On the night of February 10, 2011, I held a dying child in my arms.
Her weight had plummeted, she was dehydrated, and her elemental formula had failed her. I spent that night rocking a screaming child, cleaning up vomit, and staring into her dull eyes. I was paralyzed by fear.
We had been told:
absolutely do NOT feed her animal products
she is horrifically allergic to corn
there are no medical studies
feeding her is by trial and error
We had been instructed to:
take her off the elemental formula
feed her homemade almond milk and her safe foods (a handful of fruits)
try lamb
try a multi-vitamin with corn as an ingredient
wait for an appointment with a 'top nutritionist'
We had been 'reassured':
she can go at least a month before we need to be concerned about her malnourishment affecting her
Her doctors had always marveled that she continued to grow and maintain her weight in the 90+ percentile, in spite of her medical problems and limited diet. Her lack of hair, puffy body, and swollen joints were just signs of a chubby baby. And now her weight had begun to decline for the first time in her life, and there was expressed concern for her 'entering her failure to thrive'. Her body was tired and worn out from fighting.
We followed the advice we were given, and she dropped 22 ounces in less than 3 weeks time. And on the night of February 10, 2011, I was certain she may not make it until morning.
Fear. I could never explain the fear.
I will never forget kneeling beside my bed in anger and fear and panic, and thinking it completely ridiculous that I would live in one of the richest nations in the world, yet there was no answer for my daughter.
The actual dates are muddy since email dates do not match blog post dates; I certainly was not focused on taking notes. I had already purchased the GAPS book and had skimmed it. My brain was a muddled mess of GAPS facts, what the doctors were telling me, and what I had found in my own research. I look back at my blog posts and cringe: I had no idea what I was doing and no one to ask. There are a lot of things I should have done....differently. And a lot of things I did not understand. But by mid-March, and after 5 weeks, we had Ellie entirely on stage 1 of the GAPS introduction healing diet.
It was hard work. And it was petrifying.
Miraculously there was one other FPIES mom on the other side of the continent who had decided to start her FPIES twins on GAPS the same week, and without either of us knowing. Praise God for miracles such as this. Her support over the last year has helped to keep us moving forward. Never underestimate the importance of support.
Tomorrow it will be a year since I sent my first email to Dr. Natasha, and she responded with exactly what I needed to hear: You can heal your daughter.
One year ago tomorrow, someone I had never met saved her life.
And I vowed I would not be quiet about it.
GAPS heals autoimmune disease. Period. It is not a band aid. It is not a fluke. It is not a trendy diet or a prescription for a select few. It is scientifically backed, time tested, and designed for even the most difficult autoimmune diseases. And in the face of fear, it provides hope.
Need hope?
Showing posts with label reflux. Show all posts
Showing posts with label reflux. Show all posts
Thursday, February 9, 2012
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.
Saturday, April 30, 2011
Her First Antibiotics
We were making fantastic progress with Ellie on the bone broths and meats. Thanks to the many blessings of others we have been able to provide her with just about every bone broth imaginable. Each animal has a different diet and provides different nutrients. We often think of this when eating the staples fish, beef, or chicken. We don't often think of the other meats as offering even more.
Once she had been on the bone broth and boiled, pureed meats for a couple of weeks we began the process of introducing vegetables. We used the GAPS introduction diet as our guide. We started with de-seeded, skinned, boiled green zucchini. Removing the seeds and skin helped take out any fibrous parts that would irritate and inflame her healing intestines.
We then moved on to onion. She didn't seem to do great, but we moved forward. I added in carrot, and threw in a little garlic. I could have added them in too quickly. The onion could have been too fibrous. The carrot could have been too sweet. The garlic too starchy. Or perhaps I just got to excited at the idea of her eating food. Whatever it was, we had our first 'fail' since the start of broths. And it seemed to hinge largely around the carrot.
At this point I realized things were different. It as not a typical, confusing, and extreme FPIES reaction like we had seen in the past. And I began to understand that what I was seeing was an intolerance - the inability for her body to handle a particular food. And the differences between FPIES, intolerances, and allergies began to make sense.
I removed the garlic and carrot, but she did not heal. I removed the onion and still no improvement. With just zucchini we began to see respiratory symptoms. Back on just the broth and meat. And a low grade fever.
Off to the pediatrician we went. Diagnosis: sinus infection and ear infection from reflux. Treatment: Her first ever round of antibiotics. 10 days of compounded amoxicillian (sp?). A slight increase in her probiotic. And a surprise. No typical antibiotic diarrhea. Or constipation. Or problems. Instead we saw a white tongue, return of full body eczema, and an otherwise very happy toddler.
Interesting. Antibiotic therapy is used to treat colitis and intestinal disorders....sometimes.
The white tongue and eczema was fungus overgrowth. Compounded powder nystatin was added to her mix.
And she got better. Zucchini back in, and moving forward again.
Once she had been on the bone broth and boiled, pureed meats for a couple of weeks we began the process of introducing vegetables. We used the GAPS introduction diet as our guide. We started with de-seeded, skinned, boiled green zucchini. Removing the seeds and skin helped take out any fibrous parts that would irritate and inflame her healing intestines.
We then moved on to onion. She didn't seem to do great, but we moved forward. I added in carrot, and threw in a little garlic. I could have added them in too quickly. The onion could have been too fibrous. The carrot could have been too sweet. The garlic too starchy. Or perhaps I just got to excited at the idea of her eating food. Whatever it was, we had our first 'fail' since the start of broths. And it seemed to hinge largely around the carrot.
At this point I realized things were different. It as not a typical, confusing, and extreme FPIES reaction like we had seen in the past. And I began to understand that what I was seeing was an intolerance - the inability for her body to handle a particular food. And the differences between FPIES, intolerances, and allergies began to make sense.
I removed the garlic and carrot, but she did not heal. I removed the onion and still no improvement. With just zucchini we began to see respiratory symptoms. Back on just the broth and meat. And a low grade fever.
Off to the pediatrician we went. Diagnosis: sinus infection and ear infection from reflux. Treatment: Her first ever round of antibiotics. 10 days of compounded amoxicillian (sp?). A slight increase in her probiotic. And a surprise. No typical antibiotic diarrhea. Or constipation. Or problems. Instead we saw a white tongue, return of full body eczema, and an otherwise very happy toddler.
Interesting. Antibiotic therapy is used to treat colitis and intestinal disorders....sometimes.
The white tongue and eczema was fungus overgrowth. Compounded powder nystatin was added to her mix.
And she got better. Zucchini back in, and moving forward again.
Sunday, February 20, 2011
More In the Lessons of Broth Making
Broth lesson number two:
In the fridge broth stays good for about 5 days up to a week.
Add meat and it is only good for about 2 days. Max. Or it goes rancid.
Enter very smart FPIES baby who screams from 2:15 am until 3:00 am every time she is offered a bottle with beef broth. As a last resort mommy gives a bottle of plain formula, not knowing what to do, to which FPIES baby has coughing and reflux to.
In the morning mommy realizes that she has had the broth in the fridge for 4 days and it smells funky.
VERY thankful that smart FPIES toddler does not eat the rotten broth and get food poisoning.
When does this learning curve end!?!
In the fridge broth stays good for about 5 days up to a week.
Add meat and it is only good for about 2 days. Max. Or it goes rancid.
Enter very smart FPIES baby who screams from 2:15 am until 3:00 am every time she is offered a bottle with beef broth. As a last resort mommy gives a bottle of plain formula, not knowing what to do, to which FPIES baby has coughing and reflux to.
In the morning mommy realizes that she has had the broth in the fridge for 4 days and it smells funky.
VERY thankful that smart FPIES toddler does not eat the rotten broth and get food poisoning.
When does this learning curve end!?!
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!
Wednesday, February 9, 2011
Let's Go Bone Broth, Let's Go!
Day one of beef broth trial went fantastic! She had it in her bottle with her almond milk, as well as separately like soup at the table. The best part? She loves it! No reflux symptoms, no visible FPIES reaction symptoms, and then we just had to wait for the poo to confirm.
Day two of beef broth trial was just as great. Ellie was chugging her bottles and had increased the amount to more than just her formula. I increased the amount of broth in her bottles to one ounce each time. She pooped, and all was fine!
Day three - lamb broth! Ellie at it, but reluctantly. She gave me a look as if to say 'seriously? what is this and where's the beef?' She didn't like it as much. Imagine that! Within 48 hours we went from massive panic because she could eat nothing, to beef broth and lamb broth, and her showing her first sign of not really liking the taste of something. Amazing! That afternoon I gave her another bottle of beef to not overdo the lamb.
Day four - FISH broth. BLECK! Thankfully my mom made this for me, because at this point I am not so sure I could handle fish heads floating around in water. Ellie liked this more than the lamb.
We were making great progress, and I needed to figure out where to go next. Another mom had communicated with the GAPs doc, and I received a little more guidance from what she forwarded to me. Next steps included getting a probiotic, beef liver, and a juicer. And things were looking amazingly good!
**note to the FPIES: Traditional recommendation for FPIES is to allow up to two weeks for the introduction of a new food and see if there is a build reaction. GAPs protocol says that if you rotate through you vary the nutrients and do not allow for the build to occur before the intestines begin the healing process. The food must be packed with nutrition and require no digestion (bone broth), because the intestines require an incredible amount of nutrition to heal and repair. According to Dr. Campbell, without this process (the patient) will react to ALL food (FPIES). At the moment, most North American allergists treat FPIES with aggressive food trials, similar to this process, but without training in nutrition or taking into consideration the digestive abilities of the food introduced. This makes sense since nutrition is not part of medical school in North America. Proof of this would be the separate degree required to be a nutritionist!
Day two of beef broth trial was just as great. Ellie was chugging her bottles and had increased the amount to more than just her formula. I increased the amount of broth in her bottles to one ounce each time. She pooped, and all was fine!
Day three - lamb broth! Ellie at it, but reluctantly. She gave me a look as if to say 'seriously? what is this and where's the beef?' She didn't like it as much. Imagine that! Within 48 hours we went from massive panic because she could eat nothing, to beef broth and lamb broth, and her showing her first sign of not really liking the taste of something. Amazing! That afternoon I gave her another bottle of beef to not overdo the lamb.
Day four - FISH broth. BLECK! Thankfully my mom made this for me, because at this point I am not so sure I could handle fish heads floating around in water. Ellie liked this more than the lamb.
We were making great progress, and I needed to figure out where to go next. Another mom had communicated with the GAPs doc, and I received a little more guidance from what she forwarded to me. Next steps included getting a probiotic, beef liver, and a juicer. And things were looking amazingly good!
**note to the FPIES: Traditional recommendation for FPIES is to allow up to two weeks for the introduction of a new food and see if there is a build reaction. GAPs protocol says that if you rotate through you vary the nutrients and do not allow for the build to occur before the intestines begin the healing process. The food must be packed with nutrition and require no digestion (bone broth), because the intestines require an incredible amount of nutrition to heal and repair. According to Dr. Campbell, without this process (the patient) will react to ALL food (FPIES). At the moment, most North American allergists treat FPIES with aggressive food trials, similar to this process, but without training in nutrition or taking into consideration the digestive abilities of the food introduced. This makes sense since nutrition is not part of medical school in North America. Proof of this would be the separate degree required to be a nutritionist!
Tuesday, February 8, 2011
The Hand of God (a pause to give credit where credit is due)
That afternoon I was able to research and process what the yellow poop meant. There are three things that can cause it: bacteria infection, lack of stomach bile, or GERD (reflux). Elianna has already been tested for bacterial infections, obviously has GERD, and the lack of stomach bile hit a chord. Where had I read that? Leaky gut and lack of stomach bile...?
I headed back to my GAPs book where I remembered it. And spent the rest of the day reading as fast as I could. I needed a crash course.
Life is funny. In fact, every day I am glad it is not me making the world spin. And every once in a while we are afforded the rare opportunity to look backwards and see a chain of events that were divinely orchestrated and designed for a given moment. About 5 years ago I began the discussion of yeast and candida with a friend, and learned about sugar. Another friend gave me the book "In Defense of Food", and I learned about grains and flour. I made some changes in our home, and in our diet. We moved to a small town called Davis, and I met some new moms. I went to a nutrition talk and examined the issue of organic produce. I made a great friend who introduced me to Dr. Mercola, elderberry, and the perils of diary. Another great friend was diagnosed with breastcancer, and I spent two years learning about phytoestrogens, environmental pollutants, and plastics. Elianna was born. I was severely anemic, and learned that food combinations can help heal the body faster. Meat eaten with orange juice helps the body process the iron more efficiently. Elianna was sick. And I met a woman who was feeding her family a most controversial diet from a doctor in the UK, that had been started for autistic kids. She had the resources I needed to survive my elimination diets, and without knowing me she spent hours discussing nutrition. She loaned me her book on the Specific Carbohydrate Diet and the GAPs Diet.
Friday I headed back to my GAPs book. Yes....multiple intolerances....leaky gut....lets in proteins it shouldn't.....lack of bile....this was all falling into place.
Doctors and nutritionists had been unable to give me guidance on what to feed Elianna next, and she needed food NOW. I had been warned to stay away from high protein foods because she would most certainly react, but the GAPs diet has been successful on thousands of patients since before 1990. This was more than the crap-shoot answers the allergist could give me, and more than any study done to date on this condition in the United States. So GAPs it would be. I would find grass fed beef, and we would start with bone broth. And I would do it immediately.
That night Elianna would not sleep. She cried, had sunken eyes, and had barely eaten 25 ounces all day...for six days. How could her body fight the change in her intestines when she was not even getting enough nutrition to heal? I made the decision to add formula back into her almond milk. Only two scoops, instead of the 5, but it was enough. She slept that night, and she ate well.
I headed back to my GAPs book where I remembered it. And spent the rest of the day reading as fast as I could. I needed a crash course.
Life is funny. In fact, every day I am glad it is not me making the world spin. And every once in a while we are afforded the rare opportunity to look backwards and see a chain of events that were divinely orchestrated and designed for a given moment. About 5 years ago I began the discussion of yeast and candida with a friend, and learned about sugar. Another friend gave me the book "In Defense of Food", and I learned about grains and flour. I made some changes in our home, and in our diet. We moved to a small town called Davis, and I met some new moms. I went to a nutrition talk and examined the issue of organic produce. I made a great friend who introduced me to Dr. Mercola, elderberry, and the perils of diary. Another great friend was diagnosed with breastcancer, and I spent two years learning about phytoestrogens, environmental pollutants, and plastics. Elianna was born. I was severely anemic, and learned that food combinations can help heal the body faster. Meat eaten with orange juice helps the body process the iron more efficiently. Elianna was sick. And I met a woman who was feeding her family a most controversial diet from a doctor in the UK, that had been started for autistic kids. She had the resources I needed to survive my elimination diets, and without knowing me she spent hours discussing nutrition. She loaned me her book on the Specific Carbohydrate Diet and the GAPs Diet.
Friday I headed back to my GAPs book. Yes....multiple intolerances....leaky gut....lets in proteins it shouldn't.....lack of bile....this was all falling into place.
Doctors and nutritionists had been unable to give me guidance on what to feed Elianna next, and she needed food NOW. I had been warned to stay away from high protein foods because she would most certainly react, but the GAPs diet has been successful on thousands of patients since before 1990. This was more than the crap-shoot answers the allergist could give me, and more than any study done to date on this condition in the United States. So GAPs it would be. I would find grass fed beef, and we would start with bone broth. And I would do it immediately.
That night Elianna would not sleep. She cried, had sunken eyes, and had barely eaten 25 ounces all day...for six days. How could her body fight the change in her intestines when she was not even getting enough nutrition to heal? I made the decision to add formula back into her almond milk. Only two scoops, instead of the 5, but it was enough. She slept that night, and she ate well.
Moving Past Hemp (for now)
The next day I added 1/4 teaspoon Hemp protein powder to Elianna's formula, but when she finished the bottle there was a lot left. The second bottle confirmed that the powder was staying stuck in the neck of the bottle nipple and she was not ingesting it. Bummer. That was a wasted day.
She was thinner, and she still only ate maybe two bottles that day. No reflux or reaction symptoms were obvious, and I had no idea what to do. The nutritionist had instructed me to give her at least a week to get back up to eating the same amount as formula or more. We were at day 5.
I researched the caloric value of almond milk. I researched almond oil, hemp milk, hemp oil, hemp powder, her safe fruits....anything I could think of that I could add to her almond milk to give it more calories. I consulted a friend who makes home made formula for her FPIES son, and attempted to create a recipe that would be safe for Ellie. She needed calories. The hemp protein powder didn't have many calories in it, so that was not worth the trial and risking the fail. Not eating could be a sign that she was hurting from the almond milk.
I emailed the nutritionist again, and he pushed me towards a specific brand of Hemp milk. I responded that it had carageenan in it, which is known for causing stomach upset. I didnt think that was a good choice. He emailed again saying to try another specific brand that did not have carageenan. It had brown rice syrup. I emailed again and said that was also not going to work, and then decided it was just wasting my time to consult the nutritionist.
That night on my knees I begged to know if she was reacting to the almond milk, or if being off the corn formula she was actually feeling better. And next steps? Add an oil? Try a food? I needed direction.
She was thinner, and she still only ate maybe two bottles that day. No reflux or reaction symptoms were obvious, and I had no idea what to do. The nutritionist had instructed me to give her at least a week to get back up to eating the same amount as formula or more. We were at day 5.
I researched the caloric value of almond milk. I researched almond oil, hemp milk, hemp oil, hemp powder, her safe fruits....anything I could think of that I could add to her almond milk to give it more calories. I consulted a friend who makes home made formula for her FPIES son, and attempted to create a recipe that would be safe for Ellie. She needed calories. The hemp protein powder didn't have many calories in it, so that was not worth the trial and risking the fail. Not eating could be a sign that she was hurting from the almond milk.
I emailed the nutritionist again, and he pushed me towards a specific brand of Hemp milk. I responded that it had carageenan in it, which is known for causing stomach upset. I didnt think that was a good choice. He emailed again saying to try another specific brand that did not have carageenan. It had brown rice syrup. I emailed again and said that was also not going to work, and then decided it was just wasting my time to consult the nutritionist.
That night on my knees I begged to know if she was reacting to the almond milk, or if being off the corn formula she was actually feeling better. And next steps? Add an oil? Try a food? I needed direction.
Thursday, January 27, 2011
Ain't Nothin Urgent About Urgent Care
I have heard many horror stories from other FPIES and PI moms about doctors and hospital visits. We have been blessed with a fantastic pediatrician who sent us right away to a fantastic GI, and so we have had very minimal bad experiences. Just to make sure I can relate to those other moms, we were allowed to have a couple of those experiences this month.
The third weekend in January we were approaching the end of the fourth week of Elianna's respiratory problems. She had been on the nebulizer at night for almost three weeks, and by the 21st I was beginning to be afraid for her oxygen levels, especially at night when it was particularly bad. After an extremely hard Saturday night I decided it was time to haul her in to the urgent care provided by our pediatrician's office just to have her checked. What if at this point she had pneumonia?
I knew there was going to be a problem when I called to make the appointment. Every veteran mom knows there are key phrases and words that tell the scheduler to consult an advice nurse immediately, or to at least not make light of the situation. I called Urgent Care as soon as they were open, and told the woman on the line that 'my 18 month old daughter is a patient of Dr. O, and she has been having trouble breathing. I need her to have her oxygen levels checked and have her chest listened to.' 'oh.....o.k.', she answered causally. 'well, my next available appointment is at 11:45. Will you be able to make it here by then?' Duh. Did you hear me say she wasn't BREATHING?
We arrived at urgent care and the nurse welcomed us warmly into the room. 'So you are here for a cough?' she asked. 'Well...no not exactly,' I answered. 'She has been sick for several weeks and was having great trouble breathing last night. I would like to know if it is a bacterial infection or a virus, or just a side effect from her reflux.'
'oh OK,' she was partially listening. 'So..haha...her chart says she is allergic to FOOD and that is a little GENERAL so I am going to need you to be more specific and update things. We also have listed peanuts. Is there anything else you would like to add?' Tick. Tick. In my head I have to make a choice. Explain, or just say no. 'Well, she has a rare condition called FPIES where she actually IS allergic to food.' Silence.
her: 'Oh. OK. Is she on any current medications?'
me: 'She is on albuteral in a nebulizer.'
her: 'Oh. Why is that? There is no diagnosis of asthma in her file.'
me: 'Well, she has a severe corn allergy and that is the only medication she can have without it.'
her: 'Oh so she DOES have a severe allergy, and to corn? I will add that in.'
me: 'Is her diagnosis even IN her file?'
her: *tense laugh* 'Oh I am sure it is, but I am not on that part of the screen. I am in the allergy section.'
me: AAAAAAAAAAGGGGGGGGGGGGGGHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!
OK not really. That was only going on in my head.
her: 'Well let's measure her oxygen.' *fast forward* 'It's fine. Looks good. Its 98.'
me: 'what should it be?'
her: 'oh, 100.'
me: 'Wow I really should just avoid the co-pays and buy one of those oxygen meters for my home.'
OK. Again. Not really. Just what I was making a mental note of. Ask Dr. O about that and if that is a possibility.
her: 'The doctor will be right in.'
And he was. In he came! He asked me the same questions, and I tried to explain again. And he listened to her chest.
Dr.: 'Sounds clear.'
Elianna: *cough. hack. gag*
Me: 'OK. So it is not a bacteria or a virus?'
Dr.: 'Uh...no normally we see other symptoms with virus or bacteria.'
me: 'so this is a side effect of her reflux?'
Dr.: 'I don't know. You should follow up with your primary care.'
And he exited.
Clearly I chose the wrong profession, because he got PAID for that!
The third weekend in January we were approaching the end of the fourth week of Elianna's respiratory problems. She had been on the nebulizer at night for almost three weeks, and by the 21st I was beginning to be afraid for her oxygen levels, especially at night when it was particularly bad. After an extremely hard Saturday night I decided it was time to haul her in to the urgent care provided by our pediatrician's office just to have her checked. What if at this point she had pneumonia?
I knew there was going to be a problem when I called to make the appointment. Every veteran mom knows there are key phrases and words that tell the scheduler to consult an advice nurse immediately, or to at least not make light of the situation. I called Urgent Care as soon as they were open, and told the woman on the line that 'my 18 month old daughter is a patient of Dr. O, and she has been having trouble breathing. I need her to have her oxygen levels checked and have her chest listened to.' 'oh.....o.k.', she answered causally. 'well, my next available appointment is at 11:45. Will you be able to make it here by then?' Duh. Did you hear me say she wasn't BREATHING?
We arrived at urgent care and the nurse welcomed us warmly into the room. 'So you are here for a cough?' she asked. 'Well...no not exactly,' I answered. 'She has been sick for several weeks and was having great trouble breathing last night. I would like to know if it is a bacterial infection or a virus, or just a side effect from her reflux.'
'oh OK,' she was partially listening. 'So..haha...her chart says she is allergic to FOOD and that is a little GENERAL so I am going to need you to be more specific and update things. We also have listed peanuts. Is there anything else you would like to add?' Tick. Tick. In my head I have to make a choice. Explain, or just say no. 'Well, she has a rare condition called FPIES where she actually IS allergic to food.' Silence.
her: 'Oh. OK. Is she on any current medications?'
me: 'She is on albuteral in a nebulizer.'
her: 'Oh. Why is that? There is no diagnosis of asthma in her file.'
me: 'Well, she has a severe corn allergy and that is the only medication she can have without it.'
her: 'Oh so she DOES have a severe allergy, and to corn? I will add that in.'
me: 'Is her diagnosis even IN her file?'
her: *tense laugh* 'Oh I am sure it is, but I am not on that part of the screen. I am in the allergy section.'
me: AAAAAAAAAAGGGGGGGGGGGGGGHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!
OK not really. That was only going on in my head.
her: 'Well let's measure her oxygen.' *fast forward* 'It's fine. Looks good. Its 98.'
me: 'what should it be?'
her: 'oh, 100.'
me: 'Wow I really should just avoid the co-pays and buy one of those oxygen meters for my home.'
OK. Again. Not really. Just what I was making a mental note of. Ask Dr. O about that and if that is a possibility.
her: 'The doctor will be right in.'
And he was. In he came! He asked me the same questions, and I tried to explain again. And he listened to her chest.
Dr.: 'Sounds clear.'
Elianna: *cough. hack. gag*
Me: 'OK. So it is not a bacteria or a virus?'
Dr.: 'Uh...no normally we see other symptoms with virus or bacteria.'
me: 'so this is a side effect of her reflux?'
Dr.: 'I don't know. You should follow up with your primary care.'
And he exited.
Clearly I chose the wrong profession, because he got PAID for that!
Wednesday, December 15, 2010
Well I Guess We Do Persimmon
Ellie doesn't put food in her mouth. At the beginning of November she would hit the spoon, spit, sputter, and fight when we could get her to even sit in her highchair. We have consistently offered her apricot puree (her favorite safe food) over the last week or so, and she has come to want it and even ask to sit in her chair for dinner. Great progress!
Today while Nana was visiting, Elianna watched us snacking on dried persimmon slices and proceeded to do the 'uh-uh-uh-I want that' noise. Oh why not. We haven't had a reaction in quite some time. I gave her some and she licked it! Then licked it again! And into her mouth it went. She actually CHEWED on a piece for quite some time, which was a major first. How exciting! I was not planning on trialling persimmon, but oh well! At this point I will take what I can get. Persimmon is a highly nutritious fruit, and has only one other family member - the date plum. So I thought our chances would be good! But no luck. She failed.
Two hours after she woke up from her nap crying. She spent the next couple of hours occasionally crunched over in tummy pain, with red rimmed eyes, and her lethargic 'I don't feel good' personality. She woke with the noticeable bad reaction breath. Some time around 3 hours she transitioned into gurgling loud stomach and the occasional hiccups. She began chewing, and often gnawing, on everything. Esophagus pain. And then about five hours later she ended with a bloody poo. Darn. No persimmons. She will be at least 34 months old (almost 3) before she will be able to try them again.
On the positive side, the reaction was a minor one. There was no violent expelling of food, or signs of shock. The blood was minimal, as was the mucous, and the cramping seemed to stop after a few hours. That means she will heal quicker than a severe reaction. It means that I most likely wont be up all night rocking her because laying down rolls stomach acid into her throat which burns. And it also means I am more hopeful that she will not take it as license to stop eating again, going back to associating food with pain. Guess we will see tomorrow when we offer her the apricot puree.
Today while Nana was visiting, Elianna watched us snacking on dried persimmon slices and proceeded to do the 'uh-uh-uh-I want that' noise. Oh why not. We haven't had a reaction in quite some time. I gave her some and she licked it! Then licked it again! And into her mouth it went. She actually CHEWED on a piece for quite some time, which was a major first. How exciting! I was not planning on trialling persimmon, but oh well! At this point I will take what I can get. Persimmon is a highly nutritious fruit, and has only one other family member - the date plum. So I thought our chances would be good! But no luck. She failed.
Two hours after she woke up from her nap crying. She spent the next couple of hours occasionally crunched over in tummy pain, with red rimmed eyes, and her lethargic 'I don't feel good' personality. She woke with the noticeable bad reaction breath. Some time around 3 hours she transitioned into gurgling loud stomach and the occasional hiccups. She began chewing, and often gnawing, on everything. Esophagus pain. And then about five hours later she ended with a bloody poo. Darn. No persimmons. She will be at least 34 months old (almost 3) before she will be able to try them again.
On the positive side, the reaction was a minor one. There was no violent expelling of food, or signs of shock. The blood was minimal, as was the mucous, and the cramping seemed to stop after a few hours. That means she will heal quicker than a severe reaction. It means that I most likely wont be up all night rocking her because laying down rolls stomach acid into her throat which burns. And it also means I am more hopeful that she will not take it as license to stop eating again, going back to associating food with pain. Guess we will see tomorrow when we offer her the apricot puree.
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 :)
Wednesday, October 20, 2010
Moving Forward
At this point we were giving Ellie peaches, nectarines and blueberries, but we had not correctly trialled them. She no longer received a spoon and would only eat things that she could feed herself. This drastically limits options at 12 months old when there are texture issues. She would not touch anything, and she was also teething (seriously inconvenient when dealing with FPIES).
We had been feeling financial strain from co-pays, formula expense, time off of work, and medical bills. Deep down I knew I needed to put her on the more expensive Elemental formula to see if there was improvement, but her intake was increasing and we were talking an average of $45-$60 a can. Something was going to have to change. We were at the cross-roads, and I was not convinced we could do it financially. I expressed my thoughts to my new mom-friends online. I was looking for any insight to get the insurance company to cover Ellie's formula, and thoughts on moving to the prescription medical grade formula. One of the mom's offered to send me 7 cans of the Elemental formula Nutramigen AA. For the full amazing story click 'here'.
For an explanation of the different formulas click 'here'.
In the meantime I took Ellie to her next GI appointment on the morning of her first birthday. He has amazing patience and fantastic listening ear. We recapped her symptoms and discussed the new ones:
-reflux since birth, even in hospital had to be addressed by nurses
-fussy and seen for colic
-snotty clogged nose since birth
-upper respiratory issues
-can not hold her facing out with arm pressure on her belly or she will vomit
-never had a completely solid stool - always diarrhea and liquid
-always had sensory focused personality - sensitive to touch, likes soft, etc. hates dirty diapers, wont eat if diaper is wet, etc
-change from breastfeeding to formula meant more alert happy baby but no change in stools
-history of crying and pain
recent changes:
-straining at time to poo even if diarrhea. acts in pain, constipation.
-stool smells acidic and burns her butt sometimes
-vomit has changed to be partially curdy
-stool often has two separate ‘stages’, a liquid stage first, and then a goopy solid portion 15+ minutes later
-horrible breath
-lots of hands in the mouth for sucking and putting things back until she gags
-no solids - periodic peach juice or smashed blueberry - yet stool stays same diarrhea
-spends the night fussy and up often after having any food
-often still just randomly chokes up stomach acid, but less projectile vomit
Our pediatric GI agreed it was time to look further. The radiologist had concern for colitis in her upper intestines, but the GI was not overly concerned. He said there would be more visible evidence in her stool (bleeding). It was time to take an internal look. He conducted a rectal scope and biopsy (happy birthday Ellie). The rectal scope looked great. Everything seemed to be in her upper intestines. He gave orders for stool sample tests and said to work on collecting them while waiting for the results of the biopsy. He recapped FPIES versus EE, and the idea that her specific problems could be in her esophagus. He mentioned a concern for sugar intolerance which he said was a secondary issue to FPIES, and why she could still be having trouble with the fruits. When I asked about Nutramigen AA (the formula being sent by the other FPIES mom) he said it was not one that he kept in the office, and the he would prefer she be on one that was designed more for a toddler nutritionally.
We left the appointment with instructions to try the elemental formula, samples of Elecare, a new reflux medicine, three large bags of stool sample kits, and instructions to wait for results of these additional tests. I took a deep breath, lots of notes, and made final preparations for Ellie's first birthday party in two days.
We had been feeling financial strain from co-pays, formula expense, time off of work, and medical bills. Deep down I knew I needed to put her on the more expensive Elemental formula to see if there was improvement, but her intake was increasing and we were talking an average of $45-$60 a can. Something was going to have to change. We were at the cross-roads, and I was not convinced we could do it financially. I expressed my thoughts to my new mom-friends online. I was looking for any insight to get the insurance company to cover Ellie's formula, and thoughts on moving to the prescription medical grade formula. One of the mom's offered to send me 7 cans of the Elemental formula Nutramigen AA. For the full amazing story click 'here'.
For an explanation of the different formulas click 'here'.
In the meantime I took Ellie to her next GI appointment on the morning of her first birthday. He has amazing patience and fantastic listening ear. We recapped her symptoms and discussed the new ones:
-reflux since birth, even in hospital had to be addressed by nurses
-fussy and seen for colic
-snotty clogged nose since birth
-upper respiratory issues
-can not hold her facing out with arm pressure on her belly or she will vomit
-never had a completely solid stool - always diarrhea and liquid
-always had sensory focused personality - sensitive to touch, likes soft, etc. hates dirty diapers, wont eat if diaper is wet, etc
-change from breastfeeding to formula meant more alert happy baby but no change in stools
-history of crying and pain
recent changes:
-straining at time to poo even if diarrhea. acts in pain, constipation.
-stool smells acidic and burns her butt sometimes
-vomit has changed to be partially curdy
-stool often has two separate ‘stages’, a liquid stage first, and then a goopy solid portion 15+ minutes later
-horrible breath
-lots of hands in the mouth for sucking and putting things back until she gags
-no solids - periodic peach juice or smashed blueberry - yet stool stays same diarrhea
-spends the night fussy and up often after having any food
-often still just randomly chokes up stomach acid, but less projectile vomit
Our pediatric GI agreed it was time to look further. The radiologist had concern for colitis in her upper intestines, but the GI was not overly concerned. He said there would be more visible evidence in her stool (bleeding). It was time to take an internal look. He conducted a rectal scope and biopsy (happy birthday Ellie). The rectal scope looked great. Everything seemed to be in her upper intestines. He gave orders for stool sample tests and said to work on collecting them while waiting for the results of the biopsy. He recapped FPIES versus EE, and the idea that her specific problems could be in her esophagus. He mentioned a concern for sugar intolerance which he said was a secondary issue to FPIES, and why she could still be having trouble with the fruits. When I asked about Nutramigen AA (the formula being sent by the other FPIES mom) he said it was not one that he kept in the office, and the he would prefer she be on one that was designed more for a toddler nutritionally.
We left the appointment with instructions to try the elemental formula, samples of Elecare, a new reflux medicine, three large bags of stool sample kits, and instructions to wait for results of these additional tests. I took a deep breath, lots of notes, and made final preparations for Ellie's first birthday party in two days.
Hello FPIES, Goodbye Life As We Knew It
And so came and went the last week of July 2010. I spent this week moving between the stages of helplessness, frustration, and anger. I was grieving. After a couple of days reflecting on the appointment with the allergist, I was determined that my new life of advocating had begun and it was time to hit the internet for resources. I spent hours upon hours, late at night researching FPIES in hopes of determining if it was indeed the appropriate diagnosis and trying to understand what it meant. How in the world could an infant not eat protein? What exactly is food protein? The questions were limitless (and still are).
A great friend suggested I try facebook and Baby Center for resources, and I hit the jackpot. Who would have guessed? Not I! What I found were other moms desperate for answers. Some were worse than Elianna, terribly worse. The information was overwhelming and came rolling in by the encyclopedia full. These moms knew way more than the doctors. The reality of the diagnosis was setting in, as well as what it meant. I looked back at the last year and realized I had never really stopped to let it soak in. We have a special needs child. And the next week was her first birthday.
In the middle of all this I was planning a birthday party, which I soon discovered to be FPIES style and very common. No cake. No ice cream. No treats. No way to blow out a candle and no cute pictures of smashing the icing. I decided, most reluctantly, to embrace our new situation, and a 'fruit theme' it became. I poured over invitations, decorations, and gift ideas in an effort to make it a special day for her in spite of her condition. And I cried. No cake. No ice cream. No candle. I cried again.
I think this is probably a major transitional time for most FPIES families. It is when the reality hits if it hasn't already. For some reason the pediatric community sees 12 months old as being some magical age where 'real' food can be introduced and breastfeeding or formula no longer becomes as critical. Children are expected to begin eating, sitting at the table, and joining in. And they know. They want it, they reach for it, and they can't have it. This was affirmed by my visit to the allergist.
I neared the end of this reflective week. I had spent hours on my knees praying, as well as on the internet researching and making connections. My conclusion: FPIES it is, and not knowing was not acceptable. I made a return appointment for the GI where I knew someone was on my side. And I pleaded for help from a small handful of women I now 'knew' from the internet. I started a written medical journal for Ellie, going back through the last year and documented what I could. I wrote a summary of symptoms and changes, and then wrote a list of recent changes and current symptoms. What became clear is that she was not well. We had seen improvement with the change to Nutramigen Lipil, but we had not seen what I now know is called 'baseline'. She refused food because it meant pain, and we could not move forward. I had to make a plan because I could not sit and wait for the allergist who had never called. Life as we knew it must change whether we liked it or not - and I guarantee, none of us liked it. Now if we could just figure out how to move forward.
A great friend suggested I try facebook and Baby Center for resources, and I hit the jackpot. Who would have guessed? Not I! What I found were other moms desperate for answers. Some were worse than Elianna, terribly worse. The information was overwhelming and came rolling in by the encyclopedia full. These moms knew way more than the doctors. The reality of the diagnosis was setting in, as well as what it meant. I looked back at the last year and realized I had never really stopped to let it soak in. We have a special needs child. And the next week was her first birthday.
In the middle of all this I was planning a birthday party, which I soon discovered to be FPIES style and very common. No cake. No ice cream. No treats. No way to blow out a candle and no cute pictures of smashing the icing. I decided, most reluctantly, to embrace our new situation, and a 'fruit theme' it became. I poured over invitations, decorations, and gift ideas in an effort to make it a special day for her in spite of her condition. And I cried. No cake. No ice cream. No candle. I cried again.
I think this is probably a major transitional time for most FPIES families. It is when the reality hits if it hasn't already. For some reason the pediatric community sees 12 months old as being some magical age where 'real' food can be introduced and breastfeeding or formula no longer becomes as critical. Children are expected to begin eating, sitting at the table, and joining in. And they know. They want it, they reach for it, and they can't have it. This was affirmed by my visit to the allergist.
I neared the end of this reflective week. I had spent hours on my knees praying, as well as on the internet researching and making connections. My conclusion: FPIES it is, and not knowing was not acceptable. I made a return appointment for the GI where I knew someone was on my side. And I pleaded for help from a small handful of women I now 'knew' from the internet. I started a written medical journal for Ellie, going back through the last year and documented what I could. I wrote a summary of symptoms and changes, and then wrote a list of recent changes and current symptoms. What became clear is that she was not well. We had seen improvement with the change to Nutramigen Lipil, but we had not seen what I now know is called 'baseline'. She refused food because it meant pain, and we could not move forward. I had to make a plan because I could not sit and wait for the allergist who had never called. Life as we knew it must change whether we liked it or not - and I guarantee, none of us liked it. Now if we could just figure out how to move forward.
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.
And the Journey Continues
November 2009 through March/April of 2010 we continued with the pattern we had established, no questions asked. No more visible blood in Ellie's stool, and she continued to grow and measure in the 90 percentile. Vomiting continued, as did stool problems, but overall we didn't question it. The crying was less, the extreme pain seemed to be gone, and we just assumed what we had left was 'personality'. This view was encouraged by doctors, and I just resigned myself to having no clothing without stains.
We were instructed to delay the introduction of solids, starting at 6 months with rice cereal, and adding vegetables and fruits. Sounded pretty standard. At 8 or 9 months we could introduce cooked noodles, lean meats, and beans. The restrictions were: no milk or soy until after 1 year, no egg or tree nuts until after 2 years, and no peanuts, fish, or shellfish until after 3 years. "By postponing diet the introduction of food allergens, the development of food hypersensitivity is delayed in high-risk infants but this does not prevent the disorder". That final statement made me think that there was no hurry to get onto solids, so I figured we would wait until a year to introduce most. By April and 8 months of age, Elianna was still not sleeping through the night. She woke frequently, cried lots, ate a LOT of formula, and was a chubby, roley-poly baby. I decided that I had better introduce some food to help her sleep at night and make her feel more full.
I had no idea that this would quickly start our new adventure and change our lives forever.
We were instructed to delay the introduction of solids, starting at 6 months with rice cereal, and adding vegetables and fruits. Sounded pretty standard. At 8 or 9 months we could introduce cooked noodles, lean meats, and beans. The restrictions were: no milk or soy until after 1 year, no egg or tree nuts until after 2 years, and no peanuts, fish, or shellfish until after 3 years. "By postponing diet the introduction of food allergens, the development of food hypersensitivity is delayed in high-risk infants but this does not prevent the disorder". That final statement made me think that there was no hurry to get onto solids, so I figured we would wait until a year to introduce most. By April and 8 months of age, Elianna was still not sleeping through the night. She woke frequently, cried lots, ate a LOT of formula, and was a chubby, roley-poly baby. I decided that I had better introduce some food to help her sleep at night and make her feel more full.
I had no idea that this would quickly start our new adventure and change our lives forever.
Thursday, October 7, 2010
Once Upon A Time...
Ellie was born in August of 2009. We were sent home from the hospital with the instructions that she is 'just one of those babies that refluxes' and to 'be sure and lay her on her side' so that she does not 'choke or aspirate on her own vomit'. She was quiet and slept a lot. I found it interesting that I seemed to have had a second mellow baby. Breastfeeding was not going as well as it had the first time because she was having trouble latching and seemed to choke a lot, but the specialists reassured me that this would get better as she learned and my milk leveled out.
Home we went. Ellie continued to throw up, and it worsened. Half of her feedings ended up on the floor, my clothes, or whatever was around her. And the crying started. Her sleep was irregular, and there were times where there was no consoling her. Advice from friends and doctors told me that she was colicky, and that it was sensory. My mission was to figure out what was triggering her, what time of the day/night it was at it's worst, and in the meantime I hardly ever put her down. The pediatrician told me that there were now studies that showed infants who proved colicky had specific personality traits when they got older, and to brace myself for a less-compliant child than my first. She was just a more vocal and particular child.
Her sensory preferences were obvious. She wanted to sleep a specific way, with no light at all, and a specific blanket draped a particular way over her face. In fact, we have video of her at only a few hours old being wheeled into my hospital room while rubbing her cheek against the hospital blanket in the same way. I began the task of figuring out this little person's likes and dislikes in the hope of establishing a sleeping and eating pattern. A couple of months into charting the day I gave that up. Clearly she would not be a scheduled baby, and clearly this was personality. Right?
I wondered. I could not help but think that babies that cried all of the time truly had something going on inside of them, and that excusing it as personality was not acceptable to me. Next came the standard comments from other moms about attachment parenting versus whatever the other is called. My first born had wanted her space, but enjoyed snuggling. Ellie never seemed happy, but wanted to eat all the time and stopped crying most of the time when she was held. She sounded broken hearted if you denied her, and she was loud! Within the first couple of weeks my four year old asked if we could exchange her for a baby that didn't cry as much.
In the meantime we were in the doctor's office a lot, already. She was a squirmy baby who never stayed swaddled, and about 2 weeks old her umbilical cord prematurely tore off when it stuck to a swaddle blanket. It bled quite a bit and sent me into a panic. After a week it was goopy and still bleeding. It wasn't sealing off. The pediatrician said that it could herniate if left untreated, so we treated it with liquid nitrogen which turned it gray and icky.
At this point things get a little fuzzy, but I know that around 10 weeks old things changed. I started to notice her diapers were looking a little pink (blood) and that was unsettling. There was continued talk about my oversupply of milk and that it can cause digestive problems and the green funky poo that we had been seeing. And then one weekend we were at the mall. I went out of the store to change Ellie's diapers and when I opened it up I was horrified. It looked as if someone had dumped a melted red Popsicle into her diaper. I ripped off the outer diaper liner to see the absorbing material underneath. Yes! red! In a panic I called the doctors office and proceeded to go through half an hour of crazy conversations with advice nurses and determining if I needed to take her to the emergency room. No, she was not unconscious or passing large amounts. So it was decided I could wait until Monday.
Monday we headed in to the doctor, and the journey began. Meckles? Breastfeeding? Condition where the bowels kink and then straighten on their own? Our fantastic pediatrician wanted to be sure, and calmly tried to reassure me. Off to the pediatric gastroenterologist we went. And she wasnt even three months old.
Home we went. Ellie continued to throw up, and it worsened. Half of her feedings ended up on the floor, my clothes, or whatever was around her. And the crying started. Her sleep was irregular, and there were times where there was no consoling her. Advice from friends and doctors told me that she was colicky, and that it was sensory. My mission was to figure out what was triggering her, what time of the day/night it was at it's worst, and in the meantime I hardly ever put her down. The pediatrician told me that there were now studies that showed infants who proved colicky had specific personality traits when they got older, and to brace myself for a less-compliant child than my first. She was just a more vocal and particular child.
Her sensory preferences were obvious. She wanted to sleep a specific way, with no light at all, and a specific blanket draped a particular way over her face. In fact, we have video of her at only a few hours old being wheeled into my hospital room while rubbing her cheek against the hospital blanket in the same way. I began the task of figuring out this little person's likes and dislikes in the hope of establishing a sleeping and eating pattern. A couple of months into charting the day I gave that up. Clearly she would not be a scheduled baby, and clearly this was personality. Right?
I wondered. I could not help but think that babies that cried all of the time truly had something going on inside of them, and that excusing it as personality was not acceptable to me. Next came the standard comments from other moms about attachment parenting versus whatever the other is called. My first born had wanted her space, but enjoyed snuggling. Ellie never seemed happy, but wanted to eat all the time and stopped crying most of the time when she was held. She sounded broken hearted if you denied her, and she was loud! Within the first couple of weeks my four year old asked if we could exchange her for a baby that didn't cry as much.
In the meantime we were in the doctor's office a lot, already. She was a squirmy baby who never stayed swaddled, and about 2 weeks old her umbilical cord prematurely tore off when it stuck to a swaddle blanket. It bled quite a bit and sent me into a panic. After a week it was goopy and still bleeding. It wasn't sealing off. The pediatrician said that it could herniate if left untreated, so we treated it with liquid nitrogen which turned it gray and icky.
At this point things get a little fuzzy, but I know that around 10 weeks old things changed. I started to notice her diapers were looking a little pink (blood) and that was unsettling. There was continued talk about my oversupply of milk and that it can cause digestive problems and the green funky poo that we had been seeing. And then one weekend we were at the mall. I went out of the store to change Ellie's diapers and when I opened it up I was horrified. It looked as if someone had dumped a melted red Popsicle into her diaper. I ripped off the outer diaper liner to see the absorbing material underneath. Yes! red! In a panic I called the doctors office and proceeded to go through half an hour of crazy conversations with advice nurses and determining if I needed to take her to the emergency room. No, she was not unconscious or passing large amounts. So it was decided I could wait until Monday.
Monday we headed in to the doctor, and the journey began. Meckles? Breastfeeding? Condition where the bowels kink and then straighten on their own? Our fantastic pediatrician wanted to be sure, and calmly tried to reassure me. Off to the pediatric gastroenterologist we went. And she wasnt even three months old.
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