPIES support groups online, and to Amanda, for putting together the most informative FPIES reaction summary we have (http://fpies.bofferding.net/fpies-food-survey.html). Most of all, we thank God, for helping us through this path.
-----------------
Update July 11, 2013:
Evan recently turned two. At the end of 2012, we decided we REALLY needed more advice on how to deal with his symptoms, and started seeing a GI doctor from Lurie Children's Hospital in Chicago. In May, Evan was in the hospital for two days for an endoscopy and colonoscopy. The biopsies showed some inflammation in the whole GI tract, but most severe in the mid esophagus, showing signs of GERD and EoE, along with his FPIES and IgE allergies. We were told by the GI, that we need to give him time to heal. When we were getting him off all solids and giving only EleCare Jr (his hypoallergenic amino acid based formula), his rash was clearing up, and his stool was becoming less watery, changing from the dark green to more brown color, smelling less acidy, less 'grainy' and showing less mucous. Then it hit us that he's had diarrhea every day for his first two years of life, with many nights laying in his crib with a bloated, painful tummy! Poor boy!
When we started getting him off all solids two months ago, he started screaming so hard for food, I ended up giving in each time. After consulting the GI, we were glad to hear that we could continue giving him small amounts of his safe foods, with EleCare as his main nutrition. We thought we had 10 foods on his safe list, but when we were adding them back in his diet, he was reacting to oat with his typical diarrhea again and terrible rash! Also some of the other foods, like fennel and sorghum were causing bad rash. Right now we have 4 safe foods we give him at lunch and supper, and sometimes for a snack: Apple, pear, banana, blueberries. We have also started him on enzyme tablets to help him break down the food he eats and drinks, and we finally have a probiotic from Klaire Labs that is not causing bad rash and diarrhea. He is now digesting the solids he eats into much smaller pieces!
With less abdominal pain he is now also sleeping much better. He used to wake up several times at night crying, and now is starting to sleep through most nights! I am still getting used to the change : )
Thankful that he's been growing well most times during his first two years, despite all the internal issues, and rash he's had through this time. So, so very thankful that despite being a rather extreme case with multiple allergies, he is able to drink the EleCare without needing any type of feeding tube. Thankful for friends and family who are praying.
-----------------
Update January 2014:
After a recent check-up, the GI decided it would be too much to put Evan (now 2 1/2 yrs) through a second set of scopes within 6 months, to check on his EoE. Because his chronic symptoms have reduced, he decided we could slowly start trialing foods again, while consulting Evan's dietician and allergist. Evan also had some more patch testing to help us decide which foods not to trial. We only trial 1-2 foods in a month. He since has failed corn, rasberries, and freeze-dried strawberries, but passed kale (his only safe vegetable) and well cooked strawberries! That makes it 6 safe foods now, plus EleCare! We've been trialing proso millet, and he broke out in severe, itchy eczema after New Year's Day, so we stopped for a few days. We will continue trialing millet, since chance is high that the reaction is due to cross-contamination from other food while we were visiting elsewhere. Made some mini-muffins for him with millet flour, and pureed apple, banana, blueberries, EleCare - no other ingredient. He LOVES them, even if they are not very sweet! And it brought me tears of joy to finally bake something for him again. He did not have anything baked for 8 months! And Josiah (4 1/2) loves eating them with him. Still have hope that we soon can add millet to his safe list! After that we hope to find a safe oil and meat for him, and hopefully more vegetables. He reacts with FPIES symptoms and anaphylactic to beef and chicken.
Update August 2014:
With much joy, we've been able to add cooked beets and cooked carrots to Evan's list of safe foods! We now have 3 safe vegetables! We thought he was safe with green grapes, grape seed oil, and small amounts of well cooked strawberries, but he started receiving stomach pain and severe, itchy rash from these : ( He's also been reacting similar to fresh blueberries, even organic, except for those from my parents garden! Makes you wonder what pesticides are used on organic, despite being organic!
Update Dec. 2015:
He ended up reacting to some of the foods we had on his safe list, so we are down to one vegetable that Evan can eat, cooked red beets, which thankfully, he loves eating every day! His favorite way to eat them is cut into small cubes with a little salt, or as a drink (pureed and mixed with his safe fruits, which he calls 'red smoothie').
On Sept 4, Evan had a severe anaphylactic reaction and I had to use the Auvi-Q and bring him to the ER. He either reacted to something environmental or a trace of food he got in contact with at the playground. He had every possible symptom listed on the action plan, and I consider it a miracle that he survived. Hope we never have a night like that again, especially when Rich is oversees and I am home alone with the boys!
Evan used to be fine with pedialyte, but earlier this year, we gave him some twice and both times he immediately broke out in hives and itching, and large red spots in his face. Our guess is that they added some new ingredient.
Our biggest concern right now is that he picks up a crumb that is not safe, or touches an object that is not clean or not safe for him and then puts his hands in his mouth, or his brother or anyone else gives him unsafe food or touches him after holding unsafe food. He vomited after swallowing a tiny piece of crayon, after licking off some color from a colored pencil, and after swallowing some cardboard and after nibbling on a maple leaf. He loves putting everything in his mouth, which makes it extra scary! Last month, when we were on the road, he accidently received some cow’s milk, and within 10 minutes he had projectile vomiting and was itching everywhere, and within minutes, was covered in big hives, and was lethargic for almost a day. He continues to have frequent itchy rash, but not as severe as in the past, most likely due to so many things he touches and puts in his mouth. Many nights he still screams loud and sudden, not sure if it is due to stomach pain, itchiness, or having difficulty breathing from being congested, or a normal phase at this age …
Our next big challenge: Flying with him to Switzerland to visit family for Christmas 2012. Now that he is very mobile and does not like to sit still, I always get nervous having him in public places, trying to keep him away from everything he reacts to.
Our older son born in April 2009, often had spit-up, and every 10 to 15 days he had an evening of vomiting, ending up lethargic. With him, we just never received a diagnosis, but now I know, they were likely FPIES reactions. He was almost 3 when he had the last reaction. Although Evan seems to react to many more foods, we are hopeful and praying that he too will one day tolerate most foods.
We are so very grateful to the national FPIES foundation (http://fpiesfoundation.org/) and the international FPIES organization (http://iaffpe.org/) for all their efforts in helping families with FPIES children, and informing others, and for the FPIES support groups online, and to Amanda, for putting together the most informative FPIES reaction summary we have (http://fpies.bofferding.net/fpies-food-survey.html). Most of all, we thank God, for helping us through this path.
-----------------
Update July 11, 2013:
Evan recently turned two. At the end of 2012, we decided we REALLY needed more advice on how to deal with his symptoms, and started seeing a GI doctor from Lurie Children's Hospital in Chicago. In May, Evan was in the hospital for two days for an endoscopy and colonoscopy. The biopsies showed some inflammation in the whole GI tract, but most severe in the mid esophagus, showing signs of GERD and EoE, along with his FPIES and IgE allergies. We were told by the GI, that we need to give him time to heal. When we were getting him off all solids and giving only EleCare Jr (his hypoallergenic amino acid based formula), his rash was clearing up, and his stool was becoming less watery, changing from the dark green to more brown color, smelling less acidy, less 'grainy' and showing less mucous. Then it hit us that he's had diarrhea every day for his first two years of life, with many nights laying in his crib with a bloated, painful tummy! Poor boy!
When we started getting him off all solids two months ago, he started screaming so hard for food, I ended up giving in each time. After consulting the GI, we were glad to hear that we could continue giving him small amounts of his safe foods, with EleCare as his main nutrition. We thought we had 10 foods on his safe list, but when we were adding them back in his diet, he was reacting to oat with his typical diarrhea again and terrible rash! Also some of the other foods, like fennel and sorghum were causing bad rash. Right now we have 4 safe foods we give him at lunch and supper, and sometimes for a snack: Apple, pear, banana, blueberries. We have also started him on enzyme tablets to help him break down the food he eats and drinks, and we finally have a probiotic from Klaire Labs that is not causing bad rash and diarrhea. He is now digesting the solids he eats into much smaller pieces!
With less abdominal pain he is now also sleeping much better. He used to wake up several times at night crying, and now is starting to sleep through most nights! I am still getting used to the change : )
Thankful that he's been growing well most times during his first two years, despite all the internal issues, and rash he's had through this time. So, so very thankful that despite being a rather extreme case with multiple allergies, he is able to drink the EleCare without needing any type of feeding tube. Thankful for friends and family who are praying.
-----------------
Update January 2014:
After a recent check-up, the GI decided it would be too much to put Evan (now 2 1/2 yrs) through a second set of scopes within 6 months, to check on his EoE. Because his chronic symptoms have reduced, he decided we could slowly start trialing foods again, while consulting Evan's dietician and allergist. Evan also had some more patch testing to help us decide which foods not to trial. We only trial 1-2 foods in a month. He since has failed corn, rasberries, and freeze-dried strawberries, but passed kale (his only safe vegetable) and well cooked strawberries! That makes it 6 safe foods now, plus EleCare! We've been trialing proso millet, and he broke out in severe, itchy eczema after New Year's Day, so we stopped for a few days. We will continue trialing millet, since chance is high that the reaction is due to cross-contamination from other food while we were visiting elsewhere. Made some mini-muffins for him with millet flour, and pureed apple, banana, blueberries, EleCare - no other ingredient. He LOVES them, even if they are not very sweet! And it brought me tears of joy to finally bake something for him again. He did not have anything baked for 8 months! And Josiah (4 1/2) loves eating them with him. Still have hope that we soon can add millet to his safe list! After that we hope to find a safe oil and meat for him, and hopefully more vegetables. He reacts with FPIES symptoms and anaphylactic to beef and chicken.
Update August 2014:
With much joy, we've been able to add cooked beets and cooked carrots to Evan's list of safe foods! We now have 3 safe vegetables! We thought he was safe with green grapes, grape seed oil, and small amounts of well cooked strawberries, but he started receiving stomach pain and severe, itchy rash from these : ( He's also been reacting similar to fresh blueberries, even organic, except for those from my parents garden! Makes you wonder what pesticides are used on organic, despite being organic!
Update Dec. 2015:
He ended up reacting to some of the foods we had on his safe list, so we are down to one vegetable that Evan can eat, cooked red beets, which thankfully, he loves eating every day! His favorite way to eat them is cut into small cubes with a little salt, or as a drink (pureed and mixed with his safe fruits, which he calls 'red smoothie').
On Sept 4, Evan had a severe anaphylactic reaction and I had to use the Auvi-Q and bring him to the ER. He either reacted to something environmental or a trace of food he got in contact with at the playground. He had every possible symptom listed on the action plan, and I consider it a miracle that he survived. Hope we never have a night like that again, especially when Rich is oversees and I am home alone with the boys!
Evan used to be fine with pedialyte, but earlier this year, we gave him some twice and both times he immediately broke out in hives and itching, and large red spots in his face. Our guess is that they added some new ingredient.