I have this other blog. I started it before Ellie's, and I never really worked out the focus of it. About 5 months ago I just quit writing on it because it felt like too much of a diary, and I have been uncomfortable putting so much of myself out there. Recently, I decided that I wanted to get back to it and blog more about our home school endeavors and my personal junk, so I was browsing through old posts.
I came across the post I made at the time of Ellie's diagnosis, and it stopped me cold. Not only did it bring up the emotion of that diagnosis, but it showed me how incredibly far we have come in such a short time. Ellie has made progress that was not expected, and we have chosen a path of healing that is exactly the OPPOSITE of what mainstream medicine recommends. I also appreciated the reminder that our favorite GI never fully bought into the 'she will out grow it' phrase. This phrase has been a personal pet peeve of mine since day one. 'At some point their intestines mature'....'They tend to no longer react'....blah ditty blah. Hooray for some children that at some point their intestines have healed, and they can eat. They, by 2 or 3 years of age, have been on an elemental formula that their body can thrive on long enough to see healing, and be able to begin eating food, following a strict method of introducing them one at a time. For those of our kiddos with a severe corn intolerance, we may not be so lucky.
For the sake of insight, and a glimpse into the beginning, here is a copy of this post:
Who Would Have Thought? June 21, 2010
Today I headed to the Pediatric GI specialist for Elianna's follow up appointment. Last week we received the good news that her blood tests came back negative for Celiac and for a whole gamut of allergies. I entered the office and jokingly told the doctor I was hoping I would show up and he would just tell me she had a rough first four months before her dairy protein diagnosis, and that all she needed was a good round of probiotics and would be good to go. He laughed. And then told me, 'yeah....no. We can fake throwing up but we cant fake diarrhea'. Darn.
We love this office. These doctors are incredibly on the ball and always have the latest information on anything random. Dr. Barad can spout random facts about anything such as 'well, yes, actually, Sub-Sahara Africa has the highest incidence of Celiac's in the world with 1 in every ?? having it'. I don't even remember the number he gave. So today I felt blessed to have such a knowledgeable doctor, but not so happy at the diagnosis.
Who would have thought that I would be told my 10 month old daughter can not have ANY protein. None. This apparently occurs in over 50% of infants diagnosed with her dairy and soy processing disorder. What she has is relatively new and is called FPIES (referred to as F-Pies), and stands for Food Protein Induced Enterocolitis Syndrome.
The bad news first:
No protein for now, and most likely at the earliest will be 18 months of age. The treatment is to get nutrition from an extensively hydrolyzed casein formula, which is what we are already spending between approximately $500 and $700 a month on to feed her. She can be on this formula until she is 2 if she has to be, according to the pediatric nutritionist. She may not have grains, legumes or meat. Did you know that rice has protein? There is also a list of highly allergic foods that the lucky 3% of kids with this diagnosis get to deal with. Top of the list are rice, sweet potatoes, and bananas. Geesh. The top things we are supposed to feed when beginning solids! No wonder we are having problems.
The good news last:
Perhaps with this diagnosis we will be able to get the insurance company to say the formula is actually medically necessary and they will pay for at least a portion of it. Food will be easy since she is on a restricted diet of formula and fruits for the next six weeks. We are to start with apricots, plums, and apples, the three least allergy prone foods for all humans anywhere. (again, who would have thought?). The majority of these kids outgrow this syndrome between 2 and 3 years of age. GREAT NEWS. (however there is a long extensive process for introducing these solids successfully).
What now:
We have a referral in to the allergist. Our GI doctor said he is comfortably the initial diagnosis and saying that she is on the FPIES spectrum, but wants the allergist to examine her and weigh in as well. I have been instructed to purchased fresh, organic fruit that is in season and made food for her. And now I begin the process of trying to learn what kitchen items can retain allergens (anyone know about cast iron pots and pans?).
I think that is all. Though my brain is pretty fried from rethinking and processing. I am so happy we have a diagnosis finally. Whew. I need a glass of wine!
I will follow up later with another post explaining how this is diagnosed and how it falls in the allergy category. Time for dinner.
Showing posts with label diagnosis. Show all posts
Showing posts with label diagnosis. Show all posts
Saturday, May 21, 2011
Tuesday, April 26, 2011
Digestive Enzymes: NOW what do we feed her?
The search for an explanation of digestive enzymes and why they might be missing revealed a list of additional 'disorders' and 'diagnoses' that are labeled as genetic, but with no gene yet found. All of the enzymes can be missing in various capacities, and it is very often a secondary condition to intestinal dysbiosis. Let me say that again - a secondary condition due to intestinal damage and NOT a genetic disorder. Our G.I. brought this to our attention early on. This is what I believe Ellie has, Sugar Intolerance as a secondary condition to FPIES.
Congential Sucrase-Isomaltase Deficiency (CSID) is one dissacharide deficiency diagnosis with it's own parent group website. On this website I found a very helpful list telling sucrose and starch levels in various foods. One quick glance through shed light onto the progression of foods allowed on the GAPS and SCD nutritional programs. The introduction diet (or healing stage) of GAPS allows for only broccoli, cauliflower, carrots, onions, leeks, and squash (winter and summer). All of these vegetables have extremely low levels of any sugars that would need enzymes for digestion. Winter squash and carrots are the highest in starch, and most surprisingly, broccoli and cauliflower have almost zero levels of fructose, sucrose, maltose, lactose or starch. Those green vegetables that the doctors have said for Ellie to avoid due to high levels of protein? Low low LOW on the scale of digestion needs. Good good GOOD choice for us! And right in line with Dr. Natasha. More confirmation we are headed in the right direction.
So the answer, once again, was right in front of me. What do we feed her to continue her healing? GAPS, stage 1. For those of you curious here is a fantastic resource I found by another blogger. She compiled a condensed view of the healing stages of GAPS. Her super cute site has a super great name, too: Health, Home and Happiness. A very important three!
Congential Sucrase-Isomaltase Deficiency (CSID) is one dissacharide deficiency diagnosis with it's own parent group website. On this website I found a very helpful list telling sucrose and starch levels in various foods. One quick glance through shed light onto the progression of foods allowed on the GAPS and SCD nutritional programs. The introduction diet (or healing stage) of GAPS allows for only broccoli, cauliflower, carrots, onions, leeks, and squash (winter and summer). All of these vegetables have extremely low levels of any sugars that would need enzymes for digestion. Winter squash and carrots are the highest in starch, and most surprisingly, broccoli and cauliflower have almost zero levels of fructose, sucrose, maltose, lactose or starch. Those green vegetables that the doctors have said for Ellie to avoid due to high levels of protein? Low low LOW on the scale of digestion needs. Good good GOOD choice for us! And right in line with Dr. Natasha. More confirmation we are headed in the right direction.
So the answer, once again, was right in front of me. What do we feed her to continue her healing? GAPS, stage 1. For those of you curious here is a fantastic resource I found by another blogger. She compiled a condensed view of the healing stages of GAPS. Her super cute site has a super great name, too: Health, Home and Happiness. A very important three!
Monday, February 28, 2011
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.
Wednesday, October 20, 2010
Meeting the Allergist
My feeling of urgency was not reciprocated by the allergist referral process. It took several weeks to actually get an appointment and get in to see the allergist we were referred to. I was extremely nervous, and had no idea that this would begin my journey of researching and advocating. About one month later we headed to our appointment with the allergist, and it did not go as I had hoped.
It was a very difficult appointment. We waited an extensive amount of time in the waiting room, and then even longer in the patient room. When the doctor finally came in he barely stood still while talking and then exited the room in a hurry. He definitely hit one of my pet peeves - giving the impression that I had to talk fast enough to get it all in before he was gone or had decided not to listen anymore. He stood and read Ellie's file while in the room with us and asked questions about the GI's notes which(incorrectly)said that banana and rice were ok. He said this didn't make sense and he needed to talk to the G.I. and declared that we were going to do prick testing.
I at least saw this coming, because I have a history of IgE allergies and some severe food allergies. I have had my share of prick testing.
My response to the allergist was: I am familiar with prick testing as I have many of my own severe IgE allergies. 20 years ago when they drew my blood and sent it to UCD to study I was told they did not know much about food allergies and that prick testing was not helpful. I assume they know more now?
His response to me: Hmm. No. Not really. There is a lot we don't know and not much has changed in the last 20 years. The nurse will be in in a minute.
And out he went. Nurse came in. Prick testing completed and Ellie reacted to NOTHING. Not a single one. (tested for: milk, almond, cod, soy, rye, oats, barley, white potato, chicken, apple and the control)
Back in came the allergist. He wants to do patch testing next to see if we can find any leads. He needs to talk to the G.I. He will communicate with me over email or phone. He recommends we wait until she is a year old before proceeding with anything. He looked at the list from the G.I. and pediatric nutritionist. Do not trial apples. Pit fruits only. Start with peaches, apricots, nectarines. He gave me a handout on allergies (IgE) and allergic rhinitis, a handout on dietary restrictions for control of gastroesophogeal reflux that had no helpful information, and a handout with instructions for APT (patch testing).
I was extremely overwhelmed and over saturated. The appointment seemed scattered, rushed, and did not provide any helpful information or answers. The word 'FPIES' was never said, nor a diagnosis of any kind. Continue Nutramigen Lipil formula, wait until she is a year, try pit fruits first, and wait to hear from him.
As he ran out of the patient room we were sitting in I stopped him and asked about the insurance company paying for the formula if she has a diagnosis. He laughed a most irritating scoff, and said 'Have you been watching the news? Insurance wont pay for anything right now.' And walked off.
It was a very difficult appointment. We waited an extensive amount of time in the waiting room, and then even longer in the patient room. When the doctor finally came in he barely stood still while talking and then exited the room in a hurry. He definitely hit one of my pet peeves - giving the impression that I had to talk fast enough to get it all in before he was gone or had decided not to listen anymore. He stood and read Ellie's file while in the room with us and asked questions about the GI's notes which(incorrectly)said that banana and rice were ok. He said this didn't make sense and he needed to talk to the G.I. and declared that we were going to do prick testing.
I at least saw this coming, because I have a history of IgE allergies and some severe food allergies. I have had my share of prick testing.
My response to the allergist was: I am familiar with prick testing as I have many of my own severe IgE allergies. 20 years ago when they drew my blood and sent it to UCD to study I was told they did not know much about food allergies and that prick testing was not helpful. I assume they know more now?
His response to me: Hmm. No. Not really. There is a lot we don't know and not much has changed in the last 20 years. The nurse will be in in a minute.
And out he went. Nurse came in. Prick testing completed and Ellie reacted to NOTHING. Not a single one. (tested for: milk, almond, cod, soy, rye, oats, barley, white potato, chicken, apple and the control)
Back in came the allergist. He wants to do patch testing next to see if we can find any leads. He needs to talk to the G.I. He will communicate with me over email or phone. He recommends we wait until she is a year old before proceeding with anything. He looked at the list from the G.I. and pediatric nutritionist. Do not trial apples. Pit fruits only. Start with peaches, apricots, nectarines. He gave me a handout on allergies (IgE) and allergic rhinitis, a handout on dietary restrictions for control of gastroesophogeal reflux that had no helpful information, and a handout with instructions for APT (patch testing).
I was extremely overwhelmed and over saturated. The appointment seemed scattered, rushed, and did not provide any helpful information or answers. The word 'FPIES' was never said, nor a diagnosis of any kind. Continue Nutramigen Lipil formula, wait until she is a year, try pit fruits first, and wait to hear from him.
As he ran out of the patient room we were sitting in I stopped him and asked about the insurance company paying for the formula if she has a diagnosis. He laughed a most irritating scoff, and said 'Have you been watching the news? Insurance wont pay for anything right now.' And walked off.
Monday, October 18, 2010
That Fateful Appointment
Nearing the end of June we headed back to the GI doctor for Ellie's blood test results and hopefully some answers. What we discussed:
Only on Nutramigen Lipil. She licks foods but most of the time will not eat them and is becoming more and more disinterested. Trigger foods result in vomiting and non-bloody diarrhea and then resolves. Foods tried included sweet potato, rice, banana, wheat products, barley, butternut squash.
I was unable to tell him if she cried more or less at any point because she had cried since birth with no visible pattern. She also slept at odd intervals and was completely unable to get on a schedule, so I could not address that as well. On occasion she did have low grade fevers that appeared at the same time as food exposure.
Blood test results showed mostly normal but some things on the low side. She showed negative to celiacs, and all IgE tests (RAST) came back negative except for a slight peanut. (I found out later that these tests were not very accurate anyway since she has to have eaten the foods for her blood to respond).
He disappeared to discuss with the pediatric nutritionist and then returned. "There is this very rare condition..." he began... "we have only seen a few"...."less than 3% of children"...."FPIES"...."I want her to see an allergist for a second opinion"...."no way to diagnose except by symptoms and process of eliminating anything else it could be"...."we dont really know"...."not a lot of info"...."there is another option for formula we should try"...."stop giving her foods for now"...."establish a plan with the nutritionist"..."here is a copy of the most recent study done"...
WHAT? WHAT was he talking about? Less than how many kids? They don't KNOW anything? This was not what I had wanted to hear. June. 2010. My Ellie is 10 months old and nearing her first birthday. No WAY. Something called FPIES? Food protein? She cant have protein? Rice has protein? So do green vegetables? All food? I just did a lot of nodding and repeating. The plan? Start with the least allergic foods with the lowest levels of protein, preferably all organic. Start with apples, apricots, plums. Nothing else. Keep with the Nutramigen Lipil. Soon she will be a year and we can try other options. And here is a referral to the allergist.
Only on Nutramigen Lipil. She licks foods but most of the time will not eat them and is becoming more and more disinterested. Trigger foods result in vomiting and non-bloody diarrhea and then resolves. Foods tried included sweet potato, rice, banana, wheat products, barley, butternut squash.
I was unable to tell him if she cried more or less at any point because she had cried since birth with no visible pattern. She also slept at odd intervals and was completely unable to get on a schedule, so I could not address that as well. On occasion she did have low grade fevers that appeared at the same time as food exposure.
Blood test results showed mostly normal but some things on the low side. She showed negative to celiacs, and all IgE tests (RAST) came back negative except for a slight peanut. (I found out later that these tests were not very accurate anyway since she has to have eaten the foods for her blood to respond).
He disappeared to discuss with the pediatric nutritionist and then returned. "There is this very rare condition..." he began... "we have only seen a few"...."less than 3% of children"...."FPIES"...."I want her to see an allergist for a second opinion"...."no way to diagnose except by symptoms and process of eliminating anything else it could be"...."we dont really know"...."not a lot of info"...."there is another option for formula we should try"...."stop giving her foods for now"...."establish a plan with the nutritionist"..."here is a copy of the most recent study done"...
WHAT? WHAT was he talking about? Less than how many kids? They don't KNOW anything? This was not what I had wanted to hear. June. 2010. My Ellie is 10 months old and nearing her first birthday. No WAY. Something called FPIES? Food protein? She cant have protein? Rice has protein? So do green vegetables? All food? I just did a lot of nodding and repeating. The plan? Start with the least allergic foods with the lowest levels of protein, preferably all organic. Start with apples, apricots, plums. Nothing else. Keep with the Nutramigen Lipil. Soon she will be a year and we can try other options. And here is a referral to the allergist.
Sunday, October 10, 2010
The First Diagnosis
The next couple weeks we were back and forth between the pediatrician and the GI several times. I was pleased at the amount of communication that went on between the two. I went on a drastic elimination diet in an attempt to see improvement in her vomiting and diarrhea. I had already eliminated dairy and soy, and over the next couple weeks I had eliminated all of the top allergens as well, and was down to eating mostly vegetables. There was no improvement in Elianna. Diapers were less bright red, but she was still extremely lethargic, crying and vomiting a lot, and not meeting milestones. We had received the diagnosis of milk/soy protein intolerance. (*note: they now know that the soy protein is extremely similar in structure to the diary protein, thus dairy protein issues should include the elimination of soy as well) The GI had sent us home with a can of over the counter Nutramigen Lipil, and encouraged me to give it a shot. I took one look at the back of the can and cried. How could these ingredients be better for her than breast milk? It made no sense. And the price tag on this formula was going to be a hardship.
I felt affirmed when the pediatrician thought it bizarre to tell me to stop EBF, and was on the phone again with the GI. The result was the pediatrician telling me that I had to eat, and that she was only getting worse. Sometime around 12 weeks Elianna filled her diaper yet again with blood, and I was on the phone with the GI to tell them there was no improvement with my elimination diet. The nurse called back and very firmly informed me that if I did not start the formula THAT night, Elianna would be too anemic and must be hospitalized. I became angry as she said to me, "I know this sounds counter-intuitive, and makes no sense, but you need to trust us on this one. You have to start her tonight." I hung up the phone and cried. I made a bottle, handed it to Jason, and went for a walk.
When I returned, the house was quiet, and Elianna was on the floor in the living room. She had drank the entire bottle. I walked over and took a cautious look. She was moving, smiling, and extremely active. So active that I immediately thought she was having an adverse reaction to the formula and was having some type of seizure. In my panic, Jason put his arm around me and said "honey, look at her. She is happy after eating, she is smiling, and she is active like we have never seen her before". He was right! I did not even recognize her because she was not vomiting, screaming in pain, or laying like a lump. Amazing!
Within 48 hours her diapers no longer included visible blood, and her behavior improved (less fussiness and signs of pain). Her diapers resembled that of an EBF baby, so to me things were looking fantastic. The GI had been correct, and she could not even digest the protein structure in my breast milk. We had found an answer (for now). Hallelujah!
(The insurance company refused to pay for her formula because she had not been hospitalized, and so we began footing the expense which ranged between $500 - $800 a month to feed her.)
I felt affirmed when the pediatrician thought it bizarre to tell me to stop EBF, and was on the phone again with the GI. The result was the pediatrician telling me that I had to eat, and that she was only getting worse. Sometime around 12 weeks Elianna filled her diaper yet again with blood, and I was on the phone with the GI to tell them there was no improvement with my elimination diet. The nurse called back and very firmly informed me that if I did not start the formula THAT night, Elianna would be too anemic and must be hospitalized. I became angry as she said to me, "I know this sounds counter-intuitive, and makes no sense, but you need to trust us on this one. You have to start her tonight." I hung up the phone and cried. I made a bottle, handed it to Jason, and went for a walk.
When I returned, the house was quiet, and Elianna was on the floor in the living room. She had drank the entire bottle. I walked over and took a cautious look. She was moving, smiling, and extremely active. So active that I immediately thought she was having an adverse reaction to the formula and was having some type of seizure. In my panic, Jason put his arm around me and said "honey, look at her. She is happy after eating, she is smiling, and she is active like we have never seen her before". He was right! I did not even recognize her because she was not vomiting, screaming in pain, or laying like a lump. Amazing!
Within 48 hours her diapers no longer included visible blood, and her behavior improved (less fussiness and signs of pain). Her diapers resembled that of an EBF baby, so to me things were looking fantastic. The GI had been correct, and she could not even digest the protein structure in my breast milk. We had found an answer (for now). Hallelujah!
(The insurance company refused to pay for her formula because she had not been hospitalized, and so we began footing the expense which ranged between $500 - $800 a month to feed her.)
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