Little man has multiple FPIES triggers (the food protein that triggers a reaction/symptoms); however corn is his worst and it is the most difficult to avoid. Corn is in so many things.
I often get questions on where to start, or what to avoid. So, I wanted to have a specific reference list for places that are my 'go-to' for corn sourcing, I added a Corn Allergy page (see tab above or link here): http://fpiesmudpies.blogspot.com/p/corn-allergy.html
Showing posts with label corn intolerance. Show all posts
Showing posts with label corn intolerance. Show all posts
Sunday, July 21, 2013
Monday, March 26, 2012
Corn Freedom
Before I update about how the Alimentum RTF trial went, I wanted to take the opportunity to speak a little more about a corn allergy- the reason why we've been without a formula for so long.
Awareness needs to be raised for corn allergic individuals. A corn allergy is a difficult one to live with. A corn allergy is overwhelming when you first realize that is what is causing reactions to trigger. I read everything I could in journal articles but quickly found there wasn't enough information or enough known about the extents of a corn allergy; although there are a few good ones that give you a starting off point. I learned the most from other corn allergic people sharing their stories- things they learned, successes, fails, reactions, recipes....there are growing numbers of corn free forums/support groups of people sharing this information. These forums at least give you a beginning place to start and were a life-saver for me to helping get little man to a baseline and stop the inflammation in his body.
One site recently did a blog post on Corn Free Basics- a sort of survival tip for starting with a corn allergy on: Living it up Corn Free. You can read through this quickly and think "this isn't so hard"- well, consider that most of the survival items, little man is allergic to soy/legumes, dairy, wheat, rice,....
So how does a child with multiple food allergies survive and thrive? Formula becomes a life line. Unfortunately not always so for a corn allergic child, formula is in a corn syrup base and for many corn allergic children, this poses a severe problem. Thankfully this is not the case for all children. Some corn allergic follow what the is coined "corn lite" and don't seem to have noticeable or health threatening reactions from corn derived ingredients in trace or contamination amounts, including formula. These unfortunate corn allergic individuals can fortunately tolerate corn lite ingredients without it causing more harm than good. I've also heard FPIES families that have little ones with problems with the corn-y ingredients but after gut rest can handle corn-y ingredients (corn-lite) but still can not do full corn ingredients.
With a corn allergy, my personal "basics" surrounds being aware of all of the things that are corn derived and that could cause a reaction -- and then weighing how much that food is needed in the body with the risk of reaction and then deciding on if that benefit is worth the risk (of attempt to trial/introduce it). For an infant/toddler with severe multiple food allergies on a limited/restricted diet, the formula benefit is worth the risk of a trial. Trialing the formula is necessary, but that is not to be confused with living on a formula that a child is not thriving on. Our little man fell into that category: 5mo. of elemental formula's with increasing symptoms, progressing inflammation, decreasing protein and iron stores from the malabsorption secondary to the inflammation, generalized low quality of life for a little guy that threw up almost daily and lived many hours of the day in pain. Then it becomes about choosing the best for your child's quality of life and disease state- if the formula is doing more harm than good, then a discussion with the doctors and dietitians is in order- to of course rule out other conditions being in conjunction with and complicating the FPIES but also to find a suitable replacement for the formula. Keeping in mind that the good the formula does is well past caloric nourishment, it is about nutrients nourishment, so that needs to be weighed when considering reactions, symptoms and trace/contamination trigger exposure from the formula.
Another great and informative site is Corn Freedom, a mom of a corn allergic boy (not FPIES) that has a online support page. She has asked any and all corn allergic families to help her, help the corn allergic. To get corn recognized as a top allergen, to have it labeled, to have doctors recognize what illnesses corn could be at the root of, to have help for these families/corn allergic. To do this you can write to her with your story of corn allergies- when it started, what it's like, what it means to the allergic individual and what it means to the family, what it would mean to have corn listed as an allergen, what doctor diagnosed and follows, and anything else to share. You can submit your/your child's story to her on her support page here
I submitted our story:
A corn allergy has afflicted my son. My son is 2 1/2yrs.old and has Food Protein Induced Enterocolitis Syndrome (FPIES) and his allergies include corn, among other foods such as soy and dairy proteins. His reactions consist of damage to his gastrointestinal system by inflammatory cells recognizing the corn as an allergen, his body reacts by violently expelling the allergen with profuse vomit until bile followed by diarrhea, this can cause severe dehydration and acidosis for him. A reaction that isn’t this severe (from cross contamination or trace proteins) will bring on continued gut inflammation which results in ongoing pain for him. His diet is very limited by his allergies and severely so because of his corn allergy and this country’s dependence on corn. Because of his allergy, he has even reacted to elemental formula’s that severely allergic children typically thrive on. These formula’s are not an option for my son because of the corn syrup base. This affects his quality of life because as an infant, he needed reflux medications but the effects they had on his body landed him in the hospital for dehydration and failure to consume adequate nutrition. He was taken off of breast milk and put on elemental formula’s- which he consumed as his only source of nutrition for the next 5months until we saw an allergist familiar enough with corn allergies to save his life and advise us that yes, with him reactions to medications (all OTC medications have some degree of corn ingredients) as well as his inability to tolerate an elemental formula – a corn allergy was typically at this root. Over the next months, we removed all corn and our sick little boy began to heal. We finally were in control of his allergies, by the recognition and acceptance of his corn allergy and a lot of mommy research- thanks to other families sharing their tools for how to thrive with a corn allergy, we were able to control his allergy. Finding a nutritionally adequate diet without a formula was another challenge we are continually battling. Recognition of a corn allergy would save my son from having to undergo numerous and invasive tests and procedures, recognition of a corn allergy would raise awareness and appeal to formula companies that there are increasing numbers of infants who have to choose between controlling an allergy and avoiding daily pain and reactions/malabsorption or nourishing their child- what kind of a choice is that for a mother? Allergists have a difficult time recognizing that formula can cause a problem for a corn allergic if they have not cared for a child with a corn allergy and this is further disillusioned because of the dependency of formula companies on corn syrup assuring them that “typically kids with corn allergies don’t react to our formulas”….when the lives of these infants tell a different tale. Parents are left to manage this on their own, risking malnutrition in an infant because doctors can not help, and even turn their backs on these children….because of the poor recognition and awareness of corn allergy and how many things have corn and corn derived ingredients in them.
Corn is a complicated and difficult allergy trigger to have.
Wednesday, May 25, 2011
I am sure you have no idea...
I am sure I had no idea either. I am almost embarrassed to admit my ignorance towards corn and it's allergens. I am sad when I think of the months I kept my Little Man on a product that's base is corn (much less the "other" ingredients and vitamins in it that are derived from corn...that product being something that is supposed to sustain the life of a severely allergic infant/young child who can not tolerate a complete diet. I was told it was not possible to react to a "hypoallergenic" formula. Keeping in mind that, hypoallergenic does not mean non-allergenic. Non-allergenic = no such thing. I have learned so much.
I am not the only one who has had to learn on their own. I wanted to share some advice from some other educated corn allergic people. My first go-to was the Corn Free website. This women spent painstakingly oodles of hours putting together extensive lists of ingredients, that have almost memorized in my efforts to keep my son safe.
I have since joined a community on babycenter where moms come together to share their experiences and a very knowledgeable mom posted this: Considerations when dealing with corn allergy:
"Here is a short list of items that I have in my son's allergy binder. It is aimed at anyone who has to care for him should something happen to me, and focuses on things that I thought people would normally not think of. Feel free to add your own thoughts.
- NO dextrose IVs
- NO latex balloons, gloves, etc. (powdered with corn starch)
- NO vitamins
- NO rubbing alcohol
- Kosher for Passover items are generally considered safe in the corn-free community, but some are not. Generally, those designated Kosher for Passover by the Orthodox Union are safe. These will have a “U” inside an “O” and a “P” to the right. Kosher for Passover items are generally available in the early spring, though some are available year-round.
- His medicine must be compounded corn-free. You must do the research on the active and inactive ingredients because most pharmacists do not understand what all is made from corn.
- Grocery store produce and sometimes meat are washed with a corn-derived citric acid wash. To counter the effects of the produce wash, the produce must be washed and scrubbed with baking soda. Before buying meat, you must check with the store’s customer service to make sure they do not use any corn derivatives in their wash (mostly an issue with poultry).
- Some produce is also waxed. He CANNOT eat the outside of these commonly waxed items unless they are farm-fresh and verified to be wax-free. It is required by law that retailers display signs identifying which items have been waxed. Our grocery store’s list is: apple, cucumber, grapefruit, lemon, lime, melon, nectarine, orange, parsnip, peach, pepper, pineapple, plum, rutabaga, hard squash, sweet potato, tomato, yucca root.
- Vitamins are added to cow’s milk most often using corn oil or alcohol as a carrier. He CANNOT drink milk unless it has been confirmed with the manufacturer that no corn products were used in the vitamin addition.
- Corn can also hide in cheeses. Potential sources are: annatto (this yellow coloring often is extracted using corn oil or alcohol), enzymes or cultures (often grown on corn), and salt (iodized). There are very few cheeses safe for him and most are foreign.
- When contacting companies to verify corn-free status, you must specify that it does not matter if the corn protein is present or not, if it ever came from corn he can’t have it.
- In recipes, substitute potato starch for corn starch."
And, I have recently found a community on facebook that is run by Corn Freedom. Her son has a severe corn allergy, and she too has had to learn everything to keep him safe, and is thankfully sharing it. I wanted to share some advice that she recently posted:
I AM SURE YOU HAVE NO IDEA.by Corn Freedom.
When speaking with a "professional" whether in a store or on the phone always remember they are SURE of themselves. They are SURE there is no corn because to the best of their knowledge why would peppers be coated with corn? Why would peaches be coated with corn? Tomatoes? Why is it in their HUMMUS made with LEMON JUICE that's not labeled as concentrate and it's from the green bottle with the yellow top. They simply don't know. So YOU be SURE and don't buy it or don't eat it until you press for the information you are looking for.
I sometimes believe that there is no corn in a product because the person I am speaking with is so confident in their response. They are not thinking of our derivatives list, they are thinking about logic. There is NO logic on where corn is located in your products. It is squeezed into every vitamin, additive, flavoring, coloring, sweetener, lotion... no one who didn't need to know will actually know about these things.
Each time you educate yourself a little more you will realize that it's not them wanting to hurt you or they are less intelligent, it's just they simply do not know. So keep plugging along and if your questions are not answered by the first person, push for the next. Your health and the health of your family comes before being embarrassed by asking questions.
There are a few other useful websites for references, there is a lot you just need to learn on your own (unfortunately). I hope this post can help guide some of that learning process for those just beginning. I learn more everyday, through my son and for my son. Corn allergy awareness is on the rise, but we (corn allergic parents and individuals) need to continue to raise the awareness of the realities of a corn allergy.
I am not the only one who has had to learn on their own. I wanted to share some advice from some other educated corn allergic people. My first go-to was the Corn Free website. This women spent painstakingly oodles of hours putting together extensive lists of ingredients, that have almost memorized in my efforts to keep my son safe.
I have since joined a community on babycenter where moms come together to share their experiences and a very knowledgeable mom posted this: Considerations when dealing with corn allergy:
"Here is a short list of items that I have in my son's allergy binder. It is aimed at anyone who has to care for him should something happen to me, and focuses on things that I thought people would normally not think of. Feel free to add your own thoughts.
- NO dextrose IVs
- NO latex balloons, gloves, etc. (powdered with corn starch)
- NO vitamins
- NO rubbing alcohol
- Kosher for Passover items are generally considered safe in the corn-free community, but some are not. Generally, those designated Kosher for Passover by the Orthodox Union are safe. These will have a “U” inside an “O” and a “P” to the right. Kosher for Passover items are generally available in the early spring, though some are available year-round.
- His medicine must be compounded corn-free. You must do the research on the active and inactive ingredients because most pharmacists do not understand what all is made from corn.
- Grocery store produce and sometimes meat are washed with a corn-derived citric acid wash. To counter the effects of the produce wash, the produce must be washed and scrubbed with baking soda. Before buying meat, you must check with the store’s customer service to make sure they do not use any corn derivatives in their wash (mostly an issue with poultry).
- Some produce is also waxed. He CANNOT eat the outside of these commonly waxed items unless they are farm-fresh and verified to be wax-free. It is required by law that retailers display signs identifying which items have been waxed. Our grocery store’s list is: apple, cucumber, grapefruit, lemon, lime, melon, nectarine, orange, parsnip, peach, pepper, pineapple, plum, rutabaga, hard squash, sweet potato, tomato, yucca root.
- Vitamins are added to cow’s milk most often using corn oil or alcohol as a carrier. He CANNOT drink milk unless it has been confirmed with the manufacturer that no corn products were used in the vitamin addition.
- Corn can also hide in cheeses. Potential sources are: annatto (this yellow coloring often is extracted using corn oil or alcohol), enzymes or cultures (often grown on corn), and salt (iodized). There are very few cheeses safe for him and most are foreign.
- When contacting companies to verify corn-free status, you must specify that it does not matter if the corn protein is present or not, if it ever came from corn he can’t have it.
- In recipes, substitute potato starch for corn starch."
And, I have recently found a community on facebook that is run by Corn Freedom. Her son has a severe corn allergy, and she too has had to learn everything to keep him safe, and is thankfully sharing it. I wanted to share some advice that she recently posted:
I AM SURE YOU HAVE NO IDEA.by Corn Freedom.
When speaking with a "professional" whether in a store or on the phone always remember they are SURE of themselves. They are SURE there is no corn because to the best of their knowledge why would peppers be coated with corn? Why would peaches be coated with corn? Tomatoes? Why is it in their HUMMUS made with LEMON JUICE that's not labeled as concentrate and it's from the green bottle with the yellow top. They simply don't know. So YOU be SURE and don't buy it or don't eat it until you press for the information you are looking for.
I sometimes believe that there is no corn in a product because the person I am speaking with is so confident in their response. They are not thinking of our derivatives list, they are thinking about logic. There is NO logic on where corn is located in your products. It is squeezed into every vitamin, additive, flavoring, coloring, sweetener, lotion... no one who didn't need to know will actually know about these things.
Each time you educate yourself a little more you will realize that it's not them wanting to hurt you or they are less intelligent, it's just they simply do not know. So keep plugging along and if your questions are not answered by the first person, push for the next. Your health and the health of your family comes before being embarrassed by asking questions.
There are a few other useful websites for references, there is a lot you just need to learn on your own (unfortunately). I hope this post can help guide some of that learning process for those just beginning. I learn more everyday, through my son and for my son. Corn allergy awareness is on the rise, but we (corn allergic parents and individuals) need to continue to raise the awareness of the realities of a corn allergy.
Wednesday, November 24, 2010
Corn is in Everything!
I have a few corn website resources since we discovered corn being a trigger for Little Man. I wanted to do a post about it, as I have been finding new resources for corn allergies...and also finding something as reassuring as finding FPIES support groups....that there are other corn allergic people out there, facing the same challenges and obstacles to health.
The first one I found still has been my biggest "go-to" as she put a lot of work into her webpage to help corn allergic people. She provides a list of corn derived products, product names that could mean corn....it is at the very least a great list to know which ingredients I need to yield to, and check on....I always check everything for myself. You can not simply trust a doctor or a pharmacist, or a company customer service representative (no matter how well meaning)....or the ingredient listing. You need to know the ingredient source of all ingredients. Corn has many names and many things you wouldn't suspect corn to be a part of, has corn derivites; and many people simply do not recognize this to know. It is up to you, as the corn allergic person to check ingredients. Her website is: Corn Allergens
The next one I came across is: Corn free foods blog
This is an active blog and has provided some eye opening topics, discussions, articles. I follow this blog daily.
Another good blog to follow is: Live Corn free. Visit this site to sign a petition to get corn added in the top 8 Allergens.
Another one I just found is appropriatly named: a Zillion Uses for Corn. It is a quick-read-great eye opener for just how many things corn are in (wish I would have found it when I spent a few hours researching why Little man kept reacting to the sheetrock he was putting in his mouth, or the books he was eating!)...paper and gypsum board have corn in them!!
An article shared to me shed some light on why corn is in everything, it is: http://www.abmf.com/news/nabitor It is good to know why it is in everything because then you know when to suspect it might be in something. In short, it is a mold-inhibitor...so a preservative (for food and non-food).
There are many more, and the list grows. I have started a corn resources section on the side of my blog for those following that also have to worry about corn for their little ones (and my place to keep it all organized!).
Little Mans corn intolerance is quite sensitive. I get worried when I wonder if he'll ever outgrow it...being so sensitive to it and us taking so long to discover it, his last corn ingestions were in August, but then he did have an accidental ingestion, of sheetrock (we really need to get our basement finished - we started the remodel of the walls before Little man was born but we haven't had the time or money to finish mud/tape/painting it!). Since his anemia is better, he doesn't have the PICA he has had in the past so his sheet-rocking seeking obsession isn't as bad. And since the last time he accidently ingested it, he hasn't tried again -- maybe he finally associated that ingestion with his reaction.
The first one I found still has been my biggest "go-to" as she put a lot of work into her webpage to help corn allergic people. She provides a list of corn derived products, product names that could mean corn....it is at the very least a great list to know which ingredients I need to yield to, and check on....I always check everything for myself. You can not simply trust a doctor or a pharmacist, or a company customer service representative (no matter how well meaning)....or the ingredient listing. You need to know the ingredient source of all ingredients. Corn has many names and many things you wouldn't suspect corn to be a part of, has corn derivites; and many people simply do not recognize this to know. It is up to you, as the corn allergic person to check ingredients. Her website is: Corn Allergens
The next one I came across is: Corn free foods blog
This is an active blog and has provided some eye opening topics, discussions, articles. I follow this blog daily.
Another good blog to follow is: Live Corn free. Visit this site to sign a petition to get corn added in the top 8 Allergens.
Another one I just found is appropriatly named: a Zillion Uses for Corn. It is a quick-read-great eye opener for just how many things corn are in (wish I would have found it when I spent a few hours researching why Little man kept reacting to the sheetrock he was putting in his mouth, or the books he was eating!)...paper and gypsum board have corn in them!!
An article shared to me shed some light on why corn is in everything, it is: http://www.abmf.com/news/nabitor It is good to know why it is in everything because then you know when to suspect it might be in something. In short, it is a mold-inhibitor...so a preservative (for food and non-food).
There are many more, and the list grows. I have started a corn resources section on the side of my blog for those following that also have to worry about corn for their little ones (and my place to keep it all organized!).
Little Mans corn intolerance is quite sensitive. I get worried when I wonder if he'll ever outgrow it...being so sensitive to it and us taking so long to discover it, his last corn ingestions were in August, but then he did have an accidental ingestion, of sheetrock (we really need to get our basement finished - we started the remodel of the walls before Little man was born but we haven't had the time or money to finish mud/tape/painting it!). Since his anemia is better, he doesn't have the PICA he has had in the past so his sheet-rocking seeking obsession isn't as bad. And since the last time he accidently ingested it, he hasn't tried again -- maybe he finally associated that ingestion with his reaction.
Thursday, November 11, 2010
"Atypical" FPIES
FPIES "plus" is another name a GI doctor we saw recently coined Little Man's case. Atypical FPIES is what our (new, great and supportive) GI doctor has called it. A little puzzle to solve. I agree, it is a puzzle...we have long since called him our little puzzle as well. One piece fits over here but then the next piece doesn't fit like it should next to it....and so on and so on.....
I have theories as to why Little Man's FPIES has become so complex....most of them stem around the fact that we simply do not know anything about it for so many months....no clue why he was losing weight, why the formula's weren't working and the solids were a mess, why my elimination diet wasn't helping enough, why he had colic at 3mo. old and why he developed reflux after we started solids. He was a mystery to his doctors as well, no awareness of FPIES in the hospital where we have his care. We hope we are changing that, but in the meantime...we need them to catch up - quickly. We are very hopeful, and remain optimistic (who would guess I am actually a very optimistic person), that we have finally put together a team of medical professionals (Allergist, GI, Pediatrician, and Dietitian) that can recognize his FPIES, learn about it, and help us put the pieces together....one by one....
Right now, the puzzle is dumped out all over, and may even have pieces from someplace else mixed in....we need to learn if those pieces belong to this puzzle. We are back in the hospital hoping to sort through that a little more.
Little man's biggest triggers are dairy and corn....we know what corn has done to him, we are not sure what dairy would do and have zero interest in finding out because of how poorly he did on broken down dairy proteins and dairy in my diet. As I've mentioned before, corn is in everything -- so it is a tricky trigger to move away from. Most especially when it is a high sensitivity and oils and syrups also trigger the allergic response. We were hopeful that an elemental diet would get us to a baseline but after 5mo. on it and no baseline to be found; we knew we had to trial corn to see if this was the culprit....that piece to the puzzle was found and it is a big one. If getting his diagnosis was the "corners" to the puzzle, then narrowing down the corn trigger, we finally had all the "edges" to our puzzle....but now we are still left with the "middle" - the rest of the puzzle.
Right now the pieces that we are working on, and can't seem to find the way they fit - is the drop in hemoglobin causing severe anemia, the random bloody stools, the pain in his stomach, and his soy (is it or is it not a trigger for him?).
Moving away from corn in all forms meant stopping the elemental formula he was on, that he had been on for 5mo exclusively that continued to damage his GI tract. The plan was to put him on hemp milk to stop this inflammation and begin to heal his, now ravaged, gut. We knew the hemp milk would need fortifiers and a tiny menu to round out all the micronutrients a toddler needs for good brain growth and physical development. We were stuck in the puzzle for so many months trying to find his diagnosis, then we got stuck trying to find his baseline, and now we are stuck trying to find him adequate nutrition in this corn based society where corn is in everything (no offense to corn farmers intended here).
He has been so chronically ill from this affecting his gut for so long that he now continues to suffer the after effects of that. We keep searching for that right puzzle piece.....will we find it now?
I have theories as to why Little Man's FPIES has become so complex....most of them stem around the fact that we simply do not know anything about it for so many months....no clue why he was losing weight, why the formula's weren't working and the solids were a mess, why my elimination diet wasn't helping enough, why he had colic at 3mo. old and why he developed reflux after we started solids. He was a mystery to his doctors as well, no awareness of FPIES in the hospital where we have his care. We hope we are changing that, but in the meantime...we need them to catch up - quickly. We are very hopeful, and remain optimistic (who would guess I am actually a very optimistic person), that we have finally put together a team of medical professionals (Allergist, GI, Pediatrician, and Dietitian) that can recognize his FPIES, learn about it, and help us put the pieces together....one by one....
Right now, the puzzle is dumped out all over, and may even have pieces from someplace else mixed in....we need to learn if those pieces belong to this puzzle. We are back in the hospital hoping to sort through that a little more.
Little man's biggest triggers are dairy and corn....we know what corn has done to him, we are not sure what dairy would do and have zero interest in finding out because of how poorly he did on broken down dairy proteins and dairy in my diet. As I've mentioned before, corn is in everything -- so it is a tricky trigger to move away from. Most especially when it is a high sensitivity and oils and syrups also trigger the allergic response. We were hopeful that an elemental diet would get us to a baseline but after 5mo. on it and no baseline to be found; we knew we had to trial corn to see if this was the culprit....that piece to the puzzle was found and it is a big one. If getting his diagnosis was the "corners" to the puzzle, then narrowing down the corn trigger, we finally had all the "edges" to our puzzle....but now we are still left with the "middle" - the rest of the puzzle.
Right now the pieces that we are working on, and can't seem to find the way they fit - is the drop in hemoglobin causing severe anemia, the random bloody stools, the pain in his stomach, and his soy (is it or is it not a trigger for him?).
Moving away from corn in all forms meant stopping the elemental formula he was on, that he had been on for 5mo exclusively that continued to damage his GI tract. The plan was to put him on hemp milk to stop this inflammation and begin to heal his, now ravaged, gut. We knew the hemp milk would need fortifiers and a tiny menu to round out all the micronutrients a toddler needs for good brain growth and physical development. We were stuck in the puzzle for so many months trying to find his diagnosis, then we got stuck trying to find his baseline, and now we are stuck trying to find him adequate nutrition in this corn based society where corn is in everything (no offense to corn farmers intended here).
He has been so chronically ill from this affecting his gut for so long that he now continues to suffer the after effects of that. We keep searching for that right puzzle piece.....will we find it now?
Thursday, October 28, 2010
Just Peachy....
It had been a few days since little man had had anything to trial....well, unless you count the sheet rock or wood he keeps "sneaking". Last week, I had picked up nectarine's at a local produce store. I accidentally mixed a peach in with them. Well, maybe it was Divine Intervention as the nectarine's were not very good once I peeled them and I ended up throwing them away -- the last thing I need is to give him spoiled fruit! But the peach went into the fridge, maybe I'll eat it one day....
Well, the other night at dinner- he was "crying" for our food once again. He has done this in stages for the past 8mo....when his gut is inflamed, he doesn't even ask for food. When he is healing, he begs. It is enough to break a mother's heart in a million pieces and some days so hard to not just give him SOMETHING! I caved....I went to the fridge, where I knew the peach was - got a knife and sliced it up for him. I put it in teeny-tiny pieces (the size of his millet puffs) and he picked it up (although slippery) and ate it!! He picked up another piece and ate it!! He tried to eat a bigger piece and gagged on it....but he recovered quickly and went for more. He wanted to hold the peach, touch all aspects of it. He started to get frustrated that he couldn't pick up the pieces fast enough so I cut up a few more pieces and put it in his mesh feeder. He is a little old for a mesh feeder and at first didn't know what to do with it but he got it! He loves peaches!!
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Well, the other night at dinner- he was "crying" for our food once again. He has done this in stages for the past 8mo....when his gut is inflamed, he doesn't even ask for food. When he is healing, he begs. It is enough to break a mother's heart in a million pieces and some days so hard to not just give him SOMETHING! I caved....I went to the fridge, where I knew the peach was - got a knife and sliced it up for him. I put it in teeny-tiny pieces (the size of his millet puffs) and he picked it up (although slippery) and ate it!! He picked up another piece and ate it!! He tried to eat a bigger piece and gagged on it....but he recovered quickly and went for more. He wanted to hold the peach, touch all aspects of it. He started to get frustrated that he couldn't pick up the pieces fast enough so I cut up a few more pieces and put it in his mesh feeder. He is a little old for a mesh feeder and at first didn't know what to do with it but he got it! He loves peaches!!
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That was a big "no-no"- we trialed at night and we let him decide how much he wanted. But I have been so frustrated with his oral aversions and not wanting to trial, and his most interested times to eat are at dinner -- with the family. So, as I've done all along with this crazy illness -- I need to let him guide us a bit here. I've been "throwing" (ok, not quite literally) food at him over the past week- see if I could find something he was interested in, taste and texture. He tried persimmon, liked exploring this (freeze dried) but it came through whole in his diaper the next day and it is red- so that makes me too nervous right now. It is in the date family, so it may be too high fructose load for him to tolerate in large enough quantity's for a true trial anyway. He has tried buckwheat (good flavor if I do say so myself) but spit it out. He tried spinach- gagged and spit it out. Mango's, liked those the first day but won't let me come near him (they may have caused a big of a stomach discomfort as they are high in fructose, and his body has a hard time digesting high sugar load foods). But we have to start somewhere....
So, we've moved on to peaches. The next morning, I gave him what was left of the feeder (after putting it in the freezer all night)-he carried that around all morning and sucked it dry! He was so happy with his new treat!!
The rest of the peach (1/2 of it left), I cooked down and mashed. Little Man's aunt gave me a great idea to try....put the puree in a piping tool (used for decorating) and pipe little dots out on some freezer paper and freeze his puree- so he could have a pureed finger foods. So, that is what I did with the rest of the peach. Last night, while making dinner- I sat him down and gave him his new treat. He gobbled those up faster than I could finish making dinner!! Thanks Aunty M!!!!!
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Now, I was out of prepared peaches, but I had just picked up a few dozen more at the store; so I got some and cut it up like the previous night. He was more interested in the skin!! He wanted to "chew" on the skin! We let him explore it a bit, but I had to stop it soon....there is a spray put on most fresh fruits and veggies for preservation and this spray often contains corn byproducts! So, even if washed- it would be a chance I'm not ready to take yet for him. But it was really great to see him putting something with so much texture in his mouth.....
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So far, so good with peaches....and we celebrate our little victories. Could it be that we are FINALLY building little man a tiny menu?? Peaches are good source of vitamin A and C -- just what he needs!! Also, they even have a bit of iron in them. They would be a perfect addition to his diet. Now if everything else in Little Man's complex care could be "just peachy", we could celebrate more. But for now, I must go and prepare/puree/pipe/slice/freeze the rest of those peaches!!
Wednesday, August 11, 2010
I just want to feed my baby!
I haven't updated on how little man is actually doing in awhile, so I thought it was time to dedicate a post to that. We have been holding our breath all week, yesterday we let a little sigh out because Little man gained weight this past week! Ok, .2kg is not much of a weight gain but it is in the right direction.....a weight gain ON a formula made from hemp milk.
A little background to catch up to speed.....Little man has been on an elemental formula for 6mo. with little improvement (and some worsening) of his FPIES. Our allergist advised his symptoms sounded like he could have a corn trigger intolerance. We trialed corn and sure enough, it only took a teaspoon to find our answer. What does a corn intolerance have to do with not improving on an elemental formula you ask? Well, if the base of that formula is corn syrup, and that corn syrup as proteins extracted but it isn't enough for a very sensitive intolerance....you have a problem.
Little man started on elemental formula's in the last week of Feb, I was instructed to stop nursing him because we could not identify what he was reacting to in my breastmilk since I was already on an elimination diet and it wasn't taking away his symptoms. So, we put him on Elecare. He did not like it, and we ended up in the hospital because he refused to eat for a week. We were able to get him to take it at the hospital but he had daily vomiting on that and we were starting to literally force feed him. We felt trapped, unsure of what to do; we were supposed to just give it "adjustment" time- thinking he would accept it more and more and the throwing up would be less and less. Well, the opposite happened, he threw up more and more and accepted it less and less. We had already "failed" Nutramagin AA so there was one elemental formula left to try....Neocate. We switched to Neocate and the daily vomiting slowed down, and he began to thrive a bit. We continued to have random vomiting and lots of tummy aches, and we were not able to introduce any foods. This was not healing his tummy.
I have kept daily logs. I went back and added up his daily caloric intakes from May 1 - July 20....his daily average is a mere 541calories- much below his needs were at the time of 800-900calories. He was hanging on. I have always said his body is very efficient. Even when he was throwing up daily, still on breastmilk- he was barely maintaining weight but he wasn't losing. His body knew what to do- it knew where the essential calories needed to go. He has never been behind on his developmental milestones. He doesn't "look" like a sick child. For this we are very grateful. We know our constant care of him and countless sleepless nights do show in this. We have devoted our lives, our whole family life to caring for Little Man.
So, back to today- little man failed corn. He ended up in the hospital last month because he had gotten so sick- his little body that has been so resilient through all of this was having a hard time keeping up this time. We attempted to move away from Neocate with it's trace corn proteins so he could finally heal and re coop, to give his little body a fighting chance. To do this, I began to build him a formula with Hemp milk, safflower oil, and tapioca starch; but his reaction to tapioca starch just simply drained his already drained system.
At the hospital, Little Man was put back on part Neocate. Without recognizing FPIES, the doctors could not see how Neocate could be making him sick. We knew, but we agreed that he needed nutrition. A rock and a hard place. We hoped to find a threshold of tolerance. We didn't. The symptoms kept building, pain attacks started the night we came home from the hospital, up all night a few nights; and then the bloody/mucous stools returned.
I knew what I had to do....move away from the Neocate once again- more gradually this time, while building his formula with fortifiers we were sure he could tolerate. Mix Hemp milk, safflower oil, and cooked arrowroot starch, and blend. He has a formula adequate in calories. Optimal nutrition will come with introduction of foods but we can't get to that with continued gut assault.
I slowly reduced the Neocate in his hemp formula until last Thursday he had none. Unfortunately, this coincided with the crumb ingestion (see post from last Thursday). We waited it out, not changing much to his formula except tweaking the same ingredients to find the right texture/calories per oz./and carbohydrates per oz. he can tolerate. By Sunday he was whining too much for me to continue this way....was it tummy ache from the crumb still, was it tummy ache from hunger. I couldn't take the chance of it being from hunger so I added Neocate back into his hemp formula mix. It immediately filled his tummy. Sunday night was ok. By Monday afternoon, he was beginning to be a mess- colicky behavior all afternoon and evening, couldn't fall asleep and was awake for over 2hrs in the middle of the night. Tuesday diapers were frequent and liquid, and by the evening - mucous and blood; he screamed all evening long and had restless sleep. His tolerance for the trace corn proteins in Neocate becomes less and less.....I have to take it back out.
So, here we are again- back to no Necoate in his Hemp milk formula. Once again, this IS adequate in calories- AND he drinks the calories he needs to. He needs 1000calories/day adn he drinks at least that- somedays more! Except today, today he is limiting that intake a little - which has been his typical following pain/diarrhea/throwing up/reaction to a food/formula. It might take a few days for him to trust his food again. We can't keep messing with his ONE true source of nutrition....
To add to his FPIES intolerances he also has a carbohydrate intolerance (dissacharide deficiency)- his body can not digest too much carbohydrate at one time. So, I can't put too much in his formula. He may be able to tolerate EATING some carbohydrate between drinking his formula, to meet his daily needs but we can't FEED him anything!
So, here we are again- and still....rock and a hard place. What do we do next? Hopefully, we can hang on, heal his gut and get a food trial underway are my thoughts today.
A little background to catch up to speed.....Little man has been on an elemental formula for 6mo. with little improvement (and some worsening) of his FPIES. Our allergist advised his symptoms sounded like he could have a corn trigger intolerance. We trialed corn and sure enough, it only took a teaspoon to find our answer. What does a corn intolerance have to do with not improving on an elemental formula you ask? Well, if the base of that formula is corn syrup, and that corn syrup as proteins extracted but it isn't enough for a very sensitive intolerance....you have a problem.
Little man started on elemental formula's in the last week of Feb, I was instructed to stop nursing him because we could not identify what he was reacting to in my breastmilk since I was already on an elimination diet and it wasn't taking away his symptoms. So, we put him on Elecare. He did not like it, and we ended up in the hospital because he refused to eat for a week. We were able to get him to take it at the hospital but he had daily vomiting on that and we were starting to literally force feed him. We felt trapped, unsure of what to do; we were supposed to just give it "adjustment" time- thinking he would accept it more and more and the throwing up would be less and less. Well, the opposite happened, he threw up more and more and accepted it less and less. We had already "failed" Nutramagin AA so there was one elemental formula left to try....Neocate. We switched to Neocate and the daily vomiting slowed down, and he began to thrive a bit. We continued to have random vomiting and lots of tummy aches, and we were not able to introduce any foods. This was not healing his tummy.
I have kept daily logs. I went back and added up his daily caloric intakes from May 1 - July 20....his daily average is a mere 541calories- much below his needs were at the time of 800-900calories. He was hanging on. I have always said his body is very efficient. Even when he was throwing up daily, still on breastmilk- he was barely maintaining weight but he wasn't losing. His body knew what to do- it knew where the essential calories needed to go. He has never been behind on his developmental milestones. He doesn't "look" like a sick child. For this we are very grateful. We know our constant care of him and countless sleepless nights do show in this. We have devoted our lives, our whole family life to caring for Little Man.
So, back to today- little man failed corn. He ended up in the hospital last month because he had gotten so sick- his little body that has been so resilient through all of this was having a hard time keeping up this time. We attempted to move away from Neocate with it's trace corn proteins so he could finally heal and re coop, to give his little body a fighting chance. To do this, I began to build him a formula with Hemp milk, safflower oil, and tapioca starch; but his reaction to tapioca starch just simply drained his already drained system.
At the hospital, Little Man was put back on part Neocate. Without recognizing FPIES, the doctors could not see how Neocate could be making him sick. We knew, but we agreed that he needed nutrition. A rock and a hard place. We hoped to find a threshold of tolerance. We didn't. The symptoms kept building, pain attacks started the night we came home from the hospital, up all night a few nights; and then the bloody/mucous stools returned.
I knew what I had to do....move away from the Neocate once again- more gradually this time, while building his formula with fortifiers we were sure he could tolerate. Mix Hemp milk, safflower oil, and cooked arrowroot starch, and blend. He has a formula adequate in calories. Optimal nutrition will come with introduction of foods but we can't get to that with continued gut assault.
I slowly reduced the Neocate in his hemp formula until last Thursday he had none. Unfortunately, this coincided with the crumb ingestion (see post from last Thursday). We waited it out, not changing much to his formula except tweaking the same ingredients to find the right texture/calories per oz./and carbohydrates per oz. he can tolerate. By Sunday he was whining too much for me to continue this way....was it tummy ache from the crumb still, was it tummy ache from hunger. I couldn't take the chance of it being from hunger so I added Neocate back into his hemp formula mix. It immediately filled his tummy. Sunday night was ok. By Monday afternoon, he was beginning to be a mess- colicky behavior all afternoon and evening, couldn't fall asleep and was awake for over 2hrs in the middle of the night. Tuesday diapers were frequent and liquid, and by the evening - mucous and blood; he screamed all evening long and had restless sleep. His tolerance for the trace corn proteins in Neocate becomes less and less.....I have to take it back out.
So, here we are again- back to no Necoate in his Hemp milk formula. Once again, this IS adequate in calories- AND he drinks the calories he needs to. He needs 1000calories/day adn he drinks at least that- somedays more! Except today, today he is limiting that intake a little - which has been his typical following pain/diarrhea/throwing up/reaction to a food/formula. It might take a few days for him to trust his food again. We can't keep messing with his ONE true source of nutrition....
To add to his FPIES intolerances he also has a carbohydrate intolerance (dissacharide deficiency)- his body can not digest too much carbohydrate at one time. So, I can't put too much in his formula. He may be able to tolerate EATING some carbohydrate between drinking his formula, to meet his daily needs but we can't FEED him anything!
So, here we are again- and still....rock and a hard place. What do we do next? Hopefully, we can hang on, heal his gut and get a food trial underway are my thoughts today.
Sunday, August 8, 2010
Speaking of support, part 2
As I was checking on my blog this morning, getting ready to put a long overdue post on the great support I have through this journey, I noticed a comment on my post from yesterday. (I will insert it here so you don't have to scroll back down).
It reads:
Hi Joy
My name is Suna and I'm from Australia, my little fella doesnt have FPIES but he does have the severe mucous stools and diarrhea and is on a limitted diet and neocate. I just wanted to let you know that we have an active yahoo neocatekids support group here in oz and we used to have a lady post a few years ago from the U.S.A whose little girl was severely allergic to corn and the starches and she ordered the british or Australian neocate which apparently doesnt have the corn syrup solids in it and her little one finally began thriving, it was a big hassle getting it in but may be something you can investigate if the hemp stuff goes pear shaped. You are an amazing Mum and I wish you and your little one all the best.
Love Suna in Oz XXX
Again, more support- from people we don't even know but know how hard it is to have a child with multiple food allergies and want to help. There is a connection with these mom's...when you've been through/are going through such a difficult thing with your child. No mom wants to hear of another child having to endure this, but it is so helpful when we can share our experiences.
Could you imagine? Neocate made without corn syrup solids that my little man can thrive on?
So, I found this: http://www.nutricia.com.au/clinical/neocate/neocateadvance.aspx
and sure enough, no corn syrup solids- it is GLUCOSE. This could potentially come from corn (as dextrose does)- or maybe not, being that it is not the USA. I will find that out but even so- it may not (and shouldn't) be an issue when it is strained down to that level. AND the other bonus- glucose is a carbohydrate source his body can absorb 100%- this is broken down ready for cells to absorb/utilize...he doesn't need enzymes to break it down. This product could potentially meet so many of his needs....
Now to get a can.....
It reads:
Hi Joy
My name is Suna and I'm from Australia, my little fella doesnt have FPIES but he does have the severe mucous stools and diarrhea and is on a limitted diet and neocate. I just wanted to let you know that we have an active yahoo neocatekids support group here in oz and we used to have a lady post a few years ago from the U.S.A whose little girl was severely allergic to corn and the starches and she ordered the british or Australian neocate which apparently doesnt have the corn syrup solids in it and her little one finally began thriving, it was a big hassle getting it in but may be something you can investigate if the hemp stuff goes pear shaped. You are an amazing Mum and I wish you and your little one all the best.
Love Suna in Oz XXX
Again, more support- from people we don't even know but know how hard it is to have a child with multiple food allergies and want to help. There is a connection with these mom's...when you've been through/are going through such a difficult thing with your child. No mom wants to hear of another child having to endure this, but it is so helpful when we can share our experiences.
Could you imagine? Neocate made without corn syrup solids that my little man can thrive on?
So, I found this: http://www.nutricia.com.au/clinical/neocate/neocateadvance.aspx
and sure enough, no corn syrup solids- it is GLUCOSE. This could potentially come from corn (as dextrose does)- or maybe not, being that it is not the USA. I will find that out but even so- it may not (and shouldn't) be an issue when it is strained down to that level. AND the other bonus- glucose is a carbohydrate source his body can absorb 100%- this is broken down ready for cells to absorb/utilize...he doesn't need enzymes to break it down. This product could potentially meet so many of his needs....
Now to get a can.....
Tuesday, August 3, 2010
Honeymoon period
This is what Little Man's daddy and I have coined the time period when things look like they are going to work out and finally start to improve and "coast" on this rollar coaster ride for awhile.....right before we hit the wall and fall off the bridge.
Please,please,please dear Lord - I PRAY this is not one of those times. Little Man has been doing SO wonderfully the past few days....I lack the adquate words to describe the giddiness that I am having a more and more difficult time keeping a lid on! My little man is SO happy....could this be? Could we have finally found something to help him finally thrive? I can barely contain the anticipation of the next days- watching him be so happy, hoping for things to stay this way (and continue to get better so we can begin food trials).
Little man had a endoscopy in March, he just had the repeat one 2weeks ago. The first endoscopy, the inflammation wasn't quite visable but the biopsy's told the story...."non-specific inflammation", they kept saying. Now, on the re-scope- the inflammation was "patchy" and visable on scope (so yes, worse) and confirmed as worse on biopsy.
Corn fail has sensitized his system and it is almost so identical to when we started experimenting with supplemental formula bottles and I was still nursing- he was then reacting to trace proteins in my diet and we couldn't figure out why he wasn't gaining weight...and he just kept growing in his sensitivities....
Certainly makes a lot of sense to me, now to just move away from those trace proteins again.....they weren't ok in my breastmilk, why would they be ok in a formula? Clearly, it's not (for my guy who is sensitve to corn)....just have to clarify as kiddo's who are ok with corn thrive so well on the formula's and that is SO great but this just makes so much sense as to why our little man has been so super sensitive and so far away from a baseline for so many months. And why his scope had more inflammation after so many months on an exclusive elemental diet than before.
We re-initiated Neocate in his hemp milk formula, we began immediatly to see his inflammatory markers cascade of symptoms; we saw this plateau off - just right before we began to see blood in his stool. I keep logs of his caloric intakes (everyday since April), the past 10days since dismissal from the hospital, Little Man has been consuming an average of over 1000cal/day (he used to average around 600cal/day). He had a weight check today, he is down again. My theory of what is happening is that his system was assualted by the trace corn proteins in Neocate (once again, higher sensitivy after corn fail), it continued to assualt until it bled his intestines, now he is malabsorbing nutrients again. Time to make some changes....stay tuned....
Please,please,please dear Lord - I PRAY this is not one of those times. Little Man has been doing SO wonderfully the past few days....I lack the adquate words to describe the giddiness that I am having a more and more difficult time keeping a lid on! My little man is SO happy....could this be? Could we have finally found something to help him finally thrive? I can barely contain the anticipation of the next days- watching him be so happy, hoping for things to stay this way (and continue to get better so we can begin food trials).
Little man had a endoscopy in March, he just had the repeat one 2weeks ago. The first endoscopy, the inflammation wasn't quite visable but the biopsy's told the story...."non-specific inflammation", they kept saying. Now, on the re-scope- the inflammation was "patchy" and visable on scope (so yes, worse) and confirmed as worse on biopsy.
Corn fail has sensitized his system and it is almost so identical to when we started experimenting with supplemental formula bottles and I was still nursing- he was then reacting to trace proteins in my diet and we couldn't figure out why he wasn't gaining weight...and he just kept growing in his sensitivities....
Certainly makes a lot of sense to me, now to just move away from those trace proteins again.....they weren't ok in my breastmilk, why would they be ok in a formula? Clearly, it's not (for my guy who is sensitve to corn)....just have to clarify as kiddo's who are ok with corn thrive so well on the formula's and that is SO great but this just makes so much sense as to why our little man has been so super sensitive and so far away from a baseline for so many months. And why his scope had more inflammation after so many months on an exclusive elemental diet than before.
We re-initiated Neocate in his hemp milk formula, we began immediatly to see his inflammatory markers cascade of symptoms; we saw this plateau off - just right before we began to see blood in his stool. I keep logs of his caloric intakes (everyday since April), the past 10days since dismissal from the hospital, Little Man has been consuming an average of over 1000cal/day (he used to average around 600cal/day). He had a weight check today, he is down again. My theory of what is happening is that his system was assualted by the trace corn proteins in Neocate (once again, higher sensitivy after corn fail), it continued to assualt until it bled his intestines, now he is malabsorbing nutrients again. Time to make some changes....stay tuned....
Saturday, July 31, 2010
Screams in the night....
Little man has been having a lot of pain at night, we are not sure why. Last night he did settle ok with a bottle when he woke up (he ate half his daily intake through the night - things got fuzzy getting up so many times with him last night!!).
Earlier this week, we had 2 nights where the screaming reached levels it has not in a long time- his pain was inconsolable and intense!! I went as far as the ER parking lot...but didn't go in. I am having a trust issue with doctors I do not know right now and I was afraid it would once again be suggested that I am malnourishing him. Being so "fresh" from the hospital still, I couldn't bring myself to go through that again - I may have a breakdown! One of the ways I have learned to cope is that I do not "deal with" doctors that do not trust me, and I them. So, being in the hosptial among many who did not understand FPIES and how it is affecting Little Man was very, very difficult for Little Man's daddy and I to cope with. So, we waited it out- together through the night, passing Little Man back and forth while we tried to steal moments of sleep through his peaks and valleys of pain and we brought him to our pediatrician's office first thing in the morning. Our pediatrician was not in, so we saw another one in her office. Intussusception has been brought up in the past and it was again at this appointment. Unfortunatly there isn't much to "test" for unless he is having an attack (if it is slipping in and out). So, if these continue to happen - we need to make a trip to the ER for evaluation.
The other piece of the puzzle is the continued maroon throughout his stools. I don't know what else would cause maroon stools mixed in with the green from the formula when you are on a diet of white liquid. So, I brought it in for a sample and his pediatrician ordered a test....it was confirmed a few hours later that what we are seeing is in fact blood. But now to figure out why. Is it because of the continued assualt from corn proteins? Is it from the possible Intussusception? Is it from the irritation in his stomach lining? What is the pain in the middle of the night from? I think if we can solve one question we'll have our answer for the other....and we are just one step (one close step) away from his true baseline.
Earlier this week, we had 2 nights where the screaming reached levels it has not in a long time- his pain was inconsolable and intense!! I went as far as the ER parking lot...but didn't go in. I am having a trust issue with doctors I do not know right now and I was afraid it would once again be suggested that I am malnourishing him. Being so "fresh" from the hospital still, I couldn't bring myself to go through that again - I may have a breakdown! One of the ways I have learned to cope is that I do not "deal with" doctors that do not trust me, and I them. So, being in the hosptial among many who did not understand FPIES and how it is affecting Little Man was very, very difficult for Little Man's daddy and I to cope with. So, we waited it out- together through the night, passing Little Man back and forth while we tried to steal moments of sleep through his peaks and valleys of pain and we brought him to our pediatrician's office first thing in the morning. Our pediatrician was not in, so we saw another one in her office. Intussusception has been brought up in the past and it was again at this appointment. Unfortunatly there isn't much to "test" for unless he is having an attack (if it is slipping in and out). So, if these continue to happen - we need to make a trip to the ER for evaluation.
The other piece of the puzzle is the continued maroon throughout his stools. I don't know what else would cause maroon stools mixed in with the green from the formula when you are on a diet of white liquid. So, I brought it in for a sample and his pediatrician ordered a test....it was confirmed a few hours later that what we are seeing is in fact blood. But now to figure out why. Is it because of the continued assualt from corn proteins? Is it from the possible Intussusception? Is it from the irritation in his stomach lining? What is the pain in the middle of the night from? I think if we can solve one question we'll have our answer for the other....and we are just one step (one close step) away from his true baseline.
Sunday, July 18, 2010
Between a rock and a hard place...
When you can't go backwards and you're stuck with how to move forward....where do you go?
I know Little Man will outgrow this one day, my goal has been to get him thriving in the meantime. I don't want to just 'get by' and "survive" the next 1-3yrs...if he were pain free and not throwing up every few days and maybe able to tolerate even just 1-3foods; it would be a consideration. But the trace proteins of corn in the Neocate were keeping him from this - his gut remained inflammed and continued assualt and this would keep him from tolerating any foods and is likely the culprit of this possible carbohydrate maldigestion issue.
So, the choices are:
1. Stay on (go back to) Neocate and have continued gut assualt but know that his brain is fed. No foods for the next 1-2yrs, along with continued throwing up, continued mucous stools, continued pain with ingestion of anything, and off and on again agitation/fussiness/colic- whatever you call it- clearly uncomfortable. Risk continued food fails (because of gut inflammation and unknown consequences of that) and him being sick over and over again- and then not even wanting his Neocate. Also, this isn't just about him- I have 3 other boys who this is affecting daily as well, if we have a choice to get better than this....how can we not take it?
So, brings us to, choice
2. Hemp milk and build him a formula...risk him being sick while we tease out which ingredients he can tolerate as fortifiers. Risk him losing weight while we look for ways to fortify his formula. Move away from FPIES triggers and gut inflammation and be able to see more cleary where all his almost daily pain for the past 9+mo is coming from.
Right now, we're stuck- he does not tolerate the carbohydrates we are adding to his formula....I have to choose between giving him unbearable gas, and runny stools to give him a carbohydrate or give him plain Hemp milk and have him hungry, but pain free, from no carbohydrate.
He is so tired today, but I do not feel it is only from the plain Hemp milk only diet- I feel it is from the tapioca, sugar, and potato causing so much distress that is exhausting him because he can't sleep through it, also the watery diarrhea from the maldigested carbohydrate causing some dehydration. I hope he pops out of it soon. I hope GI agrees to see him SOON. We are in need of GI doctors input for further guidance. I could go it alone and guess, but I'd rather have some medical input...
I amtempted to go back to tapioca starch and give him enzymes....might be worth a try - I don't know. Also thinking of getting a meat trial underway. Will need grass-fed (no soy, no corn) beef, lamb or pork.
I know Little Man will outgrow this one day, my goal has been to get him thriving in the meantime. I don't want to just 'get by' and "survive" the next 1-3yrs...if he were pain free and not throwing up every few days and maybe able to tolerate even just 1-3foods; it would be a consideration. But the trace proteins of corn in the Neocate were keeping him from this - his gut remained inflammed and continued assualt and this would keep him from tolerating any foods and is likely the culprit of this possible carbohydrate maldigestion issue.
So, the choices are:
1. Stay on (go back to) Neocate and have continued gut assualt but know that his brain is fed. No foods for the next 1-2yrs, along with continued throwing up, continued mucous stools, continued pain with ingestion of anything, and off and on again agitation/fussiness/colic- whatever you call it- clearly uncomfortable. Risk continued food fails (because of gut inflammation and unknown consequences of that) and him being sick over and over again- and then not even wanting his Neocate. Also, this isn't just about him- I have 3 other boys who this is affecting daily as well, if we have a choice to get better than this....how can we not take it?
So, brings us to, choice
2. Hemp milk and build him a formula...risk him being sick while we tease out which ingredients he can tolerate as fortifiers. Risk him losing weight while we look for ways to fortify his formula. Move away from FPIES triggers and gut inflammation and be able to see more cleary where all his almost daily pain for the past 9+mo is coming from.
Right now, we're stuck- he does not tolerate the carbohydrates we are adding to his formula....I have to choose between giving him unbearable gas, and runny stools to give him a carbohydrate or give him plain Hemp milk and have him hungry, but pain free, from no carbohydrate.
He is so tired today, but I do not feel it is only from the plain Hemp milk only diet- I feel it is from the tapioca, sugar, and potato causing so much distress that is exhausting him because he can't sleep through it, also the watery diarrhea from the maldigested carbohydrate causing some dehydration. I hope he pops out of it soon. I hope GI agrees to see him SOON. We are in need of GI doctors input for further guidance. I could go it alone and guess, but I'd rather have some medical input...
I amtempted to go back to tapioca starch and give him enzymes....might be worth a try - I don't know. Also thinking of getting a meat trial underway. Will need grass-fed (no soy, no corn) beef, lamb or pork.
Monday, June 28, 2010
Hemp Milk
Given Little Man's symptoms since corn fail, Dr.P at CHOP has advised that we need to get him off of Neocate as soon as we can. He advises Hemp milk as a good starting alternative. Of course, it will need fortifiers as it is low in protein and fats and just plain calories but one step at a time- we need to see if he'll drink it. Dr.P said if he won't take it at first, to mix it 1/2 and 1/2 with his formula for a few bottles but really try and get him on the 100% Hemp as soon as possible. He really feels that his symptoms and extreme sensitivity, as well as continued issues since starting elemental are related to the corn intolerance and trace proteins in the Neocate.
He also agrees that we should hold off on food trials of FPIES trigger foods until little man is to a baseline and healthier...he has been just getting so much sicker by the day and it is so hard to see him go down this road of not thriving again. He advises, get him on the Hemp and get him eating and tolerating this, then get some fruits and veggies in his "safe/pass" foods and then when you have him built up to a good baseline, trial a grain and a meat (these can be iffy so have to proceed with caution and it's pretty much a guess work with FPIES to which grains and which meats they can tolerate).
I'm exhausted since corn fail, but so is little man - he falls asleep at random times throughout the day...I walked into the living room today and he had just crashed asleep on the couch, he usually requires us to rock him to sleep. Ok, so maybe it is a good thing- maybe he is so much more relaxed since we are able to give him ibuprofen that isn't hurting his belly and so he is catching up on some sleep. I would be reassured by that if he actually looked like he slept when he woke up, or if he acted like it- but he looks and acts so tired.
I ordered the Hemp milk online this morning, overnight shipping- should be here tomorrow....hopefully he likes the taste! Thinking of having him on something that is truly nourishing him and healing his gut- getting to see him pain free and distress free, and maybe even start passing some foods gives me chills of excitement!
He also agrees that we should hold off on food trials of FPIES trigger foods until little man is to a baseline and healthier...he has been just getting so much sicker by the day and it is so hard to see him go down this road of not thriving again. He advises, get him on the Hemp and get him eating and tolerating this, then get some fruits and veggies in his "safe/pass" foods and then when you have him built up to a good baseline, trial a grain and a meat (these can be iffy so have to proceed with caution and it's pretty much a guess work with FPIES to which grains and which meats they can tolerate).
I'm exhausted since corn fail, but so is little man - he falls asleep at random times throughout the day...I walked into the living room today and he had just crashed asleep on the couch, he usually requires us to rock him to sleep. Ok, so maybe it is a good thing- maybe he is so much more relaxed since we are able to give him ibuprofen that isn't hurting his belly and so he is catching up on some sleep. I would be reassured by that if he actually looked like he slept when he woke up, or if he acted like it- but he looks and acts so tired.
I ordered the Hemp milk online this morning, overnight shipping- should be here tomorrow....hopefully he likes the taste! Thinking of having him on something that is truly nourishing him and healing his gut- getting to see him pain free and distress free, and maybe even start passing some foods gives me chills of excitement!
Wednesday, June 23, 2010
Corn is in EVERYTHING!!!
Ok, really- I knew this...we are a corn based nation...but when you don't have to stop and think about every additive to everything, you simply don't think about it.
Little man threw up again last night, not terribly violently- just 2 large amounts and he was pretty much done, so could've been a couple of things: 1.large volume in short time period or 2. pedialyte.
We had a little bit of a formula supplier mix up and kinda ran a little short yesterday, not that it made too much of a difference because he hasn't been wanting much formula anyway but he went a few hours without eating, followed by a large ingestion of formula and pedialyte -- so,so hot out yesterday, and we were out in in for awhile running errands in the afternoon and at his big brothers baseball game in the evening and since I didn't have enough formula to give him, he had pedialyte to be sure he was staying hydrated.
I have been worried about the possibility of corn in pedialyte so I sent Abbott Nutrition and e-mail inquiry; I got a quick response this morning only to have my suscipions confirmed....sigh, it's all corn- the dextrose is corn derived and so is the citric acid. Sigh.
Little man drinks it well after a reaction and with repeated vomiting, emptying your stomach until bile followed by loose stools -- it is a good thing to have something to replenish those losses. So we were glad to have it in our treatment options for him, to be able to manage this at home, and help him recooperate from his reactions. Sigh.
He isn't feeling well today but is down for his 2nd nap, and we are told his corn-free compounded ibuprofen is ready at Walgreens; so hopefully he will feel better tonight/tomorrow.
Check back later because we are giving Samuel a second first birthday tonight. His brothers are so excited!! We finally got around to getting him some presents, and this time he can blow out the candle on his "cake".
Little man threw up again last night, not terribly violently- just 2 large amounts and he was pretty much done, so could've been a couple of things: 1.large volume in short time period or 2. pedialyte.
We had a little bit of a formula supplier mix up and kinda ran a little short yesterday, not that it made too much of a difference because he hasn't been wanting much formula anyway but he went a few hours without eating, followed by a large ingestion of formula and pedialyte -- so,so hot out yesterday, and we were out in in for awhile running errands in the afternoon and at his big brothers baseball game in the evening and since I didn't have enough formula to give him, he had pedialyte to be sure he was staying hydrated.
I have been worried about the possibility of corn in pedialyte so I sent Abbott Nutrition and e-mail inquiry; I got a quick response this morning only to have my suscipions confirmed....sigh, it's all corn- the dextrose is corn derived and so is the citric acid. Sigh.
Little man drinks it well after a reaction and with repeated vomiting, emptying your stomach until bile followed by loose stools -- it is a good thing to have something to replenish those losses. So we were glad to have it in our treatment options for him, to be able to manage this at home, and help him recooperate from his reactions. Sigh.
He isn't feeling well today but is down for his 2nd nap, and we are told his corn-free compounded ibuprofen is ready at Walgreens; so hopefully he will feel better tonight/tomorrow.
Check back later because we are giving Samuel a second first birthday tonight. His brothers are so excited!! We finally got around to getting him some presents, and this time he can blow out the candle on his "cake".
Sunday, June 20, 2010
Happy Father's Day!!
Ok, so I am running a little late on my Father's Day wishes! My husband is a great father and provider and teacher to our little guys, we will always be grateful for the extra time he gets to spend with them...being a Mr.Mom on his off-shift days! That is how he got to spend his Father's Day since I worked this weekend.
Samuel has been declining again, I'm assuming it is because of his reaction to corn 3days ago. But it reminds me of right before the hosptial stay- he is self limiting his formula and is now down to less than half of what he needs in a day to grow and gain weight. He simply does not even ask to eat and refuses when we try. He doesn't seem to be too bothered by it, or hungry....until tonight- he was particularly fussy most of the evening. So, I decided to give him some motrin to see if this would help. 4hours later, he emptied the contents of his stomach. Motrin, I had been starting to question his tolerance of -- clearly helps him with the pain but have been getting that gnawing feeling that there may be something in it that is still objecting to his system...now, I'm thinking I was right -- there must be corn in it. Dr.P at CHOP did say there is somewhere that compunds medications corn-free...we need to find out more about that because little man needs something to help him through the pain he experiences. If we adults had to experience that same pain- we would be asking for a morphine drip, I have no doubts.
This FPIES is a monster rollar coaster ride. One day you feel like you're prepared and ready for the challenges and the next it knocks you right over.
Faith, faith is a good thing to have...I have a strong faith and I do know without any doubts that God has given us our little man for a reason; and he has taught us so much already, and not just about FPIES but about instincts, patience, perserverance, love from brothers, devotioin of husbands (ie daddy), love and support of family and friends all around us, and about Faith.
Well, now he's up crying again....tickets please...
Samuel has been declining again, I'm assuming it is because of his reaction to corn 3days ago. But it reminds me of right before the hosptial stay- he is self limiting his formula and is now down to less than half of what he needs in a day to grow and gain weight. He simply does not even ask to eat and refuses when we try. He doesn't seem to be too bothered by it, or hungry....until tonight- he was particularly fussy most of the evening. So, I decided to give him some motrin to see if this would help. 4hours later, he emptied the contents of his stomach. Motrin, I had been starting to question his tolerance of -- clearly helps him with the pain but have been getting that gnawing feeling that there may be something in it that is still objecting to his system...now, I'm thinking I was right -- there must be corn in it. Dr.P at CHOP did say there is somewhere that compunds medications corn-free...we need to find out more about that because little man needs something to help him through the pain he experiences. If we adults had to experience that same pain- we would be asking for a morphine drip, I have no doubts.
This FPIES is a monster rollar coaster ride. One day you feel like you're prepared and ready for the challenges and the next it knocks you right over.
Faith, faith is a good thing to have...I have a strong faith and I do know without any doubts that God has given us our little man for a reason; and he has taught us so much already, and not just about FPIES but about instincts, patience, perserverance, love from brothers, devotioin of husbands (ie daddy), love and support of family and friends all around us, and about Faith.
Well, now he's up crying again....tickets please...
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