Onion has been removed from Ellie's broth for about 4 days now, and we are seeing quick recovery. Her eczema is clearing and she seems to be moving back into the realm of more normal poo. Hooray! But once again we are in the place of 'now what'.
She finally had her feeding evaluation which has given us a few ideas of how to work on getting her to swallow, and so we have focused on getting her at the table with a bowl of water and a spoon, or meatballs, or puree, or zucchini of some nature, in hopes of moving more towards a 'full belly' feeling. She licks food, or feeds me. And says 'mmmmm'. Or pretends to chew. Or eats rocks and paper.
We have worked hard at making the food in the house 'safe' for her. Even though she can not eat it, we are focused on removing things that would actually hurt her (like corn or soy). That way we can spend less time screaming 'stop don't touch that' and more time letting her explore. Luckily we almost always have some sort of meat on the table that she can chew on without worry. Except for chicken, which should be ready for butcher the end of July.
So overall we are moving forward. I suppose. Patience has never been my gifting, and this waiting-for-healing-thing is certainly difficult. (can you hear it in my tone?) Or perhaps it is just this up-twice-a-night-every-night-for-two-years-thing that is wearing me down. Or maybe it was the full vomit reaction she had this weekend after attending a birthday party where she was inadvertently included in a cloud of aerosol sunscreen that was not intended for her, reminding me of how sick she really is. Or.....
I am going to choose to blame it on the fact that it is gloomy and raining on one of these last days of June. And remind myself of this all too familiar scene, which makes me laugh every time. Those people who wake up whistling? They drive me nuts.
Showing posts with label symptoms. Show all posts
Showing posts with label symptoms. Show all posts
Tuesday, June 28, 2011
Monday, June 20, 2011
Celebrations
In the middle of the broth making, meat blending, egg finding, and night waking, it is easy to forget the progress Ellie has made and the celebrations we have in only a few short months time. It has NOT been easy, and the decisions have often been difficult, but we are moving forward. As Ellie nears her second birthday, I start to panic about small things like:
*she still has a pacifier
*she still eats from only a bottle
*she shows no signs of potty training....
And I am often reminded of these things when out in public. Comments such as 'what is in the bottle?', 'are you feeding her coffee?', or indignant 'she still wakes at night?' can catch me off guard. And though my insecurity may be high, my mommy radar often picks up looks when my 22 month old is reclined on my lap drinking a bottle (that is brown) instead of eating finger foods, or I allow her to have her pacifier without a second thought. She looks older than she is which doesn't help. She has always been in the 90+ percentile. So for sanity sake I must stop and force myself to think of how far she has come.
Last year on the morning of her first birthday she was gifted her first rectal scope and biopsy. But in the last few months things have changed. So as she nears her second birthday, here are a few that I do my best to remind myself of often:
- She is no longer on a lab made formula.
- She is showing almost no hypotonia.
- She has advanced in communication skills.
- She no longer reacts topically to many things.
- She has not had a full blown FPIES episode since we started GAPS.
- She is only waking twice a night now.
- She is no longer showing extreme sensory sensitivity and is even touching and putting some foods to her lips.
- She eats REAL FOOD!
And all of these things I must celebrate. They are progress. They are hope.
*she still has a pacifier
*she still eats from only a bottle
*she shows no signs of potty training....
And I am often reminded of these things when out in public. Comments such as 'what is in the bottle?', 'are you feeding her coffee?', or indignant 'she still wakes at night?' can catch me off guard. And though my insecurity may be high, my mommy radar often picks up looks when my 22 month old is reclined on my lap drinking a bottle (that is brown) instead of eating finger foods, or I allow her to have her pacifier without a second thought. She looks older than she is which doesn't help. She has always been in the 90+ percentile. So for sanity sake I must stop and force myself to think of how far she has come.
Last year on the morning of her first birthday she was gifted her first rectal scope and biopsy. But in the last few months things have changed. So as she nears her second birthday, here are a few that I do my best to remind myself of often:
- She is no longer on a lab made formula.
- She is showing almost no hypotonia.
- She has advanced in communication skills.
- She no longer reacts topically to many things.
- She has not had a full blown FPIES episode since we started GAPS.
- She is only waking twice a night now.
- She is no longer showing extreme sensory sensitivity and is even touching and putting some foods to her lips.
- She eats REAL FOOD!
And all of these things I must celebrate. They are progress. They are hope.
Thursday, June 9, 2011
More Than Poo
Did you take a picture of that poo? What did it look like? What do you think of this poo? What was the smell? Did it burn her? Did you file it? Make notes on the fridge. Was there mucous? oooooh the life of FPIES. You get the top half (vomit) and the bottom half (poop). And the joke among moms of PI kids is that we have poop portfolios. We take them to the doctor with us. We compare. We use them to guide food choices for our kids. We become obsessed!
And I am having trouble shaking the obsession. There. I said it! I wait for the poop, I fear for the poop, and when it comes out normal I do a dance! The problem? Poop is a good indicator of a lot, but not the indicator of everything. We have seen no-so-good-poops that have been die off, been a one time thing, and those that have ended in full blown FPIES. The catch seems to be the stage of healing.
We have not seen a full blown FPIES reaction since we started the broth. I believe the reason is because we don't feed her foods that she could react to, and that her intestines have begun to heal. GAPS has taken the science behind food digestion and spelled it out in a path. Jump here - go there- try this, if not then that means try that. If she has trouble because of the fiber or the sugar content of a vegetable, we immediately pull it and know that means she is not ready. The problem is, sometimes things don't give a reaction and that does not mean she is ready for them. This is where the poop test fails me.
For example, a few days ago I let Ellie carry around a larabar. Much later I realized she had been sucking on it open, and who knows for how long. I took it away, and then waited. No reflux. No poop. But she woke up screaming from a nap and then wanted to be held for about an hour. After that, she was on with life. The next poo, no signs of a thing.
Another time she cheeked a few sunflower seeds in the shell, sucking and chewing them to death. No reaction. Not a single thing. And another, she ate a sticker. Nothing.
Before GAPS I would have done a dance and said how exciting that she could tolerate and have a new food and fed her sunflower seeds. Or wondered about the sticker adhesive and if she was doing better with corn. But what I now know is that it has everything to do with the stage of healing she is in, and that she is not ready to eat those things regardless of what her poo or anything else looks like. If she cant tolerate the fiber in onion, she most certainly can not tolerate the tough to digest sunflower seed. But what we can celebrate is that she has healed enough that these small exposures do not send her reeling into a full blown FPIES episode.
The longer Ellie has been on broth, the more amazed we are. Her little intestines were so severely damaged that she has been unable to tolerate any vegetables at all. She can handle boiled and skinned zucchini as long as the seeds are small, because it does not provide too much fiber for her system. Unless we put too much in her bottle, and then we see her struggle to digest it. But that is it. We have not been able to get onion or carrot or other squash in her without problems. And then came the egg yolk. (GAPS protocol states that in severe cases that no vegetables can be tolerated, raw egg yolk should be introduced slowly after doing a sensitivity skin test) Raw egg yolk starting very small, and now up to half a teaspoon in each bottle. Without it she has unhealthy poo, and with it she had her first normal poo that we ever have seen in her whole gosh darn life. Normal poo!
The egg yolk seems to have provided those remaining nutrients to pave the way for healing, just as promised. She enjoys daily or every other day normal looking stools. (yes I did say enjoy!) So next I went back to onion. To be sure that it was the fiber she had trouble with and not the onion itself, I boiled onion into her broth and then strained it out. She did fine with the new onion flavored broth! And now it is time to try something new again. So we move forward. Very slowly. Focused on healing and not re-damaging. Gentle foods, easy to digest foods, and allowing for time.
And I am having trouble shaking the obsession. There. I said it! I wait for the poop, I fear for the poop, and when it comes out normal I do a dance! The problem? Poop is a good indicator of a lot, but not the indicator of everything. We have seen no-so-good-poops that have been die off, been a one time thing, and those that have ended in full blown FPIES. The catch seems to be the stage of healing.
We have not seen a full blown FPIES reaction since we started the broth. I believe the reason is because we don't feed her foods that she could react to, and that her intestines have begun to heal. GAPS has taken the science behind food digestion and spelled it out in a path. Jump here - go there- try this, if not then that means try that. If she has trouble because of the fiber or the sugar content of a vegetable, we immediately pull it and know that means she is not ready. The problem is, sometimes things don't give a reaction and that does not mean she is ready for them. This is where the poop test fails me.
For example, a few days ago I let Ellie carry around a larabar. Much later I realized she had been sucking on it open, and who knows for how long. I took it away, and then waited. No reflux. No poop. But she woke up screaming from a nap and then wanted to be held for about an hour. After that, she was on with life. The next poo, no signs of a thing.
Another time she cheeked a few sunflower seeds in the shell, sucking and chewing them to death. No reaction. Not a single thing. And another, she ate a sticker. Nothing.
Before GAPS I would have done a dance and said how exciting that she could tolerate and have a new food and fed her sunflower seeds. Or wondered about the sticker adhesive and if she was doing better with corn. But what I now know is that it has everything to do with the stage of healing she is in, and that she is not ready to eat those things regardless of what her poo or anything else looks like. If she cant tolerate the fiber in onion, she most certainly can not tolerate the tough to digest sunflower seed. But what we can celebrate is that she has healed enough that these small exposures do not send her reeling into a full blown FPIES episode.
The longer Ellie has been on broth, the more amazed we are. Her little intestines were so severely damaged that she has been unable to tolerate any vegetables at all. She can handle boiled and skinned zucchini as long as the seeds are small, because it does not provide too much fiber for her system. Unless we put too much in her bottle, and then we see her struggle to digest it. But that is it. We have not been able to get onion or carrot or other squash in her without problems. And then came the egg yolk. (GAPS protocol states that in severe cases that no vegetables can be tolerated, raw egg yolk should be introduced slowly after doing a sensitivity skin test) Raw egg yolk starting very small, and now up to half a teaspoon in each bottle. Without it she has unhealthy poo, and with it she had her first normal poo that we ever have seen in her whole gosh darn life. Normal poo!
The egg yolk seems to have provided those remaining nutrients to pave the way for healing, just as promised. She enjoys daily or every other day normal looking stools. (yes I did say enjoy!) So next I went back to onion. To be sure that it was the fiber she had trouble with and not the onion itself, I boiled onion into her broth and then strained it out. She did fine with the new onion flavored broth! And now it is time to try something new again. So we move forward. Very slowly. Focused on healing and not re-damaging. Gentle foods, easy to digest foods, and allowing for time.
Tuesday, April 26, 2011
A Whole New World
Yesterday Ellie performed a most typical toddler task, getting her fingers into our sticker bucket. Here is a picture of what resulted:
For those of you who recognize it, yes it is the sheet of millions of teddy bear heads from Lakeshore. This is quite significant. Why? Because not long ago the corn in the sticker adhesive would have sent Ellie into a full blown FPIES reaction within a matter of minutes or hours. For the first time I did not have to panic. She had no reaction (though I did remove them all immediately).
This is a whole new world for us. This is a sign that her body is healing from the inside out, and confirmation that the formula was keeping her from progressing. And let's not forget the advance in fine motor skills she needed in order to pick each of those little bear heads off of the paper and place them on her leg.
In the last few weeks Ellie has colored with crayons, wrote on her body with markers, played with stickers, and even touched plain old playdough. All with no reaction.
She still has limitations (obviously), and we still must be diligent with what she is exposed to (Bandaids still give her a rash), but this is MOST noteworthy of progress and we are VERY pleased to see her little body begin to take care of itself. All from the inside out.
For those of you who recognize it, yes it is the sheet of millions of teddy bear heads from Lakeshore. This is quite significant. Why? Because not long ago the corn in the sticker adhesive would have sent Ellie into a full blown FPIES reaction within a matter of minutes or hours. For the first time I did not have to panic. She had no reaction (though I did remove them all immediately).
This is a whole new world for us. This is a sign that her body is healing from the inside out, and confirmation that the formula was keeping her from progressing. And let's not forget the advance in fine motor skills she needed in order to pick each of those little bear heads off of the paper and place them on her leg.
In the last few weeks Ellie has colored with crayons, wrote on her body with markers, played with stickers, and even touched plain old playdough. All with no reaction.
She still has limitations (obviously), and we still must be diligent with what she is exposed to (Bandaids still give her a rash), but this is MOST noteworthy of progress and we are VERY pleased to see her little body begin to take care of itself. All from the inside out.
Wednesday, April 20, 2011
Another Crash Course: Sugar Intolerance 101
After finally getting a copy of Ellie's dissacharide test, I realized I had no idea what I was looking at. The nurse had suggested they were concerning and very low, and with no current treating GI doctor I figured I had better get my fanny moving on what these new terms meant. What her test results showed, and what a quick google search along with consulting a few fellow FPIES mamas revealed:
Lactase - 4.8 (below 15 is abnormal, but normal starts at 24.5ish)
Sucrase - 11.6 (below 25 is abnormal, but normal starts at 54.4ish)
Glycoamylase - 0 (I have no idea what is abnormal but am pretty sure ZERO is not normal)
Palatenase - 2.8 (below 5 is abnormal, but normal starts at 11.1ish)
Keeping in mind that lab results always give a wide range that can be considered normal, these results were still extremely low. But what in the world were these things? They are enzymes. Digestive enzymes found in the intestine that split double sugars for proper processing by the body. Without these enzymes Ellie was unable to process these double sugars. So what are these double sugars?
Latase. OK got it. Sucrase. Alright. But glucoamylase? And palatenase? uh..... And since she is the lowest in these two, I really needed to know what they are. Here is what I found, perhaps over simplified, using my non-medical layman jargon:
glucoamylase is STARCH, that leads to proper digestion of maltase
palatenase is isomaltulose, that leads to proper digestion of FRUCTOSE
OK. So now that I knew what they were, I had to find out what this meant. What I quickly discovered was that these deficiencies could be genetic or acquired, and came with a whole list of other names for diagnosis. And they all had very similar symptoms to FPIES. And guess what? The medical community doesn't know anything much about those diagnoses either. What they do know is that the majority of intestinal disorders come with enzyme deficiency to some degree (more on this later).
*sigh* Back to the mommy brain to digest what this means (pun intended).
What I now know:
Ellie has sugar intolerance. Her intestines have virtually no digestive enzymes to break down sugars.
What I needed to know:
How do we get them back?
How does this affect what I feed her?
With almost four weeks until our next 'new patient' GI appointment I started my next medical crash course on digestive enzymes.
Lactase - 4.8 (below 15 is abnormal, but normal starts at 24.5ish)
Sucrase - 11.6 (below 25 is abnormal, but normal starts at 54.4ish)
Glycoamylase - 0 (I have no idea what is abnormal but am pretty sure ZERO is not normal)
Palatenase - 2.8 (below 5 is abnormal, but normal starts at 11.1ish)
Keeping in mind that lab results always give a wide range that can be considered normal, these results were still extremely low. But what in the world were these things? They are enzymes. Digestive enzymes found in the intestine that split double sugars for proper processing by the body. Without these enzymes Ellie was unable to process these double sugars. So what are these double sugars?
Latase. OK got it. Sucrase. Alright. But glucoamylase? And palatenase? uh..... And since she is the lowest in these two, I really needed to know what they are. Here is what I found, perhaps over simplified, using my non-medical layman jargon:
glucoamylase is STARCH, that leads to proper digestion of maltase
palatenase is isomaltulose, that leads to proper digestion of FRUCTOSE
OK. So now that I knew what they were, I had to find out what this meant. What I quickly discovered was that these deficiencies could be genetic or acquired, and came with a whole list of other names for diagnosis. And they all had very similar symptoms to FPIES. And guess what? The medical community doesn't know anything much about those diagnoses either. What they do know is that the majority of intestinal disorders come with enzyme deficiency to some degree (more on this later).
*sigh* Back to the mommy brain to digest what this means (pun intended).
What I now know:
Ellie has sugar intolerance. Her intestines have virtually no digestive enzymes to break down sugars.
What I needed to know:
How do we get them back?
How does this affect what I feed her?
With almost four weeks until our next 'new patient' GI appointment I started my next medical crash course on digestive enzymes.
Saturday, March 26, 2011
First Fail After the Broth
I am calling it quits on carrots. I had a funny feeling from the beginning, but pushed through because I truly wanted these to be a pass for Ellie. But no luck. Constipation can also be a sign of 'allergic' reaction, and after starting carrots the first time Ellie stopped her now regular stool. So I stopped, and then restarted, and this second time it took three days before we were seeing symptoms: ear drainage, raspy nose/chest, eczema flare, urping (wet burps), very fussy nights, and no stool.
The good news is it was a less severe reaction and took much longer to be sure. I believe this to be a sign of FPIES healing. Hooray! The bad news is now that she is on the road to healing, I think this might be one of those foods she may never be able to have. But we will shelve it for now, and come back to it in about 32 months.
The only remaining factor is that we still have not received the test results for sugar intolerance from her biopsy. This test is taking so long! Carrots are extremely high in sugar content, so we will see if those test results shed some light on this fail.
I am hopeful that she will recover quickly, and curious how long it will actually take to do so. Back to zucchini and onions, which is already great progress from where we were a short time ago!
The good news is it was a less severe reaction and took much longer to be sure. I believe this to be a sign of FPIES healing. Hooray! The bad news is now that she is on the road to healing, I think this might be one of those foods she may never be able to have. But we will shelve it for now, and come back to it in about 32 months.
The only remaining factor is that we still have not received the test results for sugar intolerance from her biopsy. This test is taking so long! Carrots are extremely high in sugar content, so we will see if those test results shed some light on this fail.
I am hopeful that she will recover quickly, and curious how long it will actually take to do so. Back to zucchini and onions, which is already great progress from where we were a short time ago!
Thursday, March 17, 2011
Holding My Breath
Today Ellie slept a lot. Yesterday we started carrots. And once again I found myself holding my breath. Is she growing? Is she sleeping better? Is she reacting? Two weeks of great progress and no symptoms. Yet it all comes rushing back like a bad dream. It brings me to a place where I wonder....regardless of the progress we make, or how old she gets, will I ever breathe normally? Or will I forever be at risk for that sudden streak of panic? Those moments where all of the possibilities run their marathon through my head while I remain breathless?
She has made incredible progress over the last few weeks. And then...
Last night she had a routine night time bottle, and coughed. I sat her up for a minute and it stopped.
Tonight she had a routine night time bottle, and then coughed. We got her up for a few minutes and it stopped.
And again it had me holding my breath. Was it something? Probably not. Again I march to the fridge where I keep her spreadsheet and log: coughing.
Holding my breath. Watching for symptoms, signs, problems. Stealing my joy, and robbing me of the blessings we have seen. It pushes me back to my knees. It reminds me that it is not I who makes the world spin, and it is not I that am in control. And forces me to take a deep, slow, deliberate breath.
She has made incredible progress over the last few weeks. And then...
Last night she had a routine night time bottle, and coughed. I sat her up for a minute and it stopped.
Tonight she had a routine night time bottle, and then coughed. We got her up for a few minutes and it stopped.
And again it had me holding my breath. Was it something? Probably not. Again I march to the fridge where I keep her spreadsheet and log: coughing.
Holding my breath. Watching for symptoms, signs, problems. Stealing my joy, and robbing me of the blessings we have seen. It pushes me back to my knees. It reminds me that it is not I who makes the world spin, and it is not I that am in control. And forces me to take a deep, slow, deliberate breath.
Tuesday, March 15, 2011
Our Hope: Where Ellie Stands With Food
At this point we have had good progress with Ellie and the bone broths and boiled meats. We have given her zucchini for three days (boiled, de-seeded and skinned for ease of digestion) and she seems to have tolerated it well. Next steps include boiled onion and carrot.
She is still not eating on her own, and will not let us feed her which means that she is getting it all via the bottle and Vitamix. She will not take a sippy cup or any lidded cup either. I am beginning to think that the referral for Occupational Therapy may be a good idea after all. She also has extremely low muscle tone. Hopefully I can find a state agency to help and support us with that since our insurance does not win awards for being the most helpful and we have already created bills in the thousands.
My hope is that we will be able to provide a stricter daily schedule that gets her into the highchair more regularly, and surrounded by a plastic tarp, since a 19 month old eating like a 6 month old is capable of spreading her damage in a much larger radius.
I will be doing a home patch testing for egg whites and egg yolks this week. I am very hopeful that she will pass, because this would be a fantastic source of nutrition for her.
She is growing, and has thinned down dramatically. But she looks healthy. Her hair is growing! Her constipation is gone. And boy is she hungry! She often eats 18 ounces in one sitting now, and that includes 6 or 7 ounces of meat puree! Exciting stuff.....except it keeps a pot of broth cooking on the stove almost every day. Oh well. You won't hear me complain about that!
She is still not eating on her own, and will not let us feed her which means that she is getting it all via the bottle and Vitamix. She will not take a sippy cup or any lidded cup either. I am beginning to think that the referral for Occupational Therapy may be a good idea after all. She also has extremely low muscle tone. Hopefully I can find a state agency to help and support us with that since our insurance does not win awards for being the most helpful and we have already created bills in the thousands.
My hope is that we will be able to provide a stricter daily schedule that gets her into the highchair more regularly, and surrounded by a plastic tarp, since a 19 month old eating like a 6 month old is capable of spreading her damage in a much larger radius.
I will be doing a home patch testing for egg whites and egg yolks this week. I am very hopeful that she will pass, because this would be a fantastic source of nutrition for her.
She is growing, and has thinned down dramatically. But she looks healthy. Her hair is growing! Her constipation is gone. And boy is she hungry! She often eats 18 ounces in one sitting now, and that includes 6 or 7 ounces of meat puree! Exciting stuff.....except it keeps a pot of broth cooking on the stove almost every day. Oh well. You won't hear me complain about that!
Thursday, March 10, 2011
A List of Observations
Today is day 9 of taking Ellie off of the amino acid formula and putting her on bone broth and boiled meats only. Here are some observations based on physical conditions, as the cognitive improvement has already been huge.
Things that have disappeared:
Things that have disappeared:
- night time cough and congestion
- day time raspy breathing
- nasal boogies and snot
- massive ear drainage and constant ear wax
- puffy, stretched skin
- diaper rash
- girl part rash
- foggy head behavior
- dark, under-eye circles
- white tongue
- full body eczema
- rashed, red cheeks
- spots on teeth (in grooves of molars)
- low muscle tone
- stiff legged walking
- desire to eat food
- constipation
- increase in tantrums
- large range of volume - from whispers to screams, without much in between
Monday, February 28, 2011
Sometimes She Falls Down
Over the last 18 months there have been many things that in retrospect look a lot clearer. Is that FPIES? Or is that just life? Or is that being a parent? There are a lot of things that I wish I had done, or not done, or just done differently, but the facts are always the same: I did the best that I can with the information I had. This is the story of life.
As moms we are pretty hard on ourselves, and when we have a chronically ill or special needs child that is only amplified. I wish I had elminated corn from my diet before I stopped breastfeeding. I wish I had started keeping logs of her daily schedule and bizarre symptoms much sooner (I did with the first child, why not this one?). I wish I had started a probiotic first, like the pediatrician suggested. But I can't change those things now.
As we have continued on the path of weaning Elianna off of her prescription formula, I have begun to see changes in her that are remarkable. Normal, perhaps. But things I did not see before now, and did not realize I was missing.
The word autism is one that brings fear to any parent, yet it keeps popping up in connection with FPIES and severe food intolerance. Another FPIES mom whose older child is on the spectrum. Doctors doing current research are connecting immune system dysfunction to autism, dyspraxia, ADHD, extreme food intolerances....These topics are all very controversial and unknown. Like vaccinations.
I never related any of these conditions to Elianna. Until now. Sensory issues, food therapy, swallowing problems due to inability to control gag reflex. Sleeping a particular way, eating a particular way, showing sensitivity to light, temperature, and texture. Extreme volumes of quiet and loud when she speaks or cries. The inability to self-sooth. Never wanting to be put down and needing to sleep as upright as possible. It took her longer to walk, and talk, and sit up, and just about everything. And sometimes she just falls down. She trips, she loses her balance, or she will be standing right next to you and the next thing you know she is laying flat on the floor. She doesn't always get up right away, which has always been a bit puzzling. And this never concerned me, until we recently made changes and began to see a different little girl.
She wakes up laughing. She argues with her sister, and hits when she gets angry. She asks for things, shows preference, and responds to commands with more and more frequency. She has begun to mimic, 'high-five', and give kisses. She has words. In fact, the first time we took her off of the formula she said 6 new words within 24 hours. But most chalked it up to coincidence. To me, her mother, I find it remarkable. She DANCES. She holds a beat, bobs up and down, twirls in circles, and sings all day long. ALL day long. And watching it brings me to tears.
All of this has evolved in about the last three weeks. Perhaps she is growing. Perhaps she is just hitting milestones like she was meant to. Or perhaps she is feeling less inflammation in her little body, and getting nutrients that her brain and body so desperately need. Part of the push to make the brave steps to the bone broths occurred after I read information a couple of months back about the developing toddler. At two years of age is when the developing brain begins its first major pruning of unused-brain-whatevers (I forget exactly). That was enough for me. We were wasting time and I had nothing to lose. So what if she had a reaction? We would be no worse off then we were before, and no farther forward. And instead I have seen remarkable change and success.
As she bobbed and waved her arms today to the CD playing "Father Abraham" I could only smile in awe. Where do we go next? Forward.
As moms we are pretty hard on ourselves, and when we have a chronically ill or special needs child that is only amplified. I wish I had elminated corn from my diet before I stopped breastfeeding. I wish I had started keeping logs of her daily schedule and bizarre symptoms much sooner (I did with the first child, why not this one?). I wish I had started a probiotic first, like the pediatrician suggested. But I can't change those things now.
As we have continued on the path of weaning Elianna off of her prescription formula, I have begun to see changes in her that are remarkable. Normal, perhaps. But things I did not see before now, and did not realize I was missing.
The word autism is one that brings fear to any parent, yet it keeps popping up in connection with FPIES and severe food intolerance. Another FPIES mom whose older child is on the spectrum. Doctors doing current research are connecting immune system dysfunction to autism, dyspraxia, ADHD, extreme food intolerances....These topics are all very controversial and unknown. Like vaccinations.
I never related any of these conditions to Elianna. Until now. Sensory issues, food therapy, swallowing problems due to inability to control gag reflex. Sleeping a particular way, eating a particular way, showing sensitivity to light, temperature, and texture. Extreme volumes of quiet and loud when she speaks or cries. The inability to self-sooth. Never wanting to be put down and needing to sleep as upright as possible. It took her longer to walk, and talk, and sit up, and just about everything. And sometimes she just falls down. She trips, she loses her balance, or she will be standing right next to you and the next thing you know she is laying flat on the floor. She doesn't always get up right away, which has always been a bit puzzling. And this never concerned me, until we recently made changes and began to see a different little girl.
She wakes up laughing. She argues with her sister, and hits when she gets angry. She asks for things, shows preference, and responds to commands with more and more frequency. She has begun to mimic, 'high-five', and give kisses. She has words. In fact, the first time we took her off of the formula she said 6 new words within 24 hours. But most chalked it up to coincidence. To me, her mother, I find it remarkable. She DANCES. She holds a beat, bobs up and down, twirls in circles, and sings all day long. ALL day long. And watching it brings me to tears.
All of this has evolved in about the last three weeks. Perhaps she is growing. Perhaps she is just hitting milestones like she was meant to. Or perhaps she is feeling less inflammation in her little body, and getting nutrients that her brain and body so desperately need. Part of the push to make the brave steps to the bone broths occurred after I read information a couple of months back about the developing toddler. At two years of age is when the developing brain begins its first major pruning of unused-brain-whatevers (I forget exactly). That was enough for me. We were wasting time and I had nothing to lose. So what if she had a reaction? We would be no worse off then we were before, and no farther forward. And instead I have seen remarkable change and success.
As she bobbed and waved her arms today to the CD playing "Father Abraham" I could only smile in awe. Where do we go next? Forward.
Tuesday, February 15, 2011
Ellie Had a Little Lamb!
While cleaning the freezer I was excited to find a few jars of beef broth that looked unbroken. This was great news since we were out of lamb and fish. I very carefully removed three unbroken mason jars of beef broth from my garage freezer, and being careful not to bump them on anything, I placed them in our bathtub to thaw. I was able to save them, so I did not have to make beef broth again right away. My mom was kind enough to make the fish broth for me the first time, and offered to make it again, which helped restock my broths. All I had to remake immediately was the lamb.
I was worried I would over do the beef broth if I did not rotate them enough, so we put her back onto formula and almond milk for two days. In an effort to get caught up.....here is a quick synopsis:
Adding the formula back in confirmed that it has been causing symptoms for Elianna. Her reflux and upper respiratory symptoms returned quickly, and I am now convinced that the corn based formula has caused her body to be in a state of inflammation for her entire little life.
The almond milk has not sustained her, and was causing her to be malnourished. This was a horrible recommendation by the doctors, who in their defense, have nothing other than trial and error to guide them. She needs the calories and additional nutrients that the formula provides while we transition her off and onto the GAPs introduction diet (with modifications).
We went one more round of broths: one day beef, one day lamb, one day fish. The results were fantastic! NO signs of reaction or symptoms. We eliminated the almond milk from her bottle entirely, and today we took a BIG STEP!
I made the lamb bone broth, and then pureed up the meat, bone marrow, fat, and other parts we have come to know as 'icky'. I poured the broth into small mason jars, and then added 2 rounded tablespoons of the lamb meat puree to each jar. Once shook up, it completely dissolved into the broth, making it possible to feed her in her bottle. And today that is what she ate! Correction: she CHOWED!
I was really worried that she would be turned off by the texture and that I would not be able to get it liquefied enough with my regular-joe-blender, but she did not seem to mind, and I think she even liked it! Let's hope the other meats blend up that easily.
To complicate matters and make the guessing game more fun (sarcasm there), she contracted a virus this week, and two nights ago her fever reached 104. Thankfully we have some corn-free compounded acetaminophen and ibuprofen in our cupboards, which brought it down to 100. After two late nights battling fever, the lamb broth with puree and some added formula was her drug of choice today. I feared that the amount she ingested would increase her chance for reaction and we would be in horrible shape by tonight. She drank almost 60 ounces of broth just during the day today, with a nap from 11:30 to 3:45! I was so afraid she would wake up screaming or that it was the start of a reaction, but when she woke up she looked better than she has looked, well...ever! With the bottles and the puree we let her paw at in her highchair at dinner, she ate about 4 teaspoons of lamb puree today.
MY FPIES BABY IS EATING MEAT!
I was worried I would over do the beef broth if I did not rotate them enough, so we put her back onto formula and almond milk for two days. In an effort to get caught up.....here is a quick synopsis:
Adding the formula back in confirmed that it has been causing symptoms for Elianna. Her reflux and upper respiratory symptoms returned quickly, and I am now convinced that the corn based formula has caused her body to be in a state of inflammation for her entire little life.
The almond milk has not sustained her, and was causing her to be malnourished. This was a horrible recommendation by the doctors, who in their defense, have nothing other than trial and error to guide them. She needs the calories and additional nutrients that the formula provides while we transition her off and onto the GAPs introduction diet (with modifications).
We went one more round of broths: one day beef, one day lamb, one day fish. The results were fantastic! NO signs of reaction or symptoms. We eliminated the almond milk from her bottle entirely, and today we took a BIG STEP!
I made the lamb bone broth, and then pureed up the meat, bone marrow, fat, and other parts we have come to know as 'icky'. I poured the broth into small mason jars, and then added 2 rounded tablespoons of the lamb meat puree to each jar. Once shook up, it completely dissolved into the broth, making it possible to feed her in her bottle. And today that is what she ate! Correction: she CHOWED!
I was really worried that she would be turned off by the texture and that I would not be able to get it liquefied enough with my regular-joe-blender, but she did not seem to mind, and I think she even liked it! Let's hope the other meats blend up that easily.
To complicate matters and make the guessing game more fun (sarcasm there), she contracted a virus this week, and two nights ago her fever reached 104. Thankfully we have some corn-free compounded acetaminophen and ibuprofen in our cupboards, which brought it down to 100. After two late nights battling fever, the lamb broth with puree and some added formula was her drug of choice today. I feared that the amount she ingested would increase her chance for reaction and we would be in horrible shape by tonight. She drank almost 60 ounces of broth just during the day today, with a nap from 11:30 to 3:45! I was so afraid she would wake up screaming or that it was the start of a reaction, but when she woke up she looked better than she has looked, well...ever! With the bottles and the puree we let her paw at in her highchair at dinner, she ate about 4 teaspoons of lamb puree today.
MY FPIES BABY IS EATING MEAT!
Sunday, February 6, 2011
Fearful Mommy: part 1
Since we knew Elianna's formula was keeping her from getting completely better (to baseline), when we introduced almond milk we also lowered the amount of formula we were giving her to help make sure it was a successful pass. Once we determined it was safe, we went back to 100% formula and moved on to the next trial.
Over the next couple weeks there were a lot of complications, but I couldn't help feeling as if something was just a little not right, and after going back on to the formula 100% she was actually worse. I knew that when you remove a food trigger and then reintroduce it the symptoms could be worse or more immediate because T-cells can identify it faster. I kept shrugging it off, but then over the next three weeks, this added to a couple of other fails, and she just didn't get any better.
For the first time ever her weight started to decline very slightly, her respiratory symptoms were horrible, and we were even failing diaper cream on her butt. This was not boding well. We returned to the allergist who continued with the original instructions: pass almond milk and then transition her off the formula entirely. The concept that her intestines were not going to heal entirely, and that she may not pass any other foods while still on the corn based formula, was one that I could understand in my head. However, the idea of putting my 18 month old on a diet of home made almond milk, and a teaspoon or so of fruit at dinner, was not a very comforting thought. This had to be insane. But the plan was to move quickly and get other foods into her diet. For a child with sensory and food issues this was a lot to expect, and I was spending a lot of fearful time on my knees praying.
I waited until the following week when we went back to see the GI and the nutritionist, so that I could ask if this plan was as insane as I thought. Truly, could an 18 month old survive on only almond milk? Surely not. My mommy instincts were going through the roof. The GI tried to reassure me by saying that 80% of a child's calories between 12 and 24 months of age come from milk (ok but that is for kids who eat food right?), and the nutritionist said that it would be low in protein, so if I could trial and add hemp milk, then lamb, and a gummy multi-vitamin that he recommended, we would be good to go.
Wow. That seemed like a good plan, but a lot of steps to conquer. And could we do it quick enough to not be detrimental to her health? Again I was reassured that she has never had failure to thrive and definitely is in good enough condition to go a month without worrying that she isn't getting her daily recommended nutrition.
A MONTH.
That certainly did not sit well with this mama. A month of transitioning off of the formula, and onto only home made almond milk, while trialling these other new foods? What if she failed one? What if she needed weeks to heal?
What about the fact that she was not healed to begin with and I listened to her cough up her lungs and wake up screaming for air every night?!?
I prayed, and I fretted, and I researched, and I consulted others that I could trust, and the answer was all the same: no one could tell me what the answer was, and the doctors were giving me what they felt to be the best answer. I called and spoke with the pediatrician who gave me an immediate referral to the top pediatric nutritionist at the local hospital, but it would take time to be processed and get in. How long?
The following week her symptoms of illness continued, and we decided to take the plunge. I began making almond milk, and we began the transition. And I was afraid.
I was afraid for her nutrition, I was afraid for a possible reaction once she was on that much almond milk, and I was afraid that if we had to go back to the formula we would not be able to.
Over the next couple weeks there were a lot of complications, but I couldn't help feeling as if something was just a little not right, and after going back on to the formula 100% she was actually worse. I knew that when you remove a food trigger and then reintroduce it the symptoms could be worse or more immediate because T-cells can identify it faster. I kept shrugging it off, but then over the next three weeks, this added to a couple of other fails, and she just didn't get any better.
For the first time ever her weight started to decline very slightly, her respiratory symptoms were horrible, and we were even failing diaper cream on her butt. This was not boding well. We returned to the allergist who continued with the original instructions: pass almond milk and then transition her off the formula entirely. The concept that her intestines were not going to heal entirely, and that she may not pass any other foods while still on the corn based formula, was one that I could understand in my head. However, the idea of putting my 18 month old on a diet of home made almond milk, and a teaspoon or so of fruit at dinner, was not a very comforting thought. This had to be insane. But the plan was to move quickly and get other foods into her diet. For a child with sensory and food issues this was a lot to expect, and I was spending a lot of fearful time on my knees praying.
I waited until the following week when we went back to see the GI and the nutritionist, so that I could ask if this plan was as insane as I thought. Truly, could an 18 month old survive on only almond milk? Surely not. My mommy instincts were going through the roof. The GI tried to reassure me by saying that 80% of a child's calories between 12 and 24 months of age come from milk (ok but that is for kids who eat food right?), and the nutritionist said that it would be low in protein, so if I could trial and add hemp milk, then lamb, and a gummy multi-vitamin that he recommended, we would be good to go.
Wow. That seemed like a good plan, but a lot of steps to conquer. And could we do it quick enough to not be detrimental to her health? Again I was reassured that she has never had failure to thrive and definitely is in good enough condition to go a month without worrying that she isn't getting her daily recommended nutrition.
A MONTH.
That certainly did not sit well with this mama. A month of transitioning off of the formula, and onto only home made almond milk, while trialling these other new foods? What if she failed one? What if she needed weeks to heal?
What about the fact that she was not healed to begin with and I listened to her cough up her lungs and wake up screaming for air every night?!?
I prayed, and I fretted, and I researched, and I consulted others that I could trust, and the answer was all the same: no one could tell me what the answer was, and the doctors were giving me what they felt to be the best answer. I called and spoke with the pediatrician who gave me an immediate referral to the top pediatric nutritionist at the local hospital, but it would take time to be processed and get in. How long?
The following week her symptoms of illness continued, and we decided to take the plunge. I began making almond milk, and we began the transition. And I was afraid.
I was afraid for her nutrition, I was afraid for a possible reaction once she was on that much almond milk, and I was afraid that if we had to go back to the formula we would not be able to.
Thursday, January 27, 2011
Week by Week, Day by Day
The first week of January Elianna had symptoms of a reaction from a bath soap with wheat protein. By January 4th she was having a typical upper respiratory response to the reaction which looks a lot like a bacterial or viral infection. Off to the pediatrician we went for a nebulizer refill (nebulizer medications do not have corn, while all of the inhalers and asthma medications I have researched do). We ended the almond milk and went back to all formula in an effort to help her get better and eliminate any possible complications. And so ended the first week of January.
Here comes week two. I noticed that Elianna's eczema was the worst it has ever been, and that we truly needed to focus on getting her a safe lotion. That led me to the Eucerin, which she ate during week two. For details on this incident see my previous post here. I finally decided that anyone who ate lotion would not feel very good. I decided to put my energy into finding an oil that might work, and thus we trialled almond oil and it was a pass!! It has not completely fixed the problem, but so far we have seen some good improvement.
With the arrival of week three and no more 'prunus' foods to go with, I was feeling a little bit brave and purchased grape juice from the store. All of her safe foods are now out of season, and the choices are limited. I understood grapes to be one of the few fresh fruits you can buy in the store without the traditional corn, soy or dairy derived coating. Soooooo..... daring the issue of cross-contamination, I handed her a cup of grape juice on Monday morning. After two big gulps and about 10 minutes she began to have a glazed look and just sat in her highchair and stared. This prompted me to get her down, and enlist Jason is the observing. Then the reflux coughing, urping and vomiting started. Nothing projectile but she cried in pain. At about 25 minutes she began pointless running in circles around the kitchen island, which was very bizarre to watch. Around and around and around and around. This lasted for about 5 minutes at which cas
e she stopped and we noticed that her face and around her eyes were getting puffy. We stood and watched her eyes swell within a matter of minutes. Another 20 minutes later it seemed to decrease and she was feeling better. Except her eczema was bright red and raised all over her body, almost like hives. Truly bizarre and unlike the reactions we have had prior.
Hooray for January. And, oh, yeah.....that was just the start.
Here comes week two. I noticed that Elianna's eczema was the worst it has ever been, and that we truly needed to focus on getting her a safe lotion. That led me to the Eucerin, which she ate during week two. For details on this incident see my previous post here. I finally decided that anyone who ate lotion would not feel very good. I decided to put my energy into finding an oil that might work, and thus we trialled almond oil and it was a pass!! It has not completely fixed the problem, but so far we have seen some good improvement.
With the arrival of week three and no more 'prunus' foods to go with, I was feeling a little bit brave and purchased grape juice from the store. All of her safe foods are now out of season, and the choices are limited. I understood grapes to be one of the few fresh fruits you can buy in the store without the traditional corn, soy or dairy derived coating. Soooooo..... daring the issue of cross-contamination, I handed her a cup of grape juice on Monday morning. After two big gulps and about 10 minutes she began to have a glazed look and just sat in her highchair and stared. This prompted me to get her down, and enlist Jason is the observing. Then the reflux coughing, urping and vomiting started. Nothing projectile but she cried in pain. At about 25 minutes she began pointless running in circles around the kitchen island, which was very bizarre to watch. Around and around and around and around. This lasted for about 5 minutes at which cas
e she stopped and we noticed that her face and around her eyes were getting puffy. We stood and watched her eyes swell within a matter of minutes. Another 20 minutes later it seemed to decrease and she was feeling better. Except her eczema was bright red and raised all over her body, almost like hives. Truly bizarre and unlike the reactions we have had prior.Hooray for January. And, oh, yeah.....that was just the start.
Thursday, November 11, 2010
Baseline, Beautiful Baseline!
The beginning of August we started Elianna on Nutramigen AA, the amino acid based formula in the category of what the pediatric nutritionist referred to as 'liquid gold'. Within 24 hours her stools changed entirely and within 3 days she was no longer vomiting for the first time in her life. We had seen such improvement with the first switch to formula that we had no idea we could see what is referred to as 'baseline'. We were excited beyond belief. We were happy. And it was great news to provide more answers to her puzzle. End of post :)
Monday, October 18, 2010
That Fateful Appointment
Nearing the end of June we headed back to the GI doctor for Ellie's blood test results and hopefully some answers. What we discussed:
Only on Nutramigen Lipil. She licks foods but most of the time will not eat them and is becoming more and more disinterested. Trigger foods result in vomiting and non-bloody diarrhea and then resolves. Foods tried included sweet potato, rice, banana, wheat products, barley, butternut squash.
I was unable to tell him if she cried more or less at any point because she had cried since birth with no visible pattern. She also slept at odd intervals and was completely unable to get on a schedule, so I could not address that as well. On occasion she did have low grade fevers that appeared at the same time as food exposure.
Blood test results showed mostly normal but some things on the low side. She showed negative to celiacs, and all IgE tests (RAST) came back negative except for a slight peanut. (I found out later that these tests were not very accurate anyway since she has to have eaten the foods for her blood to respond).
He disappeared to discuss with the pediatric nutritionist and then returned. "There is this very rare condition..." he began... "we have only seen a few"...."less than 3% of children"...."FPIES"...."I want her to see an allergist for a second opinion"...."no way to diagnose except by symptoms and process of eliminating anything else it could be"...."we dont really know"...."not a lot of info"...."there is another option for formula we should try"...."stop giving her foods for now"...."establish a plan with the nutritionist"..."here is a copy of the most recent study done"...
WHAT? WHAT was he talking about? Less than how many kids? They don't KNOW anything? This was not what I had wanted to hear. June. 2010. My Ellie is 10 months old and nearing her first birthday. No WAY. Something called FPIES? Food protein? She cant have protein? Rice has protein? So do green vegetables? All food? I just did a lot of nodding and repeating. The plan? Start with the least allergic foods with the lowest levels of protein, preferably all organic. Start with apples, apricots, plums. Nothing else. Keep with the Nutramigen Lipil. Soon she will be a year and we can try other options. And here is a referral to the allergist.
Only on Nutramigen Lipil. She licks foods but most of the time will not eat them and is becoming more and more disinterested. Trigger foods result in vomiting and non-bloody diarrhea and then resolves. Foods tried included sweet potato, rice, banana, wheat products, barley, butternut squash.
I was unable to tell him if she cried more or less at any point because she had cried since birth with no visible pattern. She also slept at odd intervals and was completely unable to get on a schedule, so I could not address that as well. On occasion she did have low grade fevers that appeared at the same time as food exposure.
Blood test results showed mostly normal but some things on the low side. She showed negative to celiacs, and all IgE tests (RAST) came back negative except for a slight peanut. (I found out later that these tests were not very accurate anyway since she has to have eaten the foods for her blood to respond).
He disappeared to discuss with the pediatric nutritionist and then returned. "There is this very rare condition..." he began... "we have only seen a few"...."less than 3% of children"...."FPIES"...."I want her to see an allergist for a second opinion"...."no way to diagnose except by symptoms and process of eliminating anything else it could be"...."we dont really know"...."not a lot of info"...."there is another option for formula we should try"...."stop giving her foods for now"...."establish a plan with the nutritionist"..."here is a copy of the most recent study done"...
WHAT? WHAT was he talking about? Less than how many kids? They don't KNOW anything? This was not what I had wanted to hear. June. 2010. My Ellie is 10 months old and nearing her first birthday. No WAY. Something called FPIES? Food protein? She cant have protein? Rice has protein? So do green vegetables? All food? I just did a lot of nodding and repeating. The plan? Start with the least allergic foods with the lowest levels of protein, preferably all organic. Start with apples, apricots, plums. Nothing else. Keep with the Nutramigen Lipil. Soon she will be a year and we can try other options. And here is a referral to the allergist.
Friday, October 15, 2010
Something Still Not Quite Right
Ellie's continual discomfort and vomiting made me uneasy. I should take the time to mention that we are not talking spit up, or normal baby vomit. We are talking projectile, curdled, and large quantities. Doctors said it should get better when she started solids because it would weigh things down...such as stomach acid. Hmm. I began to research the introduction of solid foods and discovered that other countries don't share the perspective we have here about delaying foods, and in fact, the American Association of Pediatrics is considering revising their standpoint. This discovered, coupled with wanting to stop her vomiting and pain, and with the need for sleep, I dove into the introduction of solids for Elianna.
I did not take good notes during this phase because I had no idea there was a need. I grabbed all the traditional first foods and went for it, not expecting to hit a curve ball. We tried, rice cereal, oat cereal, sweet potatoes, avocado. She received the spoon well at the beginning, but after one or two tries of any food she would clamp her mouth shut and refuse. And the vomiting! It got worse and worse. For about 4 - 6 weeks I attempted to get some food into Elianna. Her stool became horribly green and disgusting with a bizarre acidic smell. Her butt burned within minutes if I didnt change her diaper right away, and she began throwing up within minutes of eating. About 6 weeks into trying food I attempted banana. Like most of the other foods, the first one or two times seemed ok. But by about the third try she was vomiting. Banana?! Really?? At this point I knew I must be nuts. How could any baby be vomiting, crying, and screaming after eating sweet potatoes, rice cereal, or banana?? Something was wrong.
I decided that maybe she had celiacs. I gave her oat cereal instead. Nothing worked! I headed back to the GI yet again and this time I expressed my frustration and concern. I want her tested for Celiacs, I declared. The GI agreed, saying that he had doubt and that we needed to start aggressively eliminating what could be wrong. Keep her on the Nutramigen Lipil, and do some tests.
(Note: She continued to gain weight and grow, staying above the 90th percentile at all times. This alone baffled the doctors and I believe continues to be a struggle for us. Oddly, her outer appearance does not match that of her inner, so 'proving' she is sick has become an issue at times. I felt there were small signs such as sunken, dark eyes and puffy body features but nothing that got attention. But more on that later)
After our appointment with the GI we headed down to the lab where vial after vial of blood was drawn from Elianna. I couldn't believe the amount they had to take!
Our fantastic GI spent much time communicating with me over email and phone. And back in to his office to discuss the results.
I did not take good notes during this phase because I had no idea there was a need. I grabbed all the traditional first foods and went for it, not expecting to hit a curve ball. We tried, rice cereal, oat cereal, sweet potatoes, avocado. She received the spoon well at the beginning, but after one or two tries of any food she would clamp her mouth shut and refuse. And the vomiting! It got worse and worse. For about 4 - 6 weeks I attempted to get some food into Elianna. Her stool became horribly green and disgusting with a bizarre acidic smell. Her butt burned within minutes if I didnt change her diaper right away, and she began throwing up within minutes of eating. About 6 weeks into trying food I attempted banana. Like most of the other foods, the first one or two times seemed ok. But by about the third try she was vomiting. Banana?! Really?? At this point I knew I must be nuts. How could any baby be vomiting, crying, and screaming after eating sweet potatoes, rice cereal, or banana?? Something was wrong.
I decided that maybe she had celiacs. I gave her oat cereal instead. Nothing worked! I headed back to the GI yet again and this time I expressed my frustration and concern. I want her tested for Celiacs, I declared. The GI agreed, saying that he had doubt and that we needed to start aggressively eliminating what could be wrong. Keep her on the Nutramigen Lipil, and do some tests.
(Note: She continued to gain weight and grow, staying above the 90th percentile at all times. This alone baffled the doctors and I believe continues to be a struggle for us. Oddly, her outer appearance does not match that of her inner, so 'proving' she is sick has become an issue at times. I felt there were small signs such as sunken, dark eyes and puffy body features but nothing that got attention. But more on that later)
After our appointment with the GI we headed down to the lab where vial after vial of blood was drawn from Elianna. I couldn't believe the amount they had to take!
Our fantastic GI spent much time communicating with me over email and phone. And back in to his office to discuss the results.
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