We are always thinking of next steps...there is always something to be working on and working towards. The scope following 3weeks of TPN revealed a healed gut (no inflammation and restored villi), IV iron successful in re-establishing his iron stores and red blood cells. First step after TPN was re-establishment of his formula intakes. It took a few days for him to re-adjust back to the calories and ounces he needed to but he did and is now taking it well, asking for his bottle. Multivitamin trial was next. Multivitamin = fail. Disheartened because we were so hopeful. Hopeful that we could find a vitamin to round out his hemp milk formula of the nutrients it is low/lacking, hopeful that a fermented corn-starch derived Vit.C would not trigger a reaction. But, a mere 3 doses in- and violent vomiting followed by 3 days of diarrhea with dehydration.
And now, the waiting....waiting for intestinal healing, for the inflammation to subside. Outward signs of this? Weight gain, little to no sleep disturbance, no reflux pain....back to baseline. We don't have that yet. It's only been a week. Previous monitoring following reactions reveals that it takes a minimum 2weeks for Little Man's gut to heal- for him to get back to baseline. A weight check this week at our GI appt shows weight maintenance. We will follow up with a weight check again this week, as we watch and wait for any other signs of active inflammation to subside.
Next steps?
1. Sorghum puffs. Ordered online, waiting for them to arrive. I also have sorghum flour- so we will do a full trial (really hoping for an uneventful trial- it is a "bland" flour), adding the flour to his Merry Muffins and letting him eat the puffs. Sorghum doesn't move us ahead on the nutrients front too much, but it does help his aversions and actually EATING his foods to trial. The daily millet puffs really helped overcome a lot of gagging issues he was having, gagging issues we are seeing again. The millet puffs have potential for cross contamination (despite millet itself being a gluten free food), so we are not allowing those for now (if ever). Another mom found the sorghum puffs, so it was decided we will trial this next- to advance his oral motor skills.
2. Quinoa. Quinoa provides another good source of proteins, while also giving us a psuedo-grain to work with (quinoa is a seed) for muffins, cereal, breads, ec. There are vitamins and iron he needs in his diet. Hemp is a seed, quinoa is a seed. Quinoa also comes in puffs- another snack.
3. Beets and Spinach. Beets, spinach, and quinoa are in the same family. "Foods belonging to the chenopod family-including beets, chard, spinach and quinoa-continue to show an increasing number of health benefits not readily available from other food families". This link offers great information on not only the nutrition but the anti-inflammatory and many benefits of "powerhouse" of beets, spinach and quinoa: WHFoods. Beets and spinach can be hidden in foods (like his muffins, some cookies and biscuit type product) cooked with the Quinoa! What a great combination...if he passes....
4. Multivitamin- this remains a dilemma. I am hopeful (optimistically and maybe delusional) that we could build him a tiny menu specifically attuned to his nutrient needs. But the reality is that we may not get there. Because we do not want to risk continued fails, from corn derived ingredients in processed vitamins, we are taking a pause for continued research while doing food trials. We will be coming back to the vitamin....
This could all take up to 6-8weeks to accomplish- depending on how these foods treat his body. It could take longer if we have a fail, depending on the extent of the fail. Stay tuned, we are hoping to start step #1 by the end of this week/this weekend- sorghum puffs!
Showing posts with label Multivitamin. Show all posts
Showing posts with label Multivitamin. Show all posts
Saturday, January 15, 2011
Sunday, January 9, 2011
Multivitamin trial....the rest of the story
If you're tuning in to find out how the multivitamin trial is going....it's not. We left off on Day 3, diaper blow out in the afternoon. His formula intake was increasing and he was getting fussy but remained optimistic, until the vomiting....
Projectile, forceful, violent until emptied stomach contents...sigh....sigh...sigh. This reaction reminded us a lot of when he was reacting while breastfeeding (trace proteins in my diet were likely culprits some days) because he was up for drinking his formula (he always was a comfort nurser too) and we feel this really helped him as he seemed to be doing ok. Of course, he was tired but I wouldn't call it lethargic -- it's always hard to tell at bedtime because of course they want to sleep...it's bedtime and they just emptied the contents of their stomach...I'd be tired too. But, his breathing and color were ok, and he drank a good amount of formula before going to sleep. So, we were feeling it was a "minor" reaction (it was after all just trace proteins). That is until the loose stools/diarrhea started....and they haven't stopped. He was awakened 3x during the night for explosive diapers, and continued to have them all day Friday, but then they seemed to be starting to thicken up (he was eating really well on Friday). So, things were looking good- his behavior was good and his color still looked ok.
Things started to turn around nap time (what nap time?). He couldn't settle in to sleep and I spent half the afternoon just trying to make him comfortable enough so he could find that rest his body was needing. Little Man's daddy and I decide, we are done with the vitamin. This was a "minor" reaction, from TRACE proteins and he is experiencing all of the all-too-familiar-going-on-and-on reaction symptoms. Friday evening started to bring on concerns as his color started to look off. We got stool samples to check for infectious sources of his diarrhea and we attempted to get a lab draw. From previous lab draws around reactions, we have observed that he gets elevated platelets, and often has decreased leukocytes as well. And then, there is always concern for his hemoglobin and his hydration. No lab draw, all attempts failed and all we were left with was a very unhappy and tired little boy. Having difficulty finding a vein, and difficulty drawing from that vein are very typical for Little Man around a reaction, also very typical among other FPIES children (from what other mom's share)....this is one of the reasons why an immediate IV for fluids is advised- not only for hydration but also because of the affects it has on the body only makes it more difficult to find that vein needed to start the IV fluids.
We have learned another lesson about Little Man and I am prompted to push once again for more detailed needs specific to his condition to be in his chart....we should have gone to the ER with that vomiting. But it wasn't severe, and he drank right after....but his body needed that IV. But I have no doubts that doctors would have disagreed- his color was still good, he wasn't lethargic, he wasn't dehydrated looking, and he was drinking....we would have wasted our time trying to convince ER doctors not familiar with our son and his very rare condition, that the IV would help him. Unfortunately, this is part of the nature of this diagnosis. The unfamiliarity of it leaves the parents making choices and decisions on their own that would otherwise be better guided by experienced medical staff. Little man has had more minor reactions than full blown, we are fortunate in that he doesn't always experience full shock- his body has had times of shock symptoms and also acidosis but these are not immediate- only after days of "fighting" and his poor little body can't take anymore, does he start to exhibit these signs. Would the immediate IV help? The thought (and experience from other moms) is: yes,it does. But, again- you can't just show up in an ER and expect doctors to insert an IV on a child that isn't currently in shock, or even to the point of dehydration...yet. How do we change this for Little Man? How do we change this for all FPIES children?
Typical allergies, with IgE mediated immune response, children carry epi-pens so that parents/caregivers are enabled to help their children, while still seeking out medical assistance. Non-IgE (FPIES) children carry an ER letter that describes an full blown attack with the recommendations for an IV and maybe even steroids-- but so many times the attack stops by the time you get to the ER, or the attack is seemingly minor (although I challenge someone to watch your baby vomit as violently as FPIES kids do and call it minor- we have classified it as minor because we have seen, and heard of, worse). Vomiting 50x in one hour, and your child's heart stopping- that is worse, that is "full blown"....so my Little Man vomiting 4x in 15minutes until his stomach is empty and dry heaving but then stopping- that is "minor". But both scenario's need medical assistance, need the IV (and maybe someday there will be even better treatment options to helping stop the reaction) but for now- getting the toxin out of the body is the body's only defense mechanism. And maybe the IV not only helps with hydration so the body can re-coop better; maybe it helps to "flush" the system. It would be nice to know if this is something that would help our Little Man. We will look to try and get his chart updated, once again, to reflect his needs-- should this kind of reaction happen again; and given his history, it will....
Projectile, forceful, violent until emptied stomach contents...sigh....sigh...sigh. This reaction reminded us a lot of when he was reacting while breastfeeding (trace proteins in my diet were likely culprits some days) because he was up for drinking his formula (he always was a comfort nurser too) and we feel this really helped him as he seemed to be doing ok. Of course, he was tired but I wouldn't call it lethargic -- it's always hard to tell at bedtime because of course they want to sleep...it's bedtime and they just emptied the contents of their stomach...I'd be tired too. But, his breathing and color were ok, and he drank a good amount of formula before going to sleep. So, we were feeling it was a "minor" reaction (it was after all just trace proteins). That is until the loose stools/diarrhea started....and they haven't stopped. He was awakened 3x during the night for explosive diapers, and continued to have them all day Friday, but then they seemed to be starting to thicken up (he was eating really well on Friday). So, things were looking good- his behavior was good and his color still looked ok.
Things started to turn around nap time (what nap time?). He couldn't settle in to sleep and I spent half the afternoon just trying to make him comfortable enough so he could find that rest his body was needing. Little Man's daddy and I decide, we are done with the vitamin. This was a "minor" reaction, from TRACE proteins and he is experiencing all of the all-too-familiar-going-on-and-on reaction symptoms. Friday evening started to bring on concerns as his color started to look off. We got stool samples to check for infectious sources of his diarrhea and we attempted to get a lab draw. From previous lab draws around reactions, we have observed that he gets elevated platelets, and often has decreased leukocytes as well. And then, there is always concern for his hemoglobin and his hydration. No lab draw, all attempts failed and all we were left with was a very unhappy and tired little boy. Having difficulty finding a vein, and difficulty drawing from that vein are very typical for Little Man around a reaction, also very typical among other FPIES children (from what other mom's share)....this is one of the reasons why an immediate IV for fluids is advised- not only for hydration but also because of the affects it has on the body only makes it more difficult to find that vein needed to start the IV fluids.
We have learned another lesson about Little Man and I am prompted to push once again for more detailed needs specific to his condition to be in his chart....we should have gone to the ER with that vomiting. But it wasn't severe, and he drank right after....but his body needed that IV. But I have no doubts that doctors would have disagreed- his color was still good, he wasn't lethargic, he wasn't dehydrated looking, and he was drinking....we would have wasted our time trying to convince ER doctors not familiar with our son and his very rare condition, that the IV would help him. Unfortunately, this is part of the nature of this diagnosis. The unfamiliarity of it leaves the parents making choices and decisions on their own that would otherwise be better guided by experienced medical staff. Little man has had more minor reactions than full blown, we are fortunate in that he doesn't always experience full shock- his body has had times of shock symptoms and also acidosis but these are not immediate- only after days of "fighting" and his poor little body can't take anymore, does he start to exhibit these signs. Would the immediate IV help? The thought (and experience from other moms) is: yes,it does. But, again- you can't just show up in an ER and expect doctors to insert an IV on a child that isn't currently in shock, or even to the point of dehydration...yet. How do we change this for Little Man? How do we change this for all FPIES children?
Typical allergies, with IgE mediated immune response, children carry epi-pens so that parents/caregivers are enabled to help their children, while still seeking out medical assistance. Non-IgE (FPIES) children carry an ER letter that describes an full blown attack with the recommendations for an IV and maybe even steroids-- but so many times the attack stops by the time you get to the ER, or the attack is seemingly minor (although I challenge someone to watch your baby vomit as violently as FPIES kids do and call it minor- we have classified it as minor because we have seen, and heard of, worse). Vomiting 50x in one hour, and your child's heart stopping- that is worse, that is "full blown"....so my Little Man vomiting 4x in 15minutes until his stomach is empty and dry heaving but then stopping- that is "minor". But both scenario's need medical assistance, need the IV (and maybe someday there will be even better treatment options to helping stop the reaction) but for now- getting the toxin out of the body is the body's only defense mechanism. And maybe the IV not only helps with hydration so the body can re-coop better; maybe it helps to "flush" the system. It would be nice to know if this is something that would help our Little Man. We will look to try and get his chart updated, once again, to reflect his needs-- should this kind of reaction happen again; and given his history, it will....
Thursday, January 6, 2011
Multivitamin Trial
We are now trialing a multivitamin. After much searching (by me, the GI doctor, and dietitians) we have found this one: Thorne. There is only 1 corn derived ingredient. Vitamin C. Derived from corn starch, fermented and then tested in their lab and "no detectable proteins remain". At least they try to remove the proteins. We have to try it, he needs a multivitamin since his hemp formula is missing some vitamins/minerals and we have been unable to advance his diet to provide him those vitamins/minerals from the source they come from- food!
I have found a few other "contenders" but this is the one that has the least amount of corn derived ingredients, the least chance for a reaction. If he can't tolerate this one.....well, I don't know....
We are on day 3 and already things don't look promising.
Day 1: 8am, Multivitamin given. 25min after giving it to him, he had hiccups....ok, could be random- certainly not a reason to stop a trial but, I take note. 2 hours later, his cheeks are significantly mottled (can be part of his cascade) but maybe his body is just adjusting, or maybe he's stressed or cold (other reasons for mottling to flare). His mood is good. 4 hours after giving it, he takes a long nap....again, this could be concerning- lethargy precedes reactions too. 7hrs after taking it, he starts having wet burps; and then a loose blow out diaper. Crap. Crap, crap, crap. 11hrs after consuming the vitamin, a wet burp leads to a gag while eating and throwing up. Not projectile, not violent but throwing up, he's gagged on his bottle before (not throwing up) but maybe it was just that. That night he didn't sleep well, was awake a lot but didn't want to eat. Didn't seem to be in pain- just couldn't sleep. Disturbed sleep. Well, maybe his PICC line is bothering him or maybe it was just something random keeping him from sleep. See how fun this is?
Day 2: wakes up with blow out diaper. 7am multivitamin given. Spits some of it back out (who can blame him?) It is a capsule that you break open and mix in something. I mix it in water. It tastes like, well- a multivitamin. His breath smells of vitamin all day. His color doesn't look good in the morning. A diaper change for, you guessed it- another loose, watery, foul smelling diaper- this one has small streaks of mucous. Changing him reveals the red ring that shows up when he is reacting to a food. Well, maybe his bottom is just getting sore from all the diaper changes. IV iron therapy day, long day but he was doing well all day. So, starting to hope that the symptoms are random or not going to build and worsen. The evening goes well, he has continued to eat well, and no throwing up tonight.
Day 3: Sleep last night was less disturbed, but there are cries in his sleep; and he is awoken in the early morning hours to a blow out diaper- explosive and watery. 7:30am multivitamin given, no spitting it out this time -- although he does NOT like the taste of it, he is a champ and he takes it from the syringe. 30min later, an explosive watery, with mucous strained diaper change. A call to the GI doctor to update on these symptoms. She is concerned as well but hopeful what we are seeing it re-adjustment from TPN to hemp formula that he is increasing in amounts daily. She agrees these are patterns worrisome for FPIES reaction specific to Little Man, but we need to push through to be sure, because of the importance of the vitamin and the non-specific pattern (at this point) to the symptoms. I agree. I am not here to make him sick and while the symptoms are concerning, they are not clear....yet. Only time will tell, only continued trialing will tell.
As I write this, I stop to change a diaper filled with mucous and hints of that rotten barnyard smell. I take a picture because the mucous is clearly there. The mucous is increasing, the diapers are increasing. His formula intakes are staying the same....formula he has always tolerated and has had no difficulties with since restarting a week ago. As I speak, as I write that I am trying to not be concerned, my concern grows. Especially since fussy Little Man has now entered, ups and downs of mood swings when something isn't right....
Day 4: tomorrow. Stay tuned.
I have found a few other "contenders" but this is the one that has the least amount of corn derived ingredients, the least chance for a reaction. If he can't tolerate this one.....well, I don't know....
We are on day 3 and already things don't look promising.
Day 1: 8am, Multivitamin given. 25min after giving it to him, he had hiccups....ok, could be random- certainly not a reason to stop a trial but, I take note. 2 hours later, his cheeks are significantly mottled (can be part of his cascade) but maybe his body is just adjusting, or maybe he's stressed or cold (other reasons for mottling to flare). His mood is good. 4 hours after giving it, he takes a long nap....again, this could be concerning- lethargy precedes reactions too. 7hrs after taking it, he starts having wet burps; and then a loose blow out diaper. Crap. Crap, crap, crap. 11hrs after consuming the vitamin, a wet burp leads to a gag while eating and throwing up. Not projectile, not violent but throwing up, he's gagged on his bottle before (not throwing up) but maybe it was just that. That night he didn't sleep well, was awake a lot but didn't want to eat. Didn't seem to be in pain- just couldn't sleep. Disturbed sleep. Well, maybe his PICC line is bothering him or maybe it was just something random keeping him from sleep. See how fun this is?
Day 2: wakes up with blow out diaper. 7am multivitamin given. Spits some of it back out (who can blame him?) It is a capsule that you break open and mix in something. I mix it in water. It tastes like, well- a multivitamin. His breath smells of vitamin all day. His color doesn't look good in the morning. A diaper change for, you guessed it- another loose, watery, foul smelling diaper- this one has small streaks of mucous. Changing him reveals the red ring that shows up when he is reacting to a food. Well, maybe his bottom is just getting sore from all the diaper changes. IV iron therapy day, long day but he was doing well all day. So, starting to hope that the symptoms are random or not going to build and worsen. The evening goes well, he has continued to eat well, and no throwing up tonight.
Day 3: Sleep last night was less disturbed, but there are cries in his sleep; and he is awoken in the early morning hours to a blow out diaper- explosive and watery. 7:30am multivitamin given, no spitting it out this time -- although he does NOT like the taste of it, he is a champ and he takes it from the syringe. 30min later, an explosive watery, with mucous strained diaper change. A call to the GI doctor to update on these symptoms. She is concerned as well but hopeful what we are seeing it re-adjustment from TPN to hemp formula that he is increasing in amounts daily. She agrees these are patterns worrisome for FPIES reaction specific to Little Man, but we need to push through to be sure, because of the importance of the vitamin and the non-specific pattern (at this point) to the symptoms. I agree. I am not here to make him sick and while the symptoms are concerning, they are not clear....yet. Only time will tell, only continued trialing will tell.
As I write this, I stop to change a diaper filled with mucous and hints of that rotten barnyard smell. I take a picture because the mucous is clearly there. The mucous is increasing, the diapers are increasing. His formula intakes are staying the same....formula he has always tolerated and has had no difficulties with since restarting a week ago. As I speak, as I write that I am trying to not be concerned, my concern grows. Especially since fussy Little Man has now entered, ups and downs of mood swings when something isn't right....
Day 4: tomorrow. Stay tuned.
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