- 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!
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