My Boo has FPIES – Food Protein – Induced Enterocolitis Syndrome. My Boo’s name is Gavin and he is just barely 2. His arrival into this world was a scary one. Both him and his mommy were almost lost to us, there were so many wrong things that took place at his birth and have yet been brought to light. Hospital records not being produced etc.. and then produced for the hefty sum of $500. But right now my little cousin has the opportunity to be seen at two hospitals in Colorado that specialize in FPIES. The National Jewish Health and Children’s Hospital of Denver.
Gavin is not the first child to have #FPIES and a lot of doctors don’t even know this syndrome exists. When a child with FPIES comes to them they are usually misdiagnosed.
When I started digging into it this week, yes I am just now starting to dig into it I totally had a complete misunderstanding of what was wrong with my little cousin. As I watched YouTube videos and read other bloggers / parents stories about their children who have FPIES and as a mom myself all I could do was cry.
Gavin’s family has one income, and just like other families whose children have FPIES money to get their children the help they need becomes an added anxiety.
In many ways Gavin is a normal and healthy two year old. He loves to sing, dance, play and will gladly tell you about all of his trucks and jeeps. He has his mom’s big brown eyes to go along with a smile and laugh that brightens up the worst days. Looking at Gavin now, you would never know that he has FPIES (Food Protein Induced Enterocolitis Syndrome)
– Brian Prior Gavin’s Daddy
The following is a shortened version of my Boo’s experience with FPIES. My Boo Gavin was born in April 2011. His FPIES journey started very soon after he arrived into the world. He was a planned home birth but there were complications so delivery took place at the hospital. Minutes after being delivered he was rushed away to the NICU having trouble breathing and swallowing due to hypermagnesemia (over exposure of the magnesium that was given to his mother for eclampsia) .
He weighed in at a healthy size of 8 pounds 10 ounces
The next day his breathing and swallowing were showing improvement but now the doctor told his parents that Gavin had an abnormally high white blood cell count indicating an infection. He ordered blood work and a spinal tap. Having this procedure done on their 2 day old baby was a scary decision to make but they signed the release form. Unfortunately all the testing did not provide satisfying answers and Gavin was placed on two IV antibiotics and monitored for the next 14 days.
Due to the medication Tanzie was being given having a negative effect on Gavin, she was not able to breast feed in the hospital. Various baby formulas were being used in the NICU and when feeding, they were told to offer small amounts and burp often. They noticed it often came back up projectile. Around the same time a very raw blistering diaper rash developed. After multiple attempts with other creams, an adult diaper rash cream was administered with little improvement. Brian and Tanzie were told it was a reaction from the antibiotics he was on.
Gavin was able to make the first venture home from the hospital 17 days after being born. He was exclusively breastfed once home. Changing 10 – 15 diarrhea diapers a day that smelled really bad and were covered in mucous, that never looked “yellow and seedy” like a breast-fed babies should. His parents didn’t think anything of it at the time, but they could tell when he was going poop because he would tense up his body, his little face would turn red and he would make a grunting noise as he pulled his legs up to his chest. Not yet putting the pieces together that his little body was in pain.
At around 3 months old is when they noticed streaks of blood in his diapers. Alarmed as any parents would be they took him in to the pediatrician who referred them to a GI doctor. He took stool samples and told them that most babies experience a milk or soy allergy and to try eliminating those items from Tanzie’s diet to see if there were improvements. After giving that a try, Gavin was still having symptoms and watery mucousy stools with another round of stool testing still showing the traces of blood remaining so the GI again asked mom to remove wheat from her breast-feeding diet to see if it would help, however Tanzie was already off wheat due to Celiac problems. Tanzie remained on this diet with hopes of Gavin improving but he still showed symptoms with many diaper changes and started having problems gaining weight though she was nursing constantly.
Several days before Gavin turned 6 months old as most parents they were eager to introduce solid food to have more in his belly since it was a struggle with the breast-feeding diet not seeming to fill him up and hopefully he would sleep better since he was fussy and would not sleep more than several hours at a time. Brian and Tanzie thought they were being really cautious by choosing organic brown rice cereal with fortified iron and no other ingredients considering all that they were already trying to avoid.
As first time parents they were excited to see baby food all over my Boo’s chubby little face. Gavin loved it. The first time, second, and third times he had eaten it, he took it well and seemed to enjoy it. Then on the fourth ingesting of rice cereal, it happened. Gavin had eaten about 3/4 cup or so of the rice cereal and 2 hours later he begin to violently projectile vomit through his mouth and nose. His little body, barely 6 months old, jerked from the uncontrollable urge to get the food out. After projectile vomiting repeatedly for about 2 hours Brian and Tanzie started getting ready to take him to the ER. They didn’t know what to do but it was looking worse and worse and not letting up so they called the pediatrician office and was routed to an on-call nurse who told them it was probably just a virus no need to go to ER and to go get pedialyte to hydrate him and see the pediatrician the next day. Brian and Tanzie figured they were just over-reacting being first time parents and listened to the nurse by not taking Gavin to the ER when really they should have. Tanzie hated to have Brian leave her alone with Gavin but he quickly ran out to nearest pharmacy to get some pedialyte. They tried to get him to take even a little amount but it just made more come back up with violent force. After another hour of continuous vomiting he started to heave as there was nothing left to throw up and then this yellowish looking substance being vomited, later discovering it was bile. He puked until there was no more. His little limp body laid in his mothers arms and his eyes were rolling back and his breathing was very shallow. They took his temperature but no fever, it was lower than 98.6 and his skin clammy to the touch. It was the scariest thing they had ever seen and they didn’t know if he would wake up. They figured he must be exhausted so they watched him sleep and kept checking his chest to see that he was still breathing not sleeping themselves. There was no urine in his diaper that night and then when he woke, he had a strange diarrhea in his diaper that was greenish yellow in color with weird gummy pod looking substances in the poop. He had bad diarrhea for the next 3 days. He was super irritable and fussy.
They went to see the pediatrician who said it was likely just a common virus or his gut needed time to mature since he was just six months old and to wait and try again in a months time.
About a month later, much to Gavin’s dismay, they once again attempted to feed him organic rice cereal. Gavin obviously hadn’t forgotten what happened because they barely managed to sneak about a 1/4 teaspoon passed his tightly clinched lips and 2 hours later the same reactions of violent projectile vomiting occurred for several hours.
At this point their parental intuitions finally kicked in and this time they were sure something was just not right. So they turned to the internet and searched “rice cereal violent vomiting” where they found a video of a boy with something called FPIES. They watched with tears in their eyes as the toddler experienced a reaction to soy nearly identical to what Gavin had gone through with rice.
Tanzie and Brian went back to the pediatric GI and once in a room explained to the student doctor training that day the experience with the rice and he listened and admitted of never hearing such a thing with rice but took notes and went to tell the GI who later came in room. It’s like he disregarded everything my cousins said. He reverted back to the milk dairy and soy allergies many babies have and accused Tanzie of not being careful of exposure to these and not being strict with her diet. She tried to explain again about what they found on FPIES and this is what they wondered if my Boo had seeking a doctors opinion and he cut her off saying he had 25 years of experience, knowing all about colitis and it had to be milk or wheat. Brian is just like my McDreamy husband their dad’s are twins, they are very mild tempered guys it takes a lot to rile them so for Brian to want to reach across the room and choke this doctor is saying a lot. My poor cousins felt angry and yet lost that he didn’t listen to them and made them feel stupid for even thinking rice could be the culprit. Needless to say my cousins never returned to him.
After more research online for help, Tanzie followed a total elimination diet to try to find what foods were having an effect on him. Since the ingesting of the rice causing severe reactions, it seemed he was reacting more and more through her milk. Quinoa, sweet potatoes, zucchini, and corn along with rice provoked profuse vomiting.They schedule an appointment with Tanzie’s allergist who gave now 10 month old Gavin a skin prick test for the most common allergies and for rice. All came back negative for IgE allergies.
The same day they also went back to the pediatrician in hopes he would listen and believe what they saw happen. He was open to listening to them and even looked up the website right then and there and read up on FPIES! He saw the seriousness immediately got on the phone with another pediatric GI and got my cousins an appointment to get in right away. He commended them for being concerned parents and going with their parental instincts to take action and find answers when they just knew something was not right.
Gavin began in the 95th percentile and quickly started to fall off the charts. He was very pale and had started to have motor skill setbacks. His hemoglobin was low. He was labeled with Failure to Thrive . The new GI doctor listened to my cousins as they explained the challenges with breast feeding and keeping the calories up and finding what Gavin was not really reacting to which appeared to be almost everything Tanzie was eating. His diapers changed but was this really baseline or was her limited diet still causing reactions. Can you imagine how overwhelming as a mother who just wants to feed her baby and the breast milk you think will sustain him was causing him to be sick. The new GI doctor said he had not been aware of a severe rice reaction before and said it would be in their best interest to see this allergy and immunologist doctor he knew. He gave them samples of Elecare Infant and suggested they try to introduce it. That was not really what they wanted to hear, go see another doctor and give him formula again but they were quickly running out of options at this point. So they made an appointment. They reluctantly gave the new doctor the short version of the symptoms Gavin experienced and he immediately said it was a classic FPIES case, without Brian and Tanzie having to first explain to him what FPIES was. Finally Gavin was diagnosed. My cousins finally were relieved, that a doctor believed them and wanted to help.
As the reactions through her breast feeding continued, the doctor explained the importance of getting Gavin on the formula. It was important to get him gaining weight and taking in proper nutrition to help him start to thrive again. The doctor assured Gavin’s parents the formula should be safe for him as it was an amino acid-based elemental formula with broken down proteins. It was a 11 month road of breast feeding with the last 5 months of it being on a total elimination diet and then with much prayer they made the switch to the formula. It took a lot of patience to get him to take to it but ounce by ounce he took to it with great relief to his mom and dad for their efforts because the alternative if he didn’t take to it was placing a G-tube for feedings. They slowly started to see my sweet boo come back to life again. His pale yellowish skin started to perk up, he stopped falling all the time, and started smiling again. He was finally starting to improve and not be in so much pain. They where instructed to hold off on trying to introduce solids to get him gaining weight and thriving again and the doctor assured them he could survive solely on the formula until he could be seen at the hospital to try to trial food. He drinks his Elecare formula every few hours and once over night. This has become my cousins way of life and the only routine they know.
It has been a long awaited journey and now that my Boo has gained some weight and back on the charts again, they are finally ready to begin the journey of solid food introduction. It has not been easy, keeping food away from him, their whole world revolves around keeping this little person that we all love beyond words as safe as they possibly can. Tanzie cleans like a crazy person to make sure there isn’t just one crumb left behind, keeping him entertained while they hurry to eat before he sighs from seeing that he isn’t being offered a share, trying to act normal around others when they fear what just one slip up could cause, avoiding invitations for the fear of what could happen if they looked away and someone gave him something or the day he decides to be curious and pick up something or another child has something left on their hands or face while their playing. My cousins don’t want to deny him the gift of friends or risk turning him to a bubble boy and be labeled as the weird overprotective parents. When it comes to eating they’ve learned to keep him entertained with other activities as the pain was too much to bear every time they would see those big brown eyes starring up at them pointing at their food and then at his mouth and wanting to eat what they ate. He saw them chewing and he mimicked them like he was chewing, it was and is just too much. Now that he is 2 and talking a great deal the challenge has grown even more with trying to explain that soon they will feed him but its just not safe to do it at home right now.
We pray he will do well at the hospital trials and a solid food diet can be opened up to him. He talks a lot and now pretends to eat food saying all the names of foods like chocolate, cookies and broccoli and explaining how yummy and delicious it is. We know that avoidance of food has helped Gavin make many improvements so we see that lively little boy he is today but now the time has finally come to move forward. He’s survived solely on Elecare Jr formula and water for the last year and a half and is happy and thriving. I went to the site for this formula and it is a pretty penny, let’s just say you could probably live off of what it costs. Gavin goes through 25-30 cans a month, if my cousins did not have insurance and that was a fight to get the insurance to pay for the formula, there is no if, thankfully the insurance came through. So the FPIES journey continues as my cousins now pick up to make the trip to Denver for several weeks where Gavin will be seen with doctors and specialists at the age of 2.
I am sure you noticed the Paypal button above, there are so many families dealing with FPIES. Some know what they are dealing with others yet to learn, any help your heart is moved to give would be greatly appreciated they will be driving to the hospital from here in Vegas to Denver and it is a 12-13 hour drive they will be making over 2 days.
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