Sunday, July 11, 2010
Elecare Vanilla
I have quite a bit extra Elecare Vanilla to give away before it expires next year. Jaxon only drinks it maybe once a week now. We are trying to wean him off completely. If anyone needs this formula please contact me or leave a comment here. I will mail it anywhere if you are willing to pay shipping.
Saturday, September 26, 2009
It has been forever!
I have not been posting on this blog because I have been putting everything on our family blog, but I promise I will be better in the future. I will update ASAP and post recent info...until then visit my other blog http://www.mhulse37.blogspot.com/
Monday, November 17, 2008
Shepard's Pie
I made Jaxon Shepard's Pie for the first time a little over a week ago. We had tested everything except the tomato sauce. All I did was cook ground turkey and mix it with green beans and sauce. Then I covered it with mashed sweet potatoes. He loved it. He looked it so much he would say "More, more" and do this if e didn't get it fast enough...
Too bad that night he looked like this...
and this....
and this.
We gave him some dye free Benadryl. He slept fine, the rash went away and it has not come back. I think his system is just hyper sensitive to new things so he tends to get a rash the first time he tries something. If it doesn't go away that is not a good sign and he may be having an EE reaction. If it does go away we try again. We have been giving Jaxon Shepard's Pie ever since. He still loves it and we have seen no other reactions.
We started trialing white potato last night. He didn't see to care for the texture of it. I think it was just too dry. He seemed to really like the Terra brand potato chips (he does have expensive taste). We are crossing our fingers. I am seeing turkey burgers and In-N-Out fries dancing across our feeding future. Yeah! If he passes potato I have a really cool recipe for pumpkin bread that calls for potato flour. Oh the possibilities...
Saturday, November 15, 2008
Jaxon's EE
I am Melody Hulse, our son Jaxon has Eosinophilic Esophagitis. I have learned quickly that limited information is available to parents and patients with Gastrointestinal Eosinophilic conditions. On this page I will share our family's struggle with this condition as we try to learn and understand enough to provide Jaxon with the highest quality of life possible.
Jaxon was always a "pukey" baby. His older brother Daniel was too, so at first we just figured that was how our boys were. Jaxon was 7lbs. 11oz at birth. At first he gained weight slowly but steadily. I was nursing him and thought that it was going better with Jaxon than it ever did with Daniel. I had milk supply issues with Daniel, but Jaxon was a little champ when it came to eating. At 2 months he was in the 50th percentile. He was long and skinny and puked all the time, but 50% is good, right? Our floor was constantly covered in rags to mop up the "spit-up". Jaxon went through 4-8 outfits a day (including the 2-3 sets of PJs at night). His bedding had to be changed constantly. Laundry was never ending. We quickly started having him wear bibs to try and save the clothes, which were all stained yellow by this point. The bibs quickly became disgusting soaking rags hanging from his neck so we changed them often. On Sundays we would go to our 3 hour block of church meetings armed with 2-3 burp cloths, an extra outfit, a package of baby wipes, and of course 2-3 bibs. Sometimes that was not enough. The car seat was another issue. When he would puke in the car seat it would leak out the holes in the bottom, filling the car seat base and stinking up the car (remember Jaxon was born in June in Mesa, AZ). When we would pull the car seat out of the car a trail of puke would drip along behind us.
At 4 months Jaxon was in the 25 percentile and we thought adding some “real food” would help him gain weight and sleep through the night. He started eating Gerber rice cereal and we slowly added in bananas and other pureed fruits and vegetables around 6 months. His puking increased rapidly and the idea of him sleeping through the night was a joke. By 6 months he had dropped to the 3rd percentile and had stopped gaining weight. He was just over a mere 13lbs, not even doubling his birth weight. His wrists and ankles were all bone and he was still wearing some 0-3 month clothes. Jaxon was hungry constantly: nursing every 2 hours for 30-45 minutes. He was always constipated too and would grunt out little black balls like rabbit poo (sorry for the description).
What did the doctor say you ask? Good question. Of course by this time I had asked the doctor about the puking many times. But, staying in line with Murphy’s Law Jaxon would never puke when the doctor was in the room and my description of the problem evoked the response “all babies puke a little”. By the 6 month appointment the pediatrician could not dispute that there was something wrong. The problem was the lack of action! No referral to a specialist, no follow-up appointments, only the statement “let’s weigh and watch”. He wanted a weight check every 2 weeks. Pathetic! I decided to see the specialist on my own. I rapidly found out there is a great lack of qualified GI doctors in this area and the ones that are here are over booked. The best I could do was get was an appointment three months out. Not good enough! What could I do?
We are members of the Church of Jesus Christ of Latter-day Saints and we strongly believe in the power of prayer. I was given a blessing and so was Jaxon. After the blessing I felt that I would be able to find out how to care for him. A few nights later I went to one of my best friend’s baby shower. While there I talked with her sister-in-law who happened to be a CNA. She mentioned the possibility of pyloric stenosis. She was the third person to mention this condition and I really knew nothing about it. On the way home from the shower I called Johnny and told him that I was taking Jaxon to the ER the next morning and not leaving without answers. He thought I was a little quirky for planning a trip to the ER but he agreed that we were not going to get answers any other way. By this time Jaxon was almost 7 months old, his beautiful blue eyes had dark rings under them, there was a constant rash on his face and bottom, and the soft spot on his head was dipped inward. The next morning I took my older son to a friend’s home and planned for a camping trip to the ER. I was armed with bags of random things to entertain myself and a 7 month old for a week if necessary. The ER I choose was a new private hospital. We checked in and were taken to a room with a bed within minutes. It was a Friday morning, January 18, 2008. Jaxon was severely dehydrated and his potassium levels were non existent. He was on an IV almost the entire day while they tried to find us a room at a larger hospital. I should have planned the trip to the ER better knowing that no specialist would be working after noon on a Friday. By the time we were admitted late Friday night all we could do was camp out until Monday morning. My mom came out to help, which she always does because my parents are just amazing that way.
After a terrible week in the hospital full of a puking baby, horrible tests and a round of the flu Pyloric stenosis was ruled out and we were released with a whopping bill and no answers except the possibility of acid reflux, which was yet again, pathetic. The positive aftermath of a stay in the hospital was that we were able to see a GI specialist and a follow-up appointment was set. We started working with the GI, Dr. R. Montes and were able to set-up an endoscopy to biopsy Jaxon’s esophagus.
Jaxon was diagnosed with Eosinophilic Esophagitis (EE) February 2008. The symptoms in young children are similar to reflux, but it is a separate, more severe condition. We feel blessed that his condition is so minor compared to the extent of some other children we have met, but either way this condition is life altering. Jaxon is allergic to the protein in food, which causes eosinophils (a type of white blood cell) to build up in his esophagus. The build up causes his esophagus to become constricted and ringed (like the rings on a vacuum hose). After the build up of eosinophils he begins vomiting and has severe yeast infections on his bottom as well as rashes on his cheeks. One specialist told me that the rash on his bottom has nothing to do with what he eats, but obviously that is not true, especially for Jaxon. The rash is the first indication I have he is reacting to a new food. EE along with Eosinophilic Gastroenteritis (EG) and Eosinophilic Colitis (EC) have really only started being diagnosed in the last 10 years and there is so much doctors just don't know about them yet.
The most effective form of treatment in addition to an elemental diet consisting of amino acid based formula is not possible for small children. Treatment in the form of Flovent (swallowed not inhaled) has been effective in teens and adults. Budesonide is the treatment more frequently used with smaller children. Jaxon was at first put on prednisone for a month which helped him start growing again, but this medication can have very negative developmental effects. Luckily for our family we have not seen it affect him at all developmentally. Jaxon is currently off all medication except Omeprazole, the generic form of Prilosec. We tried Prevacid but he could not keep it down, even as a solutab mashed in his food.
We started trying to heal Jaxon by having me remove the top six allergens (wheat, dairy, soy, corn, nuts, and fish) from my diet while I nursed him. Despite my best effort there was still no change, so I stopped nursing cold turkey (OUCH!) and we started Jaxon on an elemental diet consisting of Neocate (an amino acid based formula), sweet potatoes, and butternut squash. We have recently been able to add green beans and ground turkey. We trial a new food every 4-6 weeks. He has failed food trials of rice, apples, pears, grapes, and peas. We hope to try chicken and other types of squash in the near future. We have two main problems at this time: Jaxon is too young to tell us when the food is hurting him until he starts puking. The second, the reaction is delayed anywhere from 3 days to 3 weeks, so introducing new foods is a long process.
Jaxon is steadily growing again. He is 27 pounds now at almost 17 months. He is beautiful with gorgeous blue eyed and blond hair. Jaxon’s smile combined with his daddy’s dimples is simply perfect. The scope he had a few months ago (only his second thus far) came back clean, meaning an eosinophil count of less than one. He sleeps through the night now and takes 3 hour naps every afternoon (heaven for mom!). As we try to move forward and struggle with his condition I will update this page and share our experience. One thing to note about this condition is that no one person is the same. Signs and symptoms are totally different. Diagnosis takes months to years in some cases. Each person reacts differently to each food. There is no “norm”. I simply plan on sharing our findings as Jaxon grows. This is in no way medical advice on treatment. This is only our experience with Jaxon.
I am scared for this coming year; the year he will realize he is different than the other kids. Until now I have been able to control every bite he puts into his mouth (except for the dog food he snuck into last week). I am afraid of losing control over his diet and I am scared of the possibility that one day he may need a NG or G tube. I am afraid of having to put locks on our pantry and refrigerator so he will not steal food at night as some other children with this condition have tried. I am afraid for his future for summer camp, scouts, birthdays, holidays, dates and other activities that all seem to revolve around FOOD! I am afraid he will be looked at like the dorky fiancé of Meg Ryan at the beginning of Sleepless in Seattle. I am afraid he may be ostracized by children (or adults) who just don’t understand. How sad will he be if he ends up sitting by himself at the lunch table at school? What will I say to him? So far the only thing I can make sound right in my mind and heart goes something like this: Our Heavenly Father loves us each individually and has given us each individual trials, this is your trial. Or I could just hold him and tell him I love him and that somehow the pain he will feel from being a little different is but a moment in our Heavenly Father’s great plan for each of us. These answers sound wonderful to me now, but I know when Jaxon comes to me with tears in his eyes over these very problems it will not be easy. I will have to fight the urge to yell at children teasing him or I will have to explain over and over again to adults who think this is all in my head. A poor girl in church a few weeks ago tried to hand him a cheese-it and I nearly fell out of my seat trying to stop him from popping it into his mouth. Anyway, sorry for my musings…this is what is constantly floating around in my heard, wondering how I will protect and comfort my baby when he is no longer a baby.
Jaxon was always a "pukey" baby. His older brother Daniel was too, so at first we just figured that was how our boys were. Jaxon was 7lbs. 11oz at birth. At first he gained weight slowly but steadily. I was nursing him and thought that it was going better with Jaxon than it ever did with Daniel. I had milk supply issues with Daniel, but Jaxon was a little champ when it came to eating. At 2 months he was in the 50th percentile. He was long and skinny and puked all the time, but 50% is good, right? Our floor was constantly covered in rags to mop up the "spit-up". Jaxon went through 4-8 outfits a day (including the 2-3 sets of PJs at night). His bedding had to be changed constantly. Laundry was never ending. We quickly started having him wear bibs to try and save the clothes, which were all stained yellow by this point. The bibs quickly became disgusting soaking rags hanging from his neck so we changed them often. On Sundays we would go to our 3 hour block of church meetings armed with 2-3 burp cloths, an extra outfit, a package of baby wipes, and of course 2-3 bibs. Sometimes that was not enough. The car seat was another issue. When he would puke in the car seat it would leak out the holes in the bottom, filling the car seat base and stinking up the car (remember Jaxon was born in June in Mesa, AZ). When we would pull the car seat out of the car a trail of puke would drip along behind us.
At 4 months Jaxon was in the 25 percentile and we thought adding some “real food” would help him gain weight and sleep through the night. He started eating Gerber rice cereal and we slowly added in bananas and other pureed fruits and vegetables around 6 months. His puking increased rapidly and the idea of him sleeping through the night was a joke. By 6 months he had dropped to the 3rd percentile and had stopped gaining weight. He was just over a mere 13lbs, not even doubling his birth weight. His wrists and ankles were all bone and he was still wearing some 0-3 month clothes. Jaxon was hungry constantly: nursing every 2 hours for 30-45 minutes. He was always constipated too and would grunt out little black balls like rabbit poo (sorry for the description).
What did the doctor say you ask? Good question. Of course by this time I had asked the doctor about the puking many times. But, staying in line with Murphy’s Law Jaxon would never puke when the doctor was in the room and my description of the problem evoked the response “all babies puke a little”. By the 6 month appointment the pediatrician could not dispute that there was something wrong. The problem was the lack of action! No referral to a specialist, no follow-up appointments, only the statement “let’s weigh and watch”. He wanted a weight check every 2 weeks. Pathetic! I decided to see the specialist on my own. I rapidly found out there is a great lack of qualified GI doctors in this area and the ones that are here are over booked. The best I could do was get was an appointment three months out. Not good enough! What could I do?
We are members of the Church of Jesus Christ of Latter-day Saints and we strongly believe in the power of prayer. I was given a blessing and so was Jaxon. After the blessing I felt that I would be able to find out how to care for him. A few nights later I went to one of my best friend’s baby shower. While there I talked with her sister-in-law who happened to be a CNA. She mentioned the possibility of pyloric stenosis. She was the third person to mention this condition and I really knew nothing about it. On the way home from the shower I called Johnny and told him that I was taking Jaxon to the ER the next morning and not leaving without answers. He thought I was a little quirky for planning a trip to the ER but he agreed that we were not going to get answers any other way. By this time Jaxon was almost 7 months old, his beautiful blue eyes had dark rings under them, there was a constant rash on his face and bottom, and the soft spot on his head was dipped inward. The next morning I took my older son to a friend’s home and planned for a camping trip to the ER. I was armed with bags of random things to entertain myself and a 7 month old for a week if necessary. The ER I choose was a new private hospital. We checked in and were taken to a room with a bed within minutes. It was a Friday morning, January 18, 2008. Jaxon was severely dehydrated and his potassium levels were non existent. He was on an IV almost the entire day while they tried to find us a room at a larger hospital. I should have planned the trip to the ER better knowing that no specialist would be working after noon on a Friday. By the time we were admitted late Friday night all we could do was camp out until Monday morning. My mom came out to help, which she always does because my parents are just amazing that way.
After a terrible week in the hospital full of a puking baby, horrible tests and a round of the flu Pyloric stenosis was ruled out and we were released with a whopping bill and no answers except the possibility of acid reflux, which was yet again, pathetic. The positive aftermath of a stay in the hospital was that we were able to see a GI specialist and a follow-up appointment was set. We started working with the GI, Dr. R. Montes and were able to set-up an endoscopy to biopsy Jaxon’s esophagus.
Jaxon was diagnosed with Eosinophilic Esophagitis (EE) February 2008. The symptoms in young children are similar to reflux, but it is a separate, more severe condition. We feel blessed that his condition is so minor compared to the extent of some other children we have met, but either way this condition is life altering. Jaxon is allergic to the protein in food, which causes eosinophils (a type of white blood cell) to build up in his esophagus. The build up causes his esophagus to become constricted and ringed (like the rings on a vacuum hose). After the build up of eosinophils he begins vomiting and has severe yeast infections on his bottom as well as rashes on his cheeks. One specialist told me that the rash on his bottom has nothing to do with what he eats, but obviously that is not true, especially for Jaxon. The rash is the first indication I have he is reacting to a new food. EE along with Eosinophilic Gastroenteritis (EG) and Eosinophilic Colitis (EC) have really only started being diagnosed in the last 10 years and there is so much doctors just don't know about them yet.
The most effective form of treatment in addition to an elemental diet consisting of amino acid based formula is not possible for small children. Treatment in the form of Flovent (swallowed not inhaled) has been effective in teens and adults. Budesonide is the treatment more frequently used with smaller children. Jaxon was at first put on prednisone for a month which helped him start growing again, but this medication can have very negative developmental effects. Luckily for our family we have not seen it affect him at all developmentally. Jaxon is currently off all medication except Omeprazole, the generic form of Prilosec. We tried Prevacid but he could not keep it down, even as a solutab mashed in his food.
We started trying to heal Jaxon by having me remove the top six allergens (wheat, dairy, soy, corn, nuts, and fish) from my diet while I nursed him. Despite my best effort there was still no change, so I stopped nursing cold turkey (OUCH!) and we started Jaxon on an elemental diet consisting of Neocate (an amino acid based formula), sweet potatoes, and butternut squash. We have recently been able to add green beans and ground turkey. We trial a new food every 4-6 weeks. He has failed food trials of rice, apples, pears, grapes, and peas. We hope to try chicken and other types of squash in the near future. We have two main problems at this time: Jaxon is too young to tell us when the food is hurting him until he starts puking. The second, the reaction is delayed anywhere from 3 days to 3 weeks, so introducing new foods is a long process.
Jaxon is steadily growing again. He is 27 pounds now at almost 17 months. He is beautiful with gorgeous blue eyed and blond hair. Jaxon’s smile combined with his daddy’s dimples is simply perfect. The scope he had a few months ago (only his second thus far) came back clean, meaning an eosinophil count of less than one. He sleeps through the night now and takes 3 hour naps every afternoon (heaven for mom!). As we try to move forward and struggle with his condition I will update this page and share our experience. One thing to note about this condition is that no one person is the same. Signs and symptoms are totally different. Diagnosis takes months to years in some cases. Each person reacts differently to each food. There is no “norm”. I simply plan on sharing our findings as Jaxon grows. This is in no way medical advice on treatment. This is only our experience with Jaxon.
I am scared for this coming year; the year he will realize he is different than the other kids. Until now I have been able to control every bite he puts into his mouth (except for the dog food he snuck into last week). I am afraid of losing control over his diet and I am scared of the possibility that one day he may need a NG or G tube. I am afraid of having to put locks on our pantry and refrigerator so he will not steal food at night as some other children with this condition have tried. I am afraid for his future for summer camp, scouts, birthdays, holidays, dates and other activities that all seem to revolve around FOOD! I am afraid he will be looked at like the dorky fiancé of Meg Ryan at the beginning of Sleepless in Seattle. I am afraid he may be ostracized by children (or adults) who just don’t understand. How sad will he be if he ends up sitting by himself at the lunch table at school? What will I say to him? So far the only thing I can make sound right in my mind and heart goes something like this: Our Heavenly Father loves us each individually and has given us each individual trials, this is your trial. Or I could just hold him and tell him I love him and that somehow the pain he will feel from being a little different is but a moment in our Heavenly Father’s great plan for each of us. These answers sound wonderful to me now, but I know when Jaxon comes to me with tears in his eyes over these very problems it will not be easy. I will have to fight the urge to yell at children teasing him or I will have to explain over and over again to adults who think this is all in my head. A poor girl in church a few weeks ago tried to hand him a cheese-it and I nearly fell out of my seat trying to stop him from popping it into his mouth. Anyway, sorry for my musings…this is what is constantly floating around in my heard, wondering how I will protect and comfort my baby when he is no longer a baby.
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