Zucchini caused a lot of symptoms and we stopped before getting to full FPIES vomit-till-bile session with dehydration. Little man suffers for weeks recovering from those reactions, we know from his past all too well. Slow food trials are intended to avoid that, to stop at first signs that the body is not tolerating a food….for whatever reason-. If his body cannot tolerate a food, it shouldn’t be in his diet causing problems and preventing him from expanding his diet. Unfortunately, for our little man that has meant a very limited diet. He isn’t the only FPIES kiddo with a very limited diet still at 2yrs.old. It may be because that he has other things going on alongside his FPIES (one being a disaccharide deficiency, others unknown), or it may just simply be his FPIES.
We didn’t get to full FPIES vomit till bile (although we did see vomit);and yet we still had weeks of recovery time- weird diapers with mucus and blood and undigested food, terrible irrational behavior, decreased appetite, not trusting his safe foods, is he reacting to his safe foods?, whining, tantrums….and we stopped before the FPIES vomit. In the past, doctors not familiar with FPIES, or our little man, have previously advising us to push through until we get to the vomit (and not sure if we’d be advised to stop even then). With Little man not on an elemental formula, and missing nutrients in his restricted-unable-to-expand-diet; some doctors are sure any symptoms and reactions we encounter surely do not outweigh his needs for the nutrients those foods would supply. I know, from the outside looking in, it seems quite bizarre. It IS bizarre, that his body would not just reject food, but attack it in the way that it does!! It’s very bizarre. But that doesn’t make it not real, a very scary, exhausting reality that his daddy and I live with day in and day out. Unfortunately, we feel it is poor advice to tell us to push through symptoms that make our little man sick, especially without factoring in his illness complexity. There isn’t many other ways to put it- it is poor advice to not consider his allergic mechanisms when advising us to treat other symptoms. I have explained it this way to people- this is the logic we face….it is like telling someone with celiac disease that they need the vitamins in fortified bread so they must eat the bread, even though it contains the very gluten protein they are allergic to. The allergy isn’t anaphylaxis, so it will be fine. NO! It won’t be fine! A person with celiac ingesting gluten is doing chronic, and often silent, damage to their system. It is vitally important for a person with celiac disease to avoid gluten- in any form and in any contamination of. That is how our little man's body responds to corn, and many other of his triggers. His body suffers internal inflammation, oftentimes inflamed before he shows us overt outward signs (FPIES vomit till bile); so we watch his other signs- other signs that tell us that something is causing inflammation in his system. Will his body be able to cope? Will the inflammation subside? Or will his body try to cope, only to exhaust every internal anti-inflammatory mechanism until it is too tired to continue? And then everything starts to go “haywire”. That is what happened with zucchini, and countless other foods we have had to shelve….his little body just gets too tired to continue fighting- so instead of making it, watching as he gets weaker and more off character and unrecognizable, we stop giving that food.
We are now a few weeks past zucchini, ready for the next trials. But what we did learn was that an in hospital stay for a trial isn't going to work for our little man. The symptoms we see and the symptoms doctors are measuring are too different. We are responsible for keeping him safe, keeping him from being sick and increasing his nutrients.....and we remain his voice during these reactions- FPIES or not. Where does that bring us? We need a new plan.....
Showing posts with label zucchini. Show all posts
Showing posts with label zucchini. Show all posts
Wednesday, December 21, 2011
Saturday, December 3, 2011
Zucchini will not be added to Little Man's safe foods....
We started zucchini last week.....we're doing in hospital trials for the first 3 days (not challenge, trial) to see if we can begin to put together more pieces to Little man's puzzle of multiple intolerances and reaction symptoms- is it all purely FPIES or are there other intolerances that are compounding his FPIES, giving us further foods to not include in his safe foods? He does have enzyme deficiency- he lacks the gut level enzymes to digest sugars/carbohydrates/starches; so that will continue to make it more muddy for him. The other question is does he have a metabolic component- something we haven't yet tested for? He recently had some incidental lab findings (when working up a low blood sugar) that may be clues to some metabolic issues compounding, we are getting a work up with a metabolic MD now so will update more on that later. The other component we are looking for is an auto-immune. Does his body attack itself because of the FPIES and then not be able to turn it off? Does his body attack itself from not tolerating a food and then turn on his FPIES? We simply don't know. The goals of food trials right now is to collect more of this data so we can analyze better - if there is something else we can be doing to help him thrive through this diagnosis. Are we missing anything? There is a good chance that we are not. There are a few handfuls of FPIES kids who do not have more than a dozen foods until they are 4-5, or older. This could very well be simply what is happening to our Little Man as well. The complicating factor is his severe and sensitive corn allergy, and that he cannot tolerate the elemental nutrition many other children survive and thrive on for these years while they wait for their body to heal.
Is zucchini a full FPIES fail? We didn't get to full FPIES-to-bile vomit so we won't ever know 100% sure but he did have vomit, he did have diarrhea, he did have dehydration. Bottom line, he simply got to sick- from such little amounts of food, that he was increasingly refusing to eat....less and less ingestion causing more and more symptoms:
The first day- he had about 1/2tsp, he had some off symptoms but nothing that i could definitively identify as a reaction symptoms build as they were muddled with him being 2, and in the hospital.
The next day, his body was having some low blood sugars (before we even did the zucchini); and then he went into acidosis (low bicarb and continued low blood sugars) after the zucchini; and had a full blown "episode"- full tantrum where he was irrational and inconsolable, and he was drooling (not ok, not normal); and choking. He took about 45min to calm down (this is a classic type tantrum when his body is struggling). The next morning, his neutrophils were declined and his hemoglobin fell an entire point. All of these labs were written off to be related to something else; so we were encouraged to push forward. Although Sam was not interested in eating any more zucchini. So, we switched to baked in form.
Day 3- he ate only nibbles but seemed to be ok; no repeat of symptoms from the day before and his labs were all re-cooped. It appeared, at this time, that his body was trying to tolerate the food- and winning. We were optimistic. We went home the following morning.
Day 4- he had some "cookies" (zucchini/millet/oil/peaches) at home, did fine but was having some "poop soup" diapers but not really any other symptoms- and was just happy to be home.
Day 5 - things start to get a little muddy, poop soup diaper again, starting to get whiny and cranky off and on.
Day 6- I give him a Tsp of boiled, purred zucchini again- thinking if he was building to a reaction, we would see it from this controlled amount (vs. baked in). He had no concerning or building symptoms that day, he slept well overnight- doing well overall.
Day 7- eating zucchini/millet flour/oil biscuits and loving them- doing well all day; gagged on a piece of zucchini (insisted on holding a piece of raw zucchini I was cutting up to prepare to freeze and bit a teeny-tiny piece off)...or at least I think it was from the zucchini. It was enough to cover his plate but he was fine after. Although he has choked before on foods (due to texture) and not thrown up like this, so….
Day 8- slept well overnight, poops are no longer loose but do have some mucus in them (but that isn't so out of the normal for him that it would alarm me)- was doing well in the morning but started to really get "off" today- lots of whiny/cranky, looks so tired, and pale.
Day 9- eating less and less - of these baked millet/zucchini biscuits, whiny and clingy, more mucus and smell in his poops, seems to be having low blood sugar episodes,....
Day 10- rough day, decreased appetite, decreased wet diapers, looks terrible (purple around eyes), disrupted sleep (crying in sleep a lot- for naps and night). Had some millet/peaches waffles (no zucchini- made biscuits but barely nibbled them)- loved the waffles!
Day 11- same as yesterday but worse. Each day he eats less of the zucchini but gets worse. He is declining. Sleep is disrupted. Mood is terrible, whiny and angry- hitting and sensitive...
Day 12- today is day 12 and he's a mess. There isn’t' anything significant happening in his diapers. He had this weird drooling this morning, put his hand in his mouth, gagged and threw up (caught me off guard as he doesn't do that when he's at a baseline) but don’t' know what to make of it. Feel he had low blood sugar episodes again today. He hasn't played AT ALL today- he's been in bed watching movies all day, or in my arms, or sleeping. He is taking his bottles better today (had been declining for a few days).
Day 13: He slept ok through the night, except when he woke up at 5am, crying, I notice that his diaper is dry- completly dry. He has been hooked up to IV nutrition for ~8hrs, and he has not urinated. I calm him down and we go back to sleep (he does not want to drink anything). When we woke up at 7am, he had soaked through his diaper....something caught up and "clicked"...whew. But that was weird, he is always wet through well before 5am- between drinking 30-40oz./day and getting IV nutrition through the night; he is an overly hydrated little man. So, any signs of dehydration- even temporary, concerns me.
This morning is his weekly lab draw. This lab draw will help me decide if we will continue to challenge zucchini or if we need to move on. If his internal body shows me the signs of struggling that we are seeing externally, we will need to stop. If his body isn't showing any signs of struggling, we will challenge with a full dose today and measure labs 4-6hrs. later and the next morning so we can get a more clear answer.
I keep him hooked up to his IV nutrition until the moment the home health nurse draws the blood. The home health nurse takes a few notes and then takes his blood to the lab to be analyzed and we wait. I am nervous about "challenging" him today with zucchini as he is just a mess. He is whiny and clingy and clearly not feeling well. A few hours later, we get the labs and they reveal a very low neutrophil count (white blood cells)- a pattern for Sam following a reaction that we have observed in the past is this neutropenic look to his white cells. His hemoglobin is also falling again. And, most concerning- his blood sugar is quite low (45). His body is struggling to maintain his blood sugars- and that is while he is getting nutrition infused into his blood stream! His platelets are on the rise but not out of range of normal, although we have never seen them too high since starting TPN- but he gets heperin in his line to keep it from clotting over, so I would imagine we won't get true readings with that; so trends of increasing is what we're watching for. Another lab that we would see if his body was struggling, another one that is in his pattern, is his bicarbonate levels- he becomes clinically dehydrated BEFORE the vomit/diarrhea. I suspect it has something to do with the sepsis state his body is in while "fighting" this reaction. His bicarb is not low....but I am susicipious this is being masked by the IV nutrition (thankfully!) -- remember the dry overnight diaper at 5am? That tells me more accurately what the IV nutrition might be masking.
It's enough for me, the outward appearance and suffering of our little man and now his pattern of labs indicating that his body is struggling. There is no reason to include zucchini in his diet, we won't be able to move foward with other foods, he's not thriving he's surviving.....no.more.zucchini.
Is zucchini a full FPIES fail? We didn't get to full FPIES-to-bile vomit so we won't ever know 100% sure but he did have vomit, he did have diarrhea, he did have dehydration. Bottom line, he simply got to sick- from such little amounts of food, that he was increasingly refusing to eat....less and less ingestion causing more and more symptoms:
The first day- he had about 1/2tsp, he had some off symptoms but nothing that i could definitively identify as a reaction symptoms build as they were muddled with him being 2, and in the hospital.
The next day, his body was having some low blood sugars (before we even did the zucchini); and then he went into acidosis (low bicarb and continued low blood sugars) after the zucchini; and had a full blown "episode"- full tantrum where he was irrational and inconsolable, and he was drooling (not ok, not normal); and choking. He took about 45min to calm down (this is a classic type tantrum when his body is struggling). The next morning, his neutrophils were declined and his hemoglobin fell an entire point. All of these labs were written off to be related to something else; so we were encouraged to push forward. Although Sam was not interested in eating any more zucchini. So, we switched to baked in form.
Day 3- he ate only nibbles but seemed to be ok; no repeat of symptoms from the day before and his labs were all re-cooped. It appeared, at this time, that his body was trying to tolerate the food- and winning. We were optimistic. We went home the following morning.
Day 4- he had some "cookies" (zucchini/millet/oil/peaches) at home, did fine but was having some "poop soup" diapers but not really any other symptoms- and was just happy to be home.
Day 5 - things start to get a little muddy, poop soup diaper again, starting to get whiny and cranky off and on.
Day 6- I give him a Tsp of boiled, purred zucchini again- thinking if he was building to a reaction, we would see it from this controlled amount (vs. baked in). He had no concerning or building symptoms that day, he slept well overnight- doing well overall.
Day 7- eating zucchini/millet flour/oil biscuits and loving them- doing well all day; gagged on a piece of zucchini (insisted on holding a piece of raw zucchini I was cutting up to prepare to freeze and bit a teeny-tiny piece off)...or at least I think it was from the zucchini. It was enough to cover his plate but he was fine after. Although he has choked before on foods (due to texture) and not thrown up like this, so….
Day 8- slept well overnight, poops are no longer loose but do have some mucus in them (but that isn't so out of the normal for him that it would alarm me)- was doing well in the morning but started to really get "off" today- lots of whiny/cranky, looks so tired, and pale.
Day 9- eating less and less - of these baked millet/zucchini biscuits, whiny and clingy, more mucus and smell in his poops, seems to be having low blood sugar episodes,....
Day 10- rough day, decreased appetite, decreased wet diapers, looks terrible (purple around eyes), disrupted sleep (crying in sleep a lot- for naps and night). Had some millet/peaches waffles (no zucchini- made biscuits but barely nibbled them)- loved the waffles!
Day 11- same as yesterday but worse. Each day he eats less of the zucchini but gets worse. He is declining. Sleep is disrupted. Mood is terrible, whiny and angry- hitting and sensitive...
Day 12- today is day 12 and he's a mess. There isn’t' anything significant happening in his diapers. He had this weird drooling this morning, put his hand in his mouth, gagged and threw up (caught me off guard as he doesn't do that when he's at a baseline) but don’t' know what to make of it. Feel he had low blood sugar episodes again today. He hasn't played AT ALL today- he's been in bed watching movies all day, or in my arms, or sleeping. He is taking his bottles better today (had been declining for a few days).
Day 13: He slept ok through the night, except when he woke up at 5am, crying, I notice that his diaper is dry- completly dry. He has been hooked up to IV nutrition for ~8hrs, and he has not urinated. I calm him down and we go back to sleep (he does not want to drink anything). When we woke up at 7am, he had soaked through his diaper....something caught up and "clicked"...whew. But that was weird, he is always wet through well before 5am- between drinking 30-40oz./day and getting IV nutrition through the night; he is an overly hydrated little man. So, any signs of dehydration- even temporary, concerns me.
This morning is his weekly lab draw. This lab draw will help me decide if we will continue to challenge zucchini or if we need to move on. If his internal body shows me the signs of struggling that we are seeing externally, we will need to stop. If his body isn't showing any signs of struggling, we will challenge with a full dose today and measure labs 4-6hrs. later and the next morning so we can get a more clear answer.
I keep him hooked up to his IV nutrition until the moment the home health nurse draws the blood. The home health nurse takes a few notes and then takes his blood to the lab to be analyzed and we wait. I am nervous about "challenging" him today with zucchini as he is just a mess. He is whiny and clingy and clearly not feeling well. A few hours later, we get the labs and they reveal a very low neutrophil count (white blood cells)- a pattern for Sam following a reaction that we have observed in the past is this neutropenic look to his white cells. His hemoglobin is also falling again. And, most concerning- his blood sugar is quite low (45). His body is struggling to maintain his blood sugars- and that is while he is getting nutrition infused into his blood stream! His platelets are on the rise but not out of range of normal, although we have never seen them too high since starting TPN- but he gets heperin in his line to keep it from clotting over, so I would imagine we won't get true readings with that; so trends of increasing is what we're watching for. Another lab that we would see if his body was struggling, another one that is in his pattern, is his bicarbonate levels- he becomes clinically dehydrated BEFORE the vomit/diarrhea. I suspect it has something to do with the sepsis state his body is in while "fighting" this reaction. His bicarb is not low....but I am susicipious this is being masked by the IV nutrition (thankfully!) -- remember the dry overnight diaper at 5am? That tells me more accurately what the IV nutrition might be masking.
It's enough for me, the outward appearance and suffering of our little man and now his pattern of labs indicating that his body is struggling. There is no reason to include zucchini in his diet, we won't be able to move foward with other foods, he's not thriving he's surviving.....no.more.zucchini.
How is Zucchini going?
We started with zuchinni because it is an easily digestible food, low sugars, with nutrients he needs, and can be baked into the one food he loves- his merry muffin/cookies made with his 5 safe ingredients.
So, the first day we gave him a tiny slice of steamed zucchini; he had some symptoms that afternoon that were notable but nothing to write home about, but note and move through....so the next day I got him to take a tsp of boiled, pureed zucchini (that I pureed with some of the water I boiled it in- was that bad?) - he let me feed him a teaspoon and then would not take anymore. At the 4hr.mark, he had this terrible-terrible and classic-for-him irrational tantrum...the kind where you can't let them out of your sight because they may do something to hurt themselves because they are being so irrational (but he wouldn't let me hold him)- so he is having this tantrum in the bathroom (of the hospital) and he is drooling excessively (doesn't normally do that when he cries and he is 29mo.old so drooling isn't an everyday occurrence around here).....another FPIES mom helped clear this up in that it is uncontrolled reflux, which makes a lot of sense. He isn't necessarily crying as much as he is screaming- no tears, just screaming...then he starts to choke (not on his saliva, almost as if he is throwing up in his mouth and swallowing it down- you know when you recognize that sound)...it goes on for at least 30min. The plan is to take labs if he is symptomatic- so I ask (ok beg for these labs) and they are taken and found to be "off". He finally calms down and then is ok for most of the day- until he has some cookies later and then about 5hrs. after that, he has another one of these "mini" tantrums- this time he has clear mottling and his feet are purple when being held (again, classic for him when he was an infant and symptomatic). But then, he recoups from that and is fine again, he sleeps ok that night. Then we did baked zucchini the next day-Friday (so boiled and pureed and then baked into his muffin/cookies) and he doesn’t' have any symptoms to write home about. We got him home yesterday and he had his cookies again at dinner, and 3hrs. later had a poop soup diaper; but no other symptoms- sleeping good, eating ok, has a red rashy spot on his right cheek, behavior is ok,.... The plan is to continue the food trial for a full week- now at home, getting labs as needed. Until poop soup diaper, I was feeling confident that we were going to be able to work with just baked zucchini into his diet....and not even 'test' the boiled zucchini again (why make him miserable?) but now I worry that all we're doing is drawing it out and going to end up making him sicker in the long run vs. just knowing.
He's been, the past 2 weeks (since probiotic/sorry board game ingestions/symptoms) a little on the slower side for dirty diapers, only going every other day, and it being more play-dough so now to have soup...it's confusing... The labs that were off were his blood sugar and bicarb- he fit the criteria for acidosis (which he has had before with reactions); and his neutrophils (white blood cells) took a huge dive (very classic for Sam following a reaction, and why he always gets a cold after- (he's susceptible because his WBC's are down), and his hemoglobin dropped a full point (and didn't recover)- again classic patterns we’ve (I’ve learned) for Sam. I'm nervous but we need to know.....it seems to me that his body is having these dips of problems so if we helped his body (by baking it)- he could tolerate it? But....this could be his body adjusting or it could be building to a reaction....I'm trapped because we are supposed to call it a pass or fail after 7days but if he doesn't get enough of a serving- it's going to be hard to call it, but if we do too much- and his body is just adjusting we risk pushing his limits versus teaching his body to tolerate the food (which obviously is the goal).
My theory is: what we are seeing now (and the labs that correspond with his symptoms), but then we see him re-coop. I am curious if this is his body training for oral tolerance or if it is his body teaching to react? So, do we push it so we know and not continue to make him more chronically ill; or do we take it slower so we continue to teach his body oral tolerance?
So, the first day we gave him a tiny slice of steamed zucchini; he had some symptoms that afternoon that were notable but nothing to write home about, but note and move through....so the next day I got him to take a tsp of boiled, pureed zucchini (that I pureed with some of the water I boiled it in- was that bad?) - he let me feed him a teaspoon and then would not take anymore. At the 4hr.mark, he had this terrible-terrible and classic-for-him irrational tantrum...the kind where you can't let them out of your sight because they may do something to hurt themselves because they are being so irrational (but he wouldn't let me hold him)- so he is having this tantrum in the bathroom (of the hospital) and he is drooling excessively (doesn't normally do that when he cries and he is 29mo.old so drooling isn't an everyday occurrence around here).....another FPIES mom helped clear this up in that it is uncontrolled reflux, which makes a lot of sense. He isn't necessarily crying as much as he is screaming- no tears, just screaming...then he starts to choke (not on his saliva, almost as if he is throwing up in his mouth and swallowing it down- you know when you recognize that sound)...it goes on for at least 30min. The plan is to take labs if he is symptomatic- so I ask (ok beg for these labs) and they are taken and found to be "off". He finally calms down and then is ok for most of the day- until he has some cookies later and then about 5hrs. after that, he has another one of these "mini" tantrums- this time he has clear mottling and his feet are purple when being held (again, classic for him when he was an infant and symptomatic). But then, he recoups from that and is fine again, he sleeps ok that night. Then we did baked zucchini the next day-Friday (so boiled and pureed and then baked into his muffin/cookies) and he doesn’t' have any symptoms to write home about. We got him home yesterday and he had his cookies again at dinner, and 3hrs. later had a poop soup diaper; but no other symptoms- sleeping good, eating ok, has a red rashy spot on his right cheek, behavior is ok,.... The plan is to continue the food trial for a full week- now at home, getting labs as needed. Until poop soup diaper, I was feeling confident that we were going to be able to work with just baked zucchini into his diet....and not even 'test' the boiled zucchini again (why make him miserable?) but now I worry that all we're doing is drawing it out and going to end up making him sicker in the long run vs. just knowing.
He's been, the past 2 weeks (since probiotic/sorry board game ingestions/symptoms) a little on the slower side for dirty diapers, only going every other day, and it being more play-dough so now to have soup...it's confusing... The labs that were off were his blood sugar and bicarb- he fit the criteria for acidosis (which he has had before with reactions); and his neutrophils (white blood cells) took a huge dive (very classic for Sam following a reaction, and why he always gets a cold after- (he's susceptible because his WBC's are down), and his hemoglobin dropped a full point (and didn't recover)- again classic patterns we’ve (I’ve learned) for Sam. I'm nervous but we need to know.....it seems to me that his body is having these dips of problems so if we helped his body (by baking it)- he could tolerate it? But....this could be his body adjusting or it could be building to a reaction....I'm trapped because we are supposed to call it a pass or fail after 7days but if he doesn't get enough of a serving- it's going to be hard to call it, but if we do too much- and his body is just adjusting we risk pushing his limits versus teaching his body to tolerate the food (which obviously is the goal).
My theory is: what we are seeing now (and the labs that correspond with his symptoms), but then we see him re-coop. I am curious if this is his body training for oral tolerance or if it is his body teaching to react? So, do we push it so we know and not continue to make him more chronically ill; or do we take it slower so we continue to teach his body oral tolerance?
Monday, November 21, 2011
Zucchini trial....clear as mud
Well, there is a reason why I named my blog this: Mudpies. Well, a few reasons actually. I'm surrounded by boys and now I'm surrounded by FPIES. FPIES, FPIES, FPIES. Everything seems to revolve around FPIES. I wish it didn't but with Little Man's illness being so complex and chronic, it just is. We are really hoping and quite literally praying we can figure out a tiny menu, with the help of our team here guiding us through his reactions and symptoms of intolerances.
We've chosen to start that with zucchini. Well, I've chosen. I chose zucchini because we have never tried it before, he is not sensitized to it, and it's been over 18mo. since he's even had anything in the squash family. It is a good source of Vit.C which he needs more of in his diet. It is easy to digest and easy to bake in to foods (since his favorite food right now is his "cookie"). It is low in sugar and lower in fiber (skinned and seeded), it shouldn't cause any symptoms much less an FPIES reaction. But if it should, it's only zucchini and not available all year (although I do have a freezer stash). It WAS in season when we were going to orginally start these food trials so it was perfect (food trials were delayed a month due to a PICC line infection and treatment).
So, here we are at zucchini. Today is Day 6 and today went well; but we're holding our breath because we've been cycling through some concerning symptoms. My hope and prayer right now is that these symptoms are merely his body demonstrating that it still struggles to find Oral Tolerance and to caution us to continue to be careful in the foods we chose next and how we prepare those foods, and how we help his body accept those foods.
So, how has the trial been going? What symptoms are concerning?
11-16 Zucchini Trial at 11:15am= 1 small slice and ½ a “muffin” with zucchini in it. Fussy before nap, itchy ears, red cheeks, smelly gas, refusing bottle before nap. Woke up from nap pale but pinked up, and played well all afternoon/evening; very tired looking, drinking sips of his peach‘juice’. Slept ok through the night, some tossing and turning. BM diaper is "normal”- has been having them every other day, thicker.
11-17: Zucchini at 9:30am- boiled/purred- 1tsp. 12:30pm had bites of a cookie made with pureed zucchini. Got D10 for low blood sugar at 10:30am. Refusing bottle a lot today, looks more pale this morning but happy throughout early morning, had some “blah” and fussy times. Found low blood sugar results from early AM lab draw,after getting unhooked from TPN; took 4oz.at 10:30, then had lab draw right after finished bottle. 1:30pm- irrational tantrum, drooling, choking, screaming (not crying-screaming),noted mottling (but was playing with cold water). Settled down and had a short nap, woke up crabby; better after bottle but still “blah”, evening tantrum noted to have mottling and feet turned purple when being held (cleared when put down), rash on right cheek, looks so tired, smelly gas. Decreased oral intakes, and decreased wet diapers (didn’t wet through the diaper last night as typically does). No BM diaper today.
Concerned that boiled zucchini caused the “episode” but could even have been from the D10 he got for low blood sugar. Slept well overnight.
11-18: Zucchini at 5:30pm baked in cookies-ate 3, got approx. 1tsp zucchini. Looks pale, purple around lips, lips look paler; but otherwise in good mood this morning. Started asking for his bottle again, and increasing intake mid-morning, took a good nap- woke up crabby but calmed down easily, played nicely all day. Willingly ate his “cookies” at 5:30pm- enjoyed them. 6:30pm noted rash on cheek flared up again, and smelly gas otherwise good mood. BM diaper had mucus surrounding thicker stool (playdough consistency).
Slept well overnight, but had to be near daddy. Woke up twice but didn’t eat.
11-19: Nibble of zucchini cookies at dinner 6pm. Fasting for AM labs to check blood sugar after TPN cycling, tantrums while waiting for 10am (fasting) lab draw! Ate well after that and played well- dismissed from hospital and happy to be home, ate “cookies” for dinner. Rash on cheek flared up after, otherwise no other symptoms- good mood and played well. BM at 9pm- “poop soup” (took pic)- watery/soaked in surrounded by thick pieces. Slept well through night. Eating better at home.
11-20: 9am bites of cookie with baked zucchini (same batch from last night). Asking for bottles, eating better today. Increasingly whiney all morning but playing. Rash on cheek flared again, itchy ears.
11-21: 9am BM diaper, blow out/liquid. 10:30am 1tsp of skinned/seeded/boiled/pureed zucchini- doesn't like it. Fussy off and on today as yesterday, but slept well and increasingly better mood throughout the day, increased energy.
I'm optimistic....
We've chosen to start that with zucchini. Well, I've chosen. I chose zucchini because we have never tried it before, he is not sensitized to it, and it's been over 18mo. since he's even had anything in the squash family. It is a good source of Vit.C which he needs more of in his diet. It is easy to digest and easy to bake in to foods (since his favorite food right now is his "cookie"). It is low in sugar and lower in fiber (skinned and seeded), it shouldn't cause any symptoms much less an FPIES reaction. But if it should, it's only zucchini and not available all year (although I do have a freezer stash). It WAS in season when we were going to orginally start these food trials so it was perfect (food trials were delayed a month due to a PICC line infection and treatment).
So, here we are at zucchini. Today is Day 6 and today went well; but we're holding our breath because we've been cycling through some concerning symptoms. My hope and prayer right now is that these symptoms are merely his body demonstrating that it still struggles to find Oral Tolerance and to caution us to continue to be careful in the foods we chose next and how we prepare those foods, and how we help his body accept those foods.
So, how has the trial been going? What symptoms are concerning?
11-16 Zucchini Trial at 11:15am= 1 small slice and ½ a “muffin” with zucchini in it. Fussy before nap, itchy ears, red cheeks, smelly gas, refusing bottle before nap. Woke up from nap pale but pinked up, and played well all afternoon/evening; very tired looking, drinking sips of his peach‘juice’. Slept ok through the night, some tossing and turning. BM diaper is "normal”- has been having them every other day, thicker.
11-17: Zucchini at 9:30am- boiled/purred- 1tsp. 12:30pm had bites of a cookie made with pureed zucchini. Got D10 for low blood sugar at 10:30am. Refusing bottle a lot today, looks more pale this morning but happy throughout early morning, had some “blah” and fussy times. Found low blood sugar results from early AM lab draw,after getting unhooked from TPN; took 4oz.at 10:30, then had lab draw right after finished bottle. 1:30pm- irrational tantrum, drooling, choking, screaming (not crying-screaming),noted mottling (but was playing with cold water). Settled down and had a short nap, woke up crabby; better after bottle but still “blah”, evening tantrum noted to have mottling and feet turned purple when being held (cleared when put down), rash on right cheek, looks so tired, smelly gas. Decreased oral intakes, and decreased wet diapers (didn’t wet through the diaper last night as typically does). No BM diaper today.
Concerned that boiled zucchini caused the “episode” but could even have been from the D10 he got for low blood sugar. Slept well overnight.
11-18: Zucchini at 5:30pm baked in cookies-ate 3, got approx. 1tsp zucchini. Looks pale, purple around lips, lips look paler; but otherwise in good mood this morning. Started asking for his bottle again, and increasing intake mid-morning, took a good nap- woke up crabby but calmed down easily, played nicely all day. Willingly ate his “cookies” at 5:30pm- enjoyed them. 6:30pm noted rash on cheek flared up again, and smelly gas otherwise good mood. BM diaper had mucus surrounding thicker stool (playdough consistency).
Slept well overnight, but had to be near daddy. Woke up twice but didn’t eat.
11-19: Nibble of zucchini cookies at dinner 6pm. Fasting for AM labs to check blood sugar after TPN cycling, tantrums while waiting for 10am (fasting) lab draw! Ate well after that and played well- dismissed from hospital and happy to be home, ate “cookies” for dinner. Rash on cheek flared up after, otherwise no other symptoms- good mood and played well. BM at 9pm- “poop soup” (took pic)- watery/soaked in surrounded by thick pieces. Slept well through night. Eating better at home.
11-20: 9am bites of cookie with baked zucchini (same batch from last night). Asking for bottles, eating better today. Increasingly whiney all morning but playing. Rash on cheek flared again, itchy ears.
11-21: 9am BM diaper, blow out/liquid. 10:30am 1tsp of skinned/seeded/boiled/pureed zucchini- doesn't like it. Fussy off and on today as yesterday, but slept well and increasingly better mood throughout the day, increased energy.
I'm optimistic....
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