It was a year ago that our journey started to compound, that it took it's leap from "just" Milk protein intolerance to adding up to so much more....what that would be, we had no idea at this point last year. We had gone from not tolerating Good Start, to lots of throwing up and poor acceptance of baby foods, a hungry baby that wouldn't eat, a baby that was now fighting colic on a regular basis.
Thanksgiving last year is when I started the supplemental soy bottles, we were going to be traveling for the Holiday weekend and since we knew regular cow's milk formula's were not going to work for our little man, I was ready to try some soy formula with him. I'm not even sure if I anticipated there to be any problems as two of my other boys who have milk protein intolerance's have tolerated soy. I remember the trip up north was good (6.5hr drive) and the weekend visit was great. I remember he didn't eat very well, was refusing the spoon a lot by this point and the only thing he had been taking at home was banana, oatmeal and sweet potatoes and I had brought along the Gerber oatmeal/banana jar food for convenience, but he wasn't especially interested in that either. He did eat graham crackers and cheerios, and cereal stars well. I wasn't too alarmed in his poor appetite for his food since it is typical for my boys to get out of sorts and not eat well while we are traveling. I try not to stress about it, they'll eat when they are hungry and when we are up north visiting- it is visiting the grandparents so I want their visits to be fun. He took the soy bottles a few times over the weekend and we were trying to use them for on the way home because I did not have anything pumped and he was very,very fussy the whole drive home (had been so happy on the drive up). I remember it being a very long day and lots of crying, and knowing he was just uncomfortable but not yet associating it with the soy formula. And I do remember thinking it was from my diet - too many treats over the weekend, as I have IBS and have trouble with fruits,milk, and wheat; that I felt was carrying over into my milk supply and disturbing him. Now, looking back- it was more likely all the soy. Especially knowing what we know now about the villous atrophy that just came into our picture after our soy trial. Villous atrophy causes the body to absorb zero nutrients (at the points where it is affecting the intestines). I look at Little Man's growth chart and the time from when we started soy to 6weeks after that, he went from in the 40th% down the to in the 20th%. He also had severely low Vit.D and low iron levels at this time. This piece of the puzzle is coming more into focus now....villous atrophy from soy protein. Does Little man have Milk/Soy protein enteropathy and Rice/Corn/Grains FPIES? Is this why his illness is so complex?
I take a look back at a year ago today, because we really have come so very far. A year ago today we were starting our downhill slide with Little man, we were losing our grasp and it was after the holiday season that I knew I had to get more help for him. It couldn't be "just" milk/soy protein intolerance, it wasn't "just" reflux, he wasn't gaining weight and was starting to lose, his pain was growing daily, his sleep patterns were erratic and his night sleeping was pain filled, he was hungry but wouldn't eat, and he cried and cried and cried.
Since then, we have done elimination diets and trialed reflux meds, we have ruled out Eosinophilic Esophagitis, and Celiac Disease. We have had gut rest and changes to amino acid formula. We have food introductions, and fails that led us closer to the FPIES diagnosis. We have received help and support from some great Dietitians. We have traveled half way across the country for a consult with an expert Allergist to confirm the FPIES diagnosis. We have found a very sensitive trigger (corn) for Little man and moved away from any and all sources of it -- to have the daily pain attack and sleep disruption and random vomiting all STOP. We have formulated a formula, made with ingredients his body tolerates. We have been able to add millet and peaches, very slowly, to his diet. He may be failure to grow and gain weight but we have kept him thriving, and growing at his pace. He is a smart, active, interactive, inquistive, happy, kind, quiet and loving little boy. We have found a very supportive, and knowledgeable GI doctor, in our home hospital, to help us manage this complex, chronic illness and manage it at home. At home, where we can maintain a quality of life and normalcy of life for Little Man's brothers- despite food trials, hospital stays and diagnostic procedures.
And we have slowly been adding pieces to solving the puzzle that is Little Man.
We have come a long way, and today on a day of Thanks- we are thankful.
Showing posts with label Soy. Show all posts
Showing posts with label Soy. Show all posts
Thursday, November 25, 2010
Sunday, November 14, 2010
More Pieces to this puzzle?
My last post I talked about how the pieces to the puzzle were dumped out all over the floor, and that there may be pieces all mixed in from another puzzle. Well, maybe (just maybe- not confirmed yet) that Soy is putting more of those pieces in their places. Soy trial from 11/3 - 11/5, he consumed 6oz. the fist day, 6oz. the second day and double that the 3rd day. We saw a few "weird" symptoms but they weren't hanging around and they weren't building; so we dismissed from the hospital on Friday night and stayed optimistic to call soy a pass in a few days. Saturday afternoon brought on a whole new story. After getting up from his nap, he was running a fever and was so miserable. Sunday was the same story. By Monday we wanted him seen and evaluated for a source of the fever. Tuesday we were hoping he was turning a corner but by evening it was clear he wasn't winning whatever his body was fighting. I had stopped soy on Monday morning and returned to his safe hemp milk formula that he otherwise thrives on. Wednesday, after a positive-for-blood stool sample and discussion with GI doctor- we decided best to have him admitted for continued monitoring back to baseline and then look at either re-trial of soy or trial of a vitamin the GI doctor has found that we think may be safe. By Wednesday evening, he looked like he was turning a corner and Thursday was a good afternoon. But it was a false sense of security because overnight Thursday he began to run fevers again and developed a very "seal" like cough and runny nose and was just downright achy miserable. His formula intakes were very poor through all of this, only taking in half or less of his needed caloric intakes. We waited it out on Friday- trying to decide next steps, waiting to hear from the GI doctor on what her thoughts were for next steps (soy re-trial or MVI?). By late afternoon, it was decided that we should proceed with a multivitamin trial rather than risk a fail with soy. The main goal and priority now is to get the micronutrients he needs that his hemp milk formula doesn't provide....although labs were all done on his body's levels of these micronutrients and he is holding with all normal levels, so that has been encouraging. Although the thought process is to treat it now before he loses these body stores and dips low (like with his anemia); and to have all the nutrition he needs in his formula and a vitamin as we press forward- taking breaks when needed, through food trials.
The vitamin presented as possibly safe has some concerning ingredients that I will need to check on before trialing it. I am in desperate need of assuring he is getting the nutrients he needs but also very worried about making him sick -- from a vitamin, synthetic nutrients! I would SO much rather be doing a food trial....my thoughts go to Egg. Egg has so many beneficial nutrients - maybe if he could pass egg, he can fill in the blanks to assure optimal nutrition from FOOD. I am all for whole food vs. supplements but I do realize when the need outweighs itself. So, I have some (more) researching to do this week; along with more research/reading on Protein Intolerance.
FPIES is protein intolerance, it is viewed as the severe end of the spectrum of protein intolerance. Much like anaphylaxis is the severe end of the spectrum of IgE allergy's. Not everyone with IgE allergy's reacts with anaphylaxis, in fact it is rare. Not everyone with Protein intolerance reacts with violent vomiting to bile/lethargy/diarrhea and shock- FPIES reaction. It is also rare.
Soy brought on what looks more of intolerance symptoms (disturbed sleep, runny stools, bloody stools, mucous in stools, runny nose and a barky cough). Not symptoms you would want to see at a baseline! But not FPIES trigger either? Not clear and not tolerating either way. We will need to re-trial soy again soon to know for sure.
Protein Intolerance is where I began this journey. But his symptoms didn't fit nicely in that box. Reflux was suggested, but his symptoms didn't fit there, EE was ruled out, Celiac was ruled out by biopsy. Elimination and elemental diets brought us closer but still not in a box. FPIES discovery, diagnosis and treatment brought us a baseline. And yet we still were struggling to maintain that baseline. More to come on protein intolerance vs/and FPIES as I learn more of this puzzle.
We did come home from the hospital (again) on Friday night. We felt since Little man was FAR from a baseline (bloody stools everyday last week, with this congestion/cough/fevers) we couldn't introduce something and see a clear picture of how it was affecting his body. We are so glad we came home! We have enjoyed the past few days just being a normal family.
The vitamin presented as possibly safe has some concerning ingredients that I will need to check on before trialing it. I am in desperate need of assuring he is getting the nutrients he needs but also very worried about making him sick -- from a vitamin, synthetic nutrients! I would SO much rather be doing a food trial....my thoughts go to Egg. Egg has so many beneficial nutrients - maybe if he could pass egg, he can fill in the blanks to assure optimal nutrition from FOOD. I am all for whole food vs. supplements but I do realize when the need outweighs itself. So, I have some (more) researching to do this week; along with more research/reading on Protein Intolerance.
FPIES is protein intolerance, it is viewed as the severe end of the spectrum of protein intolerance. Much like anaphylaxis is the severe end of the spectrum of IgE allergy's. Not everyone with IgE allergy's reacts with anaphylaxis, in fact it is rare. Not everyone with Protein intolerance reacts with violent vomiting to bile/lethargy/diarrhea and shock- FPIES reaction. It is also rare.
Soy brought on what looks more of intolerance symptoms (disturbed sleep, runny stools, bloody stools, mucous in stools, runny nose and a barky cough). Not symptoms you would want to see at a baseline! But not FPIES trigger either? Not clear and not tolerating either way. We will need to re-trial soy again soon to know for sure.
Protein Intolerance is where I began this journey. But his symptoms didn't fit nicely in that box. Reflux was suggested, but his symptoms didn't fit there, EE was ruled out, Celiac was ruled out by biopsy. Elimination and elemental diets brought us closer but still not in a box. FPIES discovery, diagnosis and treatment brought us a baseline. And yet we still were struggling to maintain that baseline. More to come on protein intolerance vs/and FPIES as I learn more of this puzzle.
We did come home from the hospital (again) on Friday night. We felt since Little man was FAR from a baseline (bloody stools everyday last week, with this congestion/cough/fevers) we couldn't introduce something and see a clear picture of how it was affecting his body. We are so glad we came home! We have enjoyed the past few days just being a normal family.
Friday, November 5, 2010
Home
...from the hospital after a 1 week stay. I am still processing through all that we accomplished, how much we were supported and cared for during this week at the hospital. We are so very hopeful, and have been praying for, a better path of health for Little Man. We hope conquering his anemia and this soy trial are getting us steps to that- giant leaps maybe even?
The symptoms we were concerned with with the introduction of soy did not build or worsen. In fact, they seemed to even out a bit. We may be dealing with some refluxing as his agitated states are when he gets up in the morning and when he wakes up from his nap, so that could explain that. He doesn't reflux unless his body is not properly digesting a food. So, that is noted. His flat affect was very concerning, his "poker face" as his daddy calls it- an expression-less deameanor with no interactive play. But he didn't have that much today, and the refluxing pain was less as well. We felt everything looked stable enough to at least continue this at home- sleeping in his own bed and playing with his brothers, getting back into our routine may help filter out his fussy spells and disturbed sleep -- or it may make it more clear.
Whatever happens, we have a plan. If things stay the same- we continue soy and have our follow up with GI at the end of next week. If symptoms build, and are not vomiting/diarrhea/dehydration/lethargy- we call GI and go in for direct admission back to be monitored; if vomiting/diarrhea or concerns of dehydration and lethargy - we go right to the ER. We have a plan, a "safety net". We have a new level of stress relief, a heavy-heavy weight lifted off our shoulders.
Little man giggled when we walked out to the van after being dismissed - as soon as he saw the van, he giggled. He got excited to get into his carseat and sang on the way home, calling for "daddy" (his new favorite word). I've spent most of the time with him at the hospital, so he has missed his favorite playmate- daddy....and of course his brothers (we've been working on him learning how to say their names).
We continue with soy, mixed into his formula - increasing every day...unless we see new symptoms that deserve attention. I'm still nervous to call it a "pass". Soy is so closely related to dairy and his dairy intolerance is so sensitive, we've never even "trialed" a whole dairy protein because of his reactions to dairy in my breastmilk and from crumbs and from hydrolyzed formula's. What if he builds up an intolerance to soy? What if we're pushing his body? On the other hand, soy is a common FPIES trigger and if he could truly pass this, and thrive on it -- would really give us hope that we can do bigger food trials with more confidence.....although there is no rhyme or reason to FPIES triggers in kids but to have so many fails only under our belt- it will feel good to have a pass, especially such a big one.....
The symptoms we were concerned with with the introduction of soy did not build or worsen. In fact, they seemed to even out a bit. We may be dealing with some refluxing as his agitated states are when he gets up in the morning and when he wakes up from his nap, so that could explain that. He doesn't reflux unless his body is not properly digesting a food. So, that is noted. His flat affect was very concerning, his "poker face" as his daddy calls it- an expression-less deameanor with no interactive play. But he didn't have that much today, and the refluxing pain was less as well. We felt everything looked stable enough to at least continue this at home- sleeping in his own bed and playing with his brothers, getting back into our routine may help filter out his fussy spells and disturbed sleep -- or it may make it more clear.
Whatever happens, we have a plan. If things stay the same- we continue soy and have our follow up with GI at the end of next week. If symptoms build, and are not vomiting/diarrhea/dehydration/lethargy- we call GI and go in for direct admission back to be monitored; if vomiting/diarrhea or concerns of dehydration and lethargy - we go right to the ER. We have a plan, a "safety net". We have a new level of stress relief, a heavy-heavy weight lifted off our shoulders.
Little man giggled when we walked out to the van after being dismissed - as soon as he saw the van, he giggled. He got excited to get into his carseat and sang on the way home, calling for "daddy" (his new favorite word). I've spent most of the time with him at the hospital, so he has missed his favorite playmate- daddy....and of course his brothers (we've been working on him learning how to say their names).
We continue with soy, mixed into his formula - increasing every day...unless we see new symptoms that deserve attention. I'm still nervous to call it a "pass". Soy is so closely related to dairy and his dairy intolerance is so sensitive, we've never even "trialed" a whole dairy protein because of his reactions to dairy in my breastmilk and from crumbs and from hydrolyzed formula's. What if he builds up an intolerance to soy? What if we're pushing his body? On the other hand, soy is a common FPIES trigger and if he could truly pass this, and thrive on it -- would really give us hope that we can do bigger food trials with more confidence.....although there is no rhyme or reason to FPIES triggers in kids but to have so many fails only under our belt- it will feel good to have a pass, especially such a big one.....
Wednesday, November 3, 2010
Next steps...
As promised, I am going to attempt to write about our new GI doctor and experience. You see, I am still processing through how so very awesome she is, and the perfect fit for us and, we hope, someone to help us continue to solve our little FPIES puzzle. As many know, I have struggled not only finding Little man's diagnosis but the team of physicians that would help me care for his needs enveloping this chronic illness. This chronic illness that has become complex, so my drive to find the specialists he needs has been strong. I can't do this on my own, no matter how strong I am, no matter my convictions, my instincts....I did not go to medical school and I need help making sure I am keeping him healthy through this.
I may finally have this, help....and a team that is not only recognizing and acknowledging his diagnosis for what it is but is anxious to help with the ill effects he has suffered from it. Amazing, truly amazing. This journey has been long and we are no where near at the end of the road yet but to have a TEAM will help assure Little Man stays healthier despite his FPIES and will help support my caring for him through it.
With the transfusion successfully behind us on Monday morning, we were able to have a great discussion with the new GI we arranged to have Little Man's care switched over to. Right away she was saying things that echoed my thoughts....much like we already have with our pediatrician -- someone who "gets" us, someone who hears and understands our concerns and uses that to help guide treatment within their knowledge and experience. I have had a drive to only include physician's that I can trust....this is a clinical diagnosis, trust is big. But clinical diagnosis aside, I have always felt this way about doctors. You should always feel a trust in the medical professional that you depending on to assist you with any illness....this trust comes into play deeply when you/your child is very ill and your focus goes to only their immediate needs and not their medical record. I need to be able to trust that the physicians caring for my children trust me, and I trust them.
The GI doctor and I talked about past reactions, she wanted to know details of which foods they were, time frames, anything I could tell her. Well, what couldn't I tell her? I have kept a log from April on, and I had pages of notes from before that even. I referenced back to this and I created a chart for her -- although it was 20pages long, I wanted her to know and see the patterns to his reactions....the "build" one's, the immediate ones, the questionable ones, and how we got to this point we are at now.....She loved it! It was exactly what she wanted, and the format was perfect for her own self-declared OCD! She wanted this list to help her understand MY perspective, not only what the many notes from the chart have to say but MY perspective that may not be included as well in the chart notes. She wanted these records so we could leave the past in the past and only continue to move forward but not forgetting where we came from so taking what we need to learn from the past and utilizing it but always moving forward. Little Man's health is top priority. My thoughts exactly.
Finding the source of his bleeding, or malabsorbtion, or what-is-making-his-iron-go-so-low "puzzle" is a priority for her. So, she orders a Meckels Scan to check to be sure he does not have a Meckels diveritculum that could be causing pain and blood in stools. After a whole day being NPO, the scan was finally done at 4pm and the results were read later - negative. He does not have a Meckels diverticulum. This was one of those times when that is both good news and bad news at the same time. Good news that he doesn't have it and require surgery to remove it; but bad news because it would explain something and it is something that they could fix right away! So, moving on....
The next test will be an iron absorption challenge. This will test to see if he is absorbing his iron in the small intestine the way he should be. We didn't go on to discuss a future scope but that would likely be next steps if this tests is also "negative". The great GI we saw last week (for a 2nd opinion/resource/support) agreed that he would recommend a scope as well as checks on his other vitamin blood levels for clues into his absorbption. I hope we solve that soon because last night, he had a diaper with blood in it. Barely noticeable and it actually was "negative" on the hemocult test (blood in stool) but it may have been a sample from outside of the area in the diaper where the blood was. The GI doctor and nurse last night both saw the diaper themselves. The GI doctor is calling him her little "puzzle" (again, echoing my thoughts!)....he has been a puzzle.
The key difference with her calling Little Man's FPIES a puzzle is that she isn't utilizing that to dismiss it but want to solve it more. She said she would call it "Atypical FPIES" in that his presentation and complexity is not the typical course (he didn't read the research literature). Maybe this is because his FPIES trigger is corn? Corn is in so many things, his body has been "attacked" off and on for so long. How much can one little body take?
Corn is where his FPIES was born, dairy is scary, rice was not nice. But soy - soy has always been questionable. Clearly his body was not tolerating it at the time and we did not continue it after a few weeks of symptoms that were adding up. But reviewing notes now, it could have been the corn syrup in the formula we were using, it could have been the rice he was getting at the time, or another food yet unidentified. Two of our other boys were dairy intolerant, but did fine on soy; they also both outgrew their dairy intolerance's. Discussions with Allergists and the new GI and we feel we have all of these things going for him; and the need for improved nutrition, and we're in the hospital in a routine by now....we decided to challenge soy!
A soy pass would open up a lot of windows. It is still a plant based protein, so the iron wouldn't be that much different than the iron he is getting now. But soy is in as many things as corn- so to not have to worry about soy would be huge. Preservatives and additives in foods, "processed on same equipment" foods, vitamins, legumes, and of course SOY! And that only includes food- what about all the non-food? Bath soap, toothpaste, crayons,....Ok, I'm getting ahead of myself because we are only 4hrs. in to his soy challenge but he has had 4oz. and is doing GREAT.
It has been a whirlwind couple days and I will have more to update on later but I hope things puts a little window to how things have been for Little man over the past few days....
I may finally have this, help....and a team that is not only recognizing and acknowledging his diagnosis for what it is but is anxious to help with the ill effects he has suffered from it. Amazing, truly amazing. This journey has been long and we are no where near at the end of the road yet but to have a TEAM will help assure Little Man stays healthier despite his FPIES and will help support my caring for him through it.
With the transfusion successfully behind us on Monday morning, we were able to have a great discussion with the new GI we arranged to have Little Man's care switched over to. Right away she was saying things that echoed my thoughts....much like we already have with our pediatrician -- someone who "gets" us, someone who hears and understands our concerns and uses that to help guide treatment within their knowledge and experience. I have had a drive to only include physician's that I can trust....this is a clinical diagnosis, trust is big. But clinical diagnosis aside, I have always felt this way about doctors. You should always feel a trust in the medical professional that you depending on to assist you with any illness....this trust comes into play deeply when you/your child is very ill and your focus goes to only their immediate needs and not their medical record. I need to be able to trust that the physicians caring for my children trust me, and I trust them.
The GI doctor and I talked about past reactions, she wanted to know details of which foods they were, time frames, anything I could tell her. Well, what couldn't I tell her? I have kept a log from April on, and I had pages of notes from before that even. I referenced back to this and I created a chart for her -- although it was 20pages long, I wanted her to know and see the patterns to his reactions....the "build" one's, the immediate ones, the questionable ones, and how we got to this point we are at now.....She loved it! It was exactly what she wanted, and the format was perfect for her own self-declared OCD! She wanted this list to help her understand MY perspective, not only what the many notes from the chart have to say but MY perspective that may not be included as well in the chart notes. She wanted these records so we could leave the past in the past and only continue to move forward but not forgetting where we came from so taking what we need to learn from the past and utilizing it but always moving forward. Little Man's health is top priority. My thoughts exactly.
Finding the source of his bleeding, or malabsorbtion, or what-is-making-his-iron-go-so-low "puzzle" is a priority for her. So, she orders a Meckels Scan to check to be sure he does not have a Meckels diveritculum that could be causing pain and blood in stools. After a whole day being NPO, the scan was finally done at 4pm and the results were read later - negative. He does not have a Meckels diverticulum. This was one of those times when that is both good news and bad news at the same time. Good news that he doesn't have it and require surgery to remove it; but bad news because it would explain something and it is something that they could fix right away! So, moving on....
The next test will be an iron absorption challenge. This will test to see if he is absorbing his iron in the small intestine the way he should be. We didn't go on to discuss a future scope but that would likely be next steps if this tests is also "negative". The great GI we saw last week (for a 2nd opinion/resource/support) agreed that he would recommend a scope as well as checks on his other vitamin blood levels for clues into his absorbption. I hope we solve that soon because last night, he had a diaper with blood in it. Barely noticeable and it actually was "negative" on the hemocult test (blood in stool) but it may have been a sample from outside of the area in the diaper where the blood was. The GI doctor and nurse last night both saw the diaper themselves. The GI doctor is calling him her little "puzzle" (again, echoing my thoughts!)....he has been a puzzle.
The key difference with her calling Little Man's FPIES a puzzle is that she isn't utilizing that to dismiss it but want to solve it more. She said she would call it "Atypical FPIES" in that his presentation and complexity is not the typical course (he didn't read the research literature). Maybe this is because his FPIES trigger is corn? Corn is in so many things, his body has been "attacked" off and on for so long. How much can one little body take?
Corn is where his FPIES was born, dairy is scary, rice was not nice. But soy - soy has always been questionable. Clearly his body was not tolerating it at the time and we did not continue it after a few weeks of symptoms that were adding up. But reviewing notes now, it could have been the corn syrup in the formula we were using, it could have been the rice he was getting at the time, or another food yet unidentified. Two of our other boys were dairy intolerant, but did fine on soy; they also both outgrew their dairy intolerance's. Discussions with Allergists and the new GI and we feel we have all of these things going for him; and the need for improved nutrition, and we're in the hospital in a routine by now....we decided to challenge soy!
A soy pass would open up a lot of windows. It is still a plant based protein, so the iron wouldn't be that much different than the iron he is getting now. But soy is in as many things as corn- so to not have to worry about soy would be huge. Preservatives and additives in foods, "processed on same equipment" foods, vitamins, legumes, and of course SOY! And that only includes food- what about all the non-food? Bath soap, toothpaste, crayons,....Ok, I'm getting ahead of myself because we are only 4hrs. in to his soy challenge but he has had 4oz. and is doing GREAT.
It has been a whirlwind couple days and I will have more to update on later but I hope things puts a little window to how things have been for Little man over the past few days....
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