Ok, so there has to be something positve about being in the hospital.
stay
Little man is back in the hospital. We hope it will be a short stay but his hemoglobin/hemotacrit have dropped to low. He may need a transfusion. For tonight, they are holding and monitoring and will decide more in the morning. He has had a low iron ever since we started checking it but recently dipped too low, and now has dipped below ok.
Not much time for a long update. Will update more tomorrow when I have a computer.
Monday, September 13, 2010
Friday, September 10, 2010
In hospital food trial.....postponed
I didn't even get a chance to blog about it and we've already had to postpone it!
GI appt was on Wednesday. GI doctor agreed with us that we were ready for a food trial, we've already discussed first foods to be in-hosptial trials. Little mans' reactions have been long-drawn out and make him very,very chronically ill for weeks. The doctors want to do what they can to learn about what a food pass or food fail looks like and learn what they can do to help his recovery. They will monitor labs, symptoms, diapers, intakes, and weights, and anything else that comes up.
Wednesday was a busy long day. 2nd day of school for 2 older boys and Little Man's appt in the middle of the day. We finally got his compounded Iron supplement, that we had compounded with Vit.C as well. Vit.C will help his body absorb the iron (in the supplement and in the hemp milk). I was so excited to give it to him, I got home and immediately mixed it up for him- a small syringe full of rust went into this mouth....and then I realized I didn't get clarification on the Vit.C origins!! I called the pharmacy and they assured me it was corn free. I breathed relief. My baby boy was going to get the iron his body so needed. He spent a lot of time napping that afternoon and evening but thought it was from the long and busy day. I worked the Thursday (the next day) but gave him his iron supplement before I went to work. A call from hubby later that day revealed Little Man had already taken a few short naps. One could hope this means his body is just getting the rest it needs, but my radar went up- what is going on with that? I get home from work and he is whiny but he's been whiny- he's been cutting his bottom 1yr molars so have had to write off his whining to this. But could it be from the Iron/Vit.C or is it from the protein powder that has sunflower seed derived Vit.E? Adding anything....Any.Little.Thing. to his diet always has to be a "trial". He's had the protein powder in large enough quantities- we would think we'd have seen more build symptoms by now but I will worry about this for another few weeks probably. Maybe I should just trial sunflowers to be sure?
Last night, Little man went to bed but was awake screaming twice before I even fully went to sleep. Thankfully, little man's daddy wasn't working today so he was up with him rocking and comforting him. After those two times, he wasn't awake again until morning so again- tried to think it was "just" teething or random awakenings. That is until I opened his bedroom door that morning to his cries in his room....and that smell is un-mistakable, the rotten smell of what we now coin as "reaction poop". Mucous, slimy, liquid full diaper reveals he is reacting to something. Is it the Vit.C? Did the pharmacy check close enough to be sure,sure,sure it is not from corn? Is it a build from the sunflower?
I called the pharmacy, they did some checking and the Vit.C (ascorbic acid) they used indeed does not come from corn but we were surprised to find out it does come from tapioca! Tapioca? I had read that as a possible source but I thought, what are the odds? Well, had he not had such a violent dumping diarrhea reaction from tapioca (what led up to landing him in the hospital last month). We still aren't sure tapioca was a FPIES "trigger" (no violent vomiting) but either way, his body did not tolerate it- and caused him to be very,very,very sick. So, tapioca in his Vit.C/Iron supplement would not be ideal for him. I am not sure where he will get Vit.C from, will need to find a fruit he can tolerate shortly after lamb. Ugh- sure wish I could just feed my son food....
So, we have postponed his hospital lamb trial- pushed it back a few days and if we don't see resolution of diaper symptoms (or if he has weight loss or blood in stools)- we'll push it back further. It is a BIG disappointment of a day....the emotions become difficult to contain when a food is failing my son; when a supplement made specifically for him that his little body needs fails as well, the load gets heavy to carry. How much can one little boy take? We were so ready for some things to start/continue going well. There are other plans...everything happens for a reason.
Stay tuned for food trial news...
GI appt was on Wednesday. GI doctor agreed with us that we were ready for a food trial, we've already discussed first foods to be in-hosptial trials. Little mans' reactions have been long-drawn out and make him very,very chronically ill for weeks. The doctors want to do what they can to learn about what a food pass or food fail looks like and learn what they can do to help his recovery. They will monitor labs, symptoms, diapers, intakes, and weights, and anything else that comes up.
Wednesday was a busy long day. 2nd day of school for 2 older boys and Little Man's appt in the middle of the day. We finally got his compounded Iron supplement, that we had compounded with Vit.C as well. Vit.C will help his body absorb the iron (in the supplement and in the hemp milk). I was so excited to give it to him, I got home and immediately mixed it up for him- a small syringe full of rust went into this mouth....and then I realized I didn't get clarification on the Vit.C origins!! I called the pharmacy and they assured me it was corn free. I breathed relief. My baby boy was going to get the iron his body so needed. He spent a lot of time napping that afternoon and evening but thought it was from the long and busy day. I worked the Thursday (the next day) but gave him his iron supplement before I went to work. A call from hubby later that day revealed Little Man had already taken a few short naps. One could hope this means his body is just getting the rest it needs, but my radar went up- what is going on with that? I get home from work and he is whiny but he's been whiny- he's been cutting his bottom 1yr molars so have had to write off his whining to this. But could it be from the Iron/Vit.C or is it from the protein powder that has sunflower seed derived Vit.E? Adding anything....Any.Little.Thing. to his diet always has to be a "trial". He's had the protein powder in large enough quantities- we would think we'd have seen more build symptoms by now but I will worry about this for another few weeks probably. Maybe I should just trial sunflowers to be sure?
Last night, Little man went to bed but was awake screaming twice before I even fully went to sleep. Thankfully, little man's daddy wasn't working today so he was up with him rocking and comforting him. After those two times, he wasn't awake again until morning so again- tried to think it was "just" teething or random awakenings. That is until I opened his bedroom door that morning to his cries in his room....and that smell is un-mistakable, the rotten smell of what we now coin as "reaction poop". Mucous, slimy, liquid full diaper reveals he is reacting to something. Is it the Vit.C? Did the pharmacy check close enough to be sure,sure,sure it is not from corn? Is it a build from the sunflower?
I called the pharmacy, they did some checking and the Vit.C (ascorbic acid) they used indeed does not come from corn but we were surprised to find out it does come from tapioca! Tapioca? I had read that as a possible source but I thought, what are the odds? Well, had he not had such a violent dumping diarrhea reaction from tapioca (what led up to landing him in the hospital last month). We still aren't sure tapioca was a FPIES "trigger" (no violent vomiting) but either way, his body did not tolerate it- and caused him to be very,very,very sick. So, tapioca in his Vit.C/Iron supplement would not be ideal for him. I am not sure where he will get Vit.C from, will need to find a fruit he can tolerate shortly after lamb. Ugh- sure wish I could just feed my son food....
So, we have postponed his hospital lamb trial- pushed it back a few days and if we don't see resolution of diaper symptoms (or if he has weight loss or blood in stools)- we'll push it back further. It is a BIG disappointment of a day....the emotions become difficult to contain when a food is failing my son; when a supplement made specifically for him that his little body needs fails as well, the load gets heavy to carry. How much can one little boy take? We were so ready for some things to start/continue going well. There are other plans...everything happens for a reason.
Stay tuned for food trial news...
FPIES = Feeling Powerless In Every Sense.....
"FPIES really stands for Feeling Powerless In Every Sense". The credit given to this quote is to another FPIES mom, who allowed me to "borrow" it for this post.
How can you feel empowered in any sense when everything normal you know is ripped out from underneath you from something as simple as feeding your baby the simplest things: rice, oats, formula, soy (in everything!), corn (again, in everything!), the list grows and grows and all triggers are unknown -- until you feed them to your child.
FPIES reactions vary in severity, just as a typical food allergy can vary in severity. In a typical food allergy (that most are more familiar with) - one child allergic to peanuts has to avoid foods that contain peanuts because it causes hives, or some mouth itching; another child goes into anaphylatic shock from any exposure of peanut residue. FPIES allergy is the same. One child can go into vomiting/diarrhea/hypotensive induced shock hours after minimal ingestion, and another will cascade down a myriad of symptoms for days before the body gives a full rejection (violent vomiting and shock symptoms) of the offending protein. With FPIES, there is yet to be a way of knowing what foods will cause this reaction. You have to feed your child food that may end up being poison in their bodies. You have to make your child sick to find food for them to eat and sustain on. How does such an awful thing even exist? The underlying stress this puts on a parents shoulders should never be underestimated. The roller coaster ride of emotions can be quite overwhelming. And yet, most of us are walking around without adequate support when we need it most....when our little one's are sick.
FPIES triggers are everywhere. Kids put everything in their mouths, so not even bath soap is safe. Paper has soy and corn. Crayons, paints and crafts have wheat, soy, corn. Baby food is contaminated with dairy, soy, rice. Medications have soy, dairy, corn, additives, colors, in them. Your child is in pain and you can't even give him a medication to take away that pain, you can't do anything to help with the pain but wait for it to pass. Your only consolation? They are too little to even understand, they are also too little to know the difference. What kind of a consolation is that? Think of when you had a stomach flu, or a hangover, or food poisoning, or if you know anyone who has Crohn's Disease or Ulcerative Colitis- ask them how much pain they go through. I imagine these things are close to how it must feel for an FPIES child. But, what can a parent do about it?
What do you do when your child is sick and their symptoms puzzle you or you don't know how to make them better? You take them to the doctor. What do you do when your FPIES child is sick and the doctors don't understand it? You are forced to deal with it on your own. Looking for support from the medical community that knows very little about this rare illness and not finding it, only makes the load heavier. You carry this load every day; some days it is heavier than others (days of reacting, days recovering from reactions, ER visits, doctors offices where you are not heard); but you keep on carrying the heavy-heavy load. I accept my load, he is my child. I am not asking for anyone to take away his FPIES.....just asking for a little bit of support.
We, the FPIES moms in the trenches can continue to make a difference. Continue to work on being heard and raising awareness. if not for our children- for the children following us.
More research is needed, better protocols for how to even begin to help these family's. Help doesn't come in the way of a "cure", many FPIES kids outgrow this by the time they are 4-5yrs old, we are fortunate enough that our children have a diagnosis that has (in the words of another FPIES mommy)"a light at the end of the tunnel, it's just a really long tunnel!". We know (we hold on the hope) our children will not have this forever and we know one day we can look back on it under a different light but that doesn't take away from how tough it is RIGHT now. Help comes in the form of symptom relief and support for the family behind the FPIES child.
Support is one of the biggest "treatements" of this beast diagnosis. And yet, so many of us struggle to find it. This is a chronic illness of a baby/a young child. Their needs are 100% on the parents, a simple "how are you doing" in the beginning of a appointment would go a million miles for me. A reassurance that even though my child doesn't have a test that can 'read' his symptoms- that someone believes and trusts me because they are listening and care about my child, that even though there is little know about this diagnosis- they are willing to learn; to learn so they can help the next time he is sick.
Support is needed, for the family of a child with a chronic illness, and to make sure the family is being HEARD. Coordinated care is essential. Coordinated care -between GI, Allergy, Nutrition, and Pediatrician. Also coordinated care between in-patient and out-patient doctors because we all know hospitalization happens for these kiddos.
Bottom line to how to empower a parent with a child with FPIES? A willingness to learn and to listen to the parents.
How can you feel empowered in any sense when everything normal you know is ripped out from underneath you from something as simple as feeding your baby the simplest things: rice, oats, formula, soy (in everything!), corn (again, in everything!), the list grows and grows and all triggers are unknown -- until you feed them to your child.
FPIES reactions vary in severity, just as a typical food allergy can vary in severity. In a typical food allergy (that most are more familiar with) - one child allergic to peanuts has to avoid foods that contain peanuts because it causes hives, or some mouth itching; another child goes into anaphylatic shock from any exposure of peanut residue. FPIES allergy is the same. One child can go into vomiting/diarrhea/hypotensive induced shock hours after minimal ingestion, and another will cascade down a myriad of symptoms for days before the body gives a full rejection (violent vomiting and shock symptoms) of the offending protein. With FPIES, there is yet to be a way of knowing what foods will cause this reaction. You have to feed your child food that may end up being poison in their bodies. You have to make your child sick to find food for them to eat and sustain on. How does such an awful thing even exist? The underlying stress this puts on a parents shoulders should never be underestimated. The roller coaster ride of emotions can be quite overwhelming. And yet, most of us are walking around without adequate support when we need it most....when our little one's are sick.
FPIES triggers are everywhere. Kids put everything in their mouths, so not even bath soap is safe. Paper has soy and corn. Crayons, paints and crafts have wheat, soy, corn. Baby food is contaminated with dairy, soy, rice. Medications have soy, dairy, corn, additives, colors, in them. Your child is in pain and you can't even give him a medication to take away that pain, you can't do anything to help with the pain but wait for it to pass. Your only consolation? They are too little to even understand, they are also too little to know the difference. What kind of a consolation is that? Think of when you had a stomach flu, or a hangover, or food poisoning, or if you know anyone who has Crohn's Disease or Ulcerative Colitis- ask them how much pain they go through. I imagine these things are close to how it must feel for an FPIES child. But, what can a parent do about it?
What do you do when your child is sick and their symptoms puzzle you or you don't know how to make them better? You take them to the doctor. What do you do when your FPIES child is sick and the doctors don't understand it? You are forced to deal with it on your own. Looking for support from the medical community that knows very little about this rare illness and not finding it, only makes the load heavier. You carry this load every day; some days it is heavier than others (days of reacting, days recovering from reactions, ER visits, doctors offices where you are not heard); but you keep on carrying the heavy-heavy load. I accept my load, he is my child. I am not asking for anyone to take away his FPIES.....just asking for a little bit of support.
We, the FPIES moms in the trenches can continue to make a difference. Continue to work on being heard and raising awareness. if not for our children- for the children following us.
More research is needed, better protocols for how to even begin to help these family's. Help doesn't come in the way of a "cure", many FPIES kids outgrow this by the time they are 4-5yrs old, we are fortunate enough that our children have a diagnosis that has (in the words of another FPIES mommy)"a light at the end of the tunnel, it's just a really long tunnel!". We know (we hold on the hope) our children will not have this forever and we know one day we can look back on it under a different light but that doesn't take away from how tough it is RIGHT now. Help comes in the form of symptom relief and support for the family behind the FPIES child.
Support is one of the biggest "treatements" of this beast diagnosis. And yet, so many of us struggle to find it. This is a chronic illness of a baby/a young child. Their needs are 100% on the parents, a simple "how are you doing" in the beginning of a appointment would go a million miles for me. A reassurance that even though my child doesn't have a test that can 'read' his symptoms- that someone believes and trusts me because they are listening and care about my child, that even though there is little know about this diagnosis- they are willing to learn; to learn so they can help the next time he is sick.
Support is needed, for the family of a child with a chronic illness, and to make sure the family is being HEARD. Coordinated care is essential. Coordinated care -between GI, Allergy, Nutrition, and Pediatrician. Also coordinated care between in-patient and out-patient doctors because we all know hospitalization happens for these kiddos.
Bottom line to how to empower a parent with a child with FPIES? A willingness to learn and to listen to the parents.
Monday, September 6, 2010
Pausing...
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Stop to smell the er, flowers....
Little man is enjoying his "new" quality of life - ie a baseline. He still has a chronic illness, that hasn't changed. We still have to be very viligent about his diet, his growth, his illness. But, for now- we can smell the roses a bit.
Today, I start to get a little anxious. We are ready for a food trial, we believe little man is ready too. His new formula is optimized and he is growing and maintaining well on it. I play small tweaks to it to be sure I have it at the most palatable for him. His teething this week has played into his readiness to accept his formula. But it also reminds us that we need to get him a safe diet- this will help ensure his nutrition for the next few years. A formula diet will sustain him but what if he stops drinking it, or doesn't drink enough? What then? Tube feedings are options for that kind of situation and in fact was the "normal treatment" for FPIES only a few short years ago; and remains a best case option for those with many triggers to provide for the nutrition needed for proper growth and development. We are grateful Little Man hasn't needed this, but we are by no means out of the woods.
This week, I am often reminded of how sick our little ones with this diagnosis can get....from a mom whose daughter is looking at getting a G-tube placed this week, to another mom whose son is hospitalized after a food fail and very, very sick, to yet another mom who watches and waits as a food fail affects her little girl for the entire week last week.
There is a shared connection, a bond that ties all of us FPIES mommy's - when one of our kids is sick, we all feel it. We know, we've been where they are at.
I'm scared. I'm scared to press on with food trials with the possibility of Little Man getting sick again. I'm scared of not doing food trial and not giving him a diet to expand his nutrition and practice his oral-motor skills and avoid years of feeding therapy. I'm scared Little Man won't be able to enjoy a snack much less a meal with his brothers- something he so wants to join in on, more and more everyday. I am scared he will get so, so sick. I'm scared the doctors here won't know how to treat him if/when he does get sick, I'm scared we'll get blamed for making him sick when we will already be struggling with being the ones to choose which foods and to give him that food.
We have the lamb, we purchased it from an organic farmer whose animals graze on grass (no soy or corn fed meat for our little man). We won't be doing it this week- our schedules are full. We see our GI doctor again on Wednesday. We will discuss doing his lamb trial next week with her. I'm not sure if she will agree he is ready but we are. GI has discussed us doing this as an in-hospital trial. So, we'll see what we discuss and decide this week for those plans.
We're as ready as we can be. We can't stand still, we do not want to go backwards so I always say moving forward is the only direction that makes sense...and the only direction I want to go. We won't know until we try.
So, in the meantime- we will have a busy week with school starting, working 3days this week (I am part-time so a 3day work week is a full week to me!), and just all the other busy-ness of a family just trying to get by and make ends meet.
We will do our best to continue to smell the roses before we take these next steps. Next steps that could either give Little Man his first official safe food, or make him sick and set him back once again....
Sunday, September 5, 2010
Never Alone....
A relationship you have with your siblings will be your longest relationship in your life. I truly believe one of the best things my parents gave me is my siblings. I hope our boys feel the same way about each other as they grow.
I have 4 brothers and 2 sisters. They mean the world to me, and I know they would move mountains for me if I needed them to. My sister's have been invaluable to me through this last year. My youngest sister A.(almost 14yrs separate us!) came to live with us this winter/spring when things were so very rough with Little Man that I was barely keeping up. The morning she arrived, she did more in 3hrs. than I had been able to do in 3 weeks- laundry, dishes, games with the big boys. Taking care of little man had become a full time job. Right before his first hospital admission, his daddy and I had both been calling in sick to work because it took both of us to care for the boys throughout the day because little man was so sick and in constant pain. A. stayed with us for 3mo. and it was a gift. My other sister K. has been available, almost at the drop of a hat....she lives closer and visits often (never often enough though!) ;)
It is our hope that our boys always have the strong bonds they are forming now and carry with them, for each other, for life. Our eldest struggled with Little Man crying episodes, when the "colic" started at 2 1/2mo. old - he wanted to help so badly; he is a responsible leader. Our second son cringes at the thought of Little Man getting his blood drawn, an IV placed, even a blood pressure check makes him hurt for him- he has a sense for other people like no other, he is a protector. Our third son is too young to fully understand what is going on, and has started feeling the pangs of jealousy as this journey goes on and on and on; but he has been so patient- so loving.
Their bonds will be stronger than they would have been had Little Man not gotten so sick.
With Little Man's illness, we have had to strengthen from deep within, a strength that could only come from Above - to perservere through the many days of crying and crying with nothing to do, nothing to stop his pain, no direction to go in, trapped. It has been a very, very difficult year and I will never forget the long days and nights. But I am not one to dwell on such things for long and choose instead to focus on our blessings.
We celebrate a year, Little Man's 1st year, a year to a diagnosis. We celebrate the gifts Little Man has given us....patience, perseverance, advocacy, empathy, love, knowledge, faith, closeness, trust, blessings, support, strength...
Faith, Family, Friends....
Never Alone....
I have 4 brothers and 2 sisters. They mean the world to me, and I know they would move mountains for me if I needed them to. My sister's have been invaluable to me through this last year. My youngest sister A.(almost 14yrs separate us!) came to live with us this winter/spring when things were so very rough with Little Man that I was barely keeping up. The morning she arrived, she did more in 3hrs. than I had been able to do in 3 weeks- laundry, dishes, games with the big boys. Taking care of little man had become a full time job. Right before his first hospital admission, his daddy and I had both been calling in sick to work because it took both of us to care for the boys throughout the day because little man was so sick and in constant pain. A. stayed with us for 3mo. and it was a gift. My other sister K. has been available, almost at the drop of a hat....she lives closer and visits often (never often enough though!) ;)
It is our hope that our boys always have the strong bonds they are forming now and carry with them, for each other, for life. Our eldest struggled with Little Man crying episodes, when the "colic" started at 2 1/2mo. old - he wanted to help so badly; he is a responsible leader. Our second son cringes at the thought of Little Man getting his blood drawn, an IV placed, even a blood pressure check makes him hurt for him- he has a sense for other people like no other, he is a protector. Our third son is too young to fully understand what is going on, and has started feeling the pangs of jealousy as this journey goes on and on and on; but he has been so patient- so loving.
Their bonds will be stronger than they would have been had Little Man not gotten so sick.
With Little Man's illness, we have had to strengthen from deep within, a strength that could only come from Above - to perservere through the many days of crying and crying with nothing to do, nothing to stop his pain, no direction to go in, trapped. It has been a very, very difficult year and I will never forget the long days and nights. But I am not one to dwell on such things for long and choose instead to focus on our blessings.
We celebrate a year, Little Man's 1st year, a year to a diagnosis. We celebrate the gifts Little Man has given us....patience, perseverance, advocacy, empathy, love, knowledge, faith, closeness, trust, blessings, support, strength...
Faith, Family, Friends....
Never Alone....
Saturday, September 4, 2010
Teething, Colds, and FPIES....Oh My!
Little Man is working on his 1yr bottom molars. I know that for sure now, the right side has "tipped" through and the left side is red and inflamed. He has been fussy off and on and decreased appetite for the past ~2weeks. I can tell it is a different kind of fussy, he is consolable, it isn't screaming from the pit of his stomach, and his compounded ibuprofen helps a lot. But I still worry when he is fussy or in pain, my mind still goes back to all those days of constant tummy pains. Especially tonight when he spit up. He didn't vomit, he didn't throw up violently, but he hasn't even spit up in 2mo. So, I worry - just a little....
As I mentioned in my post yesterday, he also has a bit of a viral bug. Judging by how it is affecting other members of the family - it is making him feel just a bit icky-achy and off sorts...and actually he is coping with it better than his 3yr.old older brother! But, again, I still worry when he is "off" his baseline. Yep, I said BASELINE!! It is like a beautiful symphony - a baseline for an FPIES child with multiple intolerances/triggers is a difficult thing to come by. Making a formula he can thrive on when one of those triggers is clearly corn is the next difficult thing.....but we're finding it, and I'm doing it. I have optimized his formula well for calories, protein, fats and all the carbohydrates he can tolerate for a 14mo. old --although he is essentially a 14mo. old on a Vegetarian diet. It can be done. And it can be optimized by an Iron supplement made with Vit.C, which we will get on Tuesday! The hospital pharmacy here has the Iron and Vit.C powder and will compound him a supplement, that "will taste like rust" and it will be ready on Tuesday.
His weights are stable, he has not had blood in his stool for the past 2 weeks check, his tummy pain is gone, his diapers are "normal" and consistent, he is content, his lab check this week revealed his hemoglobin/hematocrit is holding steady (the minimum we were looking for- for it to not be dropping) and it will rise with the addition of the compounded iron this week, and some REALLY good news (for me!) is that his other labs are all picking up -- on my homemade formula.
When we first went to the pediatrician for help with Little Man's "issues", we got some initial lab work done at around 7mo.old. I had requested a Vit.D level to be done. There is much emerging research that is showing that many people are low on their Vit.D and even deficient- these low levels can have many varying affects on a body- especially a growing body of a baby. We were all a little shocked to find his levels VERY low, well past low cut-off for his age range. We immediately started him on a supplement and they climbed nicely. We had to stop that supplement because, despite it helping his Vit.D levels- I suspected it was giving him tummy aches (later learned I was right as there is corn based ingredients in it). Another check a few months ago (right before going to CHOP) revealed his Vit.D (and iron) were dropping again. Another indicator to me that despite exclusive elemental formula diet- little man was continuing to have intestinal inflammation. A recent check of Vit.D revealed it was climbing again- all on it's own. Sunlight? Hemp milk?
Another lab that we were alarmed was low was his Pre-Albumin. Pre-Albumin is a marker for protein status in the body. This lab was also below the cut off for low normal. It told me he either was not getting enough protein (breast milk), or that his inflammation was impeding him from absorbing it; or a combination of the two. We later confirmed he was indeed still reacting to components in my breastmilk even after giving up dairy/soy, and wheat; we now know he was reacting to rice and corn that I was eating in larger quantities to make up for the no wheat. The lab value for pre-albumin this week? Within normal limits!! Within the range of normal!! Hemp milk and decreased inflammation and his body is getting and utilizing adequate amounts of good protein for the first time in probably a year!!
We are not out of the woods yet, but each day we get closer and closer to winning this war- to successfully navigating these murky waters of our FPIES world.
As I mentioned in my post yesterday, he also has a bit of a viral bug. Judging by how it is affecting other members of the family - it is making him feel just a bit icky-achy and off sorts...and actually he is coping with it better than his 3yr.old older brother! But, again, I still worry when he is "off" his baseline. Yep, I said BASELINE!! It is like a beautiful symphony - a baseline for an FPIES child with multiple intolerances/triggers is a difficult thing to come by. Making a formula he can thrive on when one of those triggers is clearly corn is the next difficult thing.....but we're finding it, and I'm doing it. I have optimized his formula well for calories, protein, fats and all the carbohydrates he can tolerate for a 14mo. old --although he is essentially a 14mo. old on a Vegetarian diet. It can be done. And it can be optimized by an Iron supplement made with Vit.C, which we will get on Tuesday! The hospital pharmacy here has the Iron and Vit.C powder and will compound him a supplement, that "will taste like rust" and it will be ready on Tuesday.
His weights are stable, he has not had blood in his stool for the past 2 weeks check, his tummy pain is gone, his diapers are "normal" and consistent, he is content, his lab check this week revealed his hemoglobin/hematocrit is holding steady (the minimum we were looking for- for it to not be dropping) and it will rise with the addition of the compounded iron this week, and some REALLY good news (for me!) is that his other labs are all picking up -- on my homemade formula.
When we first went to the pediatrician for help with Little Man's "issues", we got some initial lab work done at around 7mo.old. I had requested a Vit.D level to be done. There is much emerging research that is showing that many people are low on their Vit.D and even deficient- these low levels can have many varying affects on a body- especially a growing body of a baby. We were all a little shocked to find his levels VERY low, well past low cut-off for his age range. We immediately started him on a supplement and they climbed nicely. We had to stop that supplement because, despite it helping his Vit.D levels- I suspected it was giving him tummy aches (later learned I was right as there is corn based ingredients in it). Another check a few months ago (right before going to CHOP) revealed his Vit.D (and iron) were dropping again. Another indicator to me that despite exclusive elemental formula diet- little man was continuing to have intestinal inflammation. A recent check of Vit.D revealed it was climbing again- all on it's own. Sunlight? Hemp milk?
Another lab that we were alarmed was low was his Pre-Albumin. Pre-Albumin is a marker for protein status in the body. This lab was also below the cut off for low normal. It told me he either was not getting enough protein (breast milk), or that his inflammation was impeding him from absorbing it; or a combination of the two. We later confirmed he was indeed still reacting to components in my breastmilk even after giving up dairy/soy, and wheat; we now know he was reacting to rice and corn that I was eating in larger quantities to make up for the no wheat. The lab value for pre-albumin this week? Within normal limits!! Within the range of normal!! Hemp milk and decreased inflammation and his body is getting and utilizing adequate amounts of good protein for the first time in probably a year!!
We are not out of the woods yet, but each day we get closer and closer to winning this war- to successfully navigating these murky waters of our FPIES world.
Friday, September 3, 2010
Enjoying days with a baseline and the last days of summer...
Little man has been doing well. It is like we have a new baby, someone we are just getting to know. As his mom, I knew he was there under the mask of pain and tummy upsets but now we get to see more of him and play with him, explore with him, giggle with him....
I have continued to tweak his formula and now have added Hemp high protein powder to his current formula. This bumps up his protein and calories well, it also makes it a bit thicker so I am still playing with the right ratio of ingredients to make it most palatable for him. He has had varied intakes over the past week/week and a half and it always makes me nervous when he doesn't seem interested in his bottle -- especially when we are moving in such a positive direction for him. I am so nervous about him being sick again - not only losing ground but backtracking. I just wish everything could continue to go in this direction all the time.
He has had some 'typical' toddler things this past 2weeks- he is teething his 1yr.molars, tonight I felt a sharp tip on one side so those are close to coming through. Then, we are a sharing family- and that includes the germs and Little man has quickly developed a cough. He was diagnosed with asthma during our consultation at CHOP so we have the usual medication profile for an asthmatic. Except, how do you give an inhaler to a 14mo. old? Well, when he needs it- you give a nebulizer treatment instead. Little man got one last evening because daddy didn't like the way his cough was progressing through the day. The albuterol in the treatment made it difficult for him to sleep last night....well, at least that is what we are hoping it was from. Sleeplessness has been a part of his previous reactions to foods. Is he reacting to something in the Hemp protein? Is it too much protein for him- afterall he does have Food PROTEIN INDUCED enterocolitis - what if I make him intolerant to hemp? What would we do then? Please, please, please - let this just be a cold!!
My updates are few lately- we've been busy!! Busy doing what? ENJOYING our Little Man!!! This little boy is SO full of life, SO happy to be pain free, so loving. He plays nicely on his own, plays great with his brothers- now getting in on the wrestling and games, "asking" them to play, "joking" with them. This is a beautiful thing to watch -- and one of my favorite things as a mom....just to sit back and watch them play....watching from a distance so they don't know I'm watching (and not asking me to referee every 2 seconds) but watching them interact with one another, help one another out, big boys caring for the little boys. It is what fills my tank....so, so, so many months going on "E" - now my cup runneth over and I find myself wondering if I can really believe it, really trust it. When that lingering thought tries to come in, I just dive into some hugs and kisses from Little Man. It's as if he knows- he smoothers me with kisses and comes running up to me and throws his arms around my neck- squeezing in a hug! I can't get enough of that.
His brothers are starting to trust it more too- this is the longest we have seen a baseline, a pain-free and happy/content little boy since he was 2mo. old. They now fight over who gets to be his buddy for the day, who gets to show him this new thing, or teach him that new thing. It warms my heart beyond what words can express. When I can't express the words and I worry about the memories escaping with time, I photograph moments. Here are a few....backyard swing time, popsicles (hempsicles for little man), a trip to the local zoo, and a Eagle attraction center. We've been busy- we've been "normal" family of young children.
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I have continued to tweak his formula and now have added Hemp high protein powder to his current formula. This bumps up his protein and calories well, it also makes it a bit thicker so I am still playing with the right ratio of ingredients to make it most palatable for him. He has had varied intakes over the past week/week and a half and it always makes me nervous when he doesn't seem interested in his bottle -- especially when we are moving in such a positive direction for him. I am so nervous about him being sick again - not only losing ground but backtracking. I just wish everything could continue to go in this direction all the time.
He has had some 'typical' toddler things this past 2weeks- he is teething his 1yr.molars, tonight I felt a sharp tip on one side so those are close to coming through. Then, we are a sharing family- and that includes the germs and Little man has quickly developed a cough. He was diagnosed with asthma during our consultation at CHOP so we have the usual medication profile for an asthmatic. Except, how do you give an inhaler to a 14mo. old? Well, when he needs it- you give a nebulizer treatment instead. Little man got one last evening because daddy didn't like the way his cough was progressing through the day. The albuterol in the treatment made it difficult for him to sleep last night....well, at least that is what we are hoping it was from. Sleeplessness has been a part of his previous reactions to foods. Is he reacting to something in the Hemp protein? Is it too much protein for him- afterall he does have Food PROTEIN INDUCED enterocolitis - what if I make him intolerant to hemp? What would we do then? Please, please, please - let this just be a cold!!
My updates are few lately- we've been busy!! Busy doing what? ENJOYING our Little Man!!! This little boy is SO full of life, SO happy to be pain free, so loving. He plays nicely on his own, plays great with his brothers- now getting in on the wrestling and games, "asking" them to play, "joking" with them. This is a beautiful thing to watch -- and one of my favorite things as a mom....just to sit back and watch them play....watching from a distance so they don't know I'm watching (and not asking me to referee every 2 seconds) but watching them interact with one another, help one another out, big boys caring for the little boys. It is what fills my tank....so, so, so many months going on "E" - now my cup runneth over and I find myself wondering if I can really believe it, really trust it. When that lingering thought tries to come in, I just dive into some hugs and kisses from Little Man. It's as if he knows- he smoothers me with kisses and comes running up to me and throws his arms around my neck- squeezing in a hug! I can't get enough of that.
His brothers are starting to trust it more too- this is the longest we have seen a baseline, a pain-free and happy/content little boy since he was 2mo. old. They now fight over who gets to be his buddy for the day, who gets to show him this new thing, or teach him that new thing. It warms my heart beyond what words can express. When I can't express the words and I worry about the memories escaping with time, I photograph moments. Here are a few....backyard swing time, popsicles (hempsicles for little man), a trip to the local zoo, and a Eagle attraction center. We've been busy- we've been "normal" family of young children.
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