I'm a nurse and a mom, but I have felt more like a detective over the past two and a half years. It's as if someone gave me a hundred piece puzzle with several pieces missing. When Henry turned eight months old and we were admitted to the hospital for three weeks, I finally put the edges of the puzzle together. I found out what I had long suspected, he was aspirating all his feeds, that's why he sounded like he had asthma, that's why he was always congested. I found out he had a laryngeal cleft, which later after second opinion proved to be only a groove that did not need surgical repair. Back then I had asked myself and the doctors--"why does a child reflux to the point of aspirating?" No one seemed to address this. I'll try to in a future post. The swallow studies had shown that Henry could in fact swallow liquids, he did not have a dysfunction, he did not have developmental delays, he did not need therapy. He knew how to swallow. Yet for some reason after his initial swallow, some of it would "leak" into his airway. Later at Cincinnati Children's, a FEES study would show he also refluxed and then aspirated those contents. After the ENT scoped his airway, the answer was clear, she had never seen inflammation like this before in any patient. She suspected severe reflux, a PH probe confirmed it. I was faced with the worst decision of my life, to alter my sons body and to protect his airway from the liquids that were coming up his esophagus in such a forceful way that they spilled into his lungs. Every time he drank he was damaging his lungs with liquid and bacteria that did not belong there. He sounded like he was constantly having an asthma attack, night and day I was giving him nebulizer treatments and steroids, just so he could drink, just so he could breath. I was faced with a choice, to surgically wrap his stomach around his esophagus to prevent him from vomiting, burping or refluxing any more. To put a tube in his stomach so I could feed him after the surgery and to allow his throat to heal before his laryngeal cleft repair--which later he never needed. If I didn't do the surgery Henry would continue to live on steroids and breathing treatments, If I did do it I would face what I felt was the worst thing I could do to him, altering his body and having to feed him at home through a tube.
The Doctors we had were kind, intelligent and I respect them and appreciate the care they gave to my son. I know they told me what they thought was the best option for us at the time. There was a piece to the puzzle that was missing at that time, however. That piece would not be found until almost eighteen months later. Henry had FPIES, perhaps a more chronic form, which was missed because we were focused on the laryngeal cleft, which he did not have. This was blamed for his aspiration. But it was severe REFLUX that was ultimately to blame, severe reflux caused by a chronic form of FPIES, with more delayed and not always dramatic reactions to foods that he could not tolerate.
I think if someone had really looked at him, had considered his chronic diarrhea, his failure to thrive, his early diagnosis of milk protein intolerance, they might have consider FPIES. It saddens me to think that at eight months old, I could have started him on a road to recovery, but we suffered for ten more months before we received the FPIES pieces to the puzzle.
Months before I started Henry on the GAPS diet I had been reading the blogs of other mom's with FPIES kiddos and the "intro diet" they had their kids on, in an attempt to "HEAL" their childrens' guts. I beleve that the Lord guided me to these particular mom's, and that GAPS was an answer to many prayers for wisdom to help Henry really heal. Those same mom's came to my aid when I was finally at a place of desperation; supporting me and guiding me on the GAPS introduction diet. They have shown patience with me as I try to let go of my medical mindset "fears" and embrace the reality I see: This diet REALLY WORKS. I cannot imagine traveling this journey without their support. We are strangers united by the bond of love for our children and the hope to find a better way, a way to heal them, not just treat the symptoms.
This is a picture of Henry just eight weeks ago. He had a meckles scan at Children's Hospital to try to rule out the reason for his gastric bleeding. I looked at Henry sleeping and wondered what I was doing wrong. It had been about ten months since I had put him on an elimination diet. The elimination diet had COMPLETELY fixed the aspiration. Henry could finally drink water, and I was amazed. But part of the puzzle was still missing, he STILL wasn't growing. At 30 months old, he had lost two pounds in just a few short weeks, and weighed only 23.3 pounds. At two and half years old he was still wearing size eighteen month clothes that were loose on his thin waist. I felt a sense of urgency as I watched him refusing to eat the foods he loved, I knew he couldn't afford to loose anymore weight.
Henry started the GAPS introduction diet just seven weeks ago. If you want more details visit the website at www.gapsdiet.com. I started making Henry broth from fish, chicken and later added in lamb and beef broth. At first Henry seemed worse, which is the hardest part about doing the introduction diet with your child. Even his respiratory symptoms came back, sounds in his throat that had been gone for months and increased mucous and drainage. As the body is detoxing you will sometimes see these symptoms. I was nervous and so afraid that Henry would loose more weight, but my GAPS mommy entourage encouraged and helped me through. Prior to starting GAPS, Henry looked so thin, his face was drawn and his ribs prominent. My only experience with a high/fat protein diet had been the Atkins diet, which I had tried once for weight loss years ago, of course the opposite of what I intended to accomplish for Henry. Everything I know as a nurse made me afraid to try the diet, afraid that it was not a healthy option for my child. Our American culture has brain washed us with the the food pyramid which is rich with carbohydrates and not just vegetables but breads and whole grains. I have always thought myself healthy because I ate whole grains and read the labels on boxes. Gaps presented a whole new way of thinking, getting rid of all processed foods in ones diet, eliminating all grains and focusing on fats and proteins, foods that are easily digested. I realized that I was not as "healthy" as I thought and that my view of nutrition was just as skewed by our "low fat" brainwashed culture as anyone. GAPS has been a huge change for our entire family, it was hard at first. I can see positive changes in all of my children, who although not diagnosed with FPIES, may have had some chronic forms of food intolerance as well, which I may discuss in a future post .
The most visable change is in Henry. My little Henry, I look at him, and I am just amazed at what GAPS has done for him in such a short amount of time. His face is full, his eyes are bright, he has gained nearly three pounds and now weights 26 lbs. He has never weighed this much, nor ever gained weight this quickly! Even when I was forcing calories through the G-tube he would not gain! He is now fitting into his size 2T clothes that he got for Christmas, and they also fit him length wise, as he has grown in height as well. He had a real cold a few weeks ago, which he gave to me! In the past if Henry ever got congested he would be sick for weeks and weeks, he would wheeze and need breathing treatments and it just seemed like it would take forever for him to recover. He recovered so quickly, and I believe it is because he is actually using the nutrition I'm feeding him, he is the most healthy he has ever been. He is thriving and he just looks amazing.
This is him a few days ago. He is eating so much I can hardly keep up. He loves meat and eggs! He has been sleeping through the night for an entire week, which is nothing short of a miracle. His behavior is so different than before we started GAPS. He is full of energy, life, and he is happy. He is not clingy and crying, he is not in pain. I have seen it first hand, his body is healing. GAPS is not a fad diet and it is not an easy journey, but it is a road to healing. I believe that everyone, no matter how seemingly well, or sick, can benefit from it. I wish we had not been so afraid, and that we had tried it earlier. It is hard at first, but I can tell you, it is so worth it.
Our journey to healing has only just begun. However, the pieces to our puzzle seem complete, and the end result is beautiful.