Today was some of the same symptoms as yesterday but not a build in symptoms; actually if anything- they were less. I am still confused by the symptoms at all, if this is going to be a pass but I am so encouraged that things didn't build. Maybe what we are seeing is left over from the Alimentum he had this weekend? It wouldn't be the first time a trial got muddied by being too close to a fail or just from a food that caused symptoms.
He got 3 doses today (2tsp at a time, in 3 different bottles throughout the day). His symptoms to note are: crankiness when waking this morning and from nap....but I have to remind myself that is not abnormal for him- he really struggles with this transition and I really wish I knew why.
But the good news, other than that- he was his normal mild-natured self all day. His cheeks aren't as rosy/chapped looking but it is waxing and waning still a bit. The concerning symptom of the blue coloring (cyanosis) around his lips and eyes is still there- there was a point today I just couldn't get over how terrible he looked.....but he was acting fine! He took a good nap, and he has fallen asleep easily tonight. His bowel movements have been great (yesterday and today)- no mucus, no blood, no increase or liquidy diapers, no diaper rash, no allergy ring; but there has been hiccups- twice. I know, seems silly right? Well, he's gotten hiccups before a fail before. He's also gotten hiccups randomly just like anyone else so who knows if this is a warning sign or not.
Either way, we press on. We press on encouraged because his appetite was good today- he ate his millet "cake" for lunch, and he had snacks through the day and willingly drank his bottles, and had dinner even! I made mashed potatoes and he LOVED them! I mixed them with his safe oil (Safflower) and his hemp milk. He ate a few tablespoons, and then he followed that with gobbling down 3 mini millet muffins and a whole cup of peach juice (peach puree + water = his safe juice). He then had a bedtime snack of 6 mini muffins.
The next day started out well, actually really-really well. The two little boys played SO well together! And then as the late morning wore on, we started seeing him crumbling...little things were upsetting him, he wanted mommy or daddy right next to him, he was getting obsessed over things (he has odd obsession behaviors when he isn't feeling good), he had 2 bowel movements - that although they didn't have any reactionary look to them, 2 in a day is out of his norm, plus that "allergy ring" was showing and some spots around his diaper area. What is this about? I actually didn't go right to the ProViMin in my head....
This is where it gets really hard....when you start seeing symptoms but you can't be 100% sure if they correlate with the trial or from something else....accidental exposure, cross contamination, etc. My head went to the Potato Stix he had eaten that morning. We initially found Pic-Nix potato stix at a Fleet Farm on our way up north last weekend. Everyone was getting a treat and I picked it up and read the ingredients: potato and cottonseed or palm, or safflower oil, and sea salt. Safflower oil is his SAFE oil! Right under the ingredients it states that it is manufactured on a dedicated line- no line cross contamination risk! The risk with it though is we're not sure if cottonseed or palm are safe....and actually have had suspicions that they might not be (from other foods with them). But, I took the risk anyway...we're traveling, he's not eating.anything. on the drive....I wanted him to have something to re-stimulate his appetite and was excited to give him a snack, just like this brothers were getting. I took the risk, for him.
He ate the entire can over the course of the weekend, no symptoms to note. On the way home, we didn't go the same way but discussed that maybe we should have - since that can was seemingly safe, we should stock up!! Although we do have a Fleet Farm down the road from our house. I ran some errands earlier this week and decided to get some more, from our local Fleet Farm. I brought them home and he wanted some, took a few bites and then didn't want to eat them. Huh, well- maybe his "jag" is done and now that we're home, he wants something else "new"....or maybe it is a different batch with a not-so-safe oil and he can tell? My radar goes up a little. But, he has been asking for his "star cake" so I've been making that everyday (millet muffins made with a small star silicon pan). With the addition of pure maple syrup and ground CheeCha puffs (for potato starch/flour), the texture holds up better than his mini muffins ever did and he's gobbling them up- by the fork-ful! I'm amazed at how well this little boy is using a fork and spoon!
Ok, this is getting long so I better get to the point! Yesterday, he asked for his "potato chips" first thing in the morning. I hesitated- thinking of how he hasn't wanted them and what if they contain a unsafe ingredient and we're in the middle of the ProViMin trial,... but he has been wanting to eat before his morning bottle and I don't want to discourage that! So, I let him eat some- he didn't eat many and then he wanted his bottle, we decided to up the dose of the ProViMin yesterday- he has been SO pale and he needs the nutrients so his body can make iron if we have any hopes of not having to have another IV Iron infusion or blood transfusion. He took his 8am bottle and his 10:30am bottle well and was playing well all morning and then he had a full lunch of peaches, a potato pancake, 4 mini millet muffins, and some more potato stix. After lunch, he took another bottle and he started to get really crabby, we hoped he was just tired and an hour later he took another bottle and finally went to sleep.
He did fine all evening, although his appetite was decreased and he was a little clingy to daddy. We got home late and he went to sleep easily and then he woke up around 3am SCREAMING!!! Yelling and screaming and thrashing and then hitting and kicking and screaming! He woke up everybody in the house, he was just crazy!! It's 3am!! We finally got him calmed down but he stayed awake for at least another hour. The next morning he was very crabby all morning- everything causing tears...all out of sorts.
He seemed to be getting better as the afternoon wears on, so I am still hoping my instincts are right and that it was the potato stix and that will just have to work it's way out of his system (the can went into the garbage!) and not the increased ProViMin (went from 2tsp/bottle to 3tsp/bottle- upping his intake to 1/4cup/day (end goal being 1cup/day of ProViMin).
I am also worried about his anemia and fear we have to face it and bring him in for an evaluation soon- he is so pale and has been for at least 2 weeks now, and this disturbed sleep (sleeping but not acting rested and then being up in the middle of the night) are familiar anemia symptoms. Also, his tube looks terrible!! I'm ready for it to just be taken out...we can't use it and he's now complaining again of it hurting during the day, and who can blame him? It's so red and inflamed, it looks like it is going to push itself out!! Time to address it. Surgery has given their recommendation - to pull it out, that it is causing more pain and adverse symptoms than it is helping (for sure!). His doctors are not sure if we are there yet with it and still hope to utilize it. We are just not sure.
We continue to pray that the ProViMin will work out.
Showing posts with label food labels. Show all posts
Showing posts with label food labels. Show all posts
Thursday, May 31, 2012
Friday, February 10, 2012
Why Alimentum Ready to Feed, Why now?
Alimentum Ready to Feed (Ali RTF) is a casein hydrolysate (pre-digested/broken down) based formula that is NOT in a corn syrup base. In fact, it is completely corn free! It is in a tapioca based syrup.
Hydrolysate formula's are considered hypoallergenic because they are a broken down proteins, broken down enough so that many (most) allergic people can tolerate them (dependent on the severity of the allergy) they are typically the first stop before proceeding to an elemental formula when allergies are presenting in an infant.
So, why haven't we used it before? Little man's dairy allergy was severe and sensitive, and he reacted to Nutramagin tried two separate times. Once we discovered he had a corn allergy, we wondered if he had reacted to the corn in the formula or the dairy (casein hydrolsate) but after speaking to the allergist who diagnosed him, he felt his symptoms with dairy and soy- through breastmilk and other formula's indicated he had both Milk/Soy FPIES and solid food (grains) FPIES and we needed to avoid dairy for the time being. There was no weighted need to risk making him sick when we knew small exposures of dairy resulted in vomiting and diarrhea. Once we had him on elemental formula only for 5mo. with no improvement (and worsening) of symptoms, our suspicions of the corn allergy were confirmed and I began to come up with a homemade formula. I used tapioca starch as the carbohydrate/syrup base and this resulted in a myriad of symptoms which ended in dumping diarrhea that dehydrated him and landed him in the hospital for metabolic acidosis. Alimentum RTF was not an option for more reason than one.
So, I began making him a homemade formula, with hemp milk and hemp protein as the base and safflower oil for added fats and arrowroot starch for just enough carbohydrate source. But it was lacking in adequate B vitamins (being a plant based protein, although a rich protein itself), a few other micronutrients and the biggest missing nutrient was Vit.C. Our first trial was peaches, for the Vit.C. Before we took away food at 7mo., peaches were something he enjoyed. Thankfully he passed peaches but he wasn't always eating enough of them for his growing needs. We spend the next year trying to find foods or vitamins that he could tolerate to fill in the gaps that the homemade formula had. He continued to grow and gain weight and develop well; but with repeated reactions and intestinal damage (from us having to push through food trials to find him more nutrients); often malabsorbing following a reaction, he struggled to maintain above the line. We challenged soy at 18mo. in hopes to give him a formula (Ross Carbohydrate Free - RCF- is a non-corn syrup base formula) but that was a terrible fail resulting in villi damage to his intestines such that he lost weight and protein stores quickly, an endoscopy revealed the villous atrophy and TPN (IV nutrition) was promptly started. That was over a year ago. He stayed on TPN for 5weeks and healed his intestines. We challenged a vitamin, probiotics, more varied foods, and he continued to have symptoms that would not allow us to continue giving him the foods - how do you keep giving a child with severe anemia foods that cause blood in the stool? How do you keep giving a child a food he refuses to eat because it is causing so much pain and disruption to his quality of life? How do you give a child a food that makes him vomit? We don't, we can't....symptoms like these are too hard to push through with his fragile system. But surely there is more foods his body will accept? Something must be out there?
In the spring, a cross contamination reaction while we are out of town scares him from eating his peaches and within 4mo. he develops full scurvy, which seemed to come on very suddenly in conjunction with a trial of a new probiotic strains. That was this past summer. That was when it was decided to stop searching for foods to fill in his nutrients and to give his gut a rest, his body a time to catch up on growth, and a PICC line was again inserted for more TPN (IV nutrition).
Now, 6months after TPN was started, and after catch up growth and gut rest- his risk of line infection/sepsis remains high, as well as the risk of the damage to his kidney's and liver, and his gut is not healed- repeated follow up endoscopies reveal continued villi damage, and even though he had adequate weight gain, he has stopped gaining weight, again. The discussion is that TPN is no longer worth the risks and not meeting his needs. We must do something different.
So, we decide on Alimentum RTF and we decide now is the time.
Hydrolysate formula's are considered hypoallergenic because they are a broken down proteins, broken down enough so that many (most) allergic people can tolerate them (dependent on the severity of the allergy) they are typically the first stop before proceeding to an elemental formula when allergies are presenting in an infant.
So, why haven't we used it before? Little man's dairy allergy was severe and sensitive, and he reacted to Nutramagin tried two separate times. Once we discovered he had a corn allergy, we wondered if he had reacted to the corn in the formula or the dairy (casein hydrolsate) but after speaking to the allergist who diagnosed him, he felt his symptoms with dairy and soy- through breastmilk and other formula's indicated he had both Milk/Soy FPIES and solid food (grains) FPIES and we needed to avoid dairy for the time being. There was no weighted need to risk making him sick when we knew small exposures of dairy resulted in vomiting and diarrhea. Once we had him on elemental formula only for 5mo. with no improvement (and worsening) of symptoms, our suspicions of the corn allergy were confirmed and I began to come up with a homemade formula. I used tapioca starch as the carbohydrate/syrup base and this resulted in a myriad of symptoms which ended in dumping diarrhea that dehydrated him and landed him in the hospital for metabolic acidosis. Alimentum RTF was not an option for more reason than one.
So, I began making him a homemade formula, with hemp milk and hemp protein as the base and safflower oil for added fats and arrowroot starch for just enough carbohydrate source. But it was lacking in adequate B vitamins (being a plant based protein, although a rich protein itself), a few other micronutrients and the biggest missing nutrient was Vit.C. Our first trial was peaches, for the Vit.C. Before we took away food at 7mo., peaches were something he enjoyed. Thankfully he passed peaches but he wasn't always eating enough of them for his growing needs. We spend the next year trying to find foods or vitamins that he could tolerate to fill in the gaps that the homemade formula had. He continued to grow and gain weight and develop well; but with repeated reactions and intestinal damage (from us having to push through food trials to find him more nutrients); often malabsorbing following a reaction, he struggled to maintain above the line. We challenged soy at 18mo. in hopes to give him a formula (Ross Carbohydrate Free - RCF- is a non-corn syrup base formula) but that was a terrible fail resulting in villi damage to his intestines such that he lost weight and protein stores quickly, an endoscopy revealed the villous atrophy and TPN (IV nutrition) was promptly started. That was over a year ago. He stayed on TPN for 5weeks and healed his intestines. We challenged a vitamin, probiotics, more varied foods, and he continued to have symptoms that would not allow us to continue giving him the foods - how do you keep giving a child with severe anemia foods that cause blood in the stool? How do you keep giving a child a food he refuses to eat because it is causing so much pain and disruption to his quality of life? How do you give a child a food that makes him vomit? We don't, we can't....symptoms like these are too hard to push through with his fragile system. But surely there is more foods his body will accept? Something must be out there?
In the spring, a cross contamination reaction while we are out of town scares him from eating his peaches and within 4mo. he develops full scurvy, which seemed to come on very suddenly in conjunction with a trial of a new probiotic strains. That was this past summer. That was when it was decided to stop searching for foods to fill in his nutrients and to give his gut a rest, his body a time to catch up on growth, and a PICC line was again inserted for more TPN (IV nutrition).
Now, 6months after TPN was started, and after catch up growth and gut rest- his risk of line infection/sepsis remains high, as well as the risk of the damage to his kidney's and liver, and his gut is not healed- repeated follow up endoscopies reveal continued villi damage, and even though he had adequate weight gain, he has stopped gaining weight, again. The discussion is that TPN is no longer worth the risks and not meeting his needs. We must do something different.
So, we decide on Alimentum RTF and we decide now is the time.
Saturday, January 22, 2011
Is a Corn Allergy for real?
Corn is an ever growing allergy in the United States. I, myself, never fully understood it and surely had never met someone allergic to it. That is until my Little Man was not tolerating things like Tylenol and having violent reactions to formula's and reflux medications that I even began to look into the very real possibility of a corn allergy. When you first come across it, trying to absorb everything that a corn allergy entails in our everyday lives - in our food supply, it is overwhelming.
When a mom on a corn-free babies board I visit said, "Corn allergy seems to be a pretty big nightmare but to me, it is much better to know and be able to manage than to feel like I am missing something and my baby is suffering for it."....I felt like nothing can sum it up better.
Recently, an article has gotten some wheels spinning for me (and other corn allergy sufferers). As if a corn allergy isn't very real, or that it is not important....that those suffering from it simply need to just deal with it- for the sake of the economy? That is the message I received from this article: Allergies: nothing to sneeze at.
Now, I am not one to think the world has to change to accommodate my needs, my son's allergies. What I would like though is: 1). acknowledgment that a corn allergy is very real. 2). awareness that corn is in everything (don't worry about keeping track- I will do that) and 3. DISCLOSE and LABEL that corn is in your product....and the VERY least - when I call your company to ask about the source of an ingredient, please do not tell me "I don't know where it is from, it's just not from corn"....if you don't know where it is from- it is probably from corn. It can be refined, processed, fermented, proteins removed and my son will still react to it.....so I need to know. I do not hold anyone else responsible for his allergy, but I need to know because I am.
When a mom on a corn-free babies board I visit said, "Corn allergy seems to be a pretty big nightmare but to me, it is much better to know and be able to manage than to feel like I am missing something and my baby is suffering for it."....I felt like nothing can sum it up better.
Recently, an article has gotten some wheels spinning for me (and other corn allergy sufferers). As if a corn allergy isn't very real, or that it is not important....that those suffering from it simply need to just deal with it- for the sake of the economy? That is the message I received from this article: Allergies: nothing to sneeze at.
Now, I am not one to think the world has to change to accommodate my needs, my son's allergies. What I would like though is: 1). acknowledgment that a corn allergy is very real. 2). awareness that corn is in everything (don't worry about keeping track- I will do that) and 3. DISCLOSE and LABEL that corn is in your product....and the VERY least - when I call your company to ask about the source of an ingredient, please do not tell me "I don't know where it is from, it's just not from corn"....if you don't know where it is from- it is probably from corn. It can be refined, processed, fermented, proteins removed and my son will still react to it.....so I need to know. I do not hold anyone else responsible for his allergy, but I need to know because I am.
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