- I cant come to bed yet. I have to jar up the buffalo broth.
- Did you take a picture of that poop?
- It's Saturday! Time to get dressed so we can all go to the market!
- Which cuts still have skin?
- No actually the Laura Ingalls Wilder cookbook has not been much help because by then they had refined sugar and milled flour. I need to go further back.
And these are only a few. Sometimes things come out of my mouth and I stop and laugh because they sound so bizarre! At least it provides me with some humor!
Monday, February 28, 2011
Sometimes She Falls Down
Over the last 18 months there have been many things that in retrospect look a lot clearer. Is that FPIES? Or is that just life? Or is that being a parent? There are a lot of things that I wish I had done, or not done, or just done differently, but the facts are always the same: I did the best that I can with the information I had. This is the story of life.
As moms we are pretty hard on ourselves, and when we have a chronically ill or special needs child that is only amplified. I wish I had elminated corn from my diet before I stopped breastfeeding. I wish I had started keeping logs of her daily schedule and bizarre symptoms much sooner (I did with the first child, why not this one?). I wish I had started a probiotic first, like the pediatrician suggested. But I can't change those things now.
As we have continued on the path of weaning Elianna off of her prescription formula, I have begun to see changes in her that are remarkable. Normal, perhaps. But things I did not see before now, and did not realize I was missing.
The word autism is one that brings fear to any parent, yet it keeps popping up in connection with FPIES and severe food intolerance. Another FPIES mom whose older child is on the spectrum. Doctors doing current research are connecting immune system dysfunction to autism, dyspraxia, ADHD, extreme food intolerances....These topics are all very controversial and unknown. Like vaccinations.
I never related any of these conditions to Elianna. Until now. Sensory issues, food therapy, swallowing problems due to inability to control gag reflex. Sleeping a particular way, eating a particular way, showing sensitivity to light, temperature, and texture. Extreme volumes of quiet and loud when she speaks or cries. The inability to self-sooth. Never wanting to be put down and needing to sleep as upright as possible. It took her longer to walk, and talk, and sit up, and just about everything. And sometimes she just falls down. She trips, she loses her balance, or she will be standing right next to you and the next thing you know she is laying flat on the floor. She doesn't always get up right away, which has always been a bit puzzling. And this never concerned me, until we recently made changes and began to see a different little girl.
She wakes up laughing. She argues with her sister, and hits when she gets angry. She asks for things, shows preference, and responds to commands with more and more frequency. She has begun to mimic, 'high-five', and give kisses. She has words. In fact, the first time we took her off of the formula she said 6 new words within 24 hours. But most chalked it up to coincidence. To me, her mother, I find it remarkable. She DANCES. She holds a beat, bobs up and down, twirls in circles, and sings all day long. ALL day long. And watching it brings me to tears.
All of this has evolved in about the last three weeks. Perhaps she is growing. Perhaps she is just hitting milestones like she was meant to. Or perhaps she is feeling less inflammation in her little body, and getting nutrients that her brain and body so desperately need. Part of the push to make the brave steps to the bone broths occurred after I read information a couple of months back about the developing toddler. At two years of age is when the developing brain begins its first major pruning of unused-brain-whatevers (I forget exactly). That was enough for me. We were wasting time and I had nothing to lose. So what if she had a reaction? We would be no worse off then we were before, and no farther forward. And instead I have seen remarkable change and success.
As she bobbed and waved her arms today to the CD playing "Father Abraham" I could only smile in awe. Where do we go next? Forward.
As moms we are pretty hard on ourselves, and when we have a chronically ill or special needs child that is only amplified. I wish I had elminated corn from my diet before I stopped breastfeeding. I wish I had started keeping logs of her daily schedule and bizarre symptoms much sooner (I did with the first child, why not this one?). I wish I had started a probiotic first, like the pediatrician suggested. But I can't change those things now.
As we have continued on the path of weaning Elianna off of her prescription formula, I have begun to see changes in her that are remarkable. Normal, perhaps. But things I did not see before now, and did not realize I was missing.
The word autism is one that brings fear to any parent, yet it keeps popping up in connection with FPIES and severe food intolerance. Another FPIES mom whose older child is on the spectrum. Doctors doing current research are connecting immune system dysfunction to autism, dyspraxia, ADHD, extreme food intolerances....These topics are all very controversial and unknown. Like vaccinations.
I never related any of these conditions to Elianna. Until now. Sensory issues, food therapy, swallowing problems due to inability to control gag reflex. Sleeping a particular way, eating a particular way, showing sensitivity to light, temperature, and texture. Extreme volumes of quiet and loud when she speaks or cries. The inability to self-sooth. Never wanting to be put down and needing to sleep as upright as possible. It took her longer to walk, and talk, and sit up, and just about everything. And sometimes she just falls down. She trips, she loses her balance, or she will be standing right next to you and the next thing you know she is laying flat on the floor. She doesn't always get up right away, which has always been a bit puzzling. And this never concerned me, until we recently made changes and began to see a different little girl.
She wakes up laughing. She argues with her sister, and hits when she gets angry. She asks for things, shows preference, and responds to commands with more and more frequency. She has begun to mimic, 'high-five', and give kisses. She has words. In fact, the first time we took her off of the formula she said 6 new words within 24 hours. But most chalked it up to coincidence. To me, her mother, I find it remarkable. She DANCES. She holds a beat, bobs up and down, twirls in circles, and sings all day long. ALL day long. And watching it brings me to tears.
All of this has evolved in about the last three weeks. Perhaps she is growing. Perhaps she is just hitting milestones like she was meant to. Or perhaps she is feeling less inflammation in her little body, and getting nutrients that her brain and body so desperately need. Part of the push to make the brave steps to the bone broths occurred after I read information a couple of months back about the developing toddler. At two years of age is when the developing brain begins its first major pruning of unused-brain-whatevers (I forget exactly). That was enough for me. We were wasting time and I had nothing to lose. So what if she had a reaction? We would be no worse off then we were before, and no farther forward. And instead I have seen remarkable change and success.
As she bobbed and waved her arms today to the CD playing "Father Abraham" I could only smile in awe. Where do we go next? Forward.
The Procedure: Part 3
I had been told the procedure would take about 30 minutes, so as we approached the 40 minute mark I began to get nervous. Our GI walked in, pictures in hand, and eased my apprehension with a "She's fine; she did great." She was in recovery.
He went over the pictures with me and discussed where he took the biopsies from. It would be at least one week before some of the specialty tests would be back with results. I found it truly amazing that with a scope they can examine a person's digestive system from mouth to rear.
The preliminary results showed no scarring or inflammation in the esophagus Everything on the top half, including stomach folds looked normal. THIS was fantastic news! From the other end there were no signs of anything concerning, and confirmation of the FPIES diagnoses. The lymph-nodes in her intestines were swollen and inflamed, showing signs of Ileal-Lymphoid-Nodular Hyperplasia. Before you are overly impressed with my ability to restate this diagnosis, I must explain. The only reason I recognized it was because I had just read about it in the first pages of my GAPS book. The GI continued to explain that there was nothing that could be done, it was confirmation of her diagnosis.
The nurses would come get me to see Elianna. OH NO they wouldn't....I said that I was told after he was done I could go see her, and so he walked me back to her room to double check. He wanted to make sure and follow procedure. I walked into her room and there she lay under close observation from the recovery nurse. She was not even stirring yet. Before going into the procedure I had been told that it would take 10-15 minutes on average before she would wake up. The explanation was that propophyl was administered throughout the procedure and that the anesthesiologist would stay there providing a steady dose throughout. Once the procedure was over, the dosing would stop and Ellie would begin to wake. When I initially entered her room I was not concerned because I thought she had only been there a few minutes.
I walked over to her bed and the nurse said something about her needing to be on oxygen due to her respiratory issues. I stroked her hair and touched her cheek but she didn't stir. The nurse began to question me about what I would be feeding her when she woke. And then it got quiet and we waited. I sat down. The nurse walked back and forth and flipped through her chart, and I began to find that a bit odd. The other toddler had come in for recovery before we went in, and they only checked on her periodically. Our nurse never left the room, and checked her monitors frequently. I began to get a little concerned. What were they not telling me?
Thirty minutes went by, and the nurse adjusted more things. I asked her how long I should expect it to take before she woke, and she said that it depended on how early she got up and if we interrupted nap time and it could sometimes take an hour....I tried not to worry. And then suddenly she walked over and shook her.
That startled me and I was certain it was not the way things were supposed to go. Elianna began to cry and sit up. "Pick her up," the nurse commanded. Elianna cried. "OK, there we go, that is better." The nurse said. "She needed to clear her lungs and now her oxygen levels are better."
WHAT?!
She instructed me to make a bottle and feed her and that as soon as she had eaten we could go. She explained that her oxygen levels had been low. She had to increase the oxygen even more and that there had appeared to be some restriction which was why she was not waking...or something like that. It is all a blur. I felt like I had whiplash.
I fed Elianna a very diluted bottle of broth, of which she ate about 1 ounce. And we were free to go. With her head flopping I gathered up our stuff and headed for the elevator with final instructions to watch her head and neck because she was still a bit groggy. Once in the car she fell back to sleep, and we headed home. And I was exhausted. But she was fine. Thank you Jesus!
He went over the pictures with me and discussed where he took the biopsies from. It would be at least one week before some of the specialty tests would be back with results. I found it truly amazing that with a scope they can examine a person's digestive system from mouth to rear.
The preliminary results showed no scarring or inflammation in the esophagus Everything on the top half, including stomach folds looked normal. THIS was fantastic news! From the other end there were no signs of anything concerning, and confirmation of the FPIES diagnoses. The lymph-nodes in her intestines were swollen and inflamed, showing signs of Ileal-Lymphoid-Nodular Hyperplasia. Before you are overly impressed with my ability to restate this diagnosis, I must explain. The only reason I recognized it was because I had just read about it in the first pages of my GAPS book. The GI continued to explain that there was nothing that could be done, it was confirmation of her diagnosis.
The nurses would come get me to see Elianna. OH NO they wouldn't....I said that I was told after he was done I could go see her, and so he walked me back to her room to double check. He wanted to make sure and follow procedure. I walked into her room and there she lay under close observation from the recovery nurse. She was not even stirring yet. Before going into the procedure I had been told that it would take 10-15 minutes on average before she would wake up. The explanation was that propophyl was administered throughout the procedure and that the anesthesiologist would stay there providing a steady dose throughout. Once the procedure was over, the dosing would stop and Ellie would begin to wake. When I initially entered her room I was not concerned because I thought she had only been there a few minutes.
I walked over to her bed and the nurse said something about her needing to be on oxygen due to her respiratory issues. I stroked her hair and touched her cheek but she didn't stir. The nurse began to question me about what I would be feeding her when she woke. And then it got quiet and we waited. I sat down. The nurse walked back and forth and flipped through her chart, and I began to find that a bit odd. The other toddler had come in for recovery before we went in, and they only checked on her periodically. Our nurse never left the room, and checked her monitors frequently. I began to get a little concerned. What were they not telling me?
Thirty minutes went by, and the nurse adjusted more things. I asked her how long I should expect it to take before she woke, and she said that it depended on how early she got up and if we interrupted nap time and it could sometimes take an hour....I tried not to worry. And then suddenly she walked over and shook her.
That startled me and I was certain it was not the way things were supposed to go. Elianna began to cry and sit up. "Pick her up," the nurse commanded. Elianna cried. "OK, there we go, that is better." The nurse said. "She needed to clear her lungs and now her oxygen levels are better."
WHAT?!
She instructed me to make a bottle and feed her and that as soon as she had eaten we could go. She explained that her oxygen levels had been low. She had to increase the oxygen even more and that there had appeared to be some restriction which was why she was not waking...or something like that. It is all a blur. I felt like I had whiplash.
I fed Elianna a very diluted bottle of broth, of which she ate about 1 ounce. And we were free to go. With her head flopping I gathered up our stuff and headed for the elevator with final instructions to watch her head and neck because she was still a bit groggy. Once in the car she fell back to sleep, and we headed home. And I was exhausted. But she was fine. Thank you Jesus!
The Procedure: Part 2... of 3
As the nurses began to clean up I could sense I was not the only one stressed from the events, and made comment of how we all needed margaritas. They agreed. And off we rolled.
As we came out of the room we passed our GI who was consulting with the recovery nurse. "NO food," I could hear him saying..."NO..no juice. None of the usual. She will be fine." That was reassuring. She had already come into my room and left a cart of orange juice and apple juice and asked it if it was OK to leave or if it would tempt Elianna. I was worried they would feed her before I was able to get back to her room after recovery.
Our GI turned and saw us riding buy and concern crossed his face. I usually show up in his office with poop portfolio in hand and ready to talk facts. I was transparent with my concern and frustration that morning. He quickly followed us into the procedure room and asked me how she was doing, what was new, what is this new broth diet he knows nothing about and how it is it going. In the middle of this I met the anesthesiologist.
"I understand you have some concerns," she began. "But I discussed them with Dr. B and he said it was a reaction that required ingestion and that he did not believe putting the medication right into her blood would cause problems. However we are very prepared if there should be."
I just stared. She continued. And it all went very fast.
"We are going to begin giving her the propophyl and she is going to start going limp. The MINUTE you feel her go limp you MUST turn around and put her down on the gurney PROMPTLY so that we can IMMEDIATELY put the oxygen mask on her."
WHAT THE HECK? How did I sign up for this? And who is this quack job anesthesiologist??
She went limp almost instantly and I scrambled to get up off of the gurney and lay her down.
"And there she goes," she said. And Elianna screamed, rolled and tried to sit up. I started to cry again. And out she went. "We always win in the end...hahahaha," the anesthesiologist continued. I just stood there.
Our GI sat next to her on the bed and said "She will be OK." He handed me 'Bear', and I said "I guess I leave now?" He turned and said something along the lines of "Hey someone show her to the waiting room!" and out I went to wait.
The nurse that showed me to the waiting room informed me that as soon as the GI was done speaking with me I could go back into Elianna's room for her recovery. And I waited. And I updated on facebook to keep myself distracted.
As we came out of the room we passed our GI who was consulting with the recovery nurse. "NO food," I could hear him saying..."NO..no juice. None of the usual. She will be fine." That was reassuring. She had already come into my room and left a cart of orange juice and apple juice and asked it if it was OK to leave or if it would tempt Elianna. I was worried they would feed her before I was able to get back to her room after recovery.
Our GI turned and saw us riding buy and concern crossed his face. I usually show up in his office with poop portfolio in hand and ready to talk facts. I was transparent with my concern and frustration that morning. He quickly followed us into the procedure room and asked me how she was doing, what was new, what is this new broth diet he knows nothing about and how it is it going. In the middle of this I met the anesthesiologist.
"I understand you have some concerns," she began. "But I discussed them with Dr. B and he said it was a reaction that required ingestion and that he did not believe putting the medication right into her blood would cause problems. However we are very prepared if there should be."
I just stared. She continued. And it all went very fast.
"We are going to begin giving her the propophyl and she is going to start going limp. The MINUTE you feel her go limp you MUST turn around and put her down on the gurney PROMPTLY so that we can IMMEDIATELY put the oxygen mask on her."
WHAT THE HECK? How did I sign up for this? And who is this quack job anesthesiologist??
She went limp almost instantly and I scrambled to get up off of the gurney and lay her down.
"And there she goes," she said. And Elianna screamed, rolled and tried to sit up. I started to cry again. And out she went. "We always win in the end...hahahaha," the anesthesiologist continued. I just stood there.
Our GI sat next to her on the bed and said "She will be OK." He handed me 'Bear', and I said "I guess I leave now?" He turned and said something along the lines of "Hey someone show her to the waiting room!" and out I went to wait.
The nurse that showed me to the waiting room informed me that as soon as the GI was done speaking with me I could go back into Elianna's room for her recovery. And I waited. And I updated on facebook to keep myself distracted.
The Procedure: Part 1
Last Tuesday Ellie went in for an upper GI scope and biopsy and a colonoscopy. Due to some very last minute changes in childcare, I headed to the hospital with Ellie by myself. My 5 year old has been put under twice at Sutter Davis Hospital and I was impressed both times with their professionalism and ability to work with children. This time we headed to Sutter Memorial, and a different experience.
I had some difficulty finding the pediatric check in station because it was a regular nurses station in the middle of the hospital floor. The check in staff and nurses that got us situated were very nice and accommodating. As we checked in, Elianna coughed her nasty cough, and so began a round of questioning about whether or not she was sick. I reassured her that she was not ill with a bacterial or viral infection, but that she had respiratory issues as well as allergies I needed to discuss with the anesthesiologist. I was told that she would let our nurse know, and so began the multiple 'blow offs' I would receive.
We waited in a regular hospital room that we shared with another toddler who was having a procedure done by our same, favorite GI. We would be going out of the room, around the corner to the next room for the procedure, and then Ellie would be wheeled back into the spot where she was at for recovery.
From the moment I met our nurse I began requesting a consult with the anesthesiologist, and was reassured that I would get one because that was routine and everyone got one. He listened to my concerns, and listened to Elianna's chest to tell me that the lower portion of her lungs was restricted and concerning, and that he would have the anesthesiologist listen to that as well.
The child life specialist came in and expressed sympathy that I was by myself and provided a bunch of stuff to entertain Ellie. She was a great resource to have. We were off to a good start....for about 45 minutes. The clock ticked, and no one came for us or the little girl next door. She was supposed to be first, and we were supposed to be second. Then they moved her out into the hall, and wheeled a teenage girl into her spot. And the time for Ellie to go into her procedure passed. At least we weren't waiting in the hall. I finally asked the nurse about the delay, and he said that we had been bumped due to an unexpected procedure brought from elsewhere in the hospital. That was fine, but they could have let us know. Especially since Elianna had not eaten for 4 hours at this point when she is used to eating about every hour.
In the meantime I continued to ask for the anesthesiologist, and our nurse said he had spoken with her directly and that she said she was coming to discuss the medication as well as listen to the respiratory issues.
Finally the nurse came in and put Lidocain on the backs of her hands to prepare for the IV. They gave me instructions saying that I would be sitting on the gurney with her, holding her while they put the IV in, and then I would ride with her in my arms into the procedure room and stay with her until she was asleep. Multiple nurses spoke with me about how she would suddenly go limp in my arms and how her eyes would roll back. It was traumatic for some moms but not to worry, it was normal. I tried to brace myself for it.
And I asked for the anesthesiologist again.
The time to put in the IV arrived. We climbed up onto the gurney and the process began. We started with two nurses and myself. Soon they were yelling for someone next door to come and help, and then asked the child life specialist to come and assist. Ellie is a fighter, and this showed through. Nurses dropped things and didn't have things, and it got more and more chaotic. There was blood on her hand and blood on the sheets, and blood on me. And she screamed. Another nurse came in to help. I realized that I was the one holding her body and felt an incredible sense of responsibility. This was not my job! I began to get angry that four of them could not hold one arm, and I began to cry. The child life specialist stroked my shoulder and I tried to go back to that place of 'it is what it is'. They finally got it in and let go to find more tape, but left the flush attached which Elianna promptly began to swing all over the place and grab in an attempt to pull the IV out. Once more it was left up to me to make sure she didn't yank on it, and the child life specialist trying to get the attention of the nurses between clenched teeth. It took them all to find tape? Ten minutes later the IV was in and her arm was taped like a cast. They wanted to make sure that she couldn't pull it out and they would have to start over. So much for limited exposure to adhesives.
I tired to calm her while the child life specialist tried to wipe up the blood. Ellie was no longer mad; she was afraid. And it hurt my heart.
I asked for the anesthesiologist one more time, but was pretty worn down. This time our nurse blew me off, and was clearly uncomfortable. She would talk to me IN the procedure room he said. In retrospect I believe it was because they were behind schedule, but they were no longer winning awards with me for bedside manner or quality of care.
I had some difficulty finding the pediatric check in station because it was a regular nurses station in the middle of the hospital floor. The check in staff and nurses that got us situated were very nice and accommodating. As we checked in, Elianna coughed her nasty cough, and so began a round of questioning about whether or not she was sick. I reassured her that she was not ill with a bacterial or viral infection, but that she had respiratory issues as well as allergies I needed to discuss with the anesthesiologist. I was told that she would let our nurse know, and so began the multiple 'blow offs' I would receive.
We waited in a regular hospital room that we shared with another toddler who was having a procedure done by our same, favorite GI. We would be going out of the room, around the corner to the next room for the procedure, and then Ellie would be wheeled back into the spot where she was at for recovery.
From the moment I met our nurse I began requesting a consult with the anesthesiologist, and was reassured that I would get one because that was routine and everyone got one. He listened to my concerns, and listened to Elianna's chest to tell me that the lower portion of her lungs was restricted and concerning, and that he would have the anesthesiologist listen to that as well.
The child life specialist came in and expressed sympathy that I was by myself and provided a bunch of stuff to entertain Ellie. She was a great resource to have. We were off to a good start....for about 45 minutes. The clock ticked, and no one came for us or the little girl next door. She was supposed to be first, and we were supposed to be second. Then they moved her out into the hall, and wheeled a teenage girl into her spot. And the time for Ellie to go into her procedure passed. At least we weren't waiting in the hall. I finally asked the nurse about the delay, and he said that we had been bumped due to an unexpected procedure brought from elsewhere in the hospital. That was fine, but they could have let us know. Especially since Elianna had not eaten for 4 hours at this point when she is used to eating about every hour.
In the meantime I continued to ask for the anesthesiologist, and our nurse said he had spoken with her directly and that she said she was coming to discuss the medication as well as listen to the respiratory issues.
Finally the nurse came in and put Lidocain on the backs of her hands to prepare for the IV. They gave me instructions saying that I would be sitting on the gurney with her, holding her while they put the IV in, and then I would ride with her in my arms into the procedure room and stay with her until she was asleep. Multiple nurses spoke with me about how she would suddenly go limp in my arms and how her eyes would roll back. It was traumatic for some moms but not to worry, it was normal. I tried to brace myself for it.
And I asked for the anesthesiologist again.
The time to put in the IV arrived. We climbed up onto the gurney and the process began. We started with two nurses and myself. Soon they were yelling for someone next door to come and help, and then asked the child life specialist to come and assist. Ellie is a fighter, and this showed through. Nurses dropped things and didn't have things, and it got more and more chaotic. There was blood on her hand and blood on the sheets, and blood on me. And she screamed. Another nurse came in to help. I realized that I was the one holding her body and felt an incredible sense of responsibility. This was not my job! I began to get angry that four of them could not hold one arm, and I began to cry. The child life specialist stroked my shoulder and I tried to go back to that place of 'it is what it is'. They finally got it in and let go to find more tape, but left the flush attached which Elianna promptly began to swing all over the place and grab in an attempt to pull the IV out. Once more it was left up to me to make sure she didn't yank on it, and the child life specialist trying to get the attention of the nurses between clenched teeth. It took them all to find tape? Ten minutes later the IV was in and her arm was taped like a cast. They wanted to make sure that she couldn't pull it out and they would have to start over. So much for limited exposure to adhesives.
I tired to calm her while the child life specialist tried to wipe up the blood. Ellie was no longer mad; she was afraid. And it hurt my heart.
I asked for the anesthesiologist one more time, but was pretty worn down. This time our nurse blew me off, and was clearly uncomfortable. She would talk to me IN the procedure room he said. In retrospect I believe it was because they were behind schedule, but they were no longer winning awards with me for bedside manner or quality of care.
Anesthesia: Putting Her Under
Before making steps to move forward with Elianna's diet change and deciding not to give her certain foods or treatment, there were some final possibilities that needed to be eliminated. At this point she had never been put under for an upper scope or biopsy. Her continued reflux, and 18 month history of it, concerned me that there was scar tissue or permanent damage in her esophagus. Thoughts of hernia, possible Eosinophillic Esophagitis, and possible sugar intolerance, encouraged me to take the risk in an effort to eliminate these final issues that might complicate her diagnosis of FPIES.
I say risk, because entering the hospital is a risk for an FPIES patient. Most of us are aware of the fact that supposedly sterile hospital environments are actual full of funky bacteria, and poor quality food that lacks nutrition. What the majority of people in the Western world are NOT aware of is the ingredients in medications and adhesives. This includes medical professionals and anesthesiologists. Ingredients in adhesives include corn which has been used to replace latex. Ingredients in medications include corn and soy, just to name a few.
Ellie was to go in for an upper esophogeal scope and biopsy, and a colonoscopy and biopsy. This required her to receive anesthesia, all of which was routine and not a big deal to most. However, the medication that is used to put children under is called propophyl. It is the only anesthesia with an anti-nausea medication added, which is why it is used with children. It helps with the after effects and the efforts to make it less traumatic since the chance of them waking up to a barf bucket is considerably less. The problem with propophyl is that it contains egg ingredients and soy oil.
Elianna has not had egg yet, but she has had soy, and it has resulted in an FPIES reaction (which is the equivalent of anaphylaxis). Most people who have anaphylaxis to a food would tell you that there is no way they would risk being exposed to that food while going into surgery or a procedure that required anesthesia. And the medical community recognizes this risk and would make alternative arrangements. The risk of someone going into anaphylactic shock while being put under anesthesia is not a scenario they like to risk. Unlike traditional anaphylaxis where a person's throat swells shut and they can not breath, Ellie's FPIES is a blood reaction that sends her body into a state of inflammation and shock, and can make her blood pressure irregular.
Many FPIES children have had this procedure done multiple times without problem. But a few have not. And Ellie's added corn intolerance and continued respiratory issues were enough to make me want to vomit. My research and conversations with other FPIES mommies told me there were alternatives to the soy based medications, and that going into things aware should decrease the risk of problems significantly. I took a deep breath, and got on my knees again. Our God is not a God of fear.....but I didn't realize yet that this was the next lesson He was wanting me to learn.
I say risk, because entering the hospital is a risk for an FPIES patient. Most of us are aware of the fact that supposedly sterile hospital environments are actual full of funky bacteria, and poor quality food that lacks nutrition. What the majority of people in the Western world are NOT aware of is the ingredients in medications and adhesives. This includes medical professionals and anesthesiologists. Ingredients in adhesives include corn which has been used to replace latex. Ingredients in medications include corn and soy, just to name a few.
Ellie was to go in for an upper esophogeal scope and biopsy, and a colonoscopy and biopsy. This required her to receive anesthesia, all of which was routine and not a big deal to most. However, the medication that is used to put children under is called propophyl. It is the only anesthesia with an anti-nausea medication added, which is why it is used with children. It helps with the after effects and the efforts to make it less traumatic since the chance of them waking up to a barf bucket is considerably less. The problem with propophyl is that it contains egg ingredients and soy oil.
Elianna has not had egg yet, but she has had soy, and it has resulted in an FPIES reaction (which is the equivalent of anaphylaxis). Most people who have anaphylaxis to a food would tell you that there is no way they would risk being exposed to that food while going into surgery or a procedure that required anesthesia. And the medical community recognizes this risk and would make alternative arrangements. The risk of someone going into anaphylactic shock while being put under anesthesia is not a scenario they like to risk. Unlike traditional anaphylaxis where a person's throat swells shut and they can not breath, Ellie's FPIES is a blood reaction that sends her body into a state of inflammation and shock, and can make her blood pressure irregular.
Many FPIES children have had this procedure done multiple times without problem. But a few have not. And Ellie's added corn intolerance and continued respiratory issues were enough to make me want to vomit. My research and conversations with other FPIES mommies told me there were alternatives to the soy based medications, and that going into things aware should decrease the risk of problems significantly. I took a deep breath, and got on my knees again. Our God is not a God of fear.....but I didn't realize yet that this was the next lesson He was wanting me to learn.
Sunday, February 27, 2011
Ignorance is Bliss
Truly. I really feel as if my life is a testament to this. The things I have learned in the last 18 months have horrified me at times. Things related to food, and health, and what we have on the shelf at the grocery store. I never ever ever ever EVER would have guessed I would be the person I am today, making changes and digesting information that I would have thought crazy 10 years ago. Some of them I was perhaps a little slow on figuring out, so don't laugh if you have known it for 10 years already! And I did not cite my sources here. I figured why bother. If you are interested in making these health changes for your family you will most likely investigate to see if it is true yourself. If you want the resources, let me know. Here are just a few:
* warning: don't read further if you don't want to know!
1. Bone marrow, fats, animal organs, and meat from grass fed, organic animals are very healthy for everyone as our body is designed to process these very easily and obtain almost all of the nutrients we need. Liver? bleck. Bone marrow? bleck. Pig skin? bleck. I am adjusting.
2. There is corn in table salt. They use it to bind the iodine to the salt molecules through a chemical process.
3. Whatever you put on your skin you might as well eat. Your skin is an organ that absorbs and digests the same as your intestines.
4. 'Real science' does not have money; they are fund raising and busy trying to find answers. Popular media and 'science' is funded by those hoping to make you buy something.
5. By eating non-organic meats you are ingesting the antibiotics that those animal ingested.
WHEW! I warned you!
* warning: don't read further if you don't want to know!
1. Bone marrow, fats, animal organs, and meat from grass fed, organic animals are very healthy for everyone as our body is designed to process these very easily and obtain almost all of the nutrients we need. Liver? bleck. Bone marrow? bleck. Pig skin? bleck. I am adjusting.
2. There is corn in table salt. They use it to bind the iodine to the salt molecules through a chemical process.
3. Whatever you put on your skin you might as well eat. Your skin is an organ that absorbs and digests the same as your intestines.
4. 'Real science' does not have money; they are fund raising and busy trying to find answers. Popular media and 'science' is funded by those hoping to make you buy something.
5. By eating non-organic meats you are ingesting the antibiotics that those animal ingested.
WHEW! I warned you!
What Does She Eat??
Like other FPIES moms, I get this question all the time. If she doesn't eat food, then what does she eat? What do you mean she cant have FOOD? Doesn't she have to eat meat or eggs or nuts to get protein?
There is another FPIES mom who has been kind enough to humor my ignorant questions and help me through my 90 degree learning curve since our family has been forever changed by FPIES. This moms is a nutritionist- she does it professionally! And I will be forever grateful for her knowledge. In addition, her son who is a little older than Elianna, has walked a similar path with a severe intolerance to corn. His path and his mamas has been one of many mountains, and has caused much more long term damage, something we have been able to avoid so far with Elianna.
She just completed a blog post about what her son eats, and it answers a lot of questions that I get all of the time as well. Elianna's current diet has been tailored to her specific FPIES, but Sam has had the priviledge of having a mommy that has known the benefits of hemp and coconut long before I even knew they existed.
Please take the time to read this post of hers. It is a very similar situation to Ellie's, and will give more insight for those of you who are looking to make adjustments for your own FPIES child.
There is another FPIES mom who has been kind enough to humor my ignorant questions and help me through my 90 degree learning curve since our family has been forever changed by FPIES. This moms is a nutritionist- she does it professionally! And I will be forever grateful for her knowledge. In addition, her son who is a little older than Elianna, has walked a similar path with a severe intolerance to corn. His path and his mamas has been one of many mountains, and has caused much more long term damage, something we have been able to avoid so far with Elianna.
She just completed a blog post about what her son eats, and it answers a lot of questions that I get all of the time as well. Elianna's current diet has been tailored to her specific FPIES, but Sam has had the priviledge of having a mommy that has known the benefits of hemp and coconut long before I even knew they existed.
Please take the time to read this post of hers. It is a very similar situation to Ellie's, and will give more insight for those of you who are looking to make adjustments for your own FPIES child.
Friday, February 25, 2011
It's Not About You
Some people just don't get it. The amount of phone calls I have had to make looking for soy free and corn free foods has been ridiculous. Some of those people take my questions personal, which I believe is just their way of feeling guilty. The worst thing I have had to research by far has been a probiotic. I have to ask what the probiotic is cultured on, because there could be trace amounts of it. And just like some people (doctors, other moms, anyone I might talk to) think I am crazy when I say that my daughter can have a violent reaction if she licks the corn based adhesive on a cardboard box, some people do not believe that she could react to these trace amounts in a probiotic. I had SUCH HOPE.....this particular business owner was so kind, and even sent me samples of his probiotics to try. Oh well. Without further ado, here is our conversation for your reading pleasure:
Hi there
I was hoping to recommend your probiotic to some other mothers whose children have the same condition as mine (FPIES), but they need to know what your probiotic is cultured on. Can you let me know? Thanks so much!
Nichole Sawatzky
***************
The order number is:
Order number: XXXXXX
Please let me know the process for canceling since I could not find information on it on your website.
Thank you again for you help and quick responses,
Nichole Sawatzky
********************
Thank you again. You have been very helpful, and I completely understand. My daughter's condition is extremely rare; in fact, approximately 200 kids in the US have been diagnosed with it so far. (I cant back this up - only used this number because I saw other moms use it) It is an immune system condition that requires me to monitor every food trace that goes into her mouth or else she can have extreme shock, profuse diarrhea, vomiting, and in the worst cases extreme malnourishment and organ failure. She has even reacted to corn by licking the adhesive on a box. In the rare chance that she DID react to your probiotic I would need to know what it was to so that I could avoid it in the future. Dr. Jyonouchi at the New Jersey School of Medicine has published protocols (OK this I found out more by word of mouth, but I was getting irritated!) warning against using probiotics or prebiotics cultured on known reactors. I simply cant risk it, nor can the other moms.
Thank you once more for all of your help,
Nichole Sawatzky
************************
(business owner)
And there you have it! I have not responded. Should I?
Hi there
I was hoping to recommend your probiotic to some other mothers whose children have the same condition as mine (FPIES), but they need to know what your probiotic is cultured on. Can you let me know? Thanks so much!
Nichole Sawatzky
***************
It is proprietary.
(business owner)
************
Oh, that is most unfortunate! In case of severe anaphylaxis whatever the probiotic is cultured on is extremely important. You are the first company (of about 12) I have contacted who have been unable to answer. I will need to cancel an order I placed last night then, because I intended to confirm that my daughter could take it today. Without knowing it is safe for her I will not be able to administer it.(business owner)
************
The order number is:
Order number: XXXXXX
Please let me know the process for canceling since I could not find information on it on your website.
Thank you again for you help and quick responses,
Nichole Sawatzky
********************
Our probiotic powders are straight cultures. Nothing is added to them. That is why they are of very high potency.
But what they are grown on and how they are manufactured is proprietary.
We have thousands of clients that have tons of allergies and do very well with our probiotics.
Your order is cancelled.
Have a good day.
(business owner)
******************(business owner)
Thank you again. You have been very helpful, and I completely understand. My daughter's condition is extremely rare; in fact, approximately 200 kids in the US have been diagnosed with it so far. (I cant back this up - only used this number because I saw other moms use it) It is an immune system condition that requires me to monitor every food trace that goes into her mouth or else she can have extreme shock, profuse diarrhea, vomiting, and in the worst cases extreme malnourishment and organ failure. She has even reacted to corn by licking the adhesive on a box. In the rare chance that she DID react to your probiotic I would need to know what it was to so that I could avoid it in the future. Dr. Jyonouchi at the New Jersey School of Medicine has published protocols (OK this I found out more by word of mouth, but I was getting irritated!) warning against using probiotics or prebiotics cultured on known reactors. I simply cant risk it, nor can the other moms.
Thank you once more for all of your help,
Nichole Sawatzky
************************
Our probiotic powders are gluten, sugar, yeast, lactose, dairy, soy, color, flavor, casein, preservative, FOS free. Potency is 250 billion cfu's per gram.
Let me know which of the 20 companies you have contacted has such a product.
(business owner)
And there you have it! I have not responded. Should I?
The Adventures of Broth Making Continued
There appears to be some conflicting information on the length of time broth, broth with meat, and soups are good in the fridge. It appears that it should all be good for up to a week, and if you reheat it in the middle of the week it will last even longer!
I have now discovered that the beef broth itself is not a favorite for Elianna due to her sensory issues and the high fat content. Can't say I blame her! It may not have been rancid broth after all. The guessing game is the best part of parenting and FPIES...right?
Storing the broth continues to be a bit of a problem. As you may recall, I had an explosion of Mason jars in my freezers when I attempted to freeze broth in them. I now see on the Mason jar boxes and website that they are NOT freezer safe. I have no idea what makes them different than other jars I freeze in all of the time. And only certain sizes are not freezer safe. Unfortunately it would not be in my best interest to freeze the stock in pint size or smaller jars.
I also attempted to freeze the broth in ziplock bags after the broth was cool to try and avoid leaching. This seemed to be the only option after the jar explosion incident. However, when I thawed and used my first bag, I saw that all of that yummy, healthy, full of nutrients, gelatinous fat stuck to the inside of the bag. Bummer. That sort of defeats the purpose.
I then turned to the idea of pressure canning. That would take a little more time than freezing but would make it shelf stable and I have all of the tools. While investigating this I found two unfortunate facts. First, pressure canning kills some of the nutrients due to the elevated temperature. Second, traditional Ball canning lids that I have been using are lined with a layer of BPA that leaks badly when heated. UGH! And to think I had been canning my own foods to help avoid the plastic lined cans in the grocery store!
All of this has brought me back to square one, and examining the idea of glass or plastic containers. Solution? Not sure yet.
I have now discovered that the beef broth itself is not a favorite for Elianna due to her sensory issues and the high fat content. Can't say I blame her! It may not have been rancid broth after all. The guessing game is the best part of parenting and FPIES...right?
Storing the broth continues to be a bit of a problem. As you may recall, I had an explosion of Mason jars in my freezers when I attempted to freeze broth in them. I now see on the Mason jar boxes and website that they are NOT freezer safe. I have no idea what makes them different than other jars I freeze in all of the time. And only certain sizes are not freezer safe. Unfortunately it would not be in my best interest to freeze the stock in pint size or smaller jars.
I also attempted to freeze the broth in ziplock bags after the broth was cool to try and avoid leaching. This seemed to be the only option after the jar explosion incident. However, when I thawed and used my first bag, I saw that all of that yummy, healthy, full of nutrients, gelatinous fat stuck to the inside of the bag. Bummer. That sort of defeats the purpose.
I then turned to the idea of pressure canning. That would take a little more time than freezing but would make it shelf stable and I have all of the tools. While investigating this I found two unfortunate facts. First, pressure canning kills some of the nutrients due to the elevated temperature. Second, traditional Ball canning lids that I have been using are lined with a layer of BPA that leaks badly when heated. UGH! And to think I had been canning my own foods to help avoid the plastic lined cans in the grocery store!
All of this has brought me back to square one, and examining the idea of glass or plastic containers. Solution? Not sure yet.
Wednesday, February 23, 2011
Friends
FPIES can be a dark and consuming place. In North America we are programmed to trust the professionals, because they have the degree to back it up. In North America there are no answers or protocols for FPIES. This breeds fear and uncertainty. During a very uncertain 18 months, I have been supported and blessed by many other FPIES mamas, many of who you will find featured on the left side of this blog.
In addition, God has provided two mamas who have encouraged me in particularly amazing ways, and have allowed God to use them. This week as I am stepping out to make some decisions for Elianna, they have been truly valuable friends.
I LOVE my friend Julie, who was a college roomie and who was a bridesmaid in my wedding. I love how her knowledge and life experiences have added to mine, and how she is so steadfast in her love for the Lord. She is a gem for sure! After her family of four spent the weekend with my crazy, broth making, 1700's emulating family of four, I was not sure if she would be speaking to me anymore. Instead, she uplifted me with a very sweet blog post. (click here to read)
I have another friend who I have not known for nearly as long. She lives on the other side of the continent, and was first featured in my blog (here). Our friendship began when she followed a prompting to send me some cans of formula, which has begun the path of hope for Elianna. I joke that she is the Nichole on the other coast with the creepy similarities. Six months, and many FPIES conversations and prayers later, we have both been individually led to a lesser known treatment plan for our children. Her story is amazing, and she does a great job putting it into words. You an read all about it (here).
FPIES is scary, frustrating, and often alone. It doesn't have to be.
In addition, God has provided two mamas who have encouraged me in particularly amazing ways, and have allowed God to use them. This week as I am stepping out to make some decisions for Elianna, they have been truly valuable friends.
I LOVE my friend Julie, who was a college roomie and who was a bridesmaid in my wedding. I love how her knowledge and life experiences have added to mine, and how she is so steadfast in her love for the Lord. She is a gem for sure! After her family of four spent the weekend with my crazy, broth making, 1700's emulating family of four, I was not sure if she would be speaking to me anymore. Instead, she uplifted me with a very sweet blog post. (click here to read)
I have another friend who I have not known for nearly as long. She lives on the other side of the continent, and was first featured in my blog (here). Our friendship began when she followed a prompting to send me some cans of formula, which has begun the path of hope for Elianna. I joke that she is the Nichole on the other coast with the creepy similarities. Six months, and many FPIES conversations and prayers later, we have both been individually led to a lesser known treatment plan for our children. Her story is amazing, and she does a great job putting it into words. You an read all about it (here).
FPIES is scary, frustrating, and often alone. It doesn't have to be.
Sunday, February 20, 2011
More In the Lessons of Broth Making
Broth lesson number two:
In the fridge broth stays good for about 5 days up to a week.
Add meat and it is only good for about 2 days. Max. Or it goes rancid.
Enter very smart FPIES baby who screams from 2:15 am until 3:00 am every time she is offered a bottle with beef broth. As a last resort mommy gives a bottle of plain formula, not knowing what to do, to which FPIES baby has coughing and reflux to.
In the morning mommy realizes that she has had the broth in the fridge for 4 days and it smells funky.
VERY thankful that smart FPIES toddler does not eat the rotten broth and get food poisoning.
When does this learning curve end!?!
In the fridge broth stays good for about 5 days up to a week.
Add meat and it is only good for about 2 days. Max. Or it goes rancid.
Enter very smart FPIES baby who screams from 2:15 am until 3:00 am every time she is offered a bottle with beef broth. As a last resort mommy gives a bottle of plain formula, not knowing what to do, to which FPIES baby has coughing and reflux to.
In the morning mommy realizes that she has had the broth in the fridge for 4 days and it smells funky.
VERY thankful that smart FPIES toddler does not eat the rotten broth and get food poisoning.
When does this learning curve end!?!
Thursday, February 17, 2011
Treading Water
As I ran my hand over Elianna's back tonight, and then to the backs of her knees, I gave glory to God for the miracle unfolding - the clearing of her eczema. I have often begged that we would find a cure for it before she was old enough to notice her body covered in the dry patches and learn to be self-conscious of it. We are making progress as we have just barely begun the GAPS Introduction diet. I have been moving slowly in an effort to monitor things closely, but it is time to pick up the pace. The broth and additional meats added are giving her much needed nutrients, but the corn based formula has brought back inflammation, and I am watching her little eyes change and her body begin to puff. Her cough is not going away from her recent virus, and we are having to administer albuterol via nebulizer every night. And she is hungry. Believe it or not, she wants food and she is looking to fill her belly. Perhaps the broth is not filing her up like the heavy, dense formula was. Perhaps her throat and body are feeling better. Or perhaps she has just finally tasted actual FOOD and is liking what she tastes.
I can not take her off of the formula, as it is adding the additional things she needs. I can not move forward with her yet, because I don't have her on a probiotic. The probiotic is critical for healing her intestines and stopping the reactions. But the right one is equally as important. There are an unlimited number of bacteria in one persons intestines, and many are not yet known. We commonly hear them referred to as 'good' or 'bad' flora, but an imbalance of 'good' bacteria can be just as detrimental. Which one is it? How do I know?
I feel the clock ticking again as we stand still. The broth will only sustain her so long, as the formula makes her worse again, and keeps her from entirely healing. She needs more caloric content than the broths are providing, and at this point she is still refusing to actually eat the pureed meats. I can only get so much into her bottle. Tonight I gave her nectarine puree at dinner and she happily lapped it up. She has become quite skilled with her little spoon. But minutes after taking her down from her highchair and putting her in the bath, her daddy called me to make observations. She was lethargic, slow, goofy, and drunk-like. BIZARRE! Only last night had I read about how an intestine overrun with certain flora can be fed with sugar, and then produce a type of alcohol, causing a drunk-like effect. Had it not been for the fact that I was the one reading the book, andDaddy was the one that made the observation, I would have found it too coincidental.
Time. This all takes time. Find meats, research meats, make broths. Get on a set schedule, keep feeding it to her as close to every hour as possible. Homeschool big sister, do household chores, feed the rest of the family, and let's not forget work a 3/4 time teaching position. Time is becoming more and more scarce. As is money. Buffalo meat today was $23.99 per pound.
I find myself observing the next crossroads on her treatment, and more decisions are about to arrive. I am grateful and feel thoroughly blessed for two weeks of success and immense progress. But now we are in a hold pattern, and for Elianna it can only be for a short time. One foot in front of the other. Day by day. Decision by decision. Asking for wisdom, looking for guidance, and not taking for granted any connection or incidence that has been put in my path.
For I know the plans I have for you, says the Lord. To give you a FUTURE, and a HOPE. This is what we hold to for Ellie.
I can not take her off of the formula, as it is adding the additional things she needs. I can not move forward with her yet, because I don't have her on a probiotic. The probiotic is critical for healing her intestines and stopping the reactions. But the right one is equally as important. There are an unlimited number of bacteria in one persons intestines, and many are not yet known. We commonly hear them referred to as 'good' or 'bad' flora, but an imbalance of 'good' bacteria can be just as detrimental. Which one is it? How do I know?
I feel the clock ticking again as we stand still. The broth will only sustain her so long, as the formula makes her worse again, and keeps her from entirely healing. She needs more caloric content than the broths are providing, and at this point she is still refusing to actually eat the pureed meats. I can only get so much into her bottle. Tonight I gave her nectarine puree at dinner and she happily lapped it up. She has become quite skilled with her little spoon. But minutes after taking her down from her highchair and putting her in the bath, her daddy called me to make observations. She was lethargic, slow, goofy, and drunk-like. BIZARRE! Only last night had I read about how an intestine overrun with certain flora can be fed with sugar, and then produce a type of alcohol, causing a drunk-like effect. Had it not been for the fact that I was the one reading the book, and
Time. This all takes time. Find meats, research meats, make broths. Get on a set schedule, keep feeding it to her as close to every hour as possible. Homeschool big sister, do household chores, feed the rest of the family, and let's not forget work a 3/4 time teaching position. Time is becoming more and more scarce. As is money. Buffalo meat today was $23.99 per pound.
I find myself observing the next crossroads on her treatment, and more decisions are about to arrive. I am grateful and feel thoroughly blessed for two weeks of success and immense progress. But now we are in a hold pattern, and for Elianna it can only be for a short time. One foot in front of the other. Day by day. Decision by decision. Asking for wisdom, looking for guidance, and not taking for granted any connection or incidence that has been put in my path.
For I know the plans I have for you, says the Lord. To give you a FUTURE, and a HOPE. This is what we hold to for Ellie.
Wednesday, February 16, 2011
Day >>10<< of *REAL* Food!
Today was day 10 of real food for Ellie. Since I have spent every waking moment on the internet, on the phone, driving to various stores and markets, and in the kitchen cooking, it has gone by extremely fast. This is a good thing because if I had any more time to think about it I would have vomited from anxiety.
Ellie has been doing fantastic on home made, grass fed, corn free and soy free bone broths. There is an amazing healing factor to consuming bone based soups. If you don't believe me, just Google it. The resources are amazing. Bone broths have been used for centuries because of their amazing healing nutrients.
Yesterday we added in pureed lamb and she had a field day. Today I added in pureed salmon, and she began a hunger strike. I only let her go about 4 hours protesting because instructions I (personally via email!!) received from Dr. Natasha Campbell-McBride, doctor of neurology and nutrition, said to feed her bone broth with pureed meats and marrow every hour. Back she went onto lamb for the rest of the day, and she did great. She still is battling a virus which is continually reminding me to be nervous. Occasional fussing, extra napping, stirring and waking in her sleep, all stop me in my tracks and cause me to ask myself 'reaction!??..or just virus???' I think some things will just never change.
This is the farthest thing any doctor here in the U.S. would recommend that you feed to an FPIES child. Meat means high protein content, and FPIES is a violent allergy to food protein. Instead we have fed Elianna fruits which are known to be low in protein (a.k.a. lower in nutritional value) and higher in sugar content. I now speculate that she has 'passed' these fruits because they have fed the bacteria imbalance in her intestines and continued her gut dysbiosis. I will continue to add some formula in to her broth until her stools look more regular, and I can get her onto a regimen of probiotics. These are coming in the mail.
Only 10 days ago I was on my knees begging for direction as I watched Ellie's eyes grow darker and foggier, and her little body show signs of dehydration and lack of nutrition. Her extended belly had become harder and rounder than ever, and her energy was low. She whimpered a lot, and spoke very little of her typical jibberish. Today I was in awe as I ran my hand over her belly to find that her eczema is disappearing where her skin has always been horribly dry and scaley. Her cognitive ability has increased, as she is now talking clear words, engaging in conversation and following directions in ways she has not done in the past. She is initiating play, and expressing normal emotions such as frustration, and preference. She is giving kisses and asking for food. All of this within 8 days. And no one will ever be able to tell me that food allergy and intestinal health does not influence the brain and development, because I have seen it with my own eyes, in my own child.
Ellie has been doing fantastic on home made, grass fed, corn free and soy free bone broths. There is an amazing healing factor to consuming bone based soups. If you don't believe me, just Google it. The resources are amazing. Bone broths have been used for centuries because of their amazing healing nutrients.
Yesterday we added in pureed lamb and she had a field day. Today I added in pureed salmon, and she began a hunger strike. I only let her go about 4 hours protesting because instructions I (personally via email!!) received from Dr. Natasha Campbell-McBride, doctor of neurology and nutrition, said to feed her bone broth with pureed meats and marrow every hour. Back she went onto lamb for the rest of the day, and she did great. She still is battling a virus which is continually reminding me to be nervous. Occasional fussing, extra napping, stirring and waking in her sleep, all stop me in my tracks and cause me to ask myself 'reaction!??..or just virus???' I think some things will just never change.
This is the farthest thing any doctor here in the U.S. would recommend that you feed to an FPIES child. Meat means high protein content, and FPIES is a violent allergy to food protein. Instead we have fed Elianna fruits which are known to be low in protein (a.k.a. lower in nutritional value) and higher in sugar content. I now speculate that she has 'passed' these fruits because they have fed the bacteria imbalance in her intestines and continued her gut dysbiosis. I will continue to add some formula in to her broth until her stools look more regular, and I can get her onto a regimen of probiotics. These are coming in the mail.
Only 10 days ago I was on my knees begging for direction as I watched Ellie's eyes grow darker and foggier, and her little body show signs of dehydration and lack of nutrition. Her extended belly had become harder and rounder than ever, and her energy was low. She whimpered a lot, and spoke very little of her typical jibberish. Today I was in awe as I ran my hand over her belly to find that her eczema is disappearing where her skin has always been horribly dry and scaley. Her cognitive ability has increased, as she is now talking clear words, engaging in conversation and following directions in ways she has not done in the past. She is initiating play, and expressing normal emotions such as frustration, and preference. She is giving kisses and asking for food. All of this within 8 days. And no one will ever be able to tell me that food allergy and intestinal health does not influence the brain and development, because I have seen it with my own eyes, in my own child.
Tuesday, February 15, 2011
To Market, To Market, To Buy a Fat Pig
If you are aware of this little rhyme, the next line is 'home again, home again jiggety jig'. My attempts to find soy and corn free meat for Elianna has not allowed me a single jiggety jig, but instead has me traipsing all over the countryside.
My search has included the Davis Farmers Market, Sacramento Natural Foods Co-op, Nugget Market, Henry's Market, Davis Natural Foods Co-op, and all over the internet, just to name a few! Thankfully the general public is starting to catch up on the fact that soy is really not very good for you, so soy-free meats are getting easier to find. Corn, on the other hand, is a major staple for most meats in the U.S., even if it is pastured.
I have found grass fed, soy free, corn free beef at the Davis Farmer's Market as well as on the shelf at Henry's Market.
I finally found grass fed, soy free, corn free lamb at Trader Joes.
All farm raised fish has been fed soy and/or corn. Only wild fish is soy and corn free, and at this point I have only found pieces in the store and not the 'good' GAPs parts, such as fins, tails, and heads. (Did you know the fish head has the most beneficial fats?)
Chicken. Now this is a WHOLE OTHER STORY. Soy and corn free chicken is virtually impossible to find, and I find this rather annoying and a tad bit comical. Ninety percent of the chicken farmers I spoke with said: "Our chickens are fed soy and corn feed. Virtually all of the chickens in North America are." This comment alone I found very irritating. I appreciate the information, but it would have been nice to hear 'oh I am so sorry. Good luck.' Some of them even looked at me as if I was crazy. Which leads me to my other point.
Chickens are NOT from North America. They are not even from South America. In fact, they are from India and China, and from what anthropologists can tell, that is where they were first domesticated. Corn, on the other hand, is from North America. Those are not just two different countries, or even different continents. Those are two different hemispheres. Need I say more?
This week I finally found someone who owns a chicken farm locally, and who is willing to do special order chickens for me that are corn and soy free. Hooray!
Next up? I am currently looking into buffalo, venison and pork. Any farm raised bird, I'm afraid, is going to be corn fed. This eliminates quail, duck, goose, etc. SO.......to market to market to buy a fat pig! Wish me luck!
My search has included the Davis Farmers Market, Sacramento Natural Foods Co-op, Nugget Market, Henry's Market, Davis Natural Foods Co-op, and all over the internet, just to name a few! Thankfully the general public is starting to catch up on the fact that soy is really not very good for you, so soy-free meats are getting easier to find. Corn, on the other hand, is a major staple for most meats in the U.S., even if it is pastured.
I have found grass fed, soy free, corn free beef at the Davis Farmer's Market as well as on the shelf at Henry's Market.
I finally found grass fed, soy free, corn free lamb at Trader Joes.
All farm raised fish has been fed soy and/or corn. Only wild fish is soy and corn free, and at this point I have only found pieces in the store and not the 'good' GAPs parts, such as fins, tails, and heads. (Did you know the fish head has the most beneficial fats?)
Chicken. Now this is a WHOLE OTHER STORY. Soy and corn free chicken is virtually impossible to find, and I find this rather annoying and a tad bit comical. Ninety percent of the chicken farmers I spoke with said: "Our chickens are fed soy and corn feed. Virtually all of the chickens in North America are." This comment alone I found very irritating. I appreciate the information, but it would have been nice to hear 'oh I am so sorry. Good luck.' Some of them even looked at me as if I was crazy. Which leads me to my other point.
Chickens are NOT from North America. They are not even from South America. In fact, they are from India and China, and from what anthropologists can tell, that is where they were first domesticated. Corn, on the other hand, is from North America. Those are not just two different countries, or even different continents. Those are two different hemispheres. Need I say more?
This week I finally found someone who owns a chicken farm locally, and who is willing to do special order chickens for me that are corn and soy free. Hooray!
Next up? I am currently looking into buffalo, venison and pork. Any farm raised bird, I'm afraid, is going to be corn fed. This eliminates quail, duck, goose, etc. SO.......to market to market to buy a fat pig! Wish me luck!
Ellie Had a Little Lamb!
While cleaning the freezer I was excited to find a few jars of beef broth that looked unbroken. This was great news since we were out of lamb and fish. I very carefully removed three unbroken mason jars of beef broth from my garage freezer, and being careful not to bump them on anything, I placed them in our bathtub to thaw. I was able to save them, so I did not have to make beef broth again right away. My mom was kind enough to make the fish broth for me the first time, and offered to make it again, which helped restock my broths. All I had to remake immediately was the lamb.
I was worried I would over do the beef broth if I did not rotate them enough, so we put her back onto formula and almond milk for two days. In an effort to get caught up.....here is a quick synopsis:
Adding the formula back in confirmed that it has been causing symptoms for Elianna. Her reflux and upper respiratory symptoms returned quickly, and I am now convinced that the corn based formula has caused her body to be in a state of inflammation for her entire little life.
The almond milk has not sustained her, and was causing her to be malnourished. This was a horrible recommendation by the doctors, who in their defense, have nothing other than trial and error to guide them. She needs the calories and additional nutrients that the formula provides while we transition her off and onto the GAPs introduction diet (with modifications).
We went one more round of broths: one day beef, one day lamb, one day fish. The results were fantastic! NO signs of reaction or symptoms. We eliminated the almond milk from her bottle entirely, and today we took a BIG STEP!
I made the lamb bone broth, and then pureed up the meat, bone marrow, fat, and other parts we have come to know as 'icky'. I poured the broth into small mason jars, and then added 2 rounded tablespoons of the lamb meat puree to each jar. Once shook up, it completely dissolved into the broth, making it possible to feed her in her bottle. And today that is what she ate! Correction: she CHOWED!
I was really worried that she would be turned off by the texture and that I would not be able to get it liquefied enough with my regular-joe-blender, but she did not seem to mind, and I think she even liked it! Let's hope the other meats blend up that easily.
To complicate matters and make the guessing game more fun (sarcasm there), she contracted a virus this week, and two nights ago her fever reached 104. Thankfully we have some corn-free compounded acetaminophen and ibuprofen in our cupboards, which brought it down to 100. After two late nights battling fever, the lamb broth with puree and some added formula was her drug of choice today. I feared that the amount she ingested would increase her chance for reaction and we would be in horrible shape by tonight. She drank almost 60 ounces of broth just during the day today, with a nap from 11:30 to 3:45! I was so afraid she would wake up screaming or that it was the start of a reaction, but when she woke up she looked better than she has looked, well...ever! With the bottles and the puree we let her paw at in her highchair at dinner, she ate about 4 teaspoons of lamb puree today.
MY FPIES BABY IS EATING MEAT!
I was worried I would over do the beef broth if I did not rotate them enough, so we put her back onto formula and almond milk for two days. In an effort to get caught up.....here is a quick synopsis:
Adding the formula back in confirmed that it has been causing symptoms for Elianna. Her reflux and upper respiratory symptoms returned quickly, and I am now convinced that the corn based formula has caused her body to be in a state of inflammation for her entire little life.
The almond milk has not sustained her, and was causing her to be malnourished. This was a horrible recommendation by the doctors, who in their defense, have nothing other than trial and error to guide them. She needs the calories and additional nutrients that the formula provides while we transition her off and onto the GAPs introduction diet (with modifications).
We went one more round of broths: one day beef, one day lamb, one day fish. The results were fantastic! NO signs of reaction or symptoms. We eliminated the almond milk from her bottle entirely, and today we took a BIG STEP!
I made the lamb bone broth, and then pureed up the meat, bone marrow, fat, and other parts we have come to know as 'icky'. I poured the broth into small mason jars, and then added 2 rounded tablespoons of the lamb meat puree to each jar. Once shook up, it completely dissolved into the broth, making it possible to feed her in her bottle. And today that is what she ate! Correction: she CHOWED!
I was really worried that she would be turned off by the texture and that I would not be able to get it liquefied enough with my regular-joe-blender, but she did not seem to mind, and I think she even liked it! Let's hope the other meats blend up that easily.
To complicate matters and make the guessing game more fun (sarcasm there), she contracted a virus this week, and two nights ago her fever reached 104. Thankfully we have some corn-free compounded acetaminophen and ibuprofen in our cupboards, which brought it down to 100. After two late nights battling fever, the lamb broth with puree and some added formula was her drug of choice today. I feared that the amount she ingested would increase her chance for reaction and we would be in horrible shape by tonight. She drank almost 60 ounces of broth just during the day today, with a nap from 11:30 to 3:45! I was so afraid she would wake up screaming or that it was the start of a reaction, but when she woke up she looked better than she has looked, well...ever! With the bottles and the puree we let her paw at in her highchair at dinner, she ate about 4 teaspoons of lamb puree today.
MY FPIES BABY IS EATING MEAT!
Friday, February 11, 2011
Bummer
The next morning I woke up and received a science lesson on freezer containers. I gasped out loud as I opened the freezer door to find hours of labor and money down the drain - about 8 Mason jars had exploded in the freezer. I checked the garage chest freezer, and sure enough, they had exploded there as well. I now had SOME fish broth, SOME lamb broth, and NO beef broth. And two freezers to gut and clean. As I picked up a jar from the freezer to begin the process, it shattered and hit the floor, sending glass shards from the hallway to the living room to the dining room. Oooooh my.
Just the night prior I was amazed and the details God pays attention to, and how he orchestrates things for His glory. How this was going to fit in was a bit baffling. I sighed, and began the process of cleaning.
Just the night prior I was amazed and the details God pays attention to, and how he orchestrates things for His glory. How this was going to fit in was a bit baffling. I sighed, and began the process of cleaning.
Wednesday, February 9, 2011
Let's Go Bone Broth, Let's Go!
Day one of beef broth trial went fantastic! She had it in her bottle with her almond milk, as well as separately like soup at the table. The best part? She loves it! No reflux symptoms, no visible FPIES reaction symptoms, and then we just had to wait for the poo to confirm.
Day two of beef broth trial was just as great. Ellie was chugging her bottles and had increased the amount to more than just her formula. I increased the amount of broth in her bottles to one ounce each time. She pooped, and all was fine!
Day three - lamb broth! Ellie at it, but reluctantly. She gave me a look as if to say 'seriously? what is this and where's the beef?' She didn't like it as much. Imagine that! Within 48 hours we went from massive panic because she could eat nothing, to beef broth and lamb broth, and her showing her first sign of not really liking the taste of something. Amazing! That afternoon I gave her another bottle of beef to not overdo the lamb.
Day four - FISH broth. BLECK! Thankfully my mom made this for me, because at this point I am not so sure I could handle fish heads floating around in water. Ellie liked this more than the lamb.
We were making great progress, and I needed to figure out where to go next. Another mom had communicated with the GAPs doc, and I received a little more guidance from what she forwarded to me. Next steps included getting a probiotic, beef liver, and a juicer. And things were looking amazingly good!
**note to the FPIES: Traditional recommendation for FPIES is to allow up to two weeks for the introduction of a new food and see if there is a build reaction. GAPs protocol says that if you rotate through you vary the nutrients and do not allow for the build to occur before the intestines begin the healing process. The food must be packed with nutrition and require no digestion (bone broth), because the intestines require an incredible amount of nutrition to heal and repair. According to Dr. Campbell, without this process (the patient) will react to ALL food (FPIES). At the moment, most North American allergists treat FPIES with aggressive food trials, similar to this process, but without training in nutrition or taking into consideration the digestive abilities of the food introduced. This makes sense since nutrition is not part of medical school in North America. Proof of this would be the separate degree required to be a nutritionist!
Day two of beef broth trial was just as great. Ellie was chugging her bottles and had increased the amount to more than just her formula. I increased the amount of broth in her bottles to one ounce each time. She pooped, and all was fine!
Day three - lamb broth! Ellie at it, but reluctantly. She gave me a look as if to say 'seriously? what is this and where's the beef?' She didn't like it as much. Imagine that! Within 48 hours we went from massive panic because she could eat nothing, to beef broth and lamb broth, and her showing her first sign of not really liking the taste of something. Amazing! That afternoon I gave her another bottle of beef to not overdo the lamb.
Day four - FISH broth. BLECK! Thankfully my mom made this for me, because at this point I am not so sure I could handle fish heads floating around in water. Ellie liked this more than the lamb.
We were making great progress, and I needed to figure out where to go next. Another mom had communicated with the GAPs doc, and I received a little more guidance from what she forwarded to me. Next steps included getting a probiotic, beef liver, and a juicer. And things were looking amazingly good!
**note to the FPIES: Traditional recommendation for FPIES is to allow up to two weeks for the introduction of a new food and see if there is a build reaction. GAPs protocol says that if you rotate through you vary the nutrients and do not allow for the build to occur before the intestines begin the healing process. The food must be packed with nutrition and require no digestion (bone broth), because the intestines require an incredible amount of nutrition to heal and repair. According to Dr. Campbell, without this process (the patient) will react to ALL food (FPIES). At the moment, most North American allergists treat FPIES with aggressive food trials, similar to this process, but without training in nutrition or taking into consideration the digestive abilities of the food introduced. This makes sense since nutrition is not part of medical school in North America. Proof of this would be the separate degree required to be a nutritionist!
Tuesday, February 8, 2011
Farmer's Market
Saturday morning I headed to the Davis Farmer's Market. If you are out of the area and have never been to this particular farmer's market you are missing out. I spent a few hours there quizzing vendors on their wares, and was extremely pleased to find a resource for grass fed beef - NOT finished with grain. I loaded up on bones for stew and headed home to make Ellie her beef broth.
We decided to give her a day to rest and re-coop, because the two scoops of formula in each bottle of almond milk was making a HUGE difference, and she was bounding around the house once again. For whatever the reason, the corn formula had not brought back the reflux or the reaction symptoms (though we had yet to see another poop to be sure).
I was now convinced that part of her problem had been the die off effect of her intestines. I believe that she may have to get worse before she can get better since her intestines are over run with an imbalance of good and bad bacteria. When this is disrupted and bacteria die off, toxins are released into the system and can cause side effects. If this is documented and understood to happen in 'regular' people, it makes sense that it could happen to an extreme for Ellie. My goal is to manage the die off and make it a gradual transition, and going cold turkey to the almond milk was just too much for her little system to take.
Saturday night I loaded the fridge and freezer with home made beef broth, and prayed that I was making the right choice. The nutritionist had wanted us to try lamb, so this could not be too far out there, right? At least beef would be a little bit more affordable than a toddler on a diet of rack of lamb!
We decided to give her a day to rest and re-coop, because the two scoops of formula in each bottle of almond milk was making a HUGE difference, and she was bounding around the house once again. For whatever the reason, the corn formula had not brought back the reflux or the reaction symptoms (though we had yet to see another poop to be sure).
I was now convinced that part of her problem had been the die off effect of her intestines. I believe that she may have to get worse before she can get better since her intestines are over run with an imbalance of good and bad bacteria. When this is disrupted and bacteria die off, toxins are released into the system and can cause side effects. If this is documented and understood to happen in 'regular' people, it makes sense that it could happen to an extreme for Ellie. My goal is to manage the die off and make it a gradual transition, and going cold turkey to the almond milk was just too much for her little system to take.
Saturday night I loaded the fridge and freezer with home made beef broth, and prayed that I was making the right choice. The nutritionist had wanted us to try lamb, so this could not be too far out there, right? At least beef would be a little bit more affordable than a toddler on a diet of rack of lamb!
Might As Well Say FPIES
For those unfamiliar with Dr. Natasha Campbell-McBride, here is a brief excerpt from her book that I believe should be marked as 'for the protein intolerance diagnosed in the United States'.
"People with food allergies and intolerances should go through the Intro Diet in order to heal and seal their gut lining. The reason for allergies and food intolerances is a so-called 'leaky gut' when the gut lining is damaged by abnormal micro flora. Foods do not get the chance to be digested properly before they get absorbed through this damaged wall and cause the immune system to react to them. Many people try to identify which foods they react to. However, with damaged gut wall they are likely to absorb most of their foods partially digested, which may cause an immediate reaction or a delayed reaction (a day, a few days, or even a couple of weeks later). As these reactions overlap with each other, you can never be sure what exactly you are reacting to on any given day. Testing for food allergies is notoriously unreliable: if they had enough resources to test twice a day for two weeks, they would find that they are "allergic" to everything they eat. As long as the gut wall is damaged and stays damaged, you can be juggling your diet forever, removing different foods and never getting anywhere. From my clinical experience, it is best to concentrate on healing the gut wall with the Introduction Diet. Once the gut wall is healed, the foods will be digested properly before being absorbed, which will remove many food intolerances and allergies."
Reference: here
Dr. Campbell-McBride has been in practice with this philosophy of medicine since 1998.
At Ellie's last GI appointment, our fantastic and up-to-date doctor (he really is wonderful) told us there was some 'new' information coming out that speculated that a leaky gut caused additional proteins in to the body that caused reactions such as those of FPIES.
"People with food allergies and intolerances should go through the Intro Diet in order to heal and seal their gut lining. The reason for allergies and food intolerances is a so-called 'leaky gut' when the gut lining is damaged by abnormal micro flora. Foods do not get the chance to be digested properly before they get absorbed through this damaged wall and cause the immune system to react to them. Many people try to identify which foods they react to. However, with damaged gut wall they are likely to absorb most of their foods partially digested, which may cause an immediate reaction or a delayed reaction (a day, a few days, or even a couple of weeks later). As these reactions overlap with each other, you can never be sure what exactly you are reacting to on any given day. Testing for food allergies is notoriously unreliable: if they had enough resources to test twice a day for two weeks, they would find that they are "allergic" to everything they eat. As long as the gut wall is damaged and stays damaged, you can be juggling your diet forever, removing different foods and never getting anywhere. From my clinical experience, it is best to concentrate on healing the gut wall with the Introduction Diet. Once the gut wall is healed, the foods will be digested properly before being absorbed, which will remove many food intolerances and allergies."
Reference: here
Dr. Campbell-McBride has been in practice with this philosophy of medicine since 1998.
At Ellie's last GI appointment, our fantastic and up-to-date doctor (he really is wonderful) told us there was some 'new' information coming out that speculated that a leaky gut caused additional proteins in to the body that caused reactions such as those of FPIES.
The Hand of God (a pause to give credit where credit is due)
That afternoon I was able to research and process what the yellow poop meant. There are three things that can cause it: bacteria infection, lack of stomach bile, or GERD (reflux). Elianna has already been tested for bacterial infections, obviously has GERD, and the lack of stomach bile hit a chord. Where had I read that? Leaky gut and lack of stomach bile...?
I headed back to my GAPs book where I remembered it. And spent the rest of the day reading as fast as I could. I needed a crash course.
Life is funny. In fact, every day I am glad it is not me making the world spin. And every once in a while we are afforded the rare opportunity to look backwards and see a chain of events that were divinely orchestrated and designed for a given moment. About 5 years ago I began the discussion of yeast and candida with a friend, and learned about sugar. Another friend gave me the book "In Defense of Food", and I learned about grains and flour. I made some changes in our home, and in our diet. We moved to a small town called Davis, and I met some new moms. I went to a nutrition talk and examined the issue of organic produce. I made a great friend who introduced me to Dr. Mercola, elderberry, and the perils of diary. Another great friend was diagnosed with breastcancer, and I spent two years learning about phytoestrogens, environmental pollutants, and plastics. Elianna was born. I was severely anemic, and learned that food combinations can help heal the body faster. Meat eaten with orange juice helps the body process the iron more efficiently. Elianna was sick. And I met a woman who was feeding her family a most controversial diet from a doctor in the UK, that had been started for autistic kids. She had the resources I needed to survive my elimination diets, and without knowing me she spent hours discussing nutrition. She loaned me her book on the Specific Carbohydrate Diet and the GAPs Diet.
Friday I headed back to my GAPs book. Yes....multiple intolerances....leaky gut....lets in proteins it shouldn't.....lack of bile....this was all falling into place.
Doctors and nutritionists had been unable to give me guidance on what to feed Elianna next, and she needed food NOW. I had been warned to stay away from high protein foods because she would most certainly react, but the GAPs diet has been successful on thousands of patients since before 1990. This was more than the crap-shoot answers the allergist could give me, and more than any study done to date on this condition in the United States. So GAPs it would be. I would find grass fed beef, and we would start with bone broth. And I would do it immediately.
That night Elianna would not sleep. She cried, had sunken eyes, and had barely eaten 25 ounces all day...for six days. How could her body fight the change in her intestines when she was not even getting enough nutrition to heal? I made the decision to add formula back into her almond milk. Only two scoops, instead of the 5, but it was enough. She slept that night, and she ate well.
I headed back to my GAPs book where I remembered it. And spent the rest of the day reading as fast as I could. I needed a crash course.
Life is funny. In fact, every day I am glad it is not me making the world spin. And every once in a while we are afforded the rare opportunity to look backwards and see a chain of events that were divinely orchestrated and designed for a given moment. About 5 years ago I began the discussion of yeast and candida with a friend, and learned about sugar. Another friend gave me the book "In Defense of Food", and I learned about grains and flour. I made some changes in our home, and in our diet. We moved to a small town called Davis, and I met some new moms. I went to a nutrition talk and examined the issue of organic produce. I made a great friend who introduced me to Dr. Mercola, elderberry, and the perils of diary. Another great friend was diagnosed with breastcancer, and I spent two years learning about phytoestrogens, environmental pollutants, and plastics. Elianna was born. I was severely anemic, and learned that food combinations can help heal the body faster. Meat eaten with orange juice helps the body process the iron more efficiently. Elianna was sick. And I met a woman who was feeding her family a most controversial diet from a doctor in the UK, that had been started for autistic kids. She had the resources I needed to survive my elimination diets, and without knowing me she spent hours discussing nutrition. She loaned me her book on the Specific Carbohydrate Diet and the GAPs Diet.
Friday I headed back to my GAPs book. Yes....multiple intolerances....leaky gut....lets in proteins it shouldn't.....lack of bile....this was all falling into place.
Doctors and nutritionists had been unable to give me guidance on what to feed Elianna next, and she needed food NOW. I had been warned to stay away from high protein foods because she would most certainly react, but the GAPs diet has been successful on thousands of patients since before 1990. This was more than the crap-shoot answers the allergist could give me, and more than any study done to date on this condition in the United States. So GAPs it would be. I would find grass fed beef, and we would start with bone broth. And I would do it immediately.
That night Elianna would not sleep. She cried, had sunken eyes, and had barely eaten 25 ounces all day...for six days. How could her body fight the change in her intestines when she was not even getting enough nutrition to heal? I made the decision to add formula back into her almond milk. Only two scoops, instead of the 5, but it was enough. She slept that night, and she ate well.
TGIF
Friday I packed up the kiddos so we could attempt to make it to our local home school co-op. I had no idea how I was going to make sure Elianna actually ate while we were there, and my nerves were a wreck, but there was no way I could disappoint my five year old with something else she would miss out on due to her sick sister. I just prayed that the other moms (and dads) would be understanding of my foggy glazed expressions and difficulty socializing like a normal human being. After all, they have appeared understanding thus far. So out the door we went.
After the first hour, Elianna gladly took her bottle of almond milk and drank it lukewarm, actually, mostly cold! Now this was a first for her - EVER. She has always been very particular about the temperature of her bottle, and I believe it is because of her reflux and pain. The warm soothes and makes it easier to swallow. I happily accepted this cold bottle as a sign that she was feeling better. Hooray!
The most exciting event occurred during hour two - a diaper full of yellow poop! In the FPIES world, we are great poop analyzers. Color, smell, texture, consistency, time of day, amount, ...you name it. We FPIES mommies could write stellar science reports on the poop in those FPIES diapers. What is typical is a green, acidic, butt burning, rash causing, sometimes blistering, extreme diarrhea or extreme constipation. The smell is a give away from the next room. Elianna has had this in her diapers since birth. THIS was the first yellow poo I had probably seen since we had left the hospital when she was born. THIS was remarkable. THIS did not burn and was only uncomfortable, and THIS was proof that she was not reacting to the almond milk! Two solid answers in one morning, and I was ecstatic.
THIS was a great day that started out with some fantastic answers. Thank you God. THANK YOU for answers.
After the first hour, Elianna gladly took her bottle of almond milk and drank it lukewarm, actually, mostly cold! Now this was a first for her - EVER. She has always been very particular about the temperature of her bottle, and I believe it is because of her reflux and pain. The warm soothes and makes it easier to swallow. I happily accepted this cold bottle as a sign that she was feeling better. Hooray!
The most exciting event occurred during hour two - a diaper full of yellow poop! In the FPIES world, we are great poop analyzers. Color, smell, texture, consistency, time of day, amount, ...you name it. We FPIES mommies could write stellar science reports on the poop in those FPIES diapers. What is typical is a green, acidic, butt burning, rash causing, sometimes blistering, extreme diarrhea or extreme constipation. The smell is a give away from the next room. Elianna has had this in her diapers since birth. THIS was the first yellow poo I had probably seen since we had left the hospital when she was born. THIS was remarkable. THIS did not burn and was only uncomfortable, and THIS was proof that she was not reacting to the almond milk! Two solid answers in one morning, and I was ecstatic.
THIS was a great day that started out with some fantastic answers. Thank you God. THANK YOU for answers.
Moving Past Hemp (for now)
The next day I added 1/4 teaspoon Hemp protein powder to Elianna's formula, but when she finished the bottle there was a lot left. The second bottle confirmed that the powder was staying stuck in the neck of the bottle nipple and she was not ingesting it. Bummer. That was a wasted day.
She was thinner, and she still only ate maybe two bottles that day. No reflux or reaction symptoms were obvious, and I had no idea what to do. The nutritionist had instructed me to give her at least a week to get back up to eating the same amount as formula or more. We were at day 5.
I researched the caloric value of almond milk. I researched almond oil, hemp milk, hemp oil, hemp powder, her safe fruits....anything I could think of that I could add to her almond milk to give it more calories. I consulted a friend who makes home made formula for her FPIES son, and attempted to create a recipe that would be safe for Ellie. She needed calories. The hemp protein powder didn't have many calories in it, so that was not worth the trial and risking the fail. Not eating could be a sign that she was hurting from the almond milk.
I emailed the nutritionist again, and he pushed me towards a specific brand of Hemp milk. I responded that it had carageenan in it, which is known for causing stomach upset. I didnt think that was a good choice. He emailed again saying to try another specific brand that did not have carageenan. It had brown rice syrup. I emailed again and said that was also not going to work, and then decided it was just wasting my time to consult the nutritionist.
That night on my knees I begged to know if she was reacting to the almond milk, or if being off the corn formula she was actually feeling better. And next steps? Add an oil? Try a food? I needed direction.
She was thinner, and she still only ate maybe two bottles that day. No reflux or reaction symptoms were obvious, and I had no idea what to do. The nutritionist had instructed me to give her at least a week to get back up to eating the same amount as formula or more. We were at day 5.
I researched the caloric value of almond milk. I researched almond oil, hemp milk, hemp oil, hemp powder, her safe fruits....anything I could think of that I could add to her almond milk to give it more calories. I consulted a friend who makes home made formula for her FPIES son, and attempted to create a recipe that would be safe for Ellie. She needed calories. The hemp protein powder didn't have many calories in it, so that was not worth the trial and risking the fail. Not eating could be a sign that she was hurting from the almond milk.
I emailed the nutritionist again, and he pushed me towards a specific brand of Hemp milk. I responded that it had carageenan in it, which is known for causing stomach upset. I didnt think that was a good choice. He emailed again saying to try another specific brand that did not have carageenan. It had brown rice syrup. I emailed again and said that was also not going to work, and then decided it was just wasting my time to consult the nutritionist.
That night on my knees I begged to know if she was reacting to the almond milk, or if being off the corn formula she was actually feeling better. And next steps? Add an oil? Try a food? I needed direction.
Sunday, February 6, 2011
Fearful Mommy: part 2
We began transitioning Ellie onto the home made almond milk. The allergist wanted me to transition over the period of a month, while the nutritionist wanted me to start introducing new foods right away, and those two things did not match. I decided that if the corn formula was not good for her, we needed to transition faster than a month. Her nutrition depended on it, so within 4 days we had her on 100% almond milk. It was not going well. Her intake was down dramatically, and about every 3rd or 4th bottle she was vomiting. I think that if I was on 100% almond milk, I would vomit, too.
By Wednesday of that week I began to be seriously concerned for dehydration. I couldn't tell if her clumsiness and lethargic behavior was due to reaction, die off, or just plain lack of food. It was also the first day we had to take her out of the house. We had plans to take Moriah to the SF Academy of Sciences homeschool day, and she was looking forward to it tremendously. We packed up two thermoses of hot almond milk, and headed out, just like we would do for formula.
The day went OK, though her intake was low as usual. Her daily 50-60 ounces was down to about 25, and this day was no different. Late that afternoon we headed home, and she was hungry. She quickly downed a bottle in the car, and then suddenly as we entered the foothills during rush hour traffic, she began vomiting. She projectile vomited so hard that she was having trouble breathing, and she wasn't stopping. Jason crossed four lanes of traffic to stop on the shoulder, and I barely had enough room to open the door. I jumped out, grabbed her out of her seat, and held her upside down, up the hill we were next to, as she continued to heave. This was scary enough that for the first time her 5 year old sister verbalized 'Mommy I am sad for Ellie too!'.
What in the world? I was puzzled. We cleaned up as best we could and piled back in for the remainder of the ride home. I grabbed the thermos and smelled. It was rancid. Stupid, stupid mommy! It never even occurred to me that the almond milk would store differently and needed to be refrigerated and not hot. And in my head I knew - she was so used to eating things that hurt her tummy or that tasted nasty, she just ate it. The whole bottle. 8 ounces of rancid almond milk.
By the time we got home, got cleaned up, and got the kids into bed, I was exhausted. I found myself on my knees in the bedroom once more, looking for wisdom and direction. And the mommy guilt was horrific.
We had just finished day four of only almond milk. Her body was thinning, and her skin was changing. She was groggy, clumsy and lethargic, but her eyes were brighter and less dull. The results were confusing, and no doctor could give me direction. I had to rely on my mommy instincts, what information I had been able to piece together, and pray for direction from the God who made her. At this point what I knew was that the almond milk was perhaps better than the formula, but not enough to sustain her. And I was convinced some of what I was seeing was a 'die off' effect in her intestines, making her sicker.
I made the decision to try hemp next. Following GAPs guidelines, I made a paste of the hemp protein powder I had purchased, and applied it to her wrist while she slept. I covered it with a bandaid, and went to bed.
By Wednesday of that week I began to be seriously concerned for dehydration. I couldn't tell if her clumsiness and lethargic behavior was due to reaction, die off, or just plain lack of food. It was also the first day we had to take her out of the house. We had plans to take Moriah to the SF Academy of Sciences homeschool day, and she was looking forward to it tremendously. We packed up two thermoses of hot almond milk, and headed out, just like we would do for formula.
The day went OK, though her intake was low as usual. Her daily 50-60 ounces was down to about 25, and this day was no different. Late that afternoon we headed home, and she was hungry. She quickly downed a bottle in the car, and then suddenly as we entered the foothills during rush hour traffic, she began vomiting. She projectile vomited so hard that she was having trouble breathing, and she wasn't stopping. Jason crossed four lanes of traffic to stop on the shoulder, and I barely had enough room to open the door. I jumped out, grabbed her out of her seat, and held her upside down, up the hill we were next to, as she continued to heave. This was scary enough that for the first time her 5 year old sister verbalized 'Mommy I am sad for Ellie too!'.
What in the world? I was puzzled. We cleaned up as best we could and piled back in for the remainder of the ride home. I grabbed the thermos and smelled. It was rancid. Stupid, stupid mommy! It never even occurred to me that the almond milk would store differently and needed to be refrigerated and not hot. And in my head I knew - she was so used to eating things that hurt her tummy or that tasted nasty, she just ate it. The whole bottle. 8 ounces of rancid almond milk.
By the time we got home, got cleaned up, and got the kids into bed, I was exhausted. I found myself on my knees in the bedroom once more, looking for wisdom and direction. And the mommy guilt was horrific.
We had just finished day four of only almond milk. Her body was thinning, and her skin was changing. She was groggy, clumsy and lethargic, but her eyes were brighter and less dull. The results were confusing, and no doctor could give me direction. I had to rely on my mommy instincts, what information I had been able to piece together, and pray for direction from the God who made her. At this point what I knew was that the almond milk was perhaps better than the formula, but not enough to sustain her. And I was convinced some of what I was seeing was a 'die off' effect in her intestines, making her sicker.
I made the decision to try hemp next. Following GAPs guidelines, I made a paste of the hemp protein powder I had purchased, and applied it to her wrist while she slept. I covered it with a bandaid, and went to bed.
Fearful Mommy: part 1
Since we knew Elianna's formula was keeping her from getting completely better (to baseline), when we introduced almond milk we also lowered the amount of formula we were giving her to help make sure it was a successful pass. Once we determined it was safe, we went back to 100% formula and moved on to the next trial.
Over the next couple weeks there were a lot of complications, but I couldn't help feeling as if something was just a little not right, and after going back on to the formula 100% she was actually worse. I knew that when you remove a food trigger and then reintroduce it the symptoms could be worse or more immediate because T-cells can identify it faster. I kept shrugging it off, but then over the next three weeks, this added to a couple of other fails, and she just didn't get any better.
For the first time ever her weight started to decline very slightly, her respiratory symptoms were horrible, and we were even failing diaper cream on her butt. This was not boding well. We returned to the allergist who continued with the original instructions: pass almond milk and then transition her off the formula entirely. The concept that her intestines were not going to heal entirely, and that she may not pass any other foods while still on the corn based formula, was one that I could understand in my head. However, the idea of putting my 18 month old on a diet of home made almond milk, and a teaspoon or so of fruit at dinner, was not a very comforting thought. This had to be insane. But the plan was to move quickly and get other foods into her diet. For a child with sensory and food issues this was a lot to expect, and I was spending a lot of fearful time on my knees praying.
I waited until the following week when we went back to see the GI and the nutritionist, so that I could ask if this plan was as insane as I thought. Truly, could an 18 month old survive on only almond milk? Surely not. My mommy instincts were going through the roof. The GI tried to reassure me by saying that 80% of a child's calories between 12 and 24 months of age come from milk (ok but that is for kids who eat food right?), and the nutritionist said that it would be low in protein, so if I could trial and add hemp milk, then lamb, and a gummy multi-vitamin that he recommended, we would be good to go.
Wow. That seemed like a good plan, but a lot of steps to conquer. And could we do it quick enough to not be detrimental to her health? Again I was reassured that she has never had failure to thrive and definitely is in good enough condition to go a month without worrying that she isn't getting her daily recommended nutrition.
A MONTH.
That certainly did not sit well with this mama. A month of transitioning off of the formula, and onto only home made almond milk, while trialling these other new foods? What if she failed one? What if she needed weeks to heal?
What about the fact that she was not healed to begin with and I listened to her cough up her lungs and wake up screaming for air every night?!?
I prayed, and I fretted, and I researched, and I consulted others that I could trust, and the answer was all the same: no one could tell me what the answer was, and the doctors were giving me what they felt to be the best answer. I called and spoke with the pediatrician who gave me an immediate referral to the top pediatric nutritionist at the local hospital, but it would take time to be processed and get in. How long?
The following week her symptoms of illness continued, and we decided to take the plunge. I began making almond milk, and we began the transition. And I was afraid.
I was afraid for her nutrition, I was afraid for a possible reaction once she was on that much almond milk, and I was afraid that if we had to go back to the formula we would not be able to.
Over the next couple weeks there were a lot of complications, but I couldn't help feeling as if something was just a little not right, and after going back on to the formula 100% she was actually worse. I knew that when you remove a food trigger and then reintroduce it the symptoms could be worse or more immediate because T-cells can identify it faster. I kept shrugging it off, but then over the next three weeks, this added to a couple of other fails, and she just didn't get any better.
For the first time ever her weight started to decline very slightly, her respiratory symptoms were horrible, and we were even failing diaper cream on her butt. This was not boding well. We returned to the allergist who continued with the original instructions: pass almond milk and then transition her off the formula entirely. The concept that her intestines were not going to heal entirely, and that she may not pass any other foods while still on the corn based formula, was one that I could understand in my head. However, the idea of putting my 18 month old on a diet of home made almond milk, and a teaspoon or so of fruit at dinner, was not a very comforting thought. This had to be insane. But the plan was to move quickly and get other foods into her diet. For a child with sensory and food issues this was a lot to expect, and I was spending a lot of fearful time on my knees praying.
I waited until the following week when we went back to see the GI and the nutritionist, so that I could ask if this plan was as insane as I thought. Truly, could an 18 month old survive on only almond milk? Surely not. My mommy instincts were going through the roof. The GI tried to reassure me by saying that 80% of a child's calories between 12 and 24 months of age come from milk (ok but that is for kids who eat food right?), and the nutritionist said that it would be low in protein, so if I could trial and add hemp milk, then lamb, and a gummy multi-vitamin that he recommended, we would be good to go.
Wow. That seemed like a good plan, but a lot of steps to conquer. And could we do it quick enough to not be detrimental to her health? Again I was reassured that she has never had failure to thrive and definitely is in good enough condition to go a month without worrying that she isn't getting her daily recommended nutrition.
A MONTH.
That certainly did not sit well with this mama. A month of transitioning off of the formula, and onto only home made almond milk, while trialling these other new foods? What if she failed one? What if she needed weeks to heal?
What about the fact that she was not healed to begin with and I listened to her cough up her lungs and wake up screaming for air every night?!?
I prayed, and I fretted, and I researched, and I consulted others that I could trust, and the answer was all the same: no one could tell me what the answer was, and the doctors were giving me what they felt to be the best answer. I called and spoke with the pediatrician who gave me an immediate referral to the top pediatric nutritionist at the local hospital, but it would take time to be processed and get in. How long?
The following week her symptoms of illness continued, and we decided to take the plunge. I began making almond milk, and we began the transition. And I was afraid.
I was afraid for her nutrition, I was afraid for a possible reaction once she was on that much almond milk, and I was afraid that if we had to go back to the formula we would not be able to.
Things We Are Looking For
This is a list of the items we are currently in need of in our home to cook for Ellie. Information on sales, ads, or give-aways would be greatly appreciated!
- large stock pot with lid
- soy and corn free meat information: almost anything at this point! emu anyone? yak?
- large lidded bucket for making and storing laundry soap (empty kitty litter bucket?)
- large food processor
- yogurt maker
- large stock pot with lid
- soy and corn free meat information: almost anything at this point! emu anyone? yak?
- large lidded bucket for making and storing laundry soap (empty kitty litter bucket?)
- large food processor
- yogurt maker
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