We get settled into a hospital room and begin getting initial test results back. They are good. Well, no answers isn't good but ruling out things like meningitis and Guillian Barre is good. Our pediatrician comes to do an assessment, we discuss the recent events and symptoms leading up to today, he discusses that we will wait for the CSF (cerebral spinal fluid) levels to come back and then that will help decide which direction next steps will be. It is less than an hour and he is back with the initial results, which are clear- no signs of anything concerning. He has consulted with Infectious disease to be sure they aren't missing anything and now we need to explore the other path...his nutrition.
Right now, with so many other things ruled out. This is where I am at too. He either has some nutritional deficiency or he is reacting to the new probiotic.
With the Kirkman's probiotic, he tolerated the Lactobacillus strains but every time I tried to do a bifida strain, he would get a fever or flu like symptoms. An exchange with Dr.J and she advised to stick with the one strain for awhile, that his body was not ready for more yet. That was a few months ago, realizing that healing takes time but we've been stuck lately so when it was suggested we try a new custom probiotics; I thought it was worth the try as well.
We've been getting fluctuations of symptoms- symptoms can happen when starting a probiotic, especially if there is severe dysbiosis of gut flora, like little man surely has. I tried to increase the dose and he had a bloody diaper so I backed off a week ago, now today- this morning- he had blood in his stool again. My suspicion of the probiotic grows...
I called the "bug guy" tonight as soon as I got home from the hospital. He reports that his probiotics are clean, no added/inert or cultured ingredients. My question is: is he reacting to the ingredients (unknown) or is he reacting to the bugs itself? The "bug guy" feels it is the probiotic- that his dysregulated immune system is not handling these (tiny) doses. His advice is to stop probiotics for 2 full weeks, or more. If symptoms improve, we can assume he was reacting to the probiotic bugs- and to build him up MUCH more slowly...dissolving the same dose I have been giving him in a cup of water and then only giving him 1-2tsp from that cup/day. It is something to consider but have to admit, I am nervous....
Labs are initially coming back: Hemoglobin is dropping fast, now a 9.6 (last check was 10.3); Sodium is a little low but he's been sick and didn't drink well today; his chloride is a little low- probably for the same reasons his sodium is;his LDH is high but I am not really sure what that means yet. His total protein is low but not sure what that means as his Albumin is ok- although falling. So far, everything else is ok- but we are waiting on some more nutrient ones...especially B-12. (sorry if this doesn't mean anything to some but wanted to share for those who know what it all means). We'll have more insights tomorrow when more are back and we can step back and look at the picture.
My head is still spinning...I do everything I can....he is more and more allergic, his responses only getting worse. I know very well he needs micronutrients that he is missing for a strong immune system, a strong body- but if he is given foods that his body rejects, he becomes very sick and is set back even more. How do I get him these missing nutrients?
We are once again trapped, between a rock and a hard place. Trapped in evidenced based medicine and objective data with a clinical diagnosis based more on the subjective individuality of the child's own specific responses than any book can teach.
Little man is teaching, and his doctors are working hard at trying to understand his body, but there is just not enough known about the common mechanisms of this disorder to fully understand all the branches it takes off as. We are thankful our trip to CHOP is fast approaching. We are more-than-words-could-ever-express grateful that our good friends are loaning us their RV (again) so we can go as a family...staying together thru this is important to us.
We discuss TPN with our Pediatrician. We aren't sure what to do. Could he use some complimentary nutrition right now? We already know he could, but he is holding his weight, he is eating, he got IV iron today, and all his nutrition labs come back all within normal limits- he is not being "malnourished"...his nutrition is not ideal. I KNOW that, I have always known that. I would give my legs to feed my child, to nourish his body without it hurting him.
Showing posts with label nutrition. Show all posts
Showing posts with label nutrition. Show all posts
Thursday, August 11, 2011
Sunday, February 13, 2011
Tailored Nutrition for FPIES?
My brain isn't going to shut off until after I've visited with Dr.J....then I'm taking an FPIES vacation!! Well, not really as we know that isn't possible but....
After reading through some of Dr.J's research, and then the Nutrigenomic course. My thoughts go back to where I was before these readings, before hearing of the promising links with Dr.J's research....that FPIES needs guidelines for food introductions/trials, with a solid understanding of why but then each child needs their own individualized introductions. From the order of foods, to the days of trials, to the amount of the trial and how many foods you do in a set time period. Is this the missing link? A tailored nutrition program for food introductions and FPIES diet?
Even from the beginning- doctors were trying to put Little Man in a box he didn't fit in....am I trying to do the same? FPIES protocols have been developed but I also hear of mom's going "off the beaten path" and trying something new- and it works! Or just adding to current protocols, and finding success. The common thread is that everyone uses FPIES protocols as the base and adapts them to their child's needs, their lifestyle, their contributing complexities (genetic or environmental). What will work for our Little Man?
A few months ago, with thoughts of food trials whirling in my head, shortly after soy trial in which things seemed to go "ok" (some build symptoms but nothing major) for 3 days and then by day 4 everything fell apart and came crashing down around us. A thought came to me that maybe we are looking at it from the wrong angle for Little Man. Maybe he needs 3day trials, or 3 different foods at the same time?
His soy fail symptoms were no doubt because of the large volumes we were giving him had something to do with how hard he crashed but his body wasn't tolerating it- would a long trial have made any difference? But a pattern was noted, Little Man seems to do ok on a food for 3days (with other trials and before FPIES diagnosis), and then by the 4th day is when things start to cascade- is it build symptoms or yeast die off from gut microflora changes, or is it the body fighting to win the imbalance with the immune response? What makes his body want to accept a food, seemingly have developments of oral tolerance, and then hit with the attack mechanisms? Why the delay? Why the build? This is where our FPIES protocol needs to be adapted for our little man specific needs.....where nutrition meets immune response?....where nutrition meets genetics?.....click, click, click- I can't seem to make it all fit together....
Back to my thought a few months ago...I just kept thinking- what if we trialed something for 3 days and then switched it up? Not giving his body the chance to build the intolerance mechanisms? Or, what if we trialed 3 foods at the same time, 3 foods that would have different roles on gut response? We didn't trial hemp, arrowroot or safflower oil...why did those work out? Then again, tapioca was before arrowroot and that fail landed us in the hospital with a very sick little man with acidosis.
So, what do we risk? We risk a reaction. Well, we risk a reaction with every food trial. What we really risk is a reaction and not knowing what from; but with a build reactor- we risk that anyway already. We risk introducing foods and then having to take them away; but with Little man- he barely any foods anyway- so what do we have to lose? He isn't gaining weight like he should be, he is missing micro nutrients, he begs for food....is this just my desperation talking?
Right now, we are still trialing coconut. We had a chicken ingestion...not intended but I didn't stop him either...bad, bad mommy but I wanted to see if he would actually put it in his mouth or chew it, he did - we regretted it. The chicken had seasoning on it that was corn derived. He didn't directly eat the seasoning and really barely directly ate the chicken but he suffered for it. Not a full blown reaction, but enough for him to associate what he had eaten the day before with the pain and symptoms that followed. He stopped accepting the newly trialing coconut. Even stopped eating for a day. Restless sleep, wide awake sleep disturbance, acidic poop, diaper rash, rosy cheeks, ongoing fussiness, pallor....and he stopped eating. Stopped trusting food, even his formula (which most often he will consume more of when his tummy is hurting). So, was it the seasoned chicken (crock pot chicken sitting in chicken broth with seasoning salt on it- he got an inside piece, reached for it and grabbed it while I made dinner for his brothers) or was it a build from the coconut? We had done 3 days of coconut and then stopped for a day, this was the day of reintroduction, had planned to wait until the next morning but had to distract him from taking away the chicken (he wanted to eat more, but even knew he couldn't- put his hand over the plate of cut up chicken for his brothers and said "no-no" waving his hand over it....so sad). I gave him a spoon of coconut butter (a spread made out of coconut) to distract him- so the re-trial of coconut began that night instead of the next morning as planned. But, then he refused the coconut milk I had made for the trial for the next 3days; although he did eat his safe peaches.
We have also re-introduced the millet puffs. At this point, it came down to a risk vs. benefit decision. We do not know for sure if the potential cross contamination of wheat with these puffs is a real issue for him or not; we don't even know if he has an intolerance to wheat, except through suspicions from reactions through my breastmilk when he was still nursing (way before FPIES knowledge or diagnosis). He LOVES his millet puffs, including them in his diet gives him a consistent snack, a finger food, a texture practice...and he tries new foods much more readily when he consumes them daily. We don't see any consistent symptoms that we could relate to the puffs- we had pulled and re-introduced them many times before in the past as well to be sure; so for now- we will keep them in his diet....until something arises that will outweigh his benefit vs. risk. For now the benefit outweighs the risk.
So, right now he consumes millet puffs consistently. I still am making merry muffins with millet flour and peaches, oil, baking soda and arrowroot but he doesn't love them so doesn't eat them everyday. He doesn't even eat his peaches everyday. It's as if he knows, he can handle them every 2-3days but not everyday.
Millet puffs, millet flour, peaches, trialing coconut and without knowing if coconut is safe, we have started an apricot trial. In the middle of an apricot trial, we have given him raw organic carrot sticks twice. He has 3 foods, in TEENY TINY amounts that he is consuming, that I have no idea if they are safe....but I don't know they aren't safe...
What will I do if he reacts? I don't know. Fall apart and pick myself up again as I have done dozens of times throughout the last 20mo. But maybe too, we'll connect another piece to the puzzle. And maybe, just maybe he won't react and we'll build his tiny menu.
He has been sleeping better, playing well during the day but he had mucous in his diaper this morning and a pallor look to his face. But, he may have (likely did) ingest bath soap 2 nights ago! We have a "safe" soap for him of coconut oil but that night, his 3yr old brother dumped bath soap, regular Johnson's bath soap, in the tub before I could notice. No vomiting from it, so assumed he just got some drips of water washing over his face and not actually drank it. He had wet burps and hiccups almost immediately following the bath, disturbed sleep that night with stomach pains.
Are we tired yet? This is all just this week. How do we move forward when every food causes some symptoms? How do we introduce foods he won't eat? How do we get him to take his formula when he has symptoms from a food and associates eating with pain? How do we get him to sleep better at night when he needs more calories in his diet during the day? We need a break in this viscous cycle....will the missing puzzle pieces be that break? Will a tailored nutrition protocol based on Little Man's intolerances, his delayed reactions, nutrition from his formula, his personal gut microflora? Nutrition from functional foods, pre and probiotics, missing micrnutrients...all tailored for his specific needs within his FPIES.....what if this could work?
After reading through some of Dr.J's research, and then the Nutrigenomic course. My thoughts go back to where I was before these readings, before hearing of the promising links with Dr.J's research....that FPIES needs guidelines for food introductions/trials, with a solid understanding of why but then each child needs their own individualized introductions. From the order of foods, to the days of trials, to the amount of the trial and how many foods you do in a set time period. Is this the missing link? A tailored nutrition program for food introductions and FPIES diet?
Even from the beginning- doctors were trying to put Little Man in a box he didn't fit in....am I trying to do the same? FPIES protocols have been developed but I also hear of mom's going "off the beaten path" and trying something new- and it works! Or just adding to current protocols, and finding success. The common thread is that everyone uses FPIES protocols as the base and adapts them to their child's needs, their lifestyle, their contributing complexities (genetic or environmental). What will work for our Little Man?
A few months ago, with thoughts of food trials whirling in my head, shortly after soy trial in which things seemed to go "ok" (some build symptoms but nothing major) for 3 days and then by day 4 everything fell apart and came crashing down around us. A thought came to me that maybe we are looking at it from the wrong angle for Little Man. Maybe he needs 3day trials, or 3 different foods at the same time?
His soy fail symptoms were no doubt because of the large volumes we were giving him had something to do with how hard he crashed but his body wasn't tolerating it- would a long trial have made any difference? But a pattern was noted, Little Man seems to do ok on a food for 3days (with other trials and before FPIES diagnosis), and then by the 4th day is when things start to cascade- is it build symptoms or yeast die off from gut microflora changes, or is it the body fighting to win the imbalance with the immune response? What makes his body want to accept a food, seemingly have developments of oral tolerance, and then hit with the attack mechanisms? Why the delay? Why the build? This is where our FPIES protocol needs to be adapted for our little man specific needs.....where nutrition meets immune response?....where nutrition meets genetics?.....click, click, click- I can't seem to make it all fit together....
Back to my thought a few months ago...I just kept thinking- what if we trialed something for 3 days and then switched it up? Not giving his body the chance to build the intolerance mechanisms? Or, what if we trialed 3 foods at the same time, 3 foods that would have different roles on gut response? We didn't trial hemp, arrowroot or safflower oil...why did those work out? Then again, tapioca was before arrowroot and that fail landed us in the hospital with a very sick little man with acidosis.
So, what do we risk? We risk a reaction. Well, we risk a reaction with every food trial. What we really risk is a reaction and not knowing what from; but with a build reactor- we risk that anyway already. We risk introducing foods and then having to take them away; but with Little man- he barely any foods anyway- so what do we have to lose? He isn't gaining weight like he should be, he is missing micro nutrients, he begs for food....is this just my desperation talking?
Right now, we are still trialing coconut. We had a chicken ingestion...not intended but I didn't stop him either...bad, bad mommy but I wanted to see if he would actually put it in his mouth or chew it, he did - we regretted it. The chicken had seasoning on it that was corn derived. He didn't directly eat the seasoning and really barely directly ate the chicken but he suffered for it. Not a full blown reaction, but enough for him to associate what he had eaten the day before with the pain and symptoms that followed. He stopped accepting the newly trialing coconut. Even stopped eating for a day. Restless sleep, wide awake sleep disturbance, acidic poop, diaper rash, rosy cheeks, ongoing fussiness, pallor....and he stopped eating. Stopped trusting food, even his formula (which most often he will consume more of when his tummy is hurting). So, was it the seasoned chicken (crock pot chicken sitting in chicken broth with seasoning salt on it- he got an inside piece, reached for it and grabbed it while I made dinner for his brothers) or was it a build from the coconut? We had done 3 days of coconut and then stopped for a day, this was the day of reintroduction, had planned to wait until the next morning but had to distract him from taking away the chicken (he wanted to eat more, but even knew he couldn't- put his hand over the plate of cut up chicken for his brothers and said "no-no" waving his hand over it....so sad). I gave him a spoon of coconut butter (a spread made out of coconut) to distract him- so the re-trial of coconut began that night instead of the next morning as planned. But, then he refused the coconut milk I had made for the trial for the next 3days; although he did eat his safe peaches.
We have also re-introduced the millet puffs. At this point, it came down to a risk vs. benefit decision. We do not know for sure if the potential cross contamination of wheat with these puffs is a real issue for him or not; we don't even know if he has an intolerance to wheat, except through suspicions from reactions through my breastmilk when he was still nursing (way before FPIES knowledge or diagnosis). He LOVES his millet puffs, including them in his diet gives him a consistent snack, a finger food, a texture practice...and he tries new foods much more readily when he consumes them daily. We don't see any consistent symptoms that we could relate to the puffs- we had pulled and re-introduced them many times before in the past as well to be sure; so for now- we will keep them in his diet....until something arises that will outweigh his benefit vs. risk. For now the benefit outweighs the risk.
So, right now he consumes millet puffs consistently. I still am making merry muffins with millet flour and peaches, oil, baking soda and arrowroot but he doesn't love them so doesn't eat them everyday. He doesn't even eat his peaches everyday. It's as if he knows, he can handle them every 2-3days but not everyday.
Millet puffs, millet flour, peaches, trialing coconut and without knowing if coconut is safe, we have started an apricot trial. In the middle of an apricot trial, we have given him raw organic carrot sticks twice. He has 3 foods, in TEENY TINY amounts that he is consuming, that I have no idea if they are safe....but I don't know they aren't safe...
What will I do if he reacts? I don't know. Fall apart and pick myself up again as I have done dozens of times throughout the last 20mo. But maybe too, we'll connect another piece to the puzzle. And maybe, just maybe he won't react and we'll build his tiny menu.
He has been sleeping better, playing well during the day but he had mucous in his diaper this morning and a pallor look to his face. But, he may have (likely did) ingest bath soap 2 nights ago! We have a "safe" soap for him of coconut oil but that night, his 3yr old brother dumped bath soap, regular Johnson's bath soap, in the tub before I could notice. No vomiting from it, so assumed he just got some drips of water washing over his face and not actually drank it. He had wet burps and hiccups almost immediately following the bath, disturbed sleep that night with stomach pains.
Are we tired yet? This is all just this week. How do we move forward when every food causes some symptoms? How do we introduce foods he won't eat? How do we get him to take his formula when he has symptoms from a food and associates eating with pain? How do we get him to sleep better at night when he needs more calories in his diet during the day? We need a break in this viscous cycle....will the missing puzzle pieces be that break? Will a tailored nutrition protocol based on Little Man's intolerances, his delayed reactions, nutrition from his formula, his personal gut microflora? Nutrition from functional foods, pre and probiotics, missing micrnutrients...all tailored for his specific needs within his FPIES.....what if this could work?
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