It's been awhile since we've been to the pediatrician's office, 2 months actually. Of course we've been to the hospital since then, and we have home health nurse visits 2x/week; but all the same- it's been kinda nice not having to go to the clinic for appointments. So, why did I go this morning? A weight check. We get weights done at the hospital but they are too many variables for a weight for MY records....different scales, clothes on, clothes off, morning, afternoon, full of IV fluids. Of course all of this is mere ounces difference but when you have dipped down to the <3% for weight, every ounce counts.
September 1 Little Man was 11.1kg, which is 24#. Today, 2 months later, with 8 weeks on TPN, he is 12.76kg, which is 28#! He has gained 4# in 8 weeks! This weight will help us see how he is doing on food trials as well; although he will have the "back up" of TPN during the food trials to keep him from losing - we may still get indicators of his inflammation as calories are not readily absorbed from the gut, and his body needs extra calories if his villi (small intestine walls) get damaged. His growth chart is full of these types of losses. His growth curve is a picture of a bouncing ball. He would gain, and then fail a food and either lose or not have any gains for weeks. Just in September, when he was reacting to the Vit.C supplement; in a week and before we started TPN he lost 1/2kg which is a full pound in just one week! (so technically he has gained 5# in 8 weeks on TPN- having to regain a lost pound!).
He needed this weight gain, for catch up growth. He is now in the 35th% for his weight. I didn't think to get a height check on him too, and should have because looking at his growth chart, I am reminded that his last height check put him in <3% on the chart. He is much shorter than his brothers were at this age (judging by their growth charts on the wall), but he is proportionate for him. He is finally out of 24mo. clothes, and even moving up a size in diapers. From failure to thrive, grow and gain weight, to catch up growth. My heart smiles.
Showing posts with label weight. Show all posts
Showing posts with label weight. Show all posts
Wednesday, November 2, 2011
Monday, May 30, 2011
Weight Gain!!
In general, 3500calories make a pound. This will vary to a degree, but this is the average it takes to lose or gain a pound. In the past 9days, little man has gained an entire pound. On May 17, he was 23#1oz., 10days later on weight check this week, he was 24# 3oz.!
Little Man’s formula is approximately 21cal/oz. His needs are ~900-1100calories/day based on DRI- Dietary Reference Intakes. It has become his normal to increase his intakes following a reaction. Is it due to the inflammation causing malabsorption? Is it due to the weight loss following a reaction? Following the last few reactions (new probiotic, banana, and IV sucrose), little man lost almost 2#- all this work to gain those pounds gone in a matter of days. He needed to regain that weight, 3500calories to make a pound. His body puts a drive in him that is very strong. For the past few weeks, every 45-90min, he has been taking a 4-6oz.bottle. It seems we have barely turned around from sitting down to finish the one bottle when he is on to the next one. This goes on day, and night with night bottles slowing down to ~2-3hrs.instead. If he goes 2-3hrs.during the day (busy, distractions, travel, etc), he will wake more frequently at night- 6times in 9-10hr.night! Thank goodness, that since the probiotics, he has been able to sleep better- less colicky tummy pain and he wakes to eat a bottle and goes right back to sleep…and now he sleeps with us. I’ve wanted this many times over the past 2years- with such frequent night waking, I wanted so many times to just have him want to sleep in our bed- just so we could not only sleep but simply lie down; but he had to be walked, rocked, soothed. Now, he just needs his bottle- but don’t go too far away or that will wake him up (hence the sleeping with us). So, sometime around the middle of the night, he joins us in bed- waking us every few hours just to say ‘bottle’? In a 24hr.period he has been averaging 1400-1600calories!! An added 300-500 calories a day! And in 10days, he gained a little over a pound. The extra calories he ate were used by his body to regain his lost weight. This is a good sign. A very good sign. And we breathe a sigh of relief....and celebrate weight gain!
Little Man’s formula is approximately 21cal/oz. His needs are ~900-1100calories/day based on DRI- Dietary Reference Intakes. It has become his normal to increase his intakes following a reaction. Is it due to the inflammation causing malabsorption? Is it due to the weight loss following a reaction? Following the last few reactions (new probiotic, banana, and IV sucrose), little man lost almost 2#- all this work to gain those pounds gone in a matter of days. He needed to regain that weight, 3500calories to make a pound. His body puts a drive in him that is very strong. For the past few weeks, every 45-90min, he has been taking a 4-6oz.bottle. It seems we have barely turned around from sitting down to finish the one bottle when he is on to the next one. This goes on day, and night with night bottles slowing down to ~2-3hrs.instead. If he goes 2-3hrs.during the day (busy, distractions, travel, etc), he will wake more frequently at night- 6times in 9-10hr.night! Thank goodness, that since the probiotics, he has been able to sleep better- less colicky tummy pain and he wakes to eat a bottle and goes right back to sleep…and now he sleeps with us. I’ve wanted this many times over the past 2years- with such frequent night waking, I wanted so many times to just have him want to sleep in our bed- just so we could not only sleep but simply lie down; but he had to be walked, rocked, soothed. Now, he just needs his bottle- but don’t go too far away or that will wake him up (hence the sleeping with us). So, sometime around the middle of the night, he joins us in bed- waking us every few hours just to say ‘bottle’? In a 24hr.period he has been averaging 1400-1600calories!! An added 300-500 calories a day! And in 10days, he gained a little over a pound. The extra calories he ate were used by his body to regain his lost weight. This is a good sign. A very good sign. And we breathe a sigh of relief....and celebrate weight gain!
Thursday, May 19, 2011
A switch?
We seem to be at a baseline that we haven't been at in a long-long time. The last time I remember him being this stable was last fall.....before anemia hit us with a side blow, before soy fail hit us with villous atrophy, before TPN, before re-cooping from TPN and failed vitamin trial, and accidental ingestion's, and, and, and.....Even his recent reactions (from accidental ingestion's, banana, exposures) have been rough but not as severe as past reactions. And despite the recent illness from IV sucrose, his body seems to be bouncing back much better than it previously would have. Why is this? Is he maturing? Becoming less reactive? Or have we hit on something that "fits" his needs?
It has taken 2months of playing around with probiotics but we seem to have finally hit on a good strain and dosage for him. And although it is very delicate dosing, on the days when we get it right- he is such a different little boy. I have found that he needs 2 capsules/day, of Kirkmans CD Biotic (broken open and dissolved in hemp milk). He can not have 2 capsules all at once, it's too much. He does ok when I break up his dosages morning and evening but he has a plateau effect from that. After his stool study came back and showed that he has no lactobaccilli growth detected, it becomes clear why he plateau's so easily and I have the idea to try and mix it in his formula, so he is getting low-dose, all day long. This works wonderfully but it has taken a few weeks to work through kinks (and I don't think they are all worked through yet!). I discovered that I can't put it in too many bottles at once, it goes about 8-10hrs, and then it starts to ferment and he doesn't so much enjoy that fermented hemp milk taste. Have you ever tasted/heard of Kefir? It's kinda like that. Now, that is a good sign- it means those probiotic bugs are active! It also means there is adequate sugars/carbohydrates for them to survive off of, enough to grow. Now, do they make it past his stomach acid? I hope so. Hemp has a decent amount of fiber; and fiber is what makes a good pre-biotic. Either way, we're working with what we've got and it's working ok. I long to get coconut in his diet- to make coconut milk and coconut yogurt and so many other things. We're working on it, very slowly.
Good appetite, weight gain, less adverse effects from reactions....all very good things but the best thing so far that we have noticed a change is following antibiotics. Little man has dysbiosis- meaning his gut flora is off, there are more "bad" gut bugs than "good" and although I still learn more everyday to all the effects this has on health, immune system, the brain even; we see the effects it has had on Little man....with very little oral tolerance, with disturbed sleep and mood, with failing most foods we trial, and with pain. Pain that I don't completely understand but know is there....a mother knows when their child is in pain. Pain that has been absent from our everyday now since antibiotics, followed by increased probiotics. Is this the switch he needed?
I want so badly to test it out- to try a dozen new foods! And yet, I also want to just stay here for awhile, not risk causing him that pain again. And what if I introduce a food that flips that switch back into dysbiosis? But what if not introducing a food causes him to slip back into dysbiosis again? What if there is a "good" food to do, what if I pick the wrong food?
We must go forward. He needs a better menu, he needs B vitamins, and better Vit.C, and micro nutrients, and variety....and something.to.eat!! Yesterday, the 4 boys and I drove 40miles one way to get 2# of ground buffalo, and a pound of buffalo liver. The Buffalo gal even threw in some Elk from a farm down the road, in hopes that Elk may be even better for him than buffalo. Buffalo aren't typically fed corn. They graze as they did hundreds of years ago; but some farmers do "finish" their buffalo on corn. "Finishing" happens with a lot of grass-fed animals, so if you're watching for soy or corn feed- always check to be sure they are not "finished" on corn/soy. Adding the corn/soy feed in at the end likely gives them less "gamey/grassy" taste to the meat. Little man's corn trigger is quite sensitive so we do not want to take the chance. The buffalo gal was worried that her buffalo, being free range may come in contact with some corn-like grass over their lifetime; she felt compelled to inform me this. I am taking the chance that it will not be an issue- it's all about the trials anyway? But, she wanted us to try Elk first as they are not free-range and are sure their diet does not consist of any corn or corn-like products. I also had her check with the butcher/processor, to be sure there is no spray or preservative during processing that would come from corn. The things I never thought of before having a child with a corn allergy.....
We will give him another week or so, to be sure he is healed past the recent illness. The IV sucrose was not in his gut- so we feel he shouldn't take as long to heal from that, despite how sick it made him that week. We will wait for good weight gain to show itself, and to continue this baseline we see. Then, Elk, Buffalo, continuing coconut, and some vegetables?
Ferocious appetite!
Little Man finally bounced out his reactions, and now onto his post-reaction appetite. Typically we will see him eat ~70oz. of his 20-22calories/oz. formula a day or two after a reaction. Making up for lost calories? Making up for malabsorbed calories? Rebuilding lost intestinal tissue or villi? I am never quite sure. I am glad to see him eat, the only way to describe this appetite is ferocious!
His homemade formula has ~20-22cal/oz (by my calculations it is 21cal so I average it between 20-22cal). Over the past week, he has taken in an average of 1450calories/day- some days in the 1200's but a few days even taking over 1500calories/day! At his current weight, he needs around 1100 calories/day to maintain and grow, adding in a few hundred calories for extra growth....which is just what he is doing! Every time we turn around, he is getting fussy and asking "bottle?" again- every 45-90minutes he is taking a 4-6oz. bottle! We have barely been able to run errands or do anything in this short amount of time between bottles. But I am happy to stay home, keep his formula cold until it needs to be warmed up and then snuggle in for a bottle every.single.time he asks- especially if this gets us back the almost 2# of weight he lost recently. Weight that we worked so hard for, taking 2-3weeks of concentrating my time and efforts to make sure he is encouraged to eat every 2hrs, to sleep next to him so I could get him a bottle right away- so he could take in the 300-400 extra calories he takes in at night. It paid off and he gained weight, and was doing well....until we started to spiral.....
A weight check last week revealed no weight gain, and a few grams of a loss. Too early to tell, we weighed in again this week.....we regained those few grams but it doesn't seem to match his extra caloric intakes. We will weigh in again next week before we start to worry but he does seem to be absorbing those calories and he does look like he's gaining and getting good nutrition. His cheeks seem to be filling out and getting some more color from the past weeks post-reaction pale. For now, we'll revel in the positives and continue to take it one day at a time.
His homemade formula has ~20-22cal/oz (by my calculations it is 21cal so I average it between 20-22cal). Over the past week, he has taken in an average of 1450calories/day- some days in the 1200's but a few days even taking over 1500calories/day! At his current weight, he needs around 1100 calories/day to maintain and grow, adding in a few hundred calories for extra growth....which is just what he is doing! Every time we turn around, he is getting fussy and asking "bottle?" again- every 45-90minutes he is taking a 4-6oz. bottle! We have barely been able to run errands or do anything in this short amount of time between bottles. But I am happy to stay home, keep his formula cold until it needs to be warmed up and then snuggle in for a bottle every.single.time he asks- especially if this gets us back the almost 2# of weight he lost recently. Weight that we worked so hard for, taking 2-3weeks of concentrating my time and efforts to make sure he is encouraged to eat every 2hrs, to sleep next to him so I could get him a bottle right away- so he could take in the 300-400 extra calories he takes in at night. It paid off and he gained weight, and was doing well....until we started to spiral.....
A weight check last week revealed no weight gain, and a few grams of a loss. Too early to tell, we weighed in again this week.....we regained those few grams but it doesn't seem to match his extra caloric intakes. We will weigh in again next week before we start to worry but he does seem to be absorbing those calories and he does look like he's gaining and getting good nutrition. His cheeks seem to be filling out and getting some more color from the past weeks post-reaction pale. For now, we'll revel in the positives and continue to take it one day at a time.
Sunday, April 3, 2011
Oh boy, you're heavy!
But I'm not complaining, really! Except when he gets clingy from reaction symptoms....
We haven't had a weight check in a few weeks, with the cold he developed and waiting out results from Dr.J's research, we haven't even been to a doctors office! It may be a record for us! I am curious as to his weight....because I am sure he has gained. Last week, I even had to get out the 2T tote and put away the 18mo. clothes (finally since he is 21mo.old) and get out the 24mo/2T clothes! He has a filled out belly and cheeks- I look forward to finding out how much he has gained since our last check!
I hope the last few days don't cause him to slide backwards too much, he seemed improved today but he appears to have reacted to the probiotic switch (from Kirkman's CD-Biotic to Kirkmans ProBioGold). I am still unsure of what he reacted to in it- if it is a strain or a filler (I only assumed it was made the same as the CD Biotic which he was tolerating- bad mommy mistake!). But, as with what defines FPIES- it is trial and error. I was giving him smaller doses, being that there were new strains that he hasn't had before (different lactobacillus ones and a new one- streptoccus thermophilus. A fellow FPIES mom warned me to be cautious with a probiotic that contains that strain, so we were being cautious...trial and error. The first day, I noticed blood in his diaper- although he has a fissure so it isn't odd to see blood in his diaper. I also notice his stool isn't as soft as it should be given that probiotics help regulate things. That night, he woke up crying....I had heard him coughing, I go to him and he is trying to get his shirt off and hand me his blanket- he had thrown up on his pillow, blanket and shirt. It wasn't a lot- more than spit up but less than FPIES trigger vomit. Was it from the cough or is this the beginning of a reaction? He had had a few of these cough/throw up already earlier in the week. We had been trying to see if he could tolerate the plum organic peaches again- in his merry muffins; but it has been 2 days since his last nibble of that...that otherwise appears to be going well, none of the symptoms that he had after his multivitamin fail when I was concerned his body couldn't tolerate even his safe foods (millet and peaches) - as I said at that time, maybe there is something to the fact that he needs only very low fiber foods as to not irritate the intestinal lining. Regardless, all of his prior cold symptoms had resolved so I thought odd for him to have this cough but did just decide it must be from the cough. Little man's daddy and I discuss how he has been calmer that day, noting maybe even lethargic. I remained hopeful that it was just calmness. We kept busy the next day (Friday) and he was great all morning- playing, smiling, a visit to some dear friends and they were impressed at how strong and healthy and happy he looks since they last saw him. We had a great morning. He came home and struggled to settle down for his nap....too much excitement? Finally got him to sleep and he slept well, even through a playdate for the other boys (6 boys in the house!) Actually, we're very lucky to have such great friends as their boys are very well behaved and no one made any noise to wake up Little Man. He woke from his nap a little clingy, but not surprising since we had company; he warmed up nicely and began to play a little. That evening he remained tired, got very fussy and clingy. I decided he was heading in the wrong direction with these probiotics and I was getting too nervous. He hadn't eaten well that day either- why? So, yesterday we took a day off from them but his body was still progressing....is it the probiotic or something else? I suppose if it is the flora that he is reacting to, it might make sense that it is taking awhile to get out of his system. I am really not sure but Saturday was a beautiful day and he enjoyed an hour or two of it but otherwise was clingy, whiny, fatigued, maybe even feverish, and in our arms. He ate poorly and last night he didn't even wet through a normal diaper (where typically I have to change his nighttime diaper once during the night). In the morning, he had a loose diaper. Enough, I'm calling it a fail....but what is he failing? It was progressive, I don't feel they were "die off" symptoms, but maybe.....but not worth risking either. He gets so sick from fails, I can't push it when there are this many off symptoms. Today, he returned to a baseline for the most part; he ate A LOT today- and then had a 30min. screaming session that ended in puking before finally relaxing into sleep. What is going on? Only time will tell. He hasn't had probiotic in 2 days, and we will see how he does backing off of them for a bit. I am sensing now is the right time to do the stool tests I spoke about previously. We can't afford them any better than we could a month ago but Little Man can't afford to be sick from this trial and error either. He also can't afford too much longer with no food trials. He needs this tiny menu we keep striving for....
We will get a weight check tomorrow at the Immunology appointment, stay tuned!
We haven't had a weight check in a few weeks, with the cold he developed and waiting out results from Dr.J's research, we haven't even been to a doctors office! It may be a record for us! I am curious as to his weight....because I am sure he has gained. Last week, I even had to get out the 2T tote and put away the 18mo. clothes (finally since he is 21mo.old) and get out the 24mo/2T clothes! He has a filled out belly and cheeks- I look forward to finding out how much he has gained since our last check!
I hope the last few days don't cause him to slide backwards too much, he seemed improved today but he appears to have reacted to the probiotic switch (from Kirkman's CD-Biotic to Kirkmans ProBioGold). I am still unsure of what he reacted to in it- if it is a strain or a filler (I only assumed it was made the same as the CD Biotic which he was tolerating- bad mommy mistake!). But, as with what defines FPIES- it is trial and error. I was giving him smaller doses, being that there were new strains that he hasn't had before (different lactobacillus ones and a new one- streptoccus thermophilus. A fellow FPIES mom warned me to be cautious with a probiotic that contains that strain, so we were being cautious...trial and error. The first day, I noticed blood in his diaper- although he has a fissure so it isn't odd to see blood in his diaper. I also notice his stool isn't as soft as it should be given that probiotics help regulate things. That night, he woke up crying....I had heard him coughing, I go to him and he is trying to get his shirt off and hand me his blanket- he had thrown up on his pillow, blanket and shirt. It wasn't a lot- more than spit up but less than FPIES trigger vomit. Was it from the cough or is this the beginning of a reaction? He had had a few of these cough/throw up already earlier in the week. We had been trying to see if he could tolerate the plum organic peaches again- in his merry muffins; but it has been 2 days since his last nibble of that...that otherwise appears to be going well, none of the symptoms that he had after his multivitamin fail when I was concerned his body couldn't tolerate even his safe foods (millet and peaches) - as I said at that time, maybe there is something to the fact that he needs only very low fiber foods as to not irritate the intestinal lining. Regardless, all of his prior cold symptoms had resolved so I thought odd for him to have this cough but did just decide it must be from the cough. Little man's daddy and I discuss how he has been calmer that day, noting maybe even lethargic. I remained hopeful that it was just calmness. We kept busy the next day (Friday) and he was great all morning- playing, smiling, a visit to some dear friends and they were impressed at how strong and healthy and happy he looks since they last saw him. We had a great morning. He came home and struggled to settle down for his nap....too much excitement? Finally got him to sleep and he slept well, even through a playdate for the other boys (6 boys in the house!) Actually, we're very lucky to have such great friends as their boys are very well behaved and no one made any noise to wake up Little Man. He woke from his nap a little clingy, but not surprising since we had company; he warmed up nicely and began to play a little. That evening he remained tired, got very fussy and clingy. I decided he was heading in the wrong direction with these probiotics and I was getting too nervous. He hadn't eaten well that day either- why? So, yesterday we took a day off from them but his body was still progressing....is it the probiotic or something else? I suppose if it is the flora that he is reacting to, it might make sense that it is taking awhile to get out of his system. I am really not sure but Saturday was a beautiful day and he enjoyed an hour or two of it but otherwise was clingy, whiny, fatigued, maybe even feverish, and in our arms. He ate poorly and last night he didn't even wet through a normal diaper (where typically I have to change his nighttime diaper once during the night). In the morning, he had a loose diaper. Enough, I'm calling it a fail....but what is he failing? It was progressive, I don't feel they were "die off" symptoms, but maybe.....but not worth risking either. He gets so sick from fails, I can't push it when there are this many off symptoms. Today, he returned to a baseline for the most part; he ate A LOT today- and then had a 30min. screaming session that ended in puking before finally relaxing into sleep. What is going on? Only time will tell. He hasn't had probiotic in 2 days, and we will see how he does backing off of them for a bit. I am sensing now is the right time to do the stool tests I spoke about previously. We can't afford them any better than we could a month ago but Little Man can't afford to be sick from this trial and error either. He also can't afford too much longer with no food trials. He needs this tiny menu we keep striving for....
We will get a weight check tomorrow at the Immunology appointment, stay tuned!
Wednesday, March 2, 2011
We have weight gain!!
With no assaults to his system, on a safe diet, and now with probiotic introduction....in the past 2 weeks, we have a 1# weight gain!! A FULL and ENTIRE pound!! AND he's gaining in inches in this time too! I suspected as much as I've been putting away a lot of outfits in the "outgrown" bin and pulling out the 2T cloths!
I have his formula to ~22calories/ounce, and he had been averaging ~1100cal/day; which is enough for weight maintenance but not gains for this active toddler. Since starting the probiotic, he averages ~1300-1400cal/day!
We are ecstatic. This is great news, on so many levels- to see him growing....to go from less then 10th% to in the 20th%tiles is so very rewarding! I watch his growth chart closely....it is a big gauge for his nutrition status (for the mommy in me as much as the dietetic technician in me!). It also confirms how, if his gut is recovered from reactions- he can, and does, gain weight. A good sign.
I have his formula to ~22calories/ounce, and he had been averaging ~1100cal/day; which is enough for weight maintenance but not gains for this active toddler. Since starting the probiotic, he averages ~1300-1400cal/day!
We are ecstatic. This is great news, on so many levels- to see him growing....to go from less then 10th% to in the 20th%tiles is so very rewarding! I watch his growth chart closely....it is a big gauge for his nutrition status (for the mommy in me as much as the dietetic technician in me!). It also confirms how, if his gut is recovered from reactions- he can, and does, gain weight. A good sign.
Monday, November 29, 2010
Weight gain!
Little man has been maintaining a baseline for 3 weeks now, with only slight deviations from it. He continues to have sleep disruption for the past month, pain is accompanied when his stomach is empty and he can't seem to get enough to eat but since his stomach only holds so much at a time- he is awake until he gets enough....usually 1-2hrs in the middle of the night. We have tried getting more in during the day, we have also tried "dream" feeds- which work some nights but other nights seems to make things worse. Maybe it helps so that his stomach isn't as empty but it disrupts his normal sleep pattern so he ends up being awake anyway. He isn't screaming or wide awake in pain, he is just not "settled" for a few hours almost every night. Sleep, precious sleep.....someday, maybe....
Aside from sleep, he has been doing primarily well and then all of a sudden he started to slide on Friday and by Saturday was an-all-too-familiar-mess. Wednesday & Thursday's changes were an addition of an extra tablespoon of safflower oil in his formula. Friday night two things entered his system: 1)bath water that his brothers had put soap in and 2) his new Rx: compounded omeprezole. Sunday we saw a return back to baseline (thank goodness!) but I was nervous about things getting worse if it was the omeprezole, and little man's daddy was at work Sunday so I skipped that dose; but gave him his dose on Sunday night. He slept well and woke up singing! Today was a very good day- lots of giggles, playing well, SINGING, and eating and napping well. The only worrisome symptom? Hiccups, twice this morning. Yes, hiccups- hiccups he only has had when things are not going well in his digestion....but hiccups alone are no reason to stop a medication that could be helping his inflammation finally heal.
We decided to do the omeprezole trial on the recommendations of the GI doctor, who feels that he is stuck in this cycle of not tolerating food/pain with eating because of unhealed inflammation. Inflammation that is being washed over by stomach acid, causing irritation. This makes sense in a few ways: 1) of course a sore can't heal with acid washing over it, and 2) he has had extra acid production in order for his iron supplement to be absorbed. This is about the time frame we started seeing these back arching, uncomfortable-when-his-stomach-is-empty kind of symptoms, so it makes sense and hopefully is the right fit. Hopefully his body doesn't have an adverse reaction to the medication before it can do at least some of it's job. It is specifically compounded to be free of his allergens, so the intolerance to it would be his body not liking the Proton Pump Inhibitor (ie- stopping stomach acid production). You need stomach acid for digestion, so I am leery of him being on this too long- fixing one problem will just create another. We will let him guide us, as he has done....we will listen to his body and the symptoms and signals he sends....
The GREAT news of today is his weight check. We are monitoring his weights closely- it has helped to see how long it takes for his body to re-coop from a reaction, and clues to what is going on with his digestion and absorption of calories taken in. As I mentioned above, we added a tablespoon of oil (under guidance of our Dietitian) to his formula recipe (he already gets 3Tbsps in 80oz: a very high fat diet right now). The side effect we should have seen was loose stools, but instead we are getting the opposite. Side effect noted. Moving forward. He needs the extra calories, even if they are just fat calories, to regain some lost weight and begin to make some sort of catch up. But even more, he needs to show us that his calories in = weight gained; which in turn show us that his atrophy and inflammation are healing and his body is re-cooping well enough to avoid alternative forms of nutrition (TPN=IV nutrition). So, the scale today gave us good news....10kg! He is now at his high of 22#!! Not only that, he gained almost 3grams in 5days!! We pray next steps allow him to keep this weight gain, while adding to it.
Peaches continue to go well, and tonight he made big steps (celebrating I guess?!) and accepted some millet porridge fed to him by me, from a spoon. This little boy has spoon aversion, too many times I fed him food from a spoon that later made him sick. He prefers to feed himself, but he also has texture aversions (and will not feed himself from the spoon either), and he can not currently tolerate raw forms of food. So, his peaches are in his mesh feeder or in "dots" (cooked, pureed, piped, frozen dots of peaches) that he can pick up with his fingers or his fork. So, tonight I made him millet/peach "dots" and put them in the freezer for him to try over the next few days; and since I had fresh millet porridge- I put some aside in a bowl to see if he was willing to trust me and let me feed him. He was leery at first but he warmed up and took a a few tablespoons worth from me! I was very proud of him. He also had a little mug that he asked me to put water in (as I was pouring water into my glass) and I did and he drank it right down and asked for more! He did this 4 times, drank it down,and didn't spill a drop! This is A LOT of BIG steps in ONE meal and I am very excited about it.
Lots of good things to mark the day. One month ago today, October 29th, he was bottomed out and awaiting a blood transfusion. Now, November 29th: good weight gain, ate from a spoon, ate millet baby porridge, drank from a cup. A day to mark on the calendar. A good day.
Aside from sleep, he has been doing primarily well and then all of a sudden he started to slide on Friday and by Saturday was an-all-too-familiar-mess. Wednesday & Thursday's changes were an addition of an extra tablespoon of safflower oil in his formula. Friday night two things entered his system: 1)bath water that his brothers had put soap in and 2) his new Rx: compounded omeprezole. Sunday we saw a return back to baseline (thank goodness!) but I was nervous about things getting worse if it was the omeprezole, and little man's daddy was at work Sunday so I skipped that dose; but gave him his dose on Sunday night. He slept well and woke up singing! Today was a very good day- lots of giggles, playing well, SINGING, and eating and napping well. The only worrisome symptom? Hiccups, twice this morning. Yes, hiccups- hiccups he only has had when things are not going well in his digestion....but hiccups alone are no reason to stop a medication that could be helping his inflammation finally heal.
We decided to do the omeprezole trial on the recommendations of the GI doctor, who feels that he is stuck in this cycle of not tolerating food/pain with eating because of unhealed inflammation. Inflammation that is being washed over by stomach acid, causing irritation. This makes sense in a few ways: 1) of course a sore can't heal with acid washing over it, and 2) he has had extra acid production in order for his iron supplement to be absorbed. This is about the time frame we started seeing these back arching, uncomfortable-when-his-stomach-is-empty kind of symptoms, so it makes sense and hopefully is the right fit. Hopefully his body doesn't have an adverse reaction to the medication before it can do at least some of it's job. It is specifically compounded to be free of his allergens, so the intolerance to it would be his body not liking the Proton Pump Inhibitor (ie- stopping stomach acid production). You need stomach acid for digestion, so I am leery of him being on this too long- fixing one problem will just create another. We will let him guide us, as he has done....we will listen to his body and the symptoms and signals he sends....
The GREAT news of today is his weight check. We are monitoring his weights closely- it has helped to see how long it takes for his body to re-coop from a reaction, and clues to what is going on with his digestion and absorption of calories taken in. As I mentioned above, we added a tablespoon of oil (under guidance of our Dietitian) to his formula recipe (he already gets 3Tbsps in 80oz: a very high fat diet right now). The side effect we should have seen was loose stools, but instead we are getting the opposite. Side effect noted. Moving forward. He needs the extra calories, even if they are just fat calories, to regain some lost weight and begin to make some sort of catch up. But even more, he needs to show us that his calories in = weight gained; which in turn show us that his atrophy and inflammation are healing and his body is re-cooping well enough to avoid alternative forms of nutrition (TPN=IV nutrition). So, the scale today gave us good news....10kg! He is now at his high of 22#!! Not only that, he gained almost 3grams in 5days!! We pray next steps allow him to keep this weight gain, while adding to it.
Peaches continue to go well, and tonight he made big steps (celebrating I guess?!) and accepted some millet porridge fed to him by me, from a spoon. This little boy has spoon aversion, too many times I fed him food from a spoon that later made him sick. He prefers to feed himself, but he also has texture aversions (and will not feed himself from the spoon either), and he can not currently tolerate raw forms of food. So, his peaches are in his mesh feeder or in "dots" (cooked, pureed, piped, frozen dots of peaches) that he can pick up with his fingers or his fork. So, tonight I made him millet/peach "dots" and put them in the freezer for him to try over the next few days; and since I had fresh millet porridge- I put some aside in a bowl to see if he was willing to trust me and let me feed him. He was leery at first but he warmed up and took a a few tablespoons worth from me! I was very proud of him. He also had a little mug that he asked me to put water in (as I was pouring water into my glass) and I did and he drank it right down and asked for more! He did this 4 times, drank it down,and didn't spill a drop! This is A LOT of BIG steps in ONE meal and I am very excited about it.
Lots of good things to mark the day. One month ago today, October 29th, he was bottomed out and awaiting a blood transfusion. Now, November 29th: good weight gain, ate from a spoon, ate millet baby porridge, drank from a cup. A day to mark on the calendar. A good day.
Saturday, August 21, 2010
Progress
Sorry for the multiple posts today but have a lot on my mind lately and realized I forgot to share our small victories....
We are making progress, even though we will continue to strive for more - we are happy to celebrate the little steps.
Little man has struggled with his weight since he was 6mo. old (and before), he has many periods of no weight gain (after reactions, the body doesn't absorb nutrients as efficiently thought to be because of the inflammation). We monitor his weights for when he starts to gain again, gives us indications his inflammation is decreasing enough for him to absorb the calories he takes in.
Little man lost weight right before being admitted to the hospital, one month ago. He has re-gained that lost weight and more! Since the admission to the hospital, he has put on 1#11oz.!! He went from 19#8oz to 21#3oz. (at this weeks weight check)!
He is FINALLY gaining weight- in good strides! He is also NOT IN PAIN!!! His bloody stools do continue, we are not sure when that will stop but these other signs are good indicators that we are moving in the right direction.
These indicators will also be the criteria for measuring how he is doing on the Neocate Advance (from the UK).
Keep up the prayers! We're doing something right- he is a happy boy! And for now, I can't ask for anything more.
Little Man's daddy has been building him and mudpies a swing set/fort this week. We celebrated small victories with buying a slide for it.
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We are making progress, even though we will continue to strive for more - we are happy to celebrate the little steps.
Little man has struggled with his weight since he was 6mo. old (and before), he has many periods of no weight gain (after reactions, the body doesn't absorb nutrients as efficiently thought to be because of the inflammation). We monitor his weights for when he starts to gain again, gives us indications his inflammation is decreasing enough for him to absorb the calories he takes in.
Little man lost weight right before being admitted to the hospital, one month ago. He has re-gained that lost weight and more! Since the admission to the hospital, he has put on 1#11oz.!! He went from 19#8oz to 21#3oz. (at this weeks weight check)!
He is FINALLY gaining weight- in good strides! He is also NOT IN PAIN!!! His bloody stools do continue, we are not sure when that will stop but these other signs are good indicators that we are moving in the right direction.
These indicators will also be the criteria for measuring how he is doing on the Neocate Advance (from the UK).
Keep up the prayers! We're doing something right- he is a happy boy! And for now, I can't ask for anything more.
Little Man's daddy has been building him and mudpies a swing set/fort this week. We celebrated small victories with buying a slide for it.
.jpg)
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