"Mother's are meant to nurture, and fathers to protect. It is so obvious how this [FPIES] would wreak havoc on those roles. Dads have their own mind trip of not being able to protect and fix this. And we hurt so terribly for our babies..." (thanks Nichole!)
More words from other FPIES moms. We all echo the same thing in one form or another...the moms going through the same mind games of not being able to play our role.
We, moms want to nurture - we need to nuture, our babies. Our babies wouldn't be here if we didn't have this drive. The drive to stay up all night with a crying baby, to find them nourishment for their body- whether that be a formula that can tolerate, or an elimination diet to nurse them, to push through when we're told we're over-reacting or crazy, or seeking attention, or first-time moms, or not coping 4th time moms. To push through all of this, to push our own pride to the side and continue on for our children. Or, to leave all of that behind and go it alone....neither the easy choice. Tough decisions to make for the health of our children.
Dad's constant mind games because they only want to protect, protect from this being real, from facing the reality of a chronic illness and what that does to a family structure, to protect both mother and child from unlistening specialists who tell you that you are malnourishing your child, when all you've done is protect them, sacrifice so much for them, and fight for their health and well being.
The reality is dad's can't fix this and mom's can't love it out. FPIES robs the natural order of things. But, to accept that this is where God wants us, that is peace. Our Little man is our gift...well, he's our gift #4, from God. Each of our gifts have continued to give us treasures beyond measure. Right now, we're in a gold mine of treasures with little man....if only we can continue to hold on to our Faith and trust that He knows our inner strength, that He only gives us what we can handle, and that He has his plans for us.
Plans to make me stronger when this was so very hard for so many months to listen to my baby in pain, day and night -- with little to do for him. So that when I was handed something to do- I now can't do enough. I want other moms to know they are not alone, I want to help, I want to provide hope to other families, mostly I want to empower other mom's the way I was empowered when I found FPIES and it FIT what my little man was going through. Empowered when I watched the YouTube video of Jack that could've been a video in my house of Little man, to show me that I was not alone. Empower me when I found a speciality children's hospital to take Little man to get his diagnosis so we could develop an action plan for treatment on this long and windy journey....
Plans to teach me what it really means to advocate for someone, someone who can not speak for themselves. To live outside of your comfort zone, to only think about your baby and nothing else and how to get his voice heard....
Our nuturing isn't being robbed from us, but the rules of the game have changed. Our instincts, our research into our children's illness, our advocacy for best care, our involvement in their every aspect of care. Our monitoring of diapers, and foods, and reactions, and caloric intakes IS nuturing an FPIES child.
Dad's protection hasn't been stolen, but the rules changed on what he is protecting from. Protection from crumbs, from trigger ingestions, from unlistening specialists, protecting the nuturing effects of the mother is probably the best gift he can give his child.
Many days, Little man takes much coaxing to eat. Today was one of those days. A lot of holding, and offering the bottle- hoping this time he will take it, and take a good amount. A lot of time from my day just to make sure I'm taking the time to assure he has taken the caloric intakes he needs to. He doesn't "ask" for his bottle -- I don't think he ever has. But, he has always taken a bottle best from me, he trusts me that way....maybe because he knows I will persist until he takes some, maybe he just enjoys the cuddle time. Today it took a lot of persistance....and nuturing.
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!!
Monday, October 25, 2010
Navigating through the subspecialty labyrinth....
"...At the same time, it is not surprising that these families fail to successfully navigate the subspecialty labyrinth. The gastroenterologist did the endoscopy and didn’t see much, the biopsy results were underwhelming to the pathologist, and the allergist said the child wasn’t allergic because the skin tests were negative. Random elimination of foods didn’t help. The child is still sick. Now what? Of course, there is no simple solution" from: The Mother of All Food Allergies.
We began the subspecialist labyrinth in Feb. with our referral to GI here, the above passage from this great artcle written about FPIES from a gastroenterologist says exactly our course. Shuffled through GI, an endoscopy with biopsy's, to the allergist and elemental diet with elimination of foods, reintroductions and little man stayed sick.... "no simple solution" doesn't begin to describe the path we've been on for the past 8mo. through the subspeciality labyrinth looking for support for management of this chronic illness.
Today, we hopefully took another turn closer to getting us out of this labyrinth, or at least show us there IS hope and choices and options for treatment, and support to navigate through it...
This gastroenterologist is associated with another (larger) Children's hosptial....so here is one option- we have another option for where little man would be hospitalized should he ever need this again, or for a food challenge (not trial, a challenge of an already known trigger food). This hospital is not in our home, but an hour and half away- which is not ideal but more realistic than half way across the country that it would take for us to return to CHOP (no matter how much we would rather just go there).
The GI started the appointment by explaining how he had read through little man's chart, which is always good. He asked how he could be of help -- being that we've already consulted with allergists and another GI. Management of his FPIES....specifically support is where we need help. He wanted to know his story- when we first started noticing symptoms, when we got help, when we went to Philadelphia....wait, you physically went all the way out to PA? We explained how he seemed familiar but then not-so-familiar milk protein intolerance, but was he reacting to more in my diet? from almost birth and how his reactions to Good Start formula seemed to wake up a colic, then we moved to rice and other solids to try and get a better handle on what we thought was reflux or hunger, or what? Soy formula last fall exacerbated a reflux, and colic. He wanted to know when he had his scope and when we started the elemental formula's. And what the first scope showed and the second, and how long on the elemental at the time of the 2nd scope? And what is he like now? What diet is he on, what does he tolerate. What about this tapioca reaction, that seems out of the typical response? Lots of good questions to get a good understanding of where we have come,what we have tried and where we are going. He was thorough and listening. He said key things like "I certainly don't argue with the parents"....."if they see something, then that is what it is- I don't live in your home so if you tell me something is wrong, I'm not going to deny it".
What did he think of him reacting to the elemental formula? He has never heard of it either....but he listened while we explained how we came to that conclusion and how we didnt' find a baseline until we finally moved away from any and all sources of corn. He didn't dwell on this, instead saying if our Dietitian is following closely and our Pediatrician- than he sees no reason why Little Man can't be on a homemade formula....if we've worked it out for adequate calories, protein, fats and carbohydrates...
We moved on to discuss his anemia. At this point, his concerns would be his protein intakes (getting better iron-rich sources of protein in his diet or formula) and treating his anemia. He wanted to know why we had not done an IV iron transfusion since he does this all the time for his Crohn's patients- and they feel so much better after having it done. He would be in the hospital and the iron would be transfused in him via IV. He fully agreed that he has a risk of reacting to a blood transfusion and agreed it wouldn't be his first choice for little man.
Pause for a moment with me....can you just imagine what it feels like to be in a room of a subspecialist who is acknowledging your son's illness, listening to your concerns and giving you real options for treatments of the complexity of it? And giving you the support that he would oversee this at the Children's hosptial he works with if this needs to be done.
This GI goes on to explain GI's are not typically the main doctors on an FPIES team, that you don't necessarily need the GI outside of needs for scopes. There is little to test for and this can further frustrate a GI doctor who typically operate on diagnostic tests and criteria they can measure. Remember, he is one- so he knows. The good part about this GI, his good friend is the very Allergist we saw last month (Allergist #3 who confirms Allergist #2 diagnosis of FPIES). He even went on to explain how he learned about FPIES.....everyone has to start somewhere....
A mom whose child did not tolerate soy and it was severe reactions to soy, was looking for help- looking to be heard. This doctor thought he had her simple solution- avoid soy. But the mom was noticing pain and other symptoms with introductions of some other foods and did not know how to proceed, for fear of the soy reaction returning. So she visited his waiting room everytime she introduced a new food. Finally, he said they could challenge soy- since she was passing so many other foods. He admitted her to the ER for monitoring, and fed the child soy. A few hours go by and nothing happens. So, he dismisses her- she goes to the parking lot and waits (she knows her child will be having this reaction soon). Sure enough, the "vomiting her brains out" begins and mom brings her back into the ER. The GI doctor was perplexed, called his allergist buddy and asked him if he knew what was going on, he replied...she has FPIES, haven't you heard of this? He hadn't before, now he did.....
This mom's actions and persistance and advocacy for her daughter has made an excellent and helpful, FPIES friendly GI for so many other moms to follow her....I am grateful to her. And I hope her daughter is now outgrown her FPIES and doing well. Maybe someday I can connect with her (goodness knows, I sure have "met" a good share of FPIES mommy's already!).
He continued to take his time with us, discussing our concerns and how he could be of help...I wonder if he realizes how much he already has?
We began the subspecialist labyrinth in Feb. with our referral to GI here, the above passage from this great artcle written about FPIES from a gastroenterologist says exactly our course. Shuffled through GI, an endoscopy with biopsy's, to the allergist and elemental diet with elimination of foods, reintroductions and little man stayed sick.... "no simple solution" doesn't begin to describe the path we've been on for the past 8mo. through the subspeciality labyrinth looking for support for management of this chronic illness.
Today, we hopefully took another turn closer to getting us out of this labyrinth, or at least show us there IS hope and choices and options for treatment, and support to navigate through it...
This gastroenterologist is associated with another (larger) Children's hosptial....so here is one option- we have another option for where little man would be hospitalized should he ever need this again, or for a food challenge (not trial, a challenge of an already known trigger food). This hospital is not in our home, but an hour and half away- which is not ideal but more realistic than half way across the country that it would take for us to return to CHOP (no matter how much we would rather just go there).
The GI started the appointment by explaining how he had read through little man's chart, which is always good. He asked how he could be of help -- being that we've already consulted with allergists and another GI. Management of his FPIES....specifically support is where we need help. He wanted to know his story- when we first started noticing symptoms, when we got help, when we went to Philadelphia....wait, you physically went all the way out to PA? We explained how he seemed familiar but then not-so-familiar milk protein intolerance, but was he reacting to more in my diet? from almost birth and how his reactions to Good Start formula seemed to wake up a colic, then we moved to rice and other solids to try and get a better handle on what we thought was reflux or hunger, or what? Soy formula last fall exacerbated a reflux, and colic. He wanted to know when he had his scope and when we started the elemental formula's. And what the first scope showed and the second, and how long on the elemental at the time of the 2nd scope? And what is he like now? What diet is he on, what does he tolerate. What about this tapioca reaction, that seems out of the typical response? Lots of good questions to get a good understanding of where we have come,what we have tried and where we are going. He was thorough and listening. He said key things like "I certainly don't argue with the parents"....."if they see something, then that is what it is- I don't live in your home so if you tell me something is wrong, I'm not going to deny it".
What did he think of him reacting to the elemental formula? He has never heard of it either....but he listened while we explained how we came to that conclusion and how we didnt' find a baseline until we finally moved away from any and all sources of corn. He didn't dwell on this, instead saying if our Dietitian is following closely and our Pediatrician- than he sees no reason why Little Man can't be on a homemade formula....if we've worked it out for adequate calories, protein, fats and carbohydrates...
We moved on to discuss his anemia. At this point, his concerns would be his protein intakes (getting better iron-rich sources of protein in his diet or formula) and treating his anemia. He wanted to know why we had not done an IV iron transfusion since he does this all the time for his Crohn's patients- and they feel so much better after having it done. He would be in the hospital and the iron would be transfused in him via IV. He fully agreed that he has a risk of reacting to a blood transfusion and agreed it wouldn't be his first choice for little man.
Pause for a moment with me....can you just imagine what it feels like to be in a room of a subspecialist who is acknowledging your son's illness, listening to your concerns and giving you real options for treatments of the complexity of it? And giving you the support that he would oversee this at the Children's hosptial he works with if this needs to be done.
This GI goes on to explain GI's are not typically the main doctors on an FPIES team, that you don't necessarily need the GI outside of needs for scopes. There is little to test for and this can further frustrate a GI doctor who typically operate on diagnostic tests and criteria they can measure. Remember, he is one- so he knows. The good part about this GI, his good friend is the very Allergist we saw last month (Allergist #3 who confirms Allergist #2 diagnosis of FPIES). He even went on to explain how he learned about FPIES.....everyone has to start somewhere....
A mom whose child did not tolerate soy and it was severe reactions to soy, was looking for help- looking to be heard. This doctor thought he had her simple solution- avoid soy. But the mom was noticing pain and other symptoms with introductions of some other foods and did not know how to proceed, for fear of the soy reaction returning. So she visited his waiting room everytime she introduced a new food. Finally, he said they could challenge soy- since she was passing so many other foods. He admitted her to the ER for monitoring, and fed the child soy. A few hours go by and nothing happens. So, he dismisses her- she goes to the parking lot and waits (she knows her child will be having this reaction soon). Sure enough, the "vomiting her brains out" begins and mom brings her back into the ER. The GI doctor was perplexed, called his allergist buddy and asked him if he knew what was going on, he replied...she has FPIES, haven't you heard of this? He hadn't before, now he did.....
This mom's actions and persistance and advocacy for her daughter has made an excellent and helpful, FPIES friendly GI for so many other moms to follow her....I am grateful to her. And I hope her daughter is now outgrown her FPIES and doing well. Maybe someday I can connect with her (goodness knows, I sure have "met" a good share of FPIES mommy's already!).
He continued to take his time with us, discussing our concerns and how he could be of help...I wonder if he realizes how much he already has?
Sunday, October 24, 2010
Just a mom wanting to be heard....
Just a Mom wanting to be heard
Sharing this website again. A good resource for Rare Disease support. Just a mom wanting to be heard, that has been me for months. To see there are so many other mom's experiencing similar things (with other illnesses) is disheartening and encouraging at the same time. Encouraging that I am not alone, but disheartening that others' are not finding the right avenues to navigate with doctors to hear the cries of a mom for her child.
I do tire of the "fight"....I wish it didn't have to be such a fight to just have help for a child with an illness- even if rare and little understood. I struggle with the "why does it have to be this way"? I just don't understand why someone can't hear me, what I am not saying- what am I portraying wrong? Is my patience being perceived as my son being healthy and not really needing the care? I know it is a rare illness and a clinical diagnosis and I have tried to be patient. But the fact that little man's illness becomes more complex is driving me to 'push' more - not only for him but for his brothers....who all deserve some normalcy in their lives.
Normalcy that can come, despite having to cope with a chronic illness. Normalcy I can provide, coping I am doing....but everything I could do better and with a less heavy heart if there was more support regarding his unique illness and needs surrounding the complexity of it. But my mind does not turn off....always planning next steps, always worried about next steps, always wondering if he will get more and more sick if we don't continue to find out the right things to do to help him. Always researching of what those right things might be. Research more and more about allergies, about digestion, about nutrition, about food families and carbohydrate intolerance's, and now also about how to get a toddler to put food in his mouth when he has not had food for 8mo. and textures and tastes are becoming foreign. And then when he does put it in his mouth, his stomach cramps he associates the eating with pain....and maybe he trusts me a little less.
Tomorrow, we have hope. We see a new GI doctor that has managed a few FPIES cases over the past few years.....although likely none as complex as little man since he works in conjunction with Allergist #3 and that was his comment when reviewing little man's history. We will hold on to to hope that he can provide us with some support for continued management of this illness. The missing pieces in the management of this illness involves just a mom wanting to be heard....
Sharing this website again. A good resource for Rare Disease support. Just a mom wanting to be heard, that has been me for months. To see there are so many other mom's experiencing similar things (with other illnesses) is disheartening and encouraging at the same time. Encouraging that I am not alone, but disheartening that others' are not finding the right avenues to navigate with doctors to hear the cries of a mom for her child.
I do tire of the "fight"....I wish it didn't have to be such a fight to just have help for a child with an illness- even if rare and little understood. I struggle with the "why does it have to be this way"? I just don't understand why someone can't hear me, what I am not saying- what am I portraying wrong? Is my patience being perceived as my son being healthy and not really needing the care? I know it is a rare illness and a clinical diagnosis and I have tried to be patient. But the fact that little man's illness becomes more complex is driving me to 'push' more - not only for him but for his brothers....who all deserve some normalcy in their lives.
Normalcy that can come, despite having to cope with a chronic illness. Normalcy I can provide, coping I am doing....but everything I could do better and with a less heavy heart if there was more support regarding his unique illness and needs surrounding the complexity of it. But my mind does not turn off....always planning next steps, always worried about next steps, always wondering if he will get more and more sick if we don't continue to find out the right things to do to help him. Always researching of what those right things might be. Research more and more about allergies, about digestion, about nutrition, about food families and carbohydrate intolerance's, and now also about how to get a toddler to put food in his mouth when he has not had food for 8mo. and textures and tastes are becoming foreign. And then when he does put it in his mouth, his stomach cramps he associates the eating with pain....and maybe he trusts me a little less.
Tomorrow, we have hope. We see a new GI doctor that has managed a few FPIES cases over the past few years.....although likely none as complex as little man since he works in conjunction with Allergist #3 and that was his comment when reviewing little man's history. We will hold on to to hope that he can provide us with some support for continued management of this illness. The missing pieces in the management of this illness involves just a mom wanting to be heard....
Saturday, October 23, 2010
Forgiveness....
http://tombolo.mn/2010/09/forgiveness/
Maybe because I am simply tired. Maybe because I have so much on my mind for new posts to share but too much to put down in words. Maybe because I don't have any better way to say this message than how this writer says it here...I will simply share this post today. And also connect the reader to an excellent blog for support for families with children of rare, chronic diseases. I find inspiration in others' journey's inspire me.....
Maybe because I am simply tired. Maybe because I have so much on my mind for new posts to share but too much to put down in words. Maybe because I don't have any better way to say this message than how this writer says it here...I will simply share this post today. And also connect the reader to an excellent blog for support for families with children of rare, chronic diseases. I find inspiration in others' journey's inspire me.....
But I've never heard of a child reacting to an elemental formula....
First visit with Allergist #4 was yesterday, it went well and we now have an allergist on our team at home, this will help manage his illness from day-to-day.
Allergist #1 was sure FPIES was not what was ravaging our son's body because he had not ever experienced full shock- even though the research shows that "only" 20% of kids do go into shock. Although, she also admitted that she has only diagnosed one case in her career, and that case is quite severe. I have actually since "met" this mom (online) and yes- her daughter's case is quite severe in her reactions; but otherwise their FPIES course are similar. So, on to a 2nd opinion. I have to say here, that it is funny to me that doctors are surprised when you ask for, or seek out a 2nd opinion. A good doctor would encourage it...would admit their humanity and that they simply can not know everything; some other doctors are challenged by it...what did they miss? I respect the doctor who admits their humanity, that admits they don't know everything but are ready and willing to learn. With their training, experience and expertise; they can catch up fast on something new. I caught up fast- because I live this day in and day out....I am gaining more experience than any study or research article could ever quantify.
Allergist #2 had more experience with this condition,and conditions similar to it; and was able to recognize our son's FPIES immediately by symptoms presented in his history. He was also able to recognize a likely corn trigger intolerance....because of his experience. "There is a small percentage of kids who react to even the elemental formula's and it is unfortunate because it makes it very difficult"....I can attest to that!
Allergist #3- confirms the FPIES once again and gives us a great empowering statement for this difficult clinical diagnosis. "He has FPIES, this has been confirmed by two allergist, here is some information if you would like to learn more"..... So, on to Allergist #4....and back to the clinic we started at- in our home.
Allergist #4 wants to be part of our "team". I've spoken before about how FPIES is best managed by a team- GI, Allergy, Nutrition,Pediatrician, parent (a good social worker would help too- and I'm working on that). I am encouraged that he wants to be a part of the team, wants to be a support for us and a resource of our pediatrician to help us manage this chronic illness that has become complex for little man.
A struggle we still have is the fact that we no longer have little man on an elemental formula, and will not be putting him back on it; instead we have him on a formula that I make. It is adequate in calories, carbohydrates, protein, fats, and macro nutrients but it is lacking in some micro nutrients....nutrients that should be filled in by a diet. But, we have yet to find a diet little man can tolerate in large amounts to contribute to his nutrition. The "easy" answer to the doctors is: put him back on the elemental formula....because after all, "I've never heard of a child reacting to an elemental formula".
I am in nutrition- a dietetic technician, I am Registered- which means I must maintain a certain amount of continuing education yearly. I also am practicing- which means I have a job, a job where I gain more knowledge from my experience. I attend seminars on GI and nutrition and allergies. I have special interest in GI, allergies, and pediatrics. I had never heard of FPIES, and I certainly would not have suspected it to be such a severe and sensitive condition.....but that doesn't mean it didn't exist. It meant simply that I had something to learn.
Many will say that they have never heard of infants being allergic to breastmilk, and yet many infants are....for multitudes of reasons, some still unknown. If a baby can be allergic, or sensitive, or reacting, or not thriving on breastmilk-- that is made from God....Why is it such a stretch that an infant can be allergic to something made by man? There are many additives in formula. The elemental are designed so that the proteins are broken down to single amino acid (something otherwise the body has to do). So, instead the body does not have to break it down- giving it little, if anything, to react to. It simply absorbs it, providing the nutrition the body needs. But, the formula doesn't just contain amino acids. It contains fats and carbohydrates (in the form of oils and sugars). My little man was reacting to the sugars - he has a sugar intolerance but it was more than that, he also has a corn trigger. The corn syrup solids are strained down to remove the proteins but there is chances for trace proteins to remain. FPIES triggers are highly sensitive and some kids can, and do react, to trace proteins....it is why my little man could not thrive on my breastmilk -- reacting to trace proteins.
Everyone following me understands this, right? It makes perfect sense to me, I am living it - I have a perspective on it that I cant' seem to illustrate. How do I get his doctors to understand this? The same doctors that not requested I stop breastfeeding, but insist that I stop breastfeeding as it was clear he was reacting to my milk- despite my giving up all sources of dairy, soy, and gluten. It wasn't enough, he was still reacting to something. I knew that, I knew I had to stop nursing him- I knew something in my diet was making him stay sick; so either drastic measures needed to be taken or I could switch him to an elemental formula. He was so sick, we had to do something quickly. He improved some on the elemental formulas- it helped some but again, just like when I gave up some of his triggers for breastfeeding him and saw some relief - it wasn't enough and he was still reacting to something. In my diet, it was rice and corn, and maybe other things we have not yet identified. In the formula- it was the corn and maybe even the soy oil.
I had never heard of FPIES or reacting to everything in breastmilk or reacting to elemental formula's either.... but I have now.
Allergist #1 was sure FPIES was not what was ravaging our son's body because he had not ever experienced full shock- even though the research shows that "only" 20% of kids do go into shock. Although, she also admitted that she has only diagnosed one case in her career, and that case is quite severe. I have actually since "met" this mom (online) and yes- her daughter's case is quite severe in her reactions; but otherwise their FPIES course are similar. So, on to a 2nd opinion. I have to say here, that it is funny to me that doctors are surprised when you ask for, or seek out a 2nd opinion. A good doctor would encourage it...would admit their humanity and that they simply can not know everything; some other doctors are challenged by it...what did they miss? I respect the doctor who admits their humanity, that admits they don't know everything but are ready and willing to learn. With their training, experience and expertise; they can catch up fast on something new. I caught up fast- because I live this day in and day out....I am gaining more experience than any study or research article could ever quantify.
Allergist #2 had more experience with this condition,and conditions similar to it; and was able to recognize our son's FPIES immediately by symptoms presented in his history. He was also able to recognize a likely corn trigger intolerance....because of his experience. "There is a small percentage of kids who react to even the elemental formula's and it is unfortunate because it makes it very difficult"....I can attest to that!
Allergist #3- confirms the FPIES once again and gives us a great empowering statement for this difficult clinical diagnosis. "He has FPIES, this has been confirmed by two allergist, here is some information if you would like to learn more"..... So, on to Allergist #4....and back to the clinic we started at- in our home.
Allergist #4 wants to be part of our "team". I've spoken before about how FPIES is best managed by a team- GI, Allergy, Nutrition,Pediatrician, parent (a good social worker would help too- and I'm working on that). I am encouraged that he wants to be a part of the team, wants to be a support for us and a resource of our pediatrician to help us manage this chronic illness that has become complex for little man.
A struggle we still have is the fact that we no longer have little man on an elemental formula, and will not be putting him back on it; instead we have him on a formula that I make. It is adequate in calories, carbohydrates, protein, fats, and macro nutrients but it is lacking in some micro nutrients....nutrients that should be filled in by a diet. But, we have yet to find a diet little man can tolerate in large amounts to contribute to his nutrition. The "easy" answer to the doctors is: put him back on the elemental formula....because after all, "I've never heard of a child reacting to an elemental formula".
I am in nutrition- a dietetic technician, I am Registered- which means I must maintain a certain amount of continuing education yearly. I also am practicing- which means I have a job, a job where I gain more knowledge from my experience. I attend seminars on GI and nutrition and allergies. I have special interest in GI, allergies, and pediatrics. I had never heard of FPIES, and I certainly would not have suspected it to be such a severe and sensitive condition.....but that doesn't mean it didn't exist. It meant simply that I had something to learn.
Many will say that they have never heard of infants being allergic to breastmilk, and yet many infants are....for multitudes of reasons, some still unknown. If a baby can be allergic, or sensitive, or reacting, or not thriving on breastmilk-- that is made from God....Why is it such a stretch that an infant can be allergic to something made by man? There are many additives in formula. The elemental are designed so that the proteins are broken down to single amino acid (something otherwise the body has to do). So, instead the body does not have to break it down- giving it little, if anything, to react to. It simply absorbs it, providing the nutrition the body needs. But, the formula doesn't just contain amino acids. It contains fats and carbohydrates (in the form of oils and sugars). My little man was reacting to the sugars - he has a sugar intolerance but it was more than that, he also has a corn trigger. The corn syrup solids are strained down to remove the proteins but there is chances for trace proteins to remain. FPIES triggers are highly sensitive and some kids can, and do react, to trace proteins....it is why my little man could not thrive on my breastmilk -- reacting to trace proteins.
Everyone following me understands this, right? It makes perfect sense to me, I am living it - I have a perspective on it that I cant' seem to illustrate. How do I get his doctors to understand this? The same doctors that not requested I stop breastfeeding, but insist that I stop breastfeeding as it was clear he was reacting to my milk- despite my giving up all sources of dairy, soy, and gluten. It wasn't enough, he was still reacting to something. I knew that, I knew I had to stop nursing him- I knew something in my diet was making him stay sick; so either drastic measures needed to be taken or I could switch him to an elemental formula. He was so sick, we had to do something quickly. He improved some on the elemental formulas- it helped some but again, just like when I gave up some of his triggers for breastfeeding him and saw some relief - it wasn't enough and he was still reacting to something. In my diet, it was rice and corn, and maybe other things we have not yet identified. In the formula- it was the corn and maybe even the soy oil.
I had never heard of FPIES or reacting to everything in breastmilk or reacting to elemental formula's either.... but I have now.
Friday, October 22, 2010
Digestion
I am brushing up on my digestion health knowledge, once again. It is always good to take a re-look at things when you have some new "eyes" to look at things with. I now see everything with "FPIES eyes". This illustration is hanging in one of my offices at work, we like it because it is in color, and it shows such a simple- yet informative- illustration of nutrients and the workings of the GI tract (in particular if you have pieces of this missing, or in my son's case- chronically and acutely inflamed. I was able to find it online, so anyone can take a peek at it too: Digestion and absorption of nutrients
It was last Dec., after 4mo of trying to figure out on my own what was going on with his little body, trying to control things with a milk protein intolerance consideration (new foods should have worked, as long as we avoided dairy)....but they weren't working. Soy formula was failing, building up a resistance and causing it's own host of new concerning symptoms. The biggest thing that I was able to finally connect that his body was showing a sensitivity build up to soy was a croup-y cough. Others have talked about this similar type of cough with food reactions (often soy is a culprit)- I wonder if it is actually from the reflux? Could be....warrants further investigation at some point. But for now, either way- his body was not tolerating the small amounts we were doing. By mid December, all I could think was- lets just get through the holidays and then I am going to have to bring him in to his pediatrician because I simply can not grasp a handle on this by myself anymore. I already knew that outside of frank vomiting and bloody stools- little is recognized about delayed food intolerance's in the medical community. From a dietetics standpoint, we see things differently but we also remain cautious as to not encourage someone to unnecessarily over-restrict the diet....especially the diet of a growing child. Restricting my son's diet has never been my intention....adding to it has. But FPIES takes that away, in a cruel way. Food is not just food anymore. Allergies take on a whole new meaning.
Ok, back to December. Our pediatrician agreed little man was likely building up an intolerance to soy, as many dairy intolerant infants do, and to try him on a 100% no milk,no soy diet (breastfeeding for me and his foods as well), keep a journal, and try Nutramagin, Pregistimal or Alimentum. I chose Nutramagin. Only to have him projectile vomit all over our kitchen, multiple times that day. We even tried it a few more times- just to be sure....each time being more and more obvious and concerning. Back to the pediatrician and labs were checked for allergies, and gluten sensitivity, CBC, and iron, and 'did I want to check anything else'? Yes, I'm curious to what his Vit.D levels are. He was a breastfed baby and research is showing there is higher incidence for some Vit.D deficiency's in breastfed babies, we're getting labs- lets check that too. No one, not even me anticipated the results we got. His level was 9ng/ml, with normal being 24-80ng/ml. Diagnosis: profoundly vitamin D deficient. We immediately started a supplement to restore these levels. But my concern remained....how did his levels get so low? Was my milk this deficient? I had my levels checked just to be sure I wasn't in trouble too....no, my levels were within normal limits. But, research has shown that even if mom is not deficient- breastmilk can be (and often is). But really? This deficient? How normal is this? I already knew by his actions of gas and stomach discomfort that he was having digestion issues, maybe inflammation - my instincts were telling me this....that he had gut inflammation in his small intestine and dysbiosis in his colon. The gut inflammation was causing a "leaky gut" and causing his body to be sensitive to dietary proteins. These were my instincts- I had never even heard of FPIES. Until I printed off an article from EMedicine about Protein Intolerance, there was a brief mention of it there. I highlighted it in my reading, along with milk protein intolerance, multiple protein intolerance, Eosinophiliac disorders, Celiac, protein enteropathy. My research began with that Protein Intolerance article. My instincts were confirmed by his labs showing a low iron and low Vit.D, as well as a low IgA (mucosa lining of GI tract). Now what to do with this information? What do we do next?
It was last Dec., after 4mo of trying to figure out on my own what was going on with his little body, trying to control things with a milk protein intolerance consideration (new foods should have worked, as long as we avoided dairy)....but they weren't working. Soy formula was failing, building up a resistance and causing it's own host of new concerning symptoms. The biggest thing that I was able to finally connect that his body was showing a sensitivity build up to soy was a croup-y cough. Others have talked about this similar type of cough with food reactions (often soy is a culprit)- I wonder if it is actually from the reflux? Could be....warrants further investigation at some point. But for now, either way- his body was not tolerating the small amounts we were doing. By mid December, all I could think was- lets just get through the holidays and then I am going to have to bring him in to his pediatrician because I simply can not grasp a handle on this by myself anymore. I already knew that outside of frank vomiting and bloody stools- little is recognized about delayed food intolerance's in the medical community. From a dietetics standpoint, we see things differently but we also remain cautious as to not encourage someone to unnecessarily over-restrict the diet....especially the diet of a growing child. Restricting my son's diet has never been my intention....adding to it has. But FPIES takes that away, in a cruel way. Food is not just food anymore. Allergies take on a whole new meaning.
Ok, back to December. Our pediatrician agreed little man was likely building up an intolerance to soy, as many dairy intolerant infants do, and to try him on a 100% no milk,no soy diet (breastfeeding for me and his foods as well), keep a journal, and try Nutramagin, Pregistimal or Alimentum. I chose Nutramagin. Only to have him projectile vomit all over our kitchen, multiple times that day. We even tried it a few more times- just to be sure....each time being more and more obvious and concerning. Back to the pediatrician and labs were checked for allergies, and gluten sensitivity, CBC, and iron, and 'did I want to check anything else'? Yes, I'm curious to what his Vit.D levels are. He was a breastfed baby and research is showing there is higher incidence for some Vit.D deficiency's in breastfed babies, we're getting labs- lets check that too. No one, not even me anticipated the results we got. His level was 9ng/ml, with normal being 24-80ng/ml. Diagnosis: profoundly vitamin D deficient. We immediately started a supplement to restore these levels. But my concern remained....how did his levels get so low? Was my milk this deficient? I had my levels checked just to be sure I wasn't in trouble too....no, my levels were within normal limits. But, research has shown that even if mom is not deficient- breastmilk can be (and often is). But really? This deficient? How normal is this? I already knew by his actions of gas and stomach discomfort that he was having digestion issues, maybe inflammation - my instincts were telling me this....that he had gut inflammation in his small intestine and dysbiosis in his colon. The gut inflammation was causing a "leaky gut" and causing his body to be sensitive to dietary proteins. These were my instincts- I had never even heard of FPIES. Until I printed off an article from EMedicine about Protein Intolerance, there was a brief mention of it there. I highlighted it in my reading, along with milk protein intolerance, multiple protein intolerance, Eosinophiliac disorders, Celiac, protein enteropathy. My research began with that Protein Intolerance article. My instincts were confirmed by his labs showing a low iron and low Vit.D, as well as a low IgA (mucosa lining of GI tract). Now what to do with this information? What do we do next?
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