Little man has been having a lot of pain at night, we are not sure why. Last night he did settle ok with a bottle when he woke up (he ate half his daily intake through the night - things got fuzzy getting up so many times with him last night!!).
Earlier this week, we had 2 nights where the screaming reached levels it has not in a long time- his pain was inconsolable and intense!! I went as far as the ER parking lot...but didn't go in. I am having a trust issue with doctors I do not know right now and I was afraid it would once again be suggested that I am malnourishing him. Being so "fresh" from the hospital still, I couldn't bring myself to go through that again - I may have a breakdown! One of the ways I have learned to cope is that I do not "deal with" doctors that do not trust me, and I them. So, being in the hosptial among many who did not understand FPIES and how it is affecting Little Man was very, very difficult for Little Man's daddy and I to cope with. So, we waited it out- together through the night, passing Little Man back and forth while we tried to steal moments of sleep through his peaks and valleys of pain and we brought him to our pediatrician's office first thing in the morning. Our pediatrician was not in, so we saw another one in her office. Intussusception has been brought up in the past and it was again at this appointment. Unfortunatly there isn't much to "test" for unless he is having an attack (if it is slipping in and out). So, if these continue to happen - we need to make a trip to the ER for evaluation.
The other piece of the puzzle is the continued maroon throughout his stools. I don't know what else would cause maroon stools mixed in with the green from the formula when you are on a diet of white liquid. So, I brought it in for a sample and his pediatrician ordered a test....it was confirmed a few hours later that what we are seeing is in fact blood. But now to figure out why. Is it because of the continued assualt from corn proteins? Is it from the possible Intussusception? Is it from the irritation in his stomach lining? What is the pain in the middle of the night from? I think if we can solve one question we'll have our answer for the other....and we are just one step (one close step) away from his true baseline.
Saturday, July 31, 2010
"Hi!"
Little man can't stop saying it! To us, to his brothers, to friends, to strangers, to doctors, to nurses. The mask has been lifted, even if just briefly, again. Little man has lived so many of his days in pain, that he doesn't waste any time getting down to playing and learning new milestones, and words when he is pain free. He can say "hi","hi-5", "daddy", "momma", "woof", "quack", "neigh", "off", "on", "all done". He can give hi-5, wave bye-bye, clap, ask for his bottle, and he's learning puzzles. He also can walk and run of course! :) It is simply amazing to us that he catches up so fast to these milestones when he has less time to practice (because he has spent so much time in our arms, in pain).
We are very grateful we have pulled him out of his failure to thrive state he was heading down. Many FPIES kiddo's have this somewhere in their days, sometimes before diagnosis when little is understood about what is going on, and sometimes after when the right diet is being identified with food trials and eliminations. We have been running close to the wire for so many months, and we do our best to stay on top of his illness so we can learn more about how it is affecting him.
Little man had a follow up with his pediatrician yesterday (he now weighs in at 20#12oz!!!). The major Children's Hospitals (Mt.Sinai, CHOP, Jewish National) utilize a team approach for following these kiddo's and I am trying to duplicate that here- it makes perfect sense. Pediatrician's are at the center of their care, as they help manage the care of the "team" when so many things come into play- Allergist recommendations, GI work ups, Dietitian follow-ups. It all has to be monitored closely to be sure he stays thriving. I know this is where it would help to be at a place like CHOP (where our Allergist is) but we don't live in or near PA, so we are trying to make the best of what we have here. And what we have here, practically in our backyard, is one of the top leading medical facilities in the country- in the world! The doctors that want to learn about FPIES have been great, and they are really trying to help. Our pediatrician is great, and has been through all of this....but I still feel a disconnect between understanding FPIES and helping Little Man. I wish I could figure out how to get this better connected. The many days, months, and now going on a year of Little man being ill and monitoring and connecting his symptoms, and finding a diagnosis to explain it all, and managing his care, on top of him continuing to be sick, and on top of the other everyday things in life- our other children and their needs, our jobs, our home, etc....is all starting to get overwhelming when I also still feel I need to teach everyone about FPIES while trying to connect how it affects Little Man...most especially when he is as ill as he was before being hospitalized. We are trying so hard to find his baseline so we can build his tiny menu. It will be more difficult to do food trials when he is still having blood in stools and waking up screaming at night.
We are very grateful we have pulled him out of his failure to thrive state he was heading down. Many FPIES kiddo's have this somewhere in their days, sometimes before diagnosis when little is understood about what is going on, and sometimes after when the right diet is being identified with food trials and eliminations. We have been running close to the wire for so many months, and we do our best to stay on top of his illness so we can learn more about how it is affecting him.
Little man had a follow up with his pediatrician yesterday (he now weighs in at 20#12oz!!!). The major Children's Hospitals (Mt.Sinai, CHOP, Jewish National) utilize a team approach for following these kiddo's and I am trying to duplicate that here- it makes perfect sense. Pediatrician's are at the center of their care, as they help manage the care of the "team" when so many things come into play- Allergist recommendations, GI work ups, Dietitian follow-ups. It all has to be monitored closely to be sure he stays thriving. I know this is where it would help to be at a place like CHOP (where our Allergist is) but we don't live in or near PA, so we are trying to make the best of what we have here. And what we have here, practically in our backyard, is one of the top leading medical facilities in the country- in the world! The doctors that want to learn about FPIES have been great, and they are really trying to help. Our pediatrician is great, and has been through all of this....but I still feel a disconnect between understanding FPIES and helping Little Man. I wish I could figure out how to get this better connected. The many days, months, and now going on a year of Little man being ill and monitoring and connecting his symptoms, and finding a diagnosis to explain it all, and managing his care, on top of him continuing to be sick, and on top of the other everyday things in life- our other children and their needs, our jobs, our home, etc....is all starting to get overwhelming when I also still feel I need to teach everyone about FPIES while trying to connect how it affects Little Man...most especially when he is as ill as he was before being hospitalized. We are trying so hard to find his baseline so we can build his tiny menu. It will be more difficult to do food trials when he is still having blood in stools and waking up screaming at night.
Monday, July 26, 2010
Dietitians
I believe I've said this before....but it always warrents repeating! Thank goodness for the Dietitian's in Sam's care!!! It was an RD who helped us get to the diagnosis, and today big thanks to our RD at CHOP and our inpatient hospital RD at Mayo.
We struggled finding a baseline for Little Man, we visited with our Allergist at CHOP who suggested his intolerances could suggest a corn intolerance and trace corn proteins in the Neocate formula could be preventing the inflammatory process in his body from calming down enough to find him a baseline to build from. We trialed corn and sure enough, after just 1tsp, failed it, we pushed it another 1/2tsp to be absolutly sure what we were seeing was a true FPIES response and we got our answer. The true beast of this syndrome is that you have to feed the child the food that he could react so violently to to know if he is intolerant or not....it is a terrible thing to watch, I can only imagine what a terrible thing to experience. Little man let us know what a terrible thing by restricting his intakes of the formula, to less than half his needs for over a week...he got so weak, so fragile. We then started him on Hemp milk, putting it half/half in his Neocate bottles and he began to rapidly improve. We started to move further away from Neocate and it's trace corn proteins to more and more hemp milk - he was doing beautifully. We were planning on building up the hemp milk to equal the nutrition in his forumla; while we moved away from the Neocate- adding the nutrients we felt he needed in addition to the Neocate, starting with the starch. The addition of the starch coincided with the first blood in stools we have seen in 13mo. We stopped starch and gave his body a 3day rest, and then restarted; only to have everything come sweeping back- with full force of the worst watery explosive stools I have ever seen! This drained little man so much, so we tried other starches- with no better effects. Now little man isn't trusting his milk again and limits his Hemp milk to less than 1/2 of what he has been taking- going down to the same mere 400 calories he did with the Neocate after corn fail, only with the hemp milk (that is low on carbohydrate) - not getting adequate calories meant he wouldn't get enough glucose for his body to feed his brain....which is the state he entered in to on the weekend before his hospitalization. We knew he was sick, we just didn't know how to get the right help for him. We also knew we had an appt with his pediatrician right away that Monday morning; and knew she could help.
That was one week ago. Where did the week go. I find myself wondering if the doctors here knew about FPIES and what they were really seeing in Little Man upon admission was not malnutrition but failure to thrive from the foods we give him.....would we be ahead of where we are at today?
The focus is on his nutrition. A growing baby needs nutrition first and foremost for brain growth. Little Man's body knew this, and knew what to do to give it to him....burn his own stores to make glucose for his brain- it is a state called acidosis. Little man's body was starting to go into acidosis because his stores were so low....from being so sick since corn fail; and not from a diet of hemp milk.
Which brings us to today, where everyone can hopefully start to catch up. Dr.P at CHOP has given us some great advice...."the parents know the child". If the parents are worried about the child, then there is something to be worried about...."listen to the parents". Dr.P has been calling us daily to check in because we are worried about our little man, so he knows to be worried too.
Today brings us new doctors, new perspective, new approach....the Mayo way- a team of doctors to look at things from every angle; not only to give best care but to make sure nothing is being missed or overlooked.
Our good news today? Our dietitian from CHOP was able to give our dietitian here the resources to show that Hemp milk is a nutritious milk alternative (not to be confused with a formula alternative); but a good base on which to build a good diet for an FPIES child with intolerances to dairy, soy, rice, and corn. Confirmation that I was in fact not malnourishing my child, his FPIES was.....
Sunday, July 25, 2010
So quiet....
at home. Hubby takes the night shift with little man. After many months of having a sick child, while still caring for our other 3 boys; we have become a well-oiled (although admittedly sometimes squeaky) machine. And right now, I take the day shift with little man at the hospital so I can be there to talk with the doctors; and he takes the night shift so he can be there for Little Man. This allows all our boys to get time with each of us as well. Cuddle time, bedtime stories and bedtime prayers with mom right before bed are critical for the 3 big brothers. Playtime and cuddle time with daddy before bed are essential for little man. But we miss Little Man at home. He is anxious to get home too...hopefully tomorrow afternoon...
Little man has not had good weight gain yet. I already could have told you he wasn't going to. He drinks in adequate calories but his body isn't absorbing them all because of his gut inflammation, so this will continue to be a cyclic affect until we can rid his body of the inflammation. He started to have a rash on his back today- just another sign of the inflammatory triggers in his body. He also looks more pale today.
Our allergist at CHOP has been calling to check on him, this makes us feel very supported and is helping with a lot of the questions we/the doctors here have about FPIES. We have learned so much on this journey so far, I continue to look to learn more- not only to help our son (who still needs so much help right now) but to help learn and raise awareness of this roller coaster ride.
Little man has not had good weight gain yet. I already could have told you he wasn't going to. He drinks in adequate calories but his body isn't absorbing them all because of his gut inflammation, so this will continue to be a cyclic affect until we can rid his body of the inflammation. He started to have a rash on his back today- just another sign of the inflammatory triggers in his body. He also looks more pale today.
Our allergist at CHOP has been calling to check on him, this makes us feel very supported and is helping with a lot of the questions we/the doctors here have about FPIES. We have learned so much on this journey so far, I continue to look to learn more- not only to help our son (who still needs so much help right now) but to help learn and raise awareness of this roller coaster ride.
Saturday, July 24, 2010
Threshold of tolerance...
Trace proteins in breastmilk were an issue from birth for little man, after introduction of formula, it became a lower threshold that I could eat before I saw symptoms in him (through my breastmilk). After introductions of solids, he began reacting to more through my breastmilk (looking back).
Little man does not tolerate trace proteins of dairy (without any doubts). He has also reacted to soy and rice. But the threshold appears to be higher for these as it was a month of supplemental soy bottles before we decided he had a soy intolerance. We still aren't sure about FPIES to soy but clearly was intolerant to it and at this point is too sick to trial it. Corn looks to be very similiar to dairy- reacting to trace proteins. Neocate has trace corn proteins, however it does appear to be the most broken down of the elementals(best strained if you will) corn proteins from the corn syrup solids.
We trialed corn. After corn fail, we saw less tolerance of his formula...and it was as if he can tell his body can't tolerate it because he started to self limit his intakes to less than 20oz.day. We moved to Hemp milk- doing a 50/50 mix and as we gradually moved further away from Neocate and more hemp- we saw these symptoms decline (only to come back full force if we move back up).
We asked our allergist at CHOP what he thought and he agrees it makes perfect sense. Finding that threshold can be tricky. We are going to attempt to find it. We have added back in 20oz of Neocate to his hemp milk. Upon adding it back in, he has had mouth itching, mottling of the skin, abd.;pain, reflux and pain from that, fussiness, burpy, and much disturbed sleep, and also mucous in his almost-too- formed-for-liquid-diet-diaper These have all been signs in the past of intolerance and all signs that decreased or went away competly as we lessened the Neocate. The doctors here at the hospital (who most are not currently recognizing his FPIES) want us to go to 100% Neocate and then see if he has intolerances. We are not here to make him sick and will not be doing this.
We had a long care conference yesterday to try and get our outpatient "team" and the inpatient team on the same page. It was intense and I really don't know if it made any difference. Our allergist at CHOP has been calling Sam's doctors and us daily to check in (despite being on vacation last week)-he has been a GREAT help and advocate for Sam. We will just have to see what the next days bring here, and then continue on with our regular "team" with finding Sam's baseline.
Little man does not tolerate trace proteins of dairy (without any doubts). He has also reacted to soy and rice. But the threshold appears to be higher for these as it was a month of supplemental soy bottles before we decided he had a soy intolerance. We still aren't sure about FPIES to soy but clearly was intolerant to it and at this point is too sick to trial it. Corn looks to be very similiar to dairy- reacting to trace proteins. Neocate has trace corn proteins, however it does appear to be the most broken down of the elementals(best strained if you will) corn proteins from the corn syrup solids.
We trialed corn. After corn fail, we saw less tolerance of his formula...and it was as if he can tell his body can't tolerate it because he started to self limit his intakes to less than 20oz.day. We moved to Hemp milk- doing a 50/50 mix and as we gradually moved further away from Neocate and more hemp- we saw these symptoms decline (only to come back full force if we move back up).
We asked our allergist at CHOP what he thought and he agrees it makes perfect sense. Finding that threshold can be tricky. We are going to attempt to find it. We have added back in 20oz of Neocate to his hemp milk. Upon adding it back in, he has had mouth itching, mottling of the skin, abd.;pain, reflux and pain from that, fussiness, burpy, and much disturbed sleep, and also mucous in his almost-too- formed-for-liquid-diet-diaper These have all been signs in the past of intolerance and all signs that decreased or went away competly as we lessened the Neocate. The doctors here at the hospital (who most are not currently recognizing his FPIES) want us to go to 100% Neocate and then see if he has intolerances. We are not here to make him sick and will not be doing this.
We had a long care conference yesterday to try and get our outpatient "team" and the inpatient team on the same page. It was intense and I really don't know if it made any difference. Our allergist at CHOP has been calling Sam's doctors and us daily to check in (despite being on vacation last week)-he has been a GREAT help and advocate for Sam. We will just have to see what the next days bring here, and then continue on with our regular "team" with finding Sam's baseline.
Hospital....
The last week has been a whirlwind. Little man was admitted to the hospital on Tuesday morning.
The effects from the starch intolerance led him to drink only half of his hemp milk, which was already low in nutrients (mainly carbohydrate source). He was just so sick, we knew it- we just didn't know what to do about it. We trust in our team we have put together for Samuel- his pediatrician, dietitian, allergist, and GI doctor; we brought him in for appts right away Monday morning. I knew he had lost weight, getting a weight at the pediatrician's office confirmed this- now down almost 8oz. since corn fail. He has had lots of periods of no gains, but this is the largest loss he has had. His little body has been struggling so much to catch back up since corn fail.
His pediatrician helped get him a last minute appt with his GI who agreed he needed to be admitted to the hospital to work on his nutrition as well as try and schedule a endoscopy for further evulation of his continued intolerances. She gave us instructions to come to the hospital for admission right away on Tuesday morning. I was still a little concerned to get to Tuesday morning. That night, little man's daddy slept with him, so he could be close in case something should happen...he was so lethargic. He was not dehydrated because he was drinking enough of his hemp milk to stay hydrated. Little man has always been so strong and so resilent through all of this, it was so hard to see him like this- so very, very weak.
Tuesday morning we were admitted to the hospital and the doctors began their assessments. He was given an IV and blood tests were taken to assess his current state. His blood sugar was very low (in the 40s)!! We were of course concerned, but not surprised as this would explain his weak/floppy that was getting worse with each day. His body had was going into acidosis, which meant that he was burning muscle to make glucose to feed his brain- not good. Little man was so, so sick; we were glad to finally be in a place to get him help. IV's were started and his blood sugar picked right back up to an acceptable level (90s); he began to perk up as well. He continued to eat just plain Hemp milk until he was made NPO in preparation for his procedure the next day. The GI doctors wanted to do his upper endscopy and lower sigmoidoscopy right away, so this was scheduled for Wednesday mid-morning. Little man was given a bowel prep of Miralax....only it didn't work. He was in SO much pain most of the night (only getting barely 3hrs of sleep all night long). We finally had to give him an enema to "clear him out", which worked nicely (finally). The procedure went well and multiple biopsy's were taken to help further evaluate Little Man's continued intolerances.
We kept him on hemp milk for the rest of that day, which he drank like a champ. It was then discussed and decided the next morning to re-introduce the Neocate to assure his brain gets the nutrition it needs (avoiding the low blood sugar). This is where it is very helpful to have kept logs on Little man's eating and symptoms. We had started to see significant improvements in little man when we had started to move away from Neocate. We seem to have found a thresh hold were we saw little symptoms when he kept his Neocate intake to less than 20oz./day. I had noticed that when he had 24oz., he would have random throwing up and discomfort. So, we decided this would be a safe place to go back to to get him thriving again. This was started on Thursday afternoon. He has been drinking it well and doing primarily well on it.
Test results are coming back in, biopsy's have revealed that his intestinal inflammation is not changed, and may be worse, than it was on last scope 5mo. ago- this after 7mo.on elemental nutrition. It doesn't make sense, unless you consider that he has been reacting to the trace proteins in Neocate as we suspect. The GI doctors agree that it doesn't make sense, but we differ on the why. They ordered more tests to be done, testing for an auto-immune enteritis. Good news is if they find this, it can be treated with steroids to get the inflammation to finally subside and we can begin to introduce foods. The bad news, this is an auto-immune disorder - from infancy.
This is the course of FPIES, ruling out other possibility's while you treat the intolerances. It is a difficult road.
Little Man will stay in the hospital for the weekend, and Monday will bring more decisions and next steps to take.
As for the rest of the family- we are holding on. The 3 older boys are doing well, they understand that their little brother is sick and needs the extra care right now. We try to keep their routine as "normal" as we can so one of us stays home with them while one of us is at the hosptial; with the exception of when we have help to come stay with us. This week, that came in the form of my sister. The boys always enjoy visits from their Aunt, she knows their routine and their needs and that gives them much comfort and stability in an unknown circumstances.
We remain thankful for the continued support from family and friends....it gives us much comfort to have prayers for Sam's health and our strength for endurance being sent our way. We have a deep Faith that allows us to put our worries in God's hands.
The effects from the starch intolerance led him to drink only half of his hemp milk, which was already low in nutrients (mainly carbohydrate source). He was just so sick, we knew it- we just didn't know what to do about it. We trust in our team we have put together for Samuel- his pediatrician, dietitian, allergist, and GI doctor; we brought him in for appts right away Monday morning. I knew he had lost weight, getting a weight at the pediatrician's office confirmed this- now down almost 8oz. since corn fail. He has had lots of periods of no gains, but this is the largest loss he has had. His little body has been struggling so much to catch back up since corn fail.
His pediatrician helped get him a last minute appt with his GI who agreed he needed to be admitted to the hospital to work on his nutrition as well as try and schedule a endoscopy for further evulation of his continued intolerances. She gave us instructions to come to the hospital for admission right away on Tuesday morning. I was still a little concerned to get to Tuesday morning. That night, little man's daddy slept with him, so he could be close in case something should happen...he was so lethargic. He was not dehydrated because he was drinking enough of his hemp milk to stay hydrated. Little man has always been so strong and so resilent through all of this, it was so hard to see him like this- so very, very weak.
Tuesday morning we were admitted to the hospital and the doctors began their assessments. He was given an IV and blood tests were taken to assess his current state. His blood sugar was very low (in the 40s)!! We were of course concerned, but not surprised as this would explain his weak/floppy that was getting worse with each day. His body had was going into acidosis, which meant that he was burning muscle to make glucose to feed his brain- not good. Little man was so, so sick; we were glad to finally be in a place to get him help. IV's were started and his blood sugar picked right back up to an acceptable level (90s); he began to perk up as well. He continued to eat just plain Hemp milk until he was made NPO in preparation for his procedure the next day. The GI doctors wanted to do his upper endscopy and lower sigmoidoscopy right away, so this was scheduled for Wednesday mid-morning. Little man was given a bowel prep of Miralax....only it didn't work. He was in SO much pain most of the night (only getting barely 3hrs of sleep all night long). We finally had to give him an enema to "clear him out", which worked nicely (finally). The procedure went well and multiple biopsy's were taken to help further evaluate Little Man's continued intolerances.
We kept him on hemp milk for the rest of that day, which he drank like a champ. It was then discussed and decided the next morning to re-introduce the Neocate to assure his brain gets the nutrition it needs (avoiding the low blood sugar). This is where it is very helpful to have kept logs on Little man's eating and symptoms. We had started to see significant improvements in little man when we had started to move away from Neocate. We seem to have found a thresh hold were we saw little symptoms when he kept his Neocate intake to less than 20oz./day. I had noticed that when he had 24oz., he would have random throwing up and discomfort. So, we decided this would be a safe place to go back to to get him thriving again. This was started on Thursday afternoon. He has been drinking it well and doing primarily well on it.
Test results are coming back in, biopsy's have revealed that his intestinal inflammation is not changed, and may be worse, than it was on last scope 5mo. ago- this after 7mo.on elemental nutrition. It doesn't make sense, unless you consider that he has been reacting to the trace proteins in Neocate as we suspect. The GI doctors agree that it doesn't make sense, but we differ on the why. They ordered more tests to be done, testing for an auto-immune enteritis. Good news is if they find this, it can be treated with steroids to get the inflammation to finally subside and we can begin to introduce foods. The bad news, this is an auto-immune disorder - from infancy.
This is the course of FPIES, ruling out other possibility's while you treat the intolerances. It is a difficult road.
Little Man will stay in the hospital for the weekend, and Monday will bring more decisions and next steps to take.
As for the rest of the family- we are holding on. The 3 older boys are doing well, they understand that their little brother is sick and needs the extra care right now. We try to keep their routine as "normal" as we can so one of us stays home with them while one of us is at the hosptial; with the exception of when we have help to come stay with us. This week, that came in the form of my sister. The boys always enjoy visits from their Aunt, she knows their routine and their needs and that gives them much comfort and stability in an unknown circumstances.
We remain thankful for the continued support from family and friends....it gives us much comfort to have prayers for Sam's health and our strength for endurance being sent our way. We have a deep Faith that allows us to put our worries in God's hands.
Sunday, July 18, 2010
Between a rock and a hard place...
When you can't go backwards and you're stuck with how to move forward....where do you go?
I know Little Man will outgrow this one day, my goal has been to get him thriving in the meantime. I don't want to just 'get by' and "survive" the next 1-3yrs...if he were pain free and not throwing up every few days and maybe able to tolerate even just 1-3foods; it would be a consideration. But the trace proteins of corn in the Neocate were keeping him from this - his gut remained inflammed and continued assualt and this would keep him from tolerating any foods and is likely the culprit of this possible carbohydrate maldigestion issue.
So, the choices are:
1. Stay on (go back to) Neocate and have continued gut assualt but know that his brain is fed. No foods for the next 1-2yrs, along with continued throwing up, continued mucous stools, continued pain with ingestion of anything, and off and on again agitation/fussiness/colic- whatever you call it- clearly uncomfortable. Risk continued food fails (because of gut inflammation and unknown consequences of that) and him being sick over and over again- and then not even wanting his Neocate. Also, this isn't just about him- I have 3 other boys who this is affecting daily as well, if we have a choice to get better than this....how can we not take it?
So, brings us to, choice
2. Hemp milk and build him a formula...risk him being sick while we tease out which ingredients he can tolerate as fortifiers. Risk him losing weight while we look for ways to fortify his formula. Move away from FPIES triggers and gut inflammation and be able to see more cleary where all his almost daily pain for the past 9+mo is coming from.
Right now, we're stuck- he does not tolerate the carbohydrates we are adding to his formula....I have to choose between giving him unbearable gas, and runny stools to give him a carbohydrate or give him plain Hemp milk and have him hungry, but pain free, from no carbohydrate.
He is so tired today, but I do not feel it is only from the plain Hemp milk only diet- I feel it is from the tapioca, sugar, and potato causing so much distress that is exhausting him because he can't sleep through it, also the watery diarrhea from the maldigested carbohydrate causing some dehydration. I hope he pops out of it soon. I hope GI agrees to see him SOON. We are in need of GI doctors input for further guidance. I could go it alone and guess, but I'd rather have some medical input...
I amtempted to go back to tapioca starch and give him enzymes....might be worth a try - I don't know. Also thinking of getting a meat trial underway. Will need grass-fed (no soy, no corn) beef, lamb or pork.
I know Little Man will outgrow this one day, my goal has been to get him thriving in the meantime. I don't want to just 'get by' and "survive" the next 1-3yrs...if he were pain free and not throwing up every few days and maybe able to tolerate even just 1-3foods; it would be a consideration. But the trace proteins of corn in the Neocate were keeping him from this - his gut remained inflammed and continued assualt and this would keep him from tolerating any foods and is likely the culprit of this possible carbohydrate maldigestion issue.
So, the choices are:
1. Stay on (go back to) Neocate and have continued gut assualt but know that his brain is fed. No foods for the next 1-2yrs, along with continued throwing up, continued mucous stools, continued pain with ingestion of anything, and off and on again agitation/fussiness/colic- whatever you call it- clearly uncomfortable. Risk continued food fails (because of gut inflammation and unknown consequences of that) and him being sick over and over again- and then not even wanting his Neocate. Also, this isn't just about him- I have 3 other boys who this is affecting daily as well, if we have a choice to get better than this....how can we not take it?
So, brings us to, choice
2. Hemp milk and build him a formula...risk him being sick while we tease out which ingredients he can tolerate as fortifiers. Risk him losing weight while we look for ways to fortify his formula. Move away from FPIES triggers and gut inflammation and be able to see more cleary where all his almost daily pain for the past 9+mo is coming from.
Right now, we're stuck- he does not tolerate the carbohydrates we are adding to his formula....I have to choose between giving him unbearable gas, and runny stools to give him a carbohydrate or give him plain Hemp milk and have him hungry, but pain free, from no carbohydrate.
He is so tired today, but I do not feel it is only from the plain Hemp milk only diet- I feel it is from the tapioca, sugar, and potato causing so much distress that is exhausting him because he can't sleep through it, also the watery diarrhea from the maldigested carbohydrate causing some dehydration. I hope he pops out of it soon. I hope GI agrees to see him SOON. We are in need of GI doctors input for further guidance. I could go it alone and guess, but I'd rather have some medical input...
I amtempted to go back to tapioca starch and give him enzymes....might be worth a try - I don't know. Also thinking of getting a meat trial underway. Will need grass-fed (no soy, no corn) beef, lamb or pork.
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