Plagio . . What? Flashback #1

I said I would do an occasional flashback post to show just hw far Carter has come. Here is Flashback #1.

Plagiocephaly, more commonly known as a flat spot. It’s pronounced: plā-jē-ō-ˈsef-ə-lē. This was Carter’s first encounter with a specialist, but certainly not his last. At his 4 month and 6 month check up, our pediatrician mentioned that he had a flat spot. We were familiar with that, as our oldest had a flat spot too. We fixed it with a little repositioning during sleeping and bottle feeding. The pediatrician suggested that we keep an eye on it and se if we could fix it like we did before. I wasn’t worried about it at all. He’ll grow and his head will change.  We’ve got this under control.

During the time between our 6 and 9 month check ups, 2 things happened; my husband began to notice that Carter’s head shape was getting worse, and I noticed that Carter was always looking to the left. I mean all the time. I did a little research and found torticollis, a condition that occurs with the muscles in the neck. They tighten on one side and cause the head to lean in only one direction. When the neck tries to move in the opposite direction, it can’t because the muscles have started to shrink and cannot stretch out fully. There are various physical therapy exercises you can do to help loosen those muscles and regain full movement.

I went to Carter’s 9 month check up prepared to ask about his head shape and the lack of neck movement. I didn’t even get the chance to voice my concerns. The doctor took one look at his head, felt it and said that the shape of his head was pretty bad. That’s the first time I heard the word Plagiocephaly. I found out that in many cases Torticollis and Plagiocephaly go hand in hand. At the time, I didn’t understand why Carter refused to turn his head. He always stayed in one position whether he was sleeping, eating, in the car, on the floor, anywhere. No matter how I moved him, he always repositioned himself.  Our options were simple: Do nothing and hope that he grows into it, Or see a plastic surgeon who specializes in Plagiocephaly. The specialist is a 4 hour drive from home and Carter would have to wear a “helmet” 23 hours a day for approximately 6 months. My husband and I talked it over, and there really was no choice. We were off to the specialist. We were booked an appointment only 2 weeks later. That was one of the longest two weeks of our lives, up to that point anyway. I wasn’t sure what to expect or how much of the cost our insurance would cover. I had no idea how Carter would adjust to wearing something 23 hours a day either. Summer was quickly approaching and with temperatures reaching over 100 degrees, it sounded more like torture than treatment.

We met with the specialist who said that Carter would benefit greatly from a helmet. This was based on measurements that were taken. The differential of these measurements should be around 6 millimeters, Carter’s was 15.2. We were sent to an office that specializes in these helmets. Carter got a Starband helmet, which is the brand name of the helmet. A scan was taken of his head and that scan was made into a form. The form was used to make his customized helmet. We even got to choose the design that was imprinted on the helmet. We chose a back and white spotted pattern that looked a lot like cow print. It was really cute!! This whole process took almost a month to complete. And then came the big day!!!

We drove the four hours, nervous all the way. The technician, Amy, put the helmet on and we all held our breath. He didn’t even seem to notice!! And he looked pretty cute too! We were told to gradually move up to wearing the helmet all the time. It took 4 days to get to that point, and Carter was AMAZING!!!!! He didn’t have problems sleeping or crawling or maneuvering at all. It was really like h didn’t even know he had it on . . . until we had to take it off. For an hour a day, the helmet was removed so we could wash it and wash him. He would wander around the house looking for it. He was always out of sorts when it was off too. It was like it became a part of him. If he found the helmet, he would drag it around with him and try to put it back on!! He got so used to it being there that he would more readily bump into things because it didn’t hurt.  Once again, this was a problem when it was off. He would keep crawling towards something waiting for the helmet to make contact, except now it was his head that collided into table legs and walls.

Every month we made the journey back to see the technician, take measurements and have any adjustments made. We were told Carter would wear the helmet for 6 months. We were also told to expect a millimeter adjustment every month. The goal was to get his number cut in half. He was a 15, so ideal would be 7.5.  He was down to a 12!! We were so excited!! Long story short, it only took Carter 2 and a half months to get to an 8 millimeter differential. It was on June 29, just a month after his first birthday that Carter graduated from his helmet. We have saved it, along with the form they made of his head. A tribute and keepsake to an amazing little boy! He never complained. He never cried. He took it all in stride. I know it was much harder for us than it was for him. We worried about him being different, but I think it was paving to road to the differences he faces now. It was during this 2 and a half month period that Carter had his first FPIES reaction. The timing couldn’t have been better. Carter had the most beautiful baby doll head, and now we were able to focus all our energy on helping him eat.

I often wondered what led to the Plagiocephaly.  I have slowly been putting the pieces together. Carter was in constant pain as an infant. It was a pain I didn’t understand. It was a pain I could not fix. It was hidden behind the reflux and that happy little smile. Carter kept his body in a curled up fetal position. It was like he was hiding from the pain, trying to crawl away from himself. It is this position that he stayed in and it was the cause of his flat head and the need for the helmet. FPIES has been with us since the beginning, and this was just one more distraction, one more wrong turn, throwing us off in this crazy maze.

Here are his before and after scans. You can see the flat spot on the right back side of his head, In the after scan, it's almost perfectly round!!

Support

After a full weekend away from my boys, I’ve come back home with clearer, more focused eyes and a new perspective on the word “support”.  I thought I understood this word and it’s meaning in my life, but FPIES has brought it to a whole new level. Support for me has taken a total transformation in the last year.  Support is someone telling me that they’ve done some reading and research into FPIES so that they have a better understanding of it.  Support is having someone brainstorm different ways to treat Carter’s cold that don’t involve ingesting medications. Support is the acknowledgement from family and friends that what we are dealing with is real. Support is the understanding that we don’t attach the term “chronic illness” for attention. Someone is someone understanding that there are times where I just want to have a non-FPIES conversation. 

We have been in this maze long enough for our family and friends to see that this is not something we will be free of anytime soon.  They are starting to realize just what the walls of this maze are made of and how impossible it is to break through. They have seen how dark it is in here and how easy it is to get lost. They have seen some of our strongest moments and some of our weakest. And they have shown us the true meaning of support.

I have finally started to share my truths. I used to just mask over our daily struggles. When asked how we were and how Carter was, we were always “Great” “Fine” Happy” “Wonderful”. I figured that most people really didn’t want the truth and I’m not sure I could have been honest with them, because I would have had to be honest with myself. It is support that has helped me see the genuineness in the people surrounding us.  I have realized that in those moments where I felt completely alone; there was always someone with me, supporting me and pulling me through.

 FPIES is a very isolating condition, as is any chronic illness. There are times when going out of the house is too much.  Again, support comes to the rescue with the knowledge of people who will make their homes safe for Carter; who will do their best to understand why it is so scary for us.  People who break through the isolation because the more people who stand in the maze with us, the brighter the light is and the easier to is to see.  I have made some incredible new friendships and have strengthened others along the twists and turns. These are the moments when I realize that with the struggles of FPIES also come the rewards.  So the next time someone asks how we are, I will tell them. The next time someone asks if there is anything they can do to help, there will be something.  And we will walk through this maze together.

Relaxation and Realities

We are getting a weekend away . . . Just me and my husband. The boys will be staying home. I need this, we all need this, that’s what I keep telling myself. I say this as I arrange a list of Safe foods for Carter.  I say this as I write up a care sheet for his meals. I say it as I pack up his medicines, with a huge note of caution not to get them mixed up with the medicine for the Big Boys.  I will continue to say this until I have dropped them off and are too far away to turn the car around and bring Carter with us.  I know he is in good hands, amazing hands.  But there is a very real danger of him having an accidental ingestion and a reaction while we are hours away. 

Another FPIES mom wrote today about the realities of FPIES, the hidden realities that are seldom talked or even thought about.  There is no such thing as relaxation anymore.  It has nothing to do with having children or being busy maintaining the house.  It is impossible to escape this condition.  I do not mean that I obsess over it or try to think about it, but it has forever changed my views on the world around me.  We were out to dinner one night at a favorite family restaurant, a favorite for their soup. My husband loves this soup! It is one of the main reasons we go.  As we were eating, I looked over at the next table to see a little girl sitting in a high chair. She was at least 6 months younger than Carter.  Her mom was giving her tastes and bites of soup. A soup, I realized, that Carter may never get to eat. Those are the moments where my heart breaks for him.  It is the experiences like that, ones that remind me of what he is missing. 

I realize now, how much of live is focused, center and surrounded by food.  How many “Baby’s First” moments involve food? First Fruit. First Veggie. First Holds a Spoon. First Drinks from a Cup. First Birthday.  I am learning to shift the focus away from food.  This hasn’t been an easy process. My father was a chef.  Growing up, life was all about food. Holidays are so much about the food.  Halloween. Thanksgiving. Christmas. They are fast approaching and I am already trying to figure out how we will handle them. It is yet another hurdle that I never imagined. Maybe that is one of the scariest realities. What is out there that I haven’t even thought of yet?

Carter amazes me every day with his warm and sunny personality. He is learning so much about the world around him, adding new words to his vocabulary and finding new ways to interact with his world. How does a little boy who has lived so much of his life in constant pain, greet each day with such hope? There is a smile on his face every morning when I walk in his room. He stands there in his crib, so happy and so full of life.  It seems to me that he was given this personality to help us all cope with the FPIES reality.

I am amazed that his body didn’t just shut down in those early months. I am baffled that he doesn’t fear the doctor or his sippy cup. I am honored that he has put his trust in me and kept it there, even though I am the one who has fed him the foods that made him so sick. He is so strong in ways that far exceed his age.  All I want to do is provide the life he deserves and to try to give back to him for all that he has given me.

Today . . .

Today.  The easiest time to deal with, is now. The future is too scary and the past is full of guilt from all the missed signs.  As I was updating, Carter woke from his nap much earlier than usual and screaming. I walked upstairs and could smell the diaper before I even reached his room. This is never a good sign. His diaper had exploded. It completely covered his back all the way up to his hair line. I can’t say I was surprised. We had a birthday party at our house for Middle Man’s 3^rd birthday and we went to another party Sunday. Every time we encounter a situation where there is unsafe food, we have some sort of minor reaction. He was cranky and showing obvious signs of discomfort this morning, so the diaper was the next predictable step. He seems so much better now and is finally drinking his formula today, after a 24 hour refusal.

So what do I do about food exposure? Keep him home all the time in a bubble? Never let him experience the normal parts of childhood for fear of food? Miss out on so many family memories in case he finds a crumb on the ground? No, I can’t and won’t do that. I have just become hyper vigilant about food. It’s stressful, but it allows Carter to have normal experiences. The broom, vacuum and dust buster have become some of my closet friends.

It does seem that every time we go out and are around food, his sleep is disturbed. I thought that maybe it was an accidental exposure to something. My husband took a lighter approach and thought that maybe the food gave him nightmares. I wonder if food’s as scary for Carter as it is for me . . . 

We can’t stay at home in our bubble forever, especially not with two older boys who want to and should enjoy the world around them.  But we risk another severe FPIES reaction. So we limit dinners out and even eating in front of him. I have lunch while he naps so he doesn’t cry for my food.  We have been lucky so far, but I wonder if the risk is too high.  I need to draw a line in the sand; I’m just not sure where to draw that line.

Soy shows us how Big the Maze really is . . .

Milk was out of the equation, so we tried soy.  I gave him 4 ounces of soy milk at lunch. Then I gave him another 3ounces before his nap at 3 pm. He drank it so well. No problem with the flavor at all. He went right to sleep.  An hour into his nap, he wakes up crying. He’d thrown up. I got him up and put him on the floor so I could change the bed. As I was changing the sheets, I looked down and knew something wasn’t right. His little body was hunched over on all fours and his head was hanging down against the ground. I bent down to pick him up and he had thrown up on the floor.  His body was limp and his eyes were so sad. I remember his eyes most. They are burned into my memory. I looked into his eyes and saw a terrified little boy who knew something was not right. The vomiting continued. Every couple of minutes he threw up. There was no energy in his body. In between vomiting, he just laid against me and cried.

 It was his pain cry, but it was so much worse than I had heard it before.  That’s another part of FPIES that is often forgotten by the medical community. Their bodies are in extreme pain during a reaction. It is not just the outward symptoms, but the pain they feel deep in their intestinal tract. It is a pain we cannot help or fix. It broke me.  I have never felt so helpless. 

As the vomiting progressed, he had completely emptied his stomach contents. He was lethargic. His eyes closed. And I could not get them to open. He would not hold his head up. The only time he moved was to throw up bile and as his eyelids flickered, I saw that his eyes had rolled back in his head. He was officially in shock. 

All this time, I was on the phone trying to get help for my littlest one. I called the advice nurse at the hospital. I was put on hold and waited and waited. I finally got to talk to a nurse who was sympathetic, but told me it was a stomach bug. The whole time I was on the phone, I had a nagging feeling that I needed to hang up the phone and call 911. I knew Carter needed help. After I got off the phone with the nurse, I held him and waited, waited for him to come back. After four hours of vomiting, he slowly came around. He drank 4 ounces of formula and slept. He slept all night and much of the next morning. I know now that his body entered into shock and I should have taken him to the ER to have an IV started to replace the fluids. It was another 24 hours before he had a wet diaper.  He had numerous mucous and blood-filled diapers and a horrible diaper rash that lasted for several weeks. The primary reaction may have only lasted 6 hours, but the secondary issues lasted for over two weeks. That’s when I realized that for the last 11 months, we had been roaming around in this maze with the completely wrong map. Instead of finding a way through his discomfort, we were inadvertently making it worse and getting more lost all the time.

As scary as his reaction was, I also know that many FPIES kids suffer far worse than Carter. I have talked to a mom whose son was in the hospital for several days and required numerous IV bags in rehydrate him. I believe this reaction triggered something in his body. His body went on high alert to all foods. He stopped digesting foods. Everything went through him and came out whole and undigested. He began to loose weight rapidly. At one point he fell off the growth chart all together. I removed all soy from his diet even in trace amounts. I started researching his symptoms and found FPIES. His soy reaction was a classic reaction. And then I met some other amazing moms who have dealt with FPIES and were able to help me start to create a little more of this map. I am forever grateful to them for all their help.

When I removed the soy completely from his diet, his “cold” went away. That’s when things really started to make sense. His refusal to eat squash, green beans and peas were not just stubbornness. They were foods that cause reactions.  Although the cold went away, the diapers continued to get worse. At Carter’s worst, we were at 7 to 8 poop diapers a day. All of them were mucousy diarrhea that instantly burned his skin. We carried several changes of clothes for each of us in the car because most of the time, the poop was so bad it exploded out the top or the sides. Our world was covered in poo.

 We had to remove everything from his diet except the formula to find the cause. We reintroduced each food and waited a week to see if there was a reaction. The biggest blow was gluten. When we had to remove his favorite snack from his diet, veggie straws, we all took it hard.

Carter has undergone extensive allergy testing, all of which came back negative. His diapers have been analyzed, his blood has been studied. All of these have come back negative for any obvious issues. We even had an endoscopy done to rule out Celiac disease, among other things. Every turn has been met with another wall or another dead end. FPIES is not something that doctors readily understand or even accept. We have mapped out much of Carter’s treatment plan on our own. I was fortunate enough to find an allergist who has heard of FPIES and she’s only four hours away. She has been a great help in deciding what foods to trial next and how to go about introducing them. There is so much more left to tell, but at least now we are relatively caught up. I will occasionally post a “Flashback” of other events and encounters in this maze, but now I can start to focus on Today, because with FPIES it’s the only way to survive.

Time for solids . . .

After we got Carter on a formula his body could handle, we introduced rice cereal into his diet with the hopes of keeping more of his formula in his little tummy. We used Gerber’s rice cereal, which is the typical next step for all infants and recommended as the best first food. This is not the case in FPIES children. There are two things that are very wrong with the “logical” next step we took: Rice is a very common trigger in FPIES kids and Gerber is notorious for cross-contamination in their foods.  Of course I knew neither of these things as I gave Carter his first helping of rice cereal. He got incredibly cranky and lethargic.  It didn’t help his vomiting, just made it easier to clean up because it was thicker. It also made him horribly constipated. I assumed the crankiness was from the constipation. The FPIES flag still hadn’t gone off yet, but I knew something was wrong. I told the pediatrician, who seemed a little puzzled, but suggested we switch to oatmeal. At this point I started to do some research and found out about Gerber’s cross contamination issues with their rice cereal. So we switched brands to Happy Baby, which does not have any contamination issues.  I tried their rice cereal and got the same results. At this point, we knew for sure that rice was a no go, so on we went to oatmeal. I used the Happy Baby oatmeal and Carter did great with that.

After the oatmeal success, we started introducing new foods, one at a time, a week apart. He seemed to be doing great with those.  We also started giving him finger foods: crackers, pasta, puffs, teething cookies. It was the normal progression of foods.

 Looking back on it now, he was never thriving, healthy and happy. I had no idea that he could be any different. He was leaps and bounds above what he had been on the other formulas and I thought this was his normal. The whole time he was having minor FPIES reactions, a build up was taking place in his body. Many of the foods we were consuming had trace amounts of soy in them.  These trace amounts gave Carter a constant cold, over 5 months of running nose, cough, sneezing and watery eyes. The cough kept us up at night for so many nights. The runny nose would gag him in his sleep. Many nights, sleeping upright on our chest was the only way any of us got sleep. I was told that he was too young to have seasonal allergies and since his body wasn’t presenting signs of a typical food allergic reaction, there was nothing we could do.  He was even diagnosed at one point with RSV and given inhalers because he was struggling to breath. We thought he had croup because his cough would worsen at night. The nights that his cough worsened, we directly related to what he had eaten during the day.  I was starting to think that maybe we just had a sickly baby.  His system was just sensitive to anything he was exposed. I still hadn’t linked it to foods though.

When we reached about 10 months old, the pediatrician suggested that we try to see if his body could now handle dairy. We were to start with yogurt and see how he did. I was so hopeful that he had outgrown his culprit foods.  Carter was even tested by an allergist and he showed negative to dairy and soy.  We gave him yogurt, and waited. He got cranky. And whiny.  And incredibly constipated. “His body just needs time to adjust. Keep going”. Two weeks later and no bloody diapers, so we tried milk. He drank it like a champ! Within two hours he had a death grip on my leg. He was whining non-stop. There was nothing I could do to console him.  I thought maybe it was teething. We gave him some more and waited. Then the diapers came. Mucousy, runny, bloody. Scary.  Milk was a no go, again. Our oldest son couldn’t tolerate milk until he was 2, so this wasn’t new territory for us.  We could do dairy free.  I still felt like I had control of the situation.

The Beginning of the Maze: Formula Daze

Carter was born in May of 2009. He was born at 35 weeks, which classified him as “near term”.  I was on modified bed rest for over a month due to early contractions. His labor was pretty uneventful. After he was born, we were able to give him hugs and kisses and hold him. His breathing started to get irregular and he was taken back to the nursery and put on oxygen for 3 hours. He was returned to us sometime after midnight. He was beautiful!! He was so small and so perfect. Due to him being early and in conjunction with the fact that my milk takes over a week to come in, Carter was supplemented with formula. The hospital gave him Similac, the regular cow’s milk formula. 

Carter was less than 24 hours old when he projectile vomited for the first time. He woke from a dead sleep and emptied the entire contents of his stomach all over himself and the side of his little hospital crib. It was curdled and not at all digested, although it had been hours since his bottle. I took a deep breath . . . we had seen this before. Our two older boys were both intolerant to milk and ended up on soy formula.  I buzzed for the nurse and asked if they had any soy formula. The hospital didn’t have it readily available in the nursery, so she was off to find the doctor and see if they could get us some. We went home before they were able to get us any soy formula.

I continued giving him the cow’s milk formula in hopes that the nurse was right, and it was just a fluke one time thing. Looking at the situation now, through FPIES eyes, I have learned that there are no flukes. He continued to spit up after every bottle and was put on Zantac for reflux.  He was constantly fussy and always in pain.  I really thought it was the reflux . . . until he had his first bloody diaper. I was sure that the formula switch would fix everything.

He was three weeks old when we switched him to soy formula. And things went from bad to worse. The reflux worsened. He wouldn’t sleep, wouldn’t eat, wouldn’t do anything but scream.  He looked like he was frightened all the time. My husband went to the store late one night to find another bottle style in hopes that he would eat. He ran into a woman in the bottle aisle who recommended the NUK bottles. Thank goodness for those. He was finally eating, but in pain the entire time. Just as I was beginning to wonder whether his body was rejecting the soy formula, we had our next bloody diaper.  He was six weeks old when the pediatrician called to talk about our options.  His recommendation: Alimentum, a hypoallergenic formula where the proteins are broken down.  They are broken down so the body will have nothing to react to, he tells me. He also said that it was really expensive and didn’t taste good, so we might have problems getting him to take it at all. I cried. I cried for the suffering he was enduring, for the stress of the entire formula switching process, for the time it would take to notice a difference.  Our pediatrician said to wait two weeks to see if it helped him.  Then I looked up the price of the formula. Our current soy formula was 15 cents an ounce. The Alimentum would be 26 cents an ounce.  I was nearly double the price! I will never be able to thank my husband enough for his reaction when I told him we had to switch formulas. He didn’t even hesitate. He told me we’d do whatever we had to do to keep Carter healthy and happy.  That has been our motto ever since.

Once we switched Carter to the Alimentum, the difference was evident right away. He started eating better and sleeping better. He was a much happier baby. We were still battling reflux, trying to find the right medicine and the right dose to help him reach real comfort. I didn’t know it at the time, but the reflux was his body having minor reactions to the Alimentum. Again, the FPIES eyes have made it all clear now.

Even though he was doing much better, he was always in pain. There was never a full night of sleep for anyone in those first 6 months. Carter still vomited . . . all the time. There was never a night where I wasn’t awakened to him vomiting in his sleep or coughing and gagging as he threw up in his sleep. There were mornings where I would go into his room and see that he had thrown up in his sleep and never even woke up.  Most nights I just prayed for morning to come.   After every bottle, something always came back up, sometimes it was a mouthful and sometimes it was a full stomach emptying. It became our way of life, several clothes changes for both Carter and me everyday and blankets as burp cloths.  Then our pediatrician suggested trying some rice cereal to help him keep his formula down, and our FPIES road really began.

Here We Go . . .

It has been 6 months since Carter had his first official FPIES reaction to soy milk. On that very real and terrifying day, we have found ourselves deep in the center of a twisting, winding and seemingly never-ending maze. In the beginning we had no light, no map and very little hope. We have done a lot of research and seen a lot of doctors. Carter has undergone countless blood draws, tests and procedures. Our family was shaken to its core and all the things we “knew” no longer seemed to be. But through FPIES and because of it, we have found answers, we have found light and we have drawn our own map. We still don’t know our way out and sometimes we don’t even know where we’re going. But we know we will find a way out and maybe we’ll be able to help some others too.

We have finally found Carter’s baseline. All the offending foods that made him so terribly sick have been removed from his diet. He thrives now. He is no longer surviving as he did for the first year of his life. His weight is stable. His health is great and his mood is amazing. We are in a good place now. But it wasn’t always that way . . . I will update this blog with Carter’s full history and our story up to this point. When I look back on how far we have come, I know we will not be in this maze forever.