I think about updating this blog all the time. With everything we've been going through for the last 10 months, it feels like an entire lifetime since I've posted. This post has been a work in progress for months. Let me start from October (the last time I posted)...
In October, B started an actual daycare. Our in home nanny could no longer care for her, and needed to move on to a full time job. My husband and I were extremely worried about how she would do in a daycare setting. After all, it's not like she can avoid people and foods for the rest of her life. We knew that snack time, lunch time, and sticky fingers would pose a risk, and did our best to find a daycare that could work with us. We were very fortunate to have found a brand new in home daycare run by two sisters who were just coming out of careers as pediatric medical assistants. They found they loved playing with the children and making them smile, much more than weighing them and making them cry while holding them down for vaccinations. The sisters turned out to be miracle workers. I can not imagine how much different our life would be right now without this daycare. Within days of starting the daycare, B started napping easily... in a well lit room. As it turns out, she didn't need the black out curtains, or the box fan running to help lull her to sleep after all. The sisters were knowledgeable about food allergies, and prepared for the worst. They worked with us to allow us to bring all snacks, breast milk, and lunch in a cooler every day. They would ensure that her high chair was disinfected from any possible cross contamination, and that she would be the only one that slept in her bed. Cleaning products would be allergen free, hand soaps allergen free, and she would have her own designated bottles, cups and utensils.
As time went on, B grew more social, and looked forward to playing at daycare with the sisters. She started putting herself to sleep for nap time easily. This allowed us to make the transition from a nightly routine of patting her back to sleep for 30-90 minutes in the dark, to putting her to sleep in the pack and play at the beginning of the night. Our new routine began in February, as B transitioned out of her side-car crib, and into the pack and play at night at home. It went surprisingly well. After a day or two, she understood the routine had changed. We no longer had to wait up until 11pm or later for her to start crying before we finally could come to bed when I went in to "rescue" her and comfort her back to sleep. (We were always so afraid that going to bed we would wake her while getting in... so we would just wait up for the first time she inevitably woke up). This grew into her sleeping longer and longer at the beginning of the night. I would still bring her to bed with me once she woke, but we were all starting to get more sleep. A few times she even woke and put herself back to sleep! This felt like heaven after 22 months of constant night watch.
By her second birthday, she had finally slept through the night a handful of times. It gave my husband and I hope that she might start outgrowing some of her sleep issues. And it began the process of night weaning. After turning 2 in April, she was no longer nursing during the days. In October I finally stopped pumping at work. We successfully introduced goats milk, which alleviated the burden placed on me to nurse. In the spring, she had switched to drinking raw goats milk and almond milk without carrageenan in it during the days at daycare. Almond milk was a blessing, as it was easily $15-20 cheaper than raw goats milk per gallon.
Not everything was all roses though. We failed a salmon and an orange trial during that time, which meant that I had to eliminate those from my diet too. I wasn't doing a traditional elimination diet. Instead, I had been eating what I wanted, and only eliminating known fails as we encountered them. In May, we also lost shrimp, food dye and watermelon in one fell swoop. A birthday party for my nephew at my parents house put B in contact to all three on the same occasion. It was heartbreaking to jump to 10 failed foods. We were now at the point of which children start to begin outgrowing FPIES, and here we were losing 3 more foods. At this point, she could no longer have rice, turkey, coconut, cows milk, carrageenan, oranges, salmon, food dye, watermelon, or shellfish of any kind.
None the less, we chugged on, and at her annual follow up appointment with her allergist, we finally had the discussion about re trialing failed foods. The game plan is to retrail her foods in order of least symptomatic to most symptomatic, with one retrial per month pending no other failed foods in between. This would mean 10 months to retrial everything, as long as no new fails or old fails occurred again. This, is literally my worst nightmare. Intentionally give B something I know makes her sick? That doesn't sound like my idea of a good time. We had almost started to feel normal. Our new normal was getting easier. I was managing to make the same meal for each of us at dinner, and rotating through a diverse menu of foods that seemed to be healthy. Her sleep was getting better and better, and now we were getting more nights where she slept through than not! To be honest, retrials scare the hell out of me. But fear or not, we have to retrial at some point, and with her losing more and more foods, it was time to see if any of the old ones were starting to clear up. This was a good thing... it forced us to retrial salmon, which ended up being her first retrial pass! We were back down, with 9 to go.
Last month we had her first dentist appointment. Since B was a gummy bear up until that point last year, we figured 13 months with teeth meant it was time for a check up. What began as a regular appointment for a toddlers first check up, began the start of another major life change for us. We found that with the gradual switch to almond milk, and no other major sources of calcium, that B's teeth were starting to decay. She has 4 cavities on the back of her top front teeth. This in and of itself, is heartbreaking to any parent. My barely 2 year old child has cavities! We know it's not from excessive sugar or not brushing, as she doesn't get juice or sugar like most children. FPIES ensured that those would not be part of her childhood. Upon further research of cavities in toddlers, we discovered that toddlers who subsist on almond milk often have early tooth decay. Almond milk contains phytic acid, which blocks the bodies ability to absorb nutrients. So the "50% more calcium!" claim on the box is misleading if the other aspects of the milk keep you from benefiting from any added calcium.
The worst part is, the dentist wanted to do the fillings under anesthesia at the local children's hospital. Due to her age, and her FPIES, the complications of allergies makes it much harder for a dentist to treat such a small child with that many cavities. I won't lie, I had a full blown anxiety attack. I broke down, I cried, I felt like my heart was going to explode from racing so hard. The side effects and lasting impact of anesthesia in children under the age of 4 are significant. They can be long lasting, and cause significant issues with language and intelligence development. These were not things I was comfortable with.
In my quest to find an alternative, I scheduled a second opinion appointment with another pediatric dentist (out of our network) and started searching for ways to stop cavities in toddlers. It was then that I ran across the GAPS diet.
Wednesday, August 12, 2015
Tuesday, October 14, 2014
Global FPIES Day - October 14, 2014
There are literally thousands of diseases out there, and after all the ALS ice bucket challenges, I know people are tired of hearing about one more cause... but today is Global FPIES Day. For me, this is one that hits close to home, because our 17 month old daughter suffers from a very rare, and very serious disease called Food Protein Induced Enterocolitis Syndrome (FPIES). I'm not asking anyone to dump buckets of water on themselves, or to donate money to any cause. This year, what I'm asking for, is for people to hear our story and be aware of just how complicated this condition is.
We are one of thousands of parents around the globe who's children suffer from Food Protein Induced Enterocolitis Syndrome (FPIES). We are certainly not worse off than some families with this condition, but we're far from being a normal family. FPIES is a condition where our daughter suffers from an allergic type of reaction to the proteins in foods. All foods with any trace amounts of protein in them are a potential risk for her. This means that even fruits and veggies are a potential risk. To make it simple for most people, we say "she's allergic to...." In actuality, it's much more complicated than that. You see, FPIES isn't like a regular food allergy. It isn't detected with a blood test. The only way to know what foods are dangerous for our daughter to eat, are to give her each food on a special trial schedule, and pray that she doesn't react to it. But when she does.... oh boy, it's rough. Really rough. To give you a general idea of what we've been through, I'll start at the beginning. Yes, this is going to be long.
Brook is our pride and joy. We were so happy the day she was born, and I couldn't have asked for a better experience bringing her into this world. From the very first weeks of her life, Brook was a great baby. She didn't sleep great, but what baby does? She had crying periods, but not too bad. She loved to be held all the time, and would get super sweaty. She loved to be in just a diaper being held in front of a fan. Our little "northern" baby as we liked to joke. As the summer finally started to come, my mother in law came to stay with us for the summer. It was a relief to have help, as my husband was working graveyards, and as most people know, a new mommy doesn't get much sleep. Brook began to have crying jags, where she would just cry miserably, and so loud it was concerning. Which was odd for us, since she usually doesn't cry. Everything else seemed fine though, and all of her doctors appointments they said she was perfectly healthy, that it would just pass. Likely a little cholicy. At a few months old, we had a couple bloody diapers, and mucous in a few. We figured she was sick, and the pediatrician said she probably strained too hard. (If this is too much for you, I apologize, but baby poop is literally the center of our lives as FPIES parents, you'll understand why soon.)
By 6 months old, we were ready to introduce Brook to solid foods! I had been nursing exclusively up to this point, around the clock on demand. The break was to be a welcome one. We decided to try a "super food" and introduced avacado first. She didn't want anything to do with it. After several tries, we gave up since she wouldn't even swallow a bite. It's a good thing though, as we would later find out that avacado is one of the high risk foods for FPIES babies. We moved on to rice cereal, the classic standby "perfect first food." The first time Brook ate rice cereal, she did fine. She only ate a bite, so she seemed like she was able to tolerate it. The second day also went fine. On day three, about three hours after she ate it, she went to bed for the night. I of course, was still nursing her to sleep at this point. She was almost asleep, when she then projectile vomited all over me, the bed, and herself. Poor baby, she was miserable. Daddy held he for clean up, and about 20 min in, she proceeded to vomit again. Just the two times. Mind you, she had only had maybe 2 tsp of rice cereal, if that. I figured that her tummy was full, and that the nursing was just too much. We took a break from solids for about a week until her tummy seemed to go back to normal.
The next time we gave her rice cereal a week or so later, it happened again. So we took her to the pediatrician, and were told that she had a stomach bug. That she'd be fine. So we waited, and gave solids another break. Again, the next time we gave her rice cereal she projectile vomited. But this time, she had eaten quite a bit, she was now 7 months old. She proceeded to vomit every 15-20 min for about 2-3 hours. It was horrible. Like something out of the exorcist. (Really, if you imagine an infant going through a forceful choking vomiting session, it's NOT funny.) While holding her at the pediatricians office, she kept vomiting while we tried to find out what was going on. This time, the urgent care doctor thought she might have pyloric stenosis (where the lower part of the stomach narrows and becomes blocked by an enlarged muscle, causing a back up and not letting the food through the stomach into the intestines... it's more complicated than that, but needless to say also very scary). It would require surgery if she did indeed have it. We made a follow up appointment the next day with our pediatrician. He was well aware by now that we had been going through this on a regular basis. He had a different opinion though. He said that we might be looking at something called "FPIES" (pronounced F and pies like apple pies). Simply put, stop giving her rice cereal and move on to something else. If she does it again, we'll look into pyloric stenosis. If not, then she's basically "allergic to rice."
So we did. We moved on. We stopped giving her rice cereal. Her pediatrician gave us a hand out at her appointment saying that children this young are too difficult to test for food allergies, and the best solution is to just avoid the food. The hand out indicated that FPIES was tricky since it couldn't be tested by blood, but mostly by clinical observation of the symptoms. There isn't even a current diagnostic code for physicians to use. (It will be coming out in 2015!!!) And many pediatricians have never even heard of FPIES.
So we were careful moving on to new foods. Giving each new food careful observation when introduced by itself where nothing else new was given at the same time. She went from 7 months to 12 months without another reaction. It is so easy to feel like maybe it was all a mistake, or that nothing is really wrong with your child when you don't see the bigger picture. To be honest, I feel like a jerk. I didn't put the time and effort into researching FPIES and how to manage living with it, until we got her next failed food.
I went to visit some friends, and while I was out, I didn't think anything about letting Brook sip some coconut water from the bottle I was drinking. She'd never had it before, but I didn't think that a liquid could even pose a threat. That same day, she had turkey for the first time. That night about 8 hours later, she woke up projectile vomiting all over everything and everyone. It lasted for hours. HOURS. Every 15-30 min for about 5 hours straight. It was horrible. She wouldn't eat after that. She went a week without eating any solid foods at all. She would only nurse. I had once again become the sole source of her sustenance. She lost 2 lbs in a week. That may not seem like a lot, but when you only weigh 20 lbs, it is a considerable portion of your body weight. To make it worse, for two weeks following her violent reaction, she had horrible diapers. Mucous and a host of other issues that I won't go into. We went through a case of diapers in two weeks. I felt so confused. I didn't know what caused the reaction... the coconut, or the turkey?
I finally kicked myself into gear, and made a follow up appointment with an actual allergist and started doing the research I should have done months before. Her allergist was amazing. She answered all of our questions, and scheduled Brook right away for blood tests. She was too little for a skin test, so they needed to rule out any "real" allergies (the type that show up on a blood test). These tests are for Immunoglobulin E reactions to foods (IgE) and measure the blood level of IgE in response to common food allergies. The IgE antibodies are proteins made by the immune system that attack antigens, such as bacteria, viruses, and allergens. So the more there are, the more likely you are to be allergic to something. But FPIES isn't an IgE response to foods. FPIES is entirely gastrointestinal and is one of many autonomic nervous system dysfunction disorders. This test, would tell us if she had regular food allergies (the kind you treat with an epipen).
The tests were horrible... three people holding her down while screaming as they missed the vein over and over again at two different labs. After an entire morning attempting to draw blood intravenously from our poor 13 month old, they were finally able to complete the test at the children's hospital by taking it from the vein in the back of her hand. The test came back negative for everything. This was good. This meant we didn't have any IgE mediated allergies... no allergies requiring an epipen, and narrowed it down to FPIES. The specialist then met with us for a follow up, to discuss food trials for an FPIES diagnosis and how to proceed moving forward.
There are two groups of symptoms for FPIES. Acute, which are the violent reactions that tell you something is definitely wrong (vomiting, diarrhea, blood or mucous in the stool, foul smelling stool, dehydration, lethargy, shock, weight loss, failure to thrive, hypothermia, hypo tension, abdominal distension, etc.) and then there are chronic symptoms that if you didn't know to look for them, would appear to be just an ill child or one that is "fussy." The chronic symptoms were the ones we knew nothing about. Poor sleeping habits (not just your regular 2-4 wake ups a night, but 10+ each night for MONTHS on end). Chronic hiccups. Eczema type rashes. Sweating. Crying uncontrollably for no apparent reason. Arching her back in pain/discomfort like something is wrong with her stomach. Stomach distension. Moody/irritable. In other words, the symptoms of FPIES had been staring us in the face since the early months after she was born.
As it turns out, Brook has been reacting to the foods that I am eating, through my breast milk. So, I stopped eating rice, turkey, coconut. She started sleeping slightly better. (Not great, but better). She was happier. Things were looking up. Each new food goes through a full two week trial period. She has to trial the food for a full week, then take a short break of three days, then three to four days on again. If she reacts with any acute symptoms, we have to pull the food. If she reacts with two or more chronic symptoms, we have to either push through the pain or pull the food. To make it even more complicated, and here's the real kicker, FPIES has a nifty little trick where if she fails a food (has a reaction) or becomes violently ill with a gastrointestinal sickness, any of the safe foods prior to that time can now pose a threat again. The lining of the intestine basically makes it fair game for reactions again. This is maddening for a mom who wants to wean her toddler on to solid foods. It's like Russian roulette with food.
Since that time, we've discovered she reacts also to straight cows milk (but not to yogurt or cheese, since the proteins in them are broken down enough to not trigger the FPIES symptoms) as well as carrageenan (it's derived from seaweed and in almost every dairy product you can think of). Needless to say, cutting out rice and cows milk are the two hardest for me.
Eating out poses a threat. Eating from anywhere that I didn't make the food myself poses a threat. Did you know that restaurants often put rice in the salt shaker to prevent clumping? Or that pasta, french fries, bread, and other common carb foods are often coated in rice flour to prevent sticking? It's not on the label either, since it's not an ingredient IN the food. Not to mention how dairy is in everything... Reading the labels on foods is not enough. You can see now how FPIES can make eating a stressful event. Many parents in the FPIES support network talk about what we call "accidental exposures" from foods that don't fully list the ingredients. Turns out Brook reacts to rice based maltodextrin too. We quickly found out that taco seasoning contains maltodexrin from one of my favorite places to eat. Rice vinegar, rice flour, rice based maltodextrin... you can see how anything derived from one of her many allergies can become another food she can't eat. In addition, FPIES has shown that if you react to a specific food (like rice for example) that you're likely to react to other foods in that same food family.... so for us, grains are a high risk food. Since she failed turkey, poultry meats are a high risk food.
It's hard enough getting a toddler to eat, let alone having them only eat off of a pre-selected menu of fruits and veggies. (Try to imagine getting a toddler to eat broccoli every day for two weeks!) I can't just feed my kid something on the go. Any time we go anywhere, we have to plan to feed her. Even if it's not a meal time, we have to prepare to have a snack ready. I have to follow her around making sure that she doesn't grab a potentially unsafe food from someone else, or off of the floor. Toddlers put everything into their mouths. Unvaccuumed floors are dangerous for kids with FPIES. I have to be careful not to eat anything with her unsafe foods as well since she's still nursing. This makes family gatherings, parties, and holidays much more difficult for us. On top of all this, I get "the look" from people because I'm still breastfeeding a 17 month old. Yep, I've got reasons I just don't feel like telling every person in the world about. I'm doing what I have to do, to keep my girl growing and fed.
We are lucky in some respects. There are families out there with NO safe foods, where their little ones react to every solid food they have tried. These same children get put on horrible tasting elemental formulas or IV drip feedings. The icing on the FPIES cake is that this disease is misdiagnosed, and often unheard of by many pediatricians. Children can go months, even years, without proper medical attention and care. We were lucky that our pediatrician had heard of it. Most children will outgrow this. Some will not. For now, please just know that if you invite us over and we decline, it's not you, it's FPIES. I know this was a book, and that most people won't read all of it. But if you did, thank you for taking the time to try to understand what we are going through. Today is Global FPIES Day. This is the one day of the year where I will openly post about this to let people know what Brook is going through.
Videos to watch for more information:
We are one of thousands of parents around the globe who's children suffer from Food Protein Induced Enterocolitis Syndrome (FPIES). We are certainly not worse off than some families with this condition, but we're far from being a normal family. FPIES is a condition where our daughter suffers from an allergic type of reaction to the proteins in foods. All foods with any trace amounts of protein in them are a potential risk for her. This means that even fruits and veggies are a potential risk. To make it simple for most people, we say "she's allergic to...." In actuality, it's much more complicated than that. You see, FPIES isn't like a regular food allergy. It isn't detected with a blood test. The only way to know what foods are dangerous for our daughter to eat, are to give her each food on a special trial schedule, and pray that she doesn't react to it. But when she does.... oh boy, it's rough. Really rough. To give you a general idea of what we've been through, I'll start at the beginning. Yes, this is going to be long.
Brook is our pride and joy. We were so happy the day she was born, and I couldn't have asked for a better experience bringing her into this world. From the very first weeks of her life, Brook was a great baby. She didn't sleep great, but what baby does? She had crying periods, but not too bad. She loved to be held all the time, and would get super sweaty. She loved to be in just a diaper being held in front of a fan. Our little "northern" baby as we liked to joke. As the summer finally started to come, my mother in law came to stay with us for the summer. It was a relief to have help, as my husband was working graveyards, and as most people know, a new mommy doesn't get much sleep. Brook began to have crying jags, where she would just cry miserably, and so loud it was concerning. Which was odd for us, since she usually doesn't cry. Everything else seemed fine though, and all of her doctors appointments they said she was perfectly healthy, that it would just pass. Likely a little cholicy. At a few months old, we had a couple bloody diapers, and mucous in a few. We figured she was sick, and the pediatrician said she probably strained too hard. (If this is too much for you, I apologize, but baby poop is literally the center of our lives as FPIES parents, you'll understand why soon.)
By 6 months old, we were ready to introduce Brook to solid foods! I had been nursing exclusively up to this point, around the clock on demand. The break was to be a welcome one. We decided to try a "super food" and introduced avacado first. She didn't want anything to do with it. After several tries, we gave up since she wouldn't even swallow a bite. It's a good thing though, as we would later find out that avacado is one of the high risk foods for FPIES babies. We moved on to rice cereal, the classic standby "perfect first food." The first time Brook ate rice cereal, she did fine. She only ate a bite, so she seemed like she was able to tolerate it. The second day also went fine. On day three, about three hours after she ate it, she went to bed for the night. I of course, was still nursing her to sleep at this point. She was almost asleep, when she then projectile vomited all over me, the bed, and herself. Poor baby, she was miserable. Daddy held he for clean up, and about 20 min in, she proceeded to vomit again. Just the two times. Mind you, she had only had maybe 2 tsp of rice cereal, if that. I figured that her tummy was full, and that the nursing was just too much. We took a break from solids for about a week until her tummy seemed to go back to normal.
The next time we gave her rice cereal a week or so later, it happened again. So we took her to the pediatrician, and were told that she had a stomach bug. That she'd be fine. So we waited, and gave solids another break. Again, the next time we gave her rice cereal she projectile vomited. But this time, she had eaten quite a bit, she was now 7 months old. She proceeded to vomit every 15-20 min for about 2-3 hours. It was horrible. Like something out of the exorcist. (Really, if you imagine an infant going through a forceful choking vomiting session, it's NOT funny.) While holding her at the pediatricians office, she kept vomiting while we tried to find out what was going on. This time, the urgent care doctor thought she might have pyloric stenosis (where the lower part of the stomach narrows and becomes blocked by an enlarged muscle, causing a back up and not letting the food through the stomach into the intestines... it's more complicated than that, but needless to say also very scary). It would require surgery if she did indeed have it. We made a follow up appointment the next day with our pediatrician. He was well aware by now that we had been going through this on a regular basis. He had a different opinion though. He said that we might be looking at something called "FPIES" (pronounced F and pies like apple pies). Simply put, stop giving her rice cereal and move on to something else. If she does it again, we'll look into pyloric stenosis. If not, then she's basically "allergic to rice."
So we did. We moved on. We stopped giving her rice cereal. Her pediatrician gave us a hand out at her appointment saying that children this young are too difficult to test for food allergies, and the best solution is to just avoid the food. The hand out indicated that FPIES was tricky since it couldn't be tested by blood, but mostly by clinical observation of the symptoms. There isn't even a current diagnostic code for physicians to use. (It will be coming out in 2015!!!) And many pediatricians have never even heard of FPIES.
So we were careful moving on to new foods. Giving each new food careful observation when introduced by itself where nothing else new was given at the same time. She went from 7 months to 12 months without another reaction. It is so easy to feel like maybe it was all a mistake, or that nothing is really wrong with your child when you don't see the bigger picture. To be honest, I feel like a jerk. I didn't put the time and effort into researching FPIES and how to manage living with it, until we got her next failed food.
I went to visit some friends, and while I was out, I didn't think anything about letting Brook sip some coconut water from the bottle I was drinking. She'd never had it before, but I didn't think that a liquid could even pose a threat. That same day, she had turkey for the first time. That night about 8 hours later, she woke up projectile vomiting all over everything and everyone. It lasted for hours. HOURS. Every 15-30 min for about 5 hours straight. It was horrible. She wouldn't eat after that. She went a week without eating any solid foods at all. She would only nurse. I had once again become the sole source of her sustenance. She lost 2 lbs in a week. That may not seem like a lot, but when you only weigh 20 lbs, it is a considerable portion of your body weight. To make it worse, for two weeks following her violent reaction, she had horrible diapers. Mucous and a host of other issues that I won't go into. We went through a case of diapers in two weeks. I felt so confused. I didn't know what caused the reaction... the coconut, or the turkey?
I finally kicked myself into gear, and made a follow up appointment with an actual allergist and started doing the research I should have done months before. Her allergist was amazing. She answered all of our questions, and scheduled Brook right away for blood tests. She was too little for a skin test, so they needed to rule out any "real" allergies (the type that show up on a blood test). These tests are for Immunoglobulin E reactions to foods (IgE) and measure the blood level of IgE in response to common food allergies. The IgE antibodies are proteins made by the immune system that attack antigens, such as bacteria, viruses, and allergens. So the more there are, the more likely you are to be allergic to something. But FPIES isn't an IgE response to foods. FPIES is entirely gastrointestinal and is one of many autonomic nervous system dysfunction disorders. This test, would tell us if she had regular food allergies (the kind you treat with an epipen).
The tests were horrible... three people holding her down while screaming as they missed the vein over and over again at two different labs. After an entire morning attempting to draw blood intravenously from our poor 13 month old, they were finally able to complete the test at the children's hospital by taking it from the vein in the back of her hand. The test came back negative for everything. This was good. This meant we didn't have any IgE mediated allergies... no allergies requiring an epipen, and narrowed it down to FPIES. The specialist then met with us for a follow up, to discuss food trials for an FPIES diagnosis and how to proceed moving forward.
There are two groups of symptoms for FPIES. Acute, which are the violent reactions that tell you something is definitely wrong (vomiting, diarrhea, blood or mucous in the stool, foul smelling stool, dehydration, lethargy, shock, weight loss, failure to thrive, hypothermia, hypo tension, abdominal distension, etc.) and then there are chronic symptoms that if you didn't know to look for them, would appear to be just an ill child or one that is "fussy." The chronic symptoms were the ones we knew nothing about. Poor sleeping habits (not just your regular 2-4 wake ups a night, but 10+ each night for MONTHS on end). Chronic hiccups. Eczema type rashes. Sweating. Crying uncontrollably for no apparent reason. Arching her back in pain/discomfort like something is wrong with her stomach. Stomach distension. Moody/irritable. In other words, the symptoms of FPIES had been staring us in the face since the early months after she was born.
As it turns out, Brook has been reacting to the foods that I am eating, through my breast milk. So, I stopped eating rice, turkey, coconut. She started sleeping slightly better. (Not great, but better). She was happier. Things were looking up. Each new food goes through a full two week trial period. She has to trial the food for a full week, then take a short break of three days, then three to four days on again. If she reacts with any acute symptoms, we have to pull the food. If she reacts with two or more chronic symptoms, we have to either push through the pain or pull the food. To make it even more complicated, and here's the real kicker, FPIES has a nifty little trick where if she fails a food (has a reaction) or becomes violently ill with a gastrointestinal sickness, any of the safe foods prior to that time can now pose a threat again. The lining of the intestine basically makes it fair game for reactions again. This is maddening for a mom who wants to wean her toddler on to solid foods. It's like Russian roulette with food.
Since that time, we've discovered she reacts also to straight cows milk (but not to yogurt or cheese, since the proteins in them are broken down enough to not trigger the FPIES symptoms) as well as carrageenan (it's derived from seaweed and in almost every dairy product you can think of). Needless to say, cutting out rice and cows milk are the two hardest for me.
Eating out poses a threat. Eating from anywhere that I didn't make the food myself poses a threat. Did you know that restaurants often put rice in the salt shaker to prevent clumping? Or that pasta, french fries, bread, and other common carb foods are often coated in rice flour to prevent sticking? It's not on the label either, since it's not an ingredient IN the food. Not to mention how dairy is in everything... Reading the labels on foods is not enough. You can see now how FPIES can make eating a stressful event. Many parents in the FPIES support network talk about what we call "accidental exposures" from foods that don't fully list the ingredients. Turns out Brook reacts to rice based maltodextrin too. We quickly found out that taco seasoning contains maltodexrin from one of my favorite places to eat. Rice vinegar, rice flour, rice based maltodextrin... you can see how anything derived from one of her many allergies can become another food she can't eat. In addition, FPIES has shown that if you react to a specific food (like rice for example) that you're likely to react to other foods in that same food family.... so for us, grains are a high risk food. Since she failed turkey, poultry meats are a high risk food.
It's hard enough getting a toddler to eat, let alone having them only eat off of a pre-selected menu of fruits and veggies. (Try to imagine getting a toddler to eat broccoli every day for two weeks!) I can't just feed my kid something on the go. Any time we go anywhere, we have to plan to feed her. Even if it's not a meal time, we have to prepare to have a snack ready. I have to follow her around making sure that she doesn't grab a potentially unsafe food from someone else, or off of the floor. Toddlers put everything into their mouths. Unvaccuumed floors are dangerous for kids with FPIES. I have to be careful not to eat anything with her unsafe foods as well since she's still nursing. This makes family gatherings, parties, and holidays much more difficult for us. On top of all this, I get "the look" from people because I'm still breastfeeding a 17 month old. Yep, I've got reasons I just don't feel like telling every person in the world about. I'm doing what I have to do, to keep my girl growing and fed.
We are lucky in some respects. There are families out there with NO safe foods, where their little ones react to every solid food they have tried. These same children get put on horrible tasting elemental formulas or IV drip feedings. The icing on the FPIES cake is that this disease is misdiagnosed, and often unheard of by many pediatricians. Children can go months, even years, without proper medical attention and care. We were lucky that our pediatrician had heard of it. Most children will outgrow this. Some will not. For now, please just know that if you invite us over and we decline, it's not you, it's FPIES. I know this was a book, and that most people won't read all of it. But if you did, thank you for taking the time to try to understand what we are going through. Today is Global FPIES Day. This is the one day of the year where I will openly post about this to let people know what Brook is going through.
Videos to watch for more information:
Links for more information about FPIES:
Friday, September 5, 2014
The End is Near
We're about to get really real in here. Let's talk nipples. Yep, I'm going there. In the last 16+ months, I have had a few times where nursing has been horrifically painful. The first weeks, which is natural as the body adjusts and your nipples get calloused and toughen up for the year ahead. Then when I had a milk blister. It was horrible, and you can read all about them here (http://kellymom.com/bf/concerns/mother/nipplebleb/). Again, when she went through a growth spurt around 9 and 12 month marks. Now, at 16 months, I fear my child is trying to bite my nipples off.
She is both teething with a molar and must be going through yet another growth spurt at the same time. I'm bleeding, cracked, and the skin is literally peeling off the tip of my nipples. The outer later of skin on the tip of the nipple has turned white around the edges of the bloody scabs and I have teeth marks that are not fading or going away. She's been latching funny lately, and is "nipple nursing" where she only takes the nipple just between her teeth, and sucks so hard while biting down with both the top and bottom teeth, that I feel like I've had my nipples in a vise. I imagine the sucking sensation helps alleviate the pressure in her mouth from the molar coming in.
To make it worse, since this has now been going on for 6 days, the breast tissue around the nipple is so sore that wearing a bra is painful. Wearing anything is painful. But, I can't parade around without one at work, or even at home (she'll then think it's time to nurse). The pain is so severe, that I have lost the ability to tell if it's from the raw skin, the teeth, or just from the bruised breast tissue. I can no longer distinguish if she's nursing correctly, or not. It feels like white hot lightening every time she latches, and like I'm being electrocuted throughout the nursing session. The nights are the worst, since she still wakes frequently, refuses to go back to sleep without nursing, and wants to stay on the breast for hours at a time.
I have come to the very sad conclusion, that this may very well be the end of breastfeeding for me. I had hoped to let her self wean, which had been going well, especially with me at work 40 hours a week. However, I had planned to keep nursing her to sleep, and upon wake up, as long as she wanted it (and wished that she'd just start sleeping through the night and not need to nurse to go back to sleep). Clearly, that isn't working out. The pain is too intense. When you're crying while nursing your child to sleep, trying to bite back any sobs of pain so that she'll just. go. to. sleep. Then you know you are in a losing battle. I'm so not emotionally ready to be done, but I think physically I'm at the end of my rope.
She is both teething with a molar and must be going through yet another growth spurt at the same time. I'm bleeding, cracked, and the skin is literally peeling off the tip of my nipples. The outer later of skin on the tip of the nipple has turned white around the edges of the bloody scabs and I have teeth marks that are not fading or going away. She's been latching funny lately, and is "nipple nursing" where she only takes the nipple just between her teeth, and sucks so hard while biting down with both the top and bottom teeth, that I feel like I've had my nipples in a vise. I imagine the sucking sensation helps alleviate the pressure in her mouth from the molar coming in.
To make it worse, since this has now been going on for 6 days, the breast tissue around the nipple is so sore that wearing a bra is painful. Wearing anything is painful. But, I can't parade around without one at work, or even at home (she'll then think it's time to nurse). The pain is so severe, that I have lost the ability to tell if it's from the raw skin, the teeth, or just from the bruised breast tissue. I can no longer distinguish if she's nursing correctly, or not. It feels like white hot lightening every time she latches, and like I'm being electrocuted throughout the nursing session. The nights are the worst, since she still wakes frequently, refuses to go back to sleep without nursing, and wants to stay on the breast for hours at a time.
I have come to the very sad conclusion, that this may very well be the end of breastfeeding for me. I had hoped to let her self wean, which had been going well, especially with me at work 40 hours a week. However, I had planned to keep nursing her to sleep, and upon wake up, as long as she wanted it (and wished that she'd just start sleeping through the night and not need to nurse to go back to sleep). Clearly, that isn't working out. The pain is too intense. When you're crying while nursing your child to sleep, trying to bite back any sobs of pain so that she'll just. go. to. sleep. Then you know you are in a losing battle. I'm so not emotionally ready to be done, but I think physically I'm at the end of my rope.
Thursday, August 7, 2014
Going Paleo
With our daughter's food allergies becoming more and more evident with every new solid food we introduce, we are clearly in need of drastic change in our diet. Since I'm still nursing, that means I've had to cut out rice (and all rice derived foods including maltodexterin), turkey, coconut, cows milk and carrageenan. Foods that contain these in any form trigger her FPIES, and make it so that she has a miserable time (and potentially weeks of pain). Her poor little tummy can't take it. So that means mommy needs to suck it up, cause if you can't beat 'em, you have to join 'em.
We've decided to go Paleo. Yes, I'm well aware that the "Paleo Fad" has it's ups and downs. My husband and I have put a lot of time and energy into reading up on the Paleolithic diet (Paleo for short) over the last few weeks. Given the FPIES confirmation from her allergist, the Paleo diet seems to be one of the healthiest options for cutting out potentially hidden triggers that are in almost all foods in the United States. Paleo will allow us to cut the crap (pardon my language) without cutting out nutrition.
This means we are now a dairy free, grain free, and sugar free home. We've started making the transition slowly into buying grass fed organic meats (hey, I'm not stupid, I still have a freezer full of chicken I know she can eat that we will continue to use until it's gone.) We've stopped buying noodles, potatoes, corn, and bread. We have started making sure every meal has lean proteins in moderate proportions with plenty of veggies. We've made sure we have a balanced intake of fruit so that we don't end up with any issues with excess fructose. We've started snacking on nuts and seeds (limited since they are high in fat). It's been 4 days and I'm already feeling a difference. So far, it hasn't had a direct affect on my milk supply.
In regards to paleo and nursing, they can be very compatible and clearly mankind survived and thrived from the cave man time, so they must have been able to produce milk just fine on a more natural diet. However, any body that makes a change this drastic will likely see a dip in supply. As a result, I'm planning to make sure to do the following:
1. Keep my water intake high. I already don't drink soda, juice, coffee, or any caffeinated drink, so water is my main go to. Now that I'm cutting out milk, I'll be making sure to replace my milk consumption with water.
2. Snack! One of the best parts about the paleo diet, is that it doesn't claim to be a diet, but a lifestyle change. This means that you aren't supposed to be hungry. If you're hungry, you're doing it wrong! So when I get hungry, I have a light snack... fruit, nuts, seeds, veggies, dried fruits, home made lara bars.... I'm learning that I love almond butter on celery or apple slices!
3. Perspective: This is not a no carb/low carb diet. I'll be eating healthy carbs (not those nasty starchy, processed carbs that my body clearly can't handle well). Fresh local fruits and veggies. Plenty of squash and yummy sweet potatoes. I'll be replacing the bad fats I had been eating, with good ones that will add nutrients to my milk supply.
4. Continue to eat galactagogues: I'll be eating ones that are Paleo. (Nuts, flax, fennugreek, dark leafy greens, carrots, tahini, garlic, papaya, asparagus, figs, apricots, dates, salmon!)
But what about your daughter, isn't she going to starve, surely every child needs grains!? (I hear you asking this!) There are a lot of things about our daughter that aren't in line with what you would need to feed a typical toddler. Grains cause her considerable pain and a wide variety of symptoms. As a result, we have to be creative, and make sure to provide the maximum nutrition to her as possible. Even without going paleo, her diet is already severely restricted. This diet just ensures that I'm eating foods she can eat safely through me, and that she's eating foods that are free of processed ingredients.
This means I'll be continuing to breastfeed on demand throughout the night, and then three times a day (wake up, mid-day, and before bed) in addition to the solid foods she gets. I'm continuing to pump during my lunch break at work so that I can ensure she has a bottle for nap time when I'm at work. Don't worry, she'll be well fed, but allergen free. Some of the best benefits of paleo for children with FPIES can be a decrease in gas, rashes, hiccups, general stomach cramping, and better sleeping! (Oh God, that last one sounds sooooo good.) Essentially, it's worth trying since what we're currently doing hasn't been working.
Monday, July 14, 2014
FPIES Sucks... A lesson in accidental exposure
As I’m beginning to learn, FPIES really sucks. Last night we had an accidental exposure to rice. We thought we’d be safe going out for fast food, and just ordering something that didn't have rice in it. Well, apparently, after calling the company HQ and asking for a breakdown of the ingredients in the sauce, rice flour is used in the making of the flour tortilla we ingested (edit: and found out the maltodexterin was rice based as well). My poor baby had a very bad night. Took almost 2 hours to go to bed (when she was clearly tired), was overly fussy, woke up about 20+ times, had gas and tummy pain throughout the night, and hiccups on and off all morning. Needless to say, I feel guilty not being as vigilant as I should have been. I feel terrible that I was too tired to cook, and the shortcut came at the cost of our daughter’s comfort and health. Unfortunately, today was supposed to be day 1 of the break in our corn trial, so now I might get mixed symptoms when we start back up in a couple days. This contamination thing is no joke. If I eat rice, or anything with rice, she gets it through nursing. If she eats rice, or anything with rice, she gets sick. It just feels so very unfair to see her go through this over and over again.
Our follow up appointment is coming up next week. I feel very frustrated and at a loss for what to ask the allergist. Where do I even begin? I feel like I don’t even know what to ask. This feeling of being helpless is frustrating, and makes it hard to enjoy “living in the moment” with my sweet little girl, when all I do is stress about her food… is she getting enough, too much of what she can have, are we causing eating problems in the future, will she have weight issues, will she have food aversions because we limited what she could eat at such a young age, will she gain weight, lose weight, ever stop nursing….. not to mention all the questions about trying to understand her condition, and what it is we should be doing to help her. Today is just a frustrating kind of day.
Our follow up appointment is coming up next week. I feel very frustrated and at a loss for what to ask the allergist. Where do I even begin? I feel like I don’t even know what to ask. This feeling of being helpless is frustrating, and makes it hard to enjoy “living in the moment” with my sweet little girl, when all I do is stress about her food… is she getting enough, too much of what she can have, are we causing eating problems in the future, will she have weight issues, will she have food aversions because we limited what she could eat at such a young age, will she gain weight, lose weight, ever stop nursing….. not to mention all the questions about trying to understand her condition, and what it is we should be doing to help her. Today is just a frustrating kind of day.
Saturday, July 5, 2014
The Allergist
Thursday morning was our daughter's first appointment with the allergist we were referred to for her rare food allergies. The allergist agrees that it's likely Food Protein Induced Enterocolitis Syndrome (FPIES) but wanted to rule out any regular IgE mediated allergies by doing a blood test for a full allergy panel to include rice, turkey, avocado, dairy, soy, eggs, nuts, and a whole slew of other things that she usually does on an FPIES kid food panel screening (she's familiar with it!!!) For us, this is a good thing, as knowing if she has a "traditional" food allergy on top of the FPIES ones will help us to not confuse the symptoms. As I understand (I'm still very new to FPIES, so please don't shoot me if this is wrong!) a traditional IgE mediated allergy shows up by blood test. The Immunoglobulin E (IgE) is a type of antibody that is present in the blood and binds to allergens. So when a trigger food is introduced, you see a response in the blood. You're able to know there is a reaction for sure... so this can cause all kinds of reactions.... itching, rashes, closed airways, wheezing, swelling, etc. Everything you think of when you think of a food allergy. Since FPIES is NOT an IgE mediated allergy, in theory, when these foods are all tested, there shouldn't be any response at all from the IgE in the blood. If there is, then we know she is potentially dealing with two separate types of food allergies. We don't believe this is the case, so our allergist expects to get back a "clean" panel telling us that she isn't allergic to anything in the traditional sense. (That tricky FPIES!)
Our allergist wanted us to get the blood test done right away. We were sent to the blood lab at Qwest Diagnostics, and they attempted to get blood from her arm... it didn't go well, and I can't imagine how it could have gone worse. They had my husband restrain arms and body her while holding her, while I attempted to help hold down her legs, at the same time as trying to (poorly) calm her down by singing, talking to her and various distraction techniques that all failed horribly. She was screaming before they even got a needle into her arm. Just trying to find the vein she was already crying hard enough to work up a sweat. By the way, this is clearly torture to a parent to have to put their child through this. Knowing that you need to have a test done, but that it's going to cause pain, anxiety, and fear in your child is one of the worst feelings I've ever had as a parent.
They couldn't get the blood from her first arm after struggling for about 8 minutes. SO they tried the other arm.... after 10 more minutes of wiggling the needle around in her arm, while she screamed and sobbed hysterically (all while we were restraining her arms, legs, body and head...) we told them to stop. We couldn't take it anymore, and they clearly couldn't find the vein. It was evident to both of us that they were not trained to do a blood draw on a 14 month old baby. We ended up being referred to a local Children's Hospital about 40 minutes away for their special lab equipment. They have a special light that you put under a baby's arm so you can see the vein through their arm or hand.
They were great! They just looked at her arms first, and knew right away that it would be too difficult; instead, they ended up taking blood from the vein in the back of her hand. She was drenched with sweat and tears by the time it was over. The hospital staff was great though. Once they got the needle in the vein, she calmed down to me making animal sounds for her (what does the duck say? quack, quack, quack...) She was so terrified of all the people, being held down, and the equipment. I felt so guilty afterward I went and got her safe snacks that she likes, and a new touch and feel book, took her home, and finally was able to nurse her right to sleep in about 10 minutes.
The good news is that it's done and over with, and we should have the results in a week or so.... here's hoping we don't have IgE allergies on top of FPIES.
Our allergist wanted us to get the blood test done right away. We were sent to the blood lab at Qwest Diagnostics, and they attempted to get blood from her arm... it didn't go well, and I can't imagine how it could have gone worse. They had my husband restrain arms and body her while holding her, while I attempted to help hold down her legs, at the same time as trying to (poorly) calm her down by singing, talking to her and various distraction techniques that all failed horribly. She was screaming before they even got a needle into her arm. Just trying to find the vein she was already crying hard enough to work up a sweat. By the way, this is clearly torture to a parent to have to put their child through this. Knowing that you need to have a test done, but that it's going to cause pain, anxiety, and fear in your child is one of the worst feelings I've ever had as a parent.
They couldn't get the blood from her first arm after struggling for about 8 minutes. SO they tried the other arm.... after 10 more minutes of wiggling the needle around in her arm, while she screamed and sobbed hysterically (all while we were restraining her arms, legs, body and head...) we told them to stop. We couldn't take it anymore, and they clearly couldn't find the vein. It was evident to both of us that they were not trained to do a blood draw on a 14 month old baby. We ended up being referred to a local Children's Hospital about 40 minutes away for their special lab equipment. They have a special light that you put under a baby's arm so you can see the vein through their arm or hand.
They were great! They just looked at her arms first, and knew right away that it would be too difficult; instead, they ended up taking blood from the vein in the back of her hand. She was drenched with sweat and tears by the time it was over. The hospital staff was great though. Once they got the needle in the vein, she calmed down to me making animal sounds for her (what does the duck say? quack, quack, quack...) She was so terrified of all the people, being held down, and the equipment. I felt so guilty afterward I went and got her safe snacks that she likes, and a new touch and feel book, took her home, and finally was able to nurse her right to sleep in about 10 minutes.
The good news is that it's done and over with, and we should have the results in a week or so.... here's hoping we don't have IgE allergies on top of FPIES.
Monday, June 23, 2014
12 Months and More
I finally made it to a year of breast feeding! I'm so proud of myself that I didn't have to supplement at all over the last year. Don't get me wrong, there were plenty of times where I was ready to throw in the towel. I was so ecstatic when I hit that one year mark... but sadly, that excitement wasn't shared by anyone else in my life. It seems as if, the moment you hit one year, everyone around you starts asking when you're going to stop. As if, turning one, means that all the sudden you must switch to cows milk, wean your baby, and never look back. I was being asked at least 2-3 times a week by various co workers, relatives, and friends, if I planned to wean, and when. When did this become anyone's business? When did people start to care so much about when my baby would stop drinking milk from my breasts, and what my plans were for stopping. That seems so absurd to me. Minimal to no support throughout the entire year, and here everyone is, all of the sudden vested in when my output will end.
Well, as it turns out, we will likely be breastfeeding much longer than what I had originally anticipated. Not for her comfort (per say), or for my own desires. We have recently found out that our daughter has a rare food allergy called Food Protein Induced Enterocolitis Syndrome (called FPIES - like the letter F and apple pies). This very rare food allergy is not your typical food allergy. No ma'am, it is the kind that makes you hate feeding your child. As we started to transition our daughter from being primarily fed on breast milk, to eating more and more solid foods, we found out that our daughter is allergic to rice. Yes, rice. That isn't a typo. I've heard from so many people that it's not possible to be allergic to rice. I've even had doctors tell me this. Our pediatrician first suggested it, and we are headed to visit an allergist/specialist in the coming weeks. For those of you unfamiliar with FPIES (like I was) I will give you the nutshell version. It's not a normal food allergy. You don't get a rash, hives, wheezing, breathing difficulties, closed airways, etc. Instead, you get delayed projectile vomiting followed by mucousy, stringy, diarrhea diapers for days. The vomiting can start anywhere from 1-8 hours after a "trigger food" (rice in our case) has been ingested. The vomiting happens every 5-15 min for hours on end. It can lead to dehydration, lethargy, and shock. Sadly, you can't do a blood test, or a skin test for this kind of allergy. Those types of allergies are called IgE allergies (think testable by the immune response in your blood). Instead, the ONLY way to test for this food allergy, is by giving your child the food that will make them violently ill, sick for days on end, and not want to eat for potentially days to weeks. As you can imagine, breast feeding is one of the few ways you can keep a child who is this sick, well hydrated. It is hard on me, but when she gets sick, it's this or having to potentially go to the ER for an IV.
I had planned to start tappering down the number of feeds I was doing, so that we could wean by 18 months. As of last week, that plan is on hold. We ran accross another food that triggers an FPIES reaction. It appears she is also allergic to turkey. We're not 100% sure what caused it, since she had a couple new foods at the same time. But, I am back to breast feeding on demand. As you can imagine, with a 14 month old baby, that means she needs a lot more milk than I can keep up with right now. So you aren't rid of me yet, and this blog may eventually become very geared toward informing and educating the public about FPIES and our journey. For now, I will need to continue nursing, as it has been 6 days where she has eaten less than 2oz of solid foods a day. Until she is back to normal, I am on duty 24 hours a day.
Well, as it turns out, we will likely be breastfeeding much longer than what I had originally anticipated. Not for her comfort (per say), or for my own desires. We have recently found out that our daughter has a rare food allergy called Food Protein Induced Enterocolitis Syndrome (called FPIES - like the letter F and apple pies). This very rare food allergy is not your typical food allergy. No ma'am, it is the kind that makes you hate feeding your child. As we started to transition our daughter from being primarily fed on breast milk, to eating more and more solid foods, we found out that our daughter is allergic to rice. Yes, rice. That isn't a typo. I've heard from so many people that it's not possible to be allergic to rice. I've even had doctors tell me this. Our pediatrician first suggested it, and we are headed to visit an allergist/specialist in the coming weeks. For those of you unfamiliar with FPIES (like I was) I will give you the nutshell version. It's not a normal food allergy. You don't get a rash, hives, wheezing, breathing difficulties, closed airways, etc. Instead, you get delayed projectile vomiting followed by mucousy, stringy, diarrhea diapers for days. The vomiting can start anywhere from 1-8 hours after a "trigger food" (rice in our case) has been ingested. The vomiting happens every 5-15 min for hours on end. It can lead to dehydration, lethargy, and shock. Sadly, you can't do a blood test, or a skin test for this kind of allergy. Those types of allergies are called IgE allergies (think testable by the immune response in your blood). Instead, the ONLY way to test for this food allergy, is by giving your child the food that will make them violently ill, sick for days on end, and not want to eat for potentially days to weeks. As you can imagine, breast feeding is one of the few ways you can keep a child who is this sick, well hydrated. It is hard on me, but when she gets sick, it's this or having to potentially go to the ER for an IV.
I had planned to start tappering down the number of feeds I was doing, so that we could wean by 18 months. As of last week, that plan is on hold. We ran accross another food that triggers an FPIES reaction. It appears she is also allergic to turkey. We're not 100% sure what caused it, since she had a couple new foods at the same time. But, I am back to breast feeding on demand. As you can imagine, with a 14 month old baby, that means she needs a lot more milk than I can keep up with right now. So you aren't rid of me yet, and this blog may eventually become very geared toward informing and educating the public about FPIES and our journey. For now, I will need to continue nursing, as it has been 6 days where she has eaten less than 2oz of solid foods a day. Until she is back to normal, I am on duty 24 hours a day.
Thursday, February 20, 2014
On Parenting, Nursing, and the Generational Divide
This is a difficult post to write, as it reveals some very personal feelings about my relationship with my own mother that I have always kept private. So I'll drop all pretenses and speak in honest truths that are hard to speak in hopes that some of you can relate to my own feelings.
I'm 30 years old. My daughter is my first and only child at this time. I was 4 day shy of my 30th birthday when I gave birth to my daughter. I had planned my pregnancy, I had researched my birthing options, and I had done everything different than my mother. I had a midwife instead of an O.B.,I planned for a birthing center birth, but had a home birth, I was completely un-medicated, and I did delayed cord clamping by choice. We co-sleep, feed on demand, and have never once given our daughter formula. We practice baby lead weaning, and believe that positive discipline is the best approach to raising a healthy engaged child in this world.
My mother had an unplanned pregnancy as a newly married woman at 19 years old. I was born in a hospital, stayed in the NICU for the first few weeks, and when I was brought home I was put to sleep in a crib of my own. I was fed formula from the beginning, and never breastfed once. I was fed on a schedule, and napped on a schedule. I was left to cry myself to sleep if I woke at an inconvenient time, or if it was time to go to bed. Our situations were so far removed from each other, that it has been hard for us to relate to each other on many of these issues.
When my mom was young, she went to doctors, friends, family and neighbors for advice on how to raise her children. That was the way her mother had done it, and that was the way she did it. The concept of reading books about parenting, searching blogs, websites, joining online mommy forums, is all completely foreign to my mother. She doesn't understand why I don't take her advice as gospel when it comes to raising my child.
She knows almost nothing of modern parenting. Her vocabulary doesn't include the wonder weeks, attachment parenting, or elimination communication. Being an eco parent means nothing to her. She has never heard of Dr. Sears or even baby led weaning. She thinks that cloth diapering is old fashioned. She thinks it's safe to surround your babies by pillows on a bed, that you can put your newborn to sleep on its tummy, and that the best way to get a baby to sleep through the night is to just ignore it's cries and it will learn to just stop crying for you eventually. She thinks that cracking the window makes it fine to smoke around children. She believed a bar of soap in the mouth taught a toddler not to say bad words, and that spanking you taught you to behave. She honestly believes that you can "spoil" an infant by responding to their cries every time. She feels that babies can be manipulative in nature, and that children can be "brats" when they are misbehaving. She thinks it's hippie parenting to talk to your child about their feelings.
Sadly, I have heard from other women in my daughter's birth month mommy support group, that this same generational divide has made it hard for us to connect with our own mothers and to seek their advice. The digital generation has access to so much more information than the generations before us. We have the ability to find all of our options, research them at length, review what works for some and not for others, and make an educated decision about our choices. We have the option of questioning medical professionals who feel that it's appropriate to give parenting advice on issues that should be parenting issues, not medical issues. We question advice given if it doesn't feel right to us. We're a generation of young mothers trying to break the cycle by parenting in a more natural and loving way. In a way, going back to the roots of parental instincts balks at everything our mothers did. It spits in their proverbial faces and calls into question their decisions. It's no wonder that parenting in this generation lacks support from our own mothers and grandmothers. We're a generation of women often feeling unsupported and lost when we have no one to turn to but each other.
You may be asking what this has to do with nursing. My mother has managed to make quite a few comments about my nursing on demand. My daughter is nearly 10 months old, and I feed her when she shows signs of wanting to nurse. I follow her cues. I don't feed her on a schedule or by the clock. I've been told by my mother that I feed her too much, and that I'm going to make her fat letting her eat whenever she wants. I've been told that I don't let my infant get hungry enough.... as if an infant can't feel the difference between being a little hungry and really hungry. I've been made to feel embarrassed about nursing my daughter. I've been expected to leave the room or cover up with my parents around. I've been asked when I'm going to stop nursing. I've been side eyed for suggesting that I'd go longer than a year because my daughter might not feel ready to stop that soon. I've been told it's "unnatural" for children over 18 months to nurse (even though most of the world nurses while their toddlers are learning the world of solid foods).
Something is very wrong with America. We have a perverse desire to break new mothers. We take it as gospel when a doctor says you should or shouldn't co-sleep or night nurse after X amount of months. Somehow, we've allowed previous generations of mothers and so-called professionals to cast a shadow of doubt on our own instincts of what feels natural and right to us.
I feel as if we are pioneers, venturing into a new (or long forgotten) territory of motherhood. We are the generation that can bring back the instinctual practices of parenting, one that will teach our own children to do what feels right instead of what others tell you is right. For now, I choose to raise my child in the way that I wish, and I will continue to battle the criticisms of my mother and her generation's parenting advice on my own generation.
Friday, February 14, 2014
Happy Valentines Day
I have survived 9 and a half months of nursing. If you have no clue what that means, then let me enlighten you....
- 9.5 months of constant worry about milk supply.
- Painful pumping.
- Milk blisters.
- Dealing with a baby who wouldn't take the bottle when I went back to work, no matter how hard we tried.
- Discovering that my milk tastes metalic/soapy because I have excess lipase.
- Having to scald my milk at the office after every. single. pumping. session.
- Having to deal with co workers asking awkward questions about me scalding my milk.
- Having my milk messed with in the employee refrigerator, or worse, the fridge being so full that there is no room to put my pumped milk.
- Having co workers, supervisors, and management constantly asking me when I'll be done pumping (for good), or making comments to the tune of, "I bet you'll be glad when you don't have to do that anymore!" or "why don't you just switch to formula." as if feeding my child should be something everyone else has a right to comment on.
- Being walked in on by male co workers while pumping multiple times (even with a sign on the door, and a scheduled pump time/private office).
- Pumping with a manual hand pump, in the bathroom at work, by candle light during a power outage because there were no places to pump with a window that were private.
- Having to wait over 4 hours to pump at work while engorged because there were no rooms available to pump with everyone in meetings.
- Having to pump in a warehouse bathroom that hasn't been cleaned in over a year.
- Having to wash my pump equipment in ice cold water at work because our sink doesn't have hot water.
- Having to wake up every 45-90 min a night for months on end because she won't eat enough from the bottle to sleep through the night without waking up hungry.
- Marathon nursing.
- Biting.
- Scratching, clawing, twisting, chewing.
- Leaking in public.
- Being given dirty looks in public for nursing. (even with a cover!)
- Fighting my infant to remain covered while nursing.... she won't eat when I try to cover her.
- Having to ask for places to nurse privately.
- Having strangers stare at me while nursing privately in my car, as if they need to watch someone feed their baby and don't know how to mind their own business.
- 9.5 months of feeling like a milk machine.
- 9.5 months of feeling worried that the milk will dry up.
- 9.5 months of being lucky enough to provide the one food on the planet designed for my baby to eat without having to supplement a single drop of formula.
- 9.5 months of giving her the calories from my own body, and not being able to diet to "get my body back."
- 9.5 months of giving her love, on demand, day and night, because I would have done all the above a million times over for her. That is the love of a mother.
Thursday, September 19, 2013
Excess Lipase and 400 oz of bad milk...
Despite my ups and downs with supply, I've managed to build a nice little freezer stash by pumping prior to returning to work. Like so many others, I had planned to use the frozen milk on days where I didn't have enough milk from the previous day's pumping sessions, or for visits to grandma's, Mondays (so that I wouldn't have to pump on the weekend) and all the other times I might need a little extra. I ended up having over 400 oz in a freezer (a freezer we bought especially for breast milk storage). I'm committed and determined to breast feed my child. My body on the other hand, seems to have other plans. I finally needed to pull out some of the milk from the freezer last week. Low and behold, every bag I pulled out wreaked of soured milk. Some of them smelled like spit up, some smelled like metal, some just smelled so bad I couldn't even describe it.
Bag after bag of frozen breast milk turned rancid smelling and the taste was so bad I wanted to puke just testing it from my finger tip... I finally began to understand why my daughter wasn't eating during the day. I have excess lipase in my breast milk. Meaning, that as soon as I pump, the clock starts running on how long I have before the taste of my breast milk starts to turn. Some sites describe the taste as soapy, or metallic. Mine was metallic and spit up taste combined. For me, I typically pump at work, and then use the milk from today for her to drink tomorrow. Unfortunately, by the time she's ready to drink it, my milk has already started to turn (an hour by hour taste test helped me to pin point that my milk starts to turn by hour 22. Not enough for her to make it a full day.)
I want to make it clear, that breast milk with excess lipase is perfectly fine and safe for babies to drink. It only tastes bad, which is why some babies won't drink it. Some don't mind the taste and will drink it. My daughter will not.
I began to panic. I cried, I sobbed, and I had a total melt down. All those hours of pumping, all the lost sleep, all the work that went into making that stash. All that milk. I now understand why my daughter has been stuck on a reverse cycle for over two months!!
Then I got online and started researching. I was clearly not alone. Tons of nursing mothers have had this same problem. A friend of mine from my mommy group also had excess lipase, so I had a starting point for what to look for. I found out that it could be more than excess lipase, that it could possibly be chemical oxidation. If you're nursing and you've never heard of either of these (like me) then I'll give you the nutshell version. They both make your milk taste bad. But they do it because of different reasons.
Excess lipase is an over abundance of the enzyme (lipase) in your breast milk that helps break down the fats for digestion. It basically has so much, that it breaks it down too fast and starts to turn the milk before your baby can drink it when it's been expressed. The time frame varies from woman to woman, and I was unable to find information on why it happens. It may not happen each time a woman has a baby either. So if you've had it once, you might not have it next time. Chemical oxidation on the other hand, makes your milk taste bad due to the process of pumping/storing and what you put into your body. If your refrigerator isn't cold enough (32-39 degrees F) then your milk might be turning faster, and can make you think you have excess lipase when that really isn't the case. If you have city water with a lot of chemicals in it, these might also affect your milk because of how you wash and sterilize your bottles and pumping equipment. If you eat an excessive amount of polyunsaturated fat then you can also have chemical oxidation from this as well (from what limited information I was able to find).
To be honest, it frustrated the hell out of me knowing that it could be multiple reasons. The first thing I did was review my storage process. I started with the fridge. I bought a fridge thermometer and found out my fridge was at 42 degrees. Not cold enough to keep breast milk. I was also keeping my milk on the top shelf toward the front. We now keep it on a lower shelf in the back, since the thermometer revealed that as the coldest place in the fridge. I had been washing all my gear in regular tap water. I bought distilled water for rinsing and sanitizing and boiled them each night for a week. Turned down the temp. Moved the milk. Sterilized everything. Nothing changed. I was pretty sure it was excess lipase at this point, but wanted to be sure, as it would make a big commitment on my part to keep pumping milk. I then did the last test I could figure out... I scalded the milk. I read that scalding the milk will make milk that has chemical oxidation taste even worse because it further breaks down the milk and it will turn even faster. However, if you have excess lipase, your milk will taste fine after scalding and will last longer than it does without scalding.
My fridge and kitchen looked like a laboratory. I used 3 tubes of 2.5 oz containers of breast milk. The first (control) contained milk that was pumped and put straight into the fridge. The second, contained milk that was pumped, put in the fridge at work, brought home, scalded to 180 degrees, then put back into the fridge. The third contained milk that was pumped, scalded immediately, and then put in the fridge. The fist container turned before 24 hours was up. The second, didn't have that taste to it, and lasted 4 days before I tossed it, The third came out the same as the second and lasted 4 days before I tossed it. Both may have lasted longer, but I just needed to know if I could salvage milk pumped on Fridays to be used on Mondays. It just proved that I could scald either immediately, or wait till I got home from work. I had read mixed reviews about this though, that the additional cooling and heating could break down the milk further, and to try to do it right away if possible.
But I work... full time.... so how the heck was I going to make that happen? I already take so much time away from my desk a day to pump. Then I ran across a blog that gave the best advice ever. I couldn't believe how easy this was going to be, and why I didn't think of it myself!
So you have excess lipase?
You don't have to stop breast feeding/pumping. It is still possible to do it, and to still have enough to freeze. It will just require an extra step on your part. If you work full time like I do, this means you'll need even more equipment at work, and I'd suggest letting HR know what's going on. Mine was super accommodating and said to do whatever I needed to do and to not stress about it. They know I'm aiming for one year, and that I'm the kind of employee that will make up the work. Only 7 more months to go right?
What to do about it:
Buy an instant read digital thermometer, bottle warmer without an auto shut off feature, and a stainless steel bottle. When you pump at work, pour the milk into the stainless steel bottle immediately, and then scald the milk in a bottle warmer, and pull it off as soon as it hits 180 degrees. I then cool the milk under running cold water until it's cold enough to put into glass bottles (I found that for me personally the glass absorbs smell and bacteria less than the plastic ones, and Dr. Browns glass bottles are the same fit as my Medela pump). Then I put them in the fridge at work until I go home. It does add on time, and I get everything ready to go while pumping. (Double check with your HR department to make sure your work's fire alarm system won't be activated by the hot steam just in case). As soon as I'm done, I pour the milk into the stainless steel bottle, and then start the bottle warmer. I clean up while it's heating up. Then I only have a couple more min before it reaches the right temp. I unplug the bottle warmer and dump the rest of the hot water from it. Bring a towel, since 180 degrees is very hot. You will need to cool the milk as soon as you heat it. Don't let it sit to get cool. This information was super helpful:
Cooling down heat-treated milk: Cooked foods have a ‘danger zone,’ a temperature range from 60ºC/140ºF to 4ºC/39ºF where bacteria like to grow. It is therefore important to cool milk down quickly after it has been heated. Cooling the container in ice water is the quickest way to cool milk. Depending on the amount of milk, cooling it in the refrigerator is generally not recommended as the milk will cool unevenly, leaving some milk too warm for too long. Please know that not all glass is suited for heating and rapid cooling. (see source number 3 below)
This great note from Kelly Mom was very helpful for me:
What can I do if my storage problem is due to excess lipase? Once the milk becomes sour or rancid smelling/tasting, there is no known way to salvage it. However, newly expressed milk can be stored by heating the milk to a scald to inactivate the lipase and stop the process of fat digestion. Scald the milk as soon after expression as possible.
To scald milk:
Heat milk to about 180 F (82 C), or until you see little bubbles around the edge of the pan (notto a full, rolling boil).
Quickly cool and store the milk.
Scalding the milk will destroy some of the antiinfective properties of the milk and may lower some nutrient levels, but this is not likely to be an issue unless all of the milk that baby is receiving has been heat-treated.
Per Lawrence & Lawrence, bile salt-stimulated lipase can also be destroyed by heating the milk at 144.5 F (62.5 C) for one minute (p. 205), or at 163 F (72 C) for up to 15 seconds (p. 771).
I find that I'm able to let pumped milk from Friday at work, sit without issue, and without being frozen, in the fridge until Mondays when she drinks it. After being scalded and cooled immediately, the milk is able to survive the weekend.
If you have chemical oxidation, here is what you can do about it:
Cut out all polyunsaturated fat and rinse all pump parts/bottles with distilled water. Make sure you sanitize your bottles and pump equipment every time you use them in distilled water. Also use a soap that is phosphate free (medela breastmilk soap is what I used). Some sites also recommend that beta carotene and vitamin E need to be increased in your diet (be careful as I've read that these can be toxic in the wrong doses).
What do I do with all that frozen milk with excess lipase?
If you found out late in the game, and have a big freezer stash like me? Consider donating to a legitimate milk bank... be careful, as most hospitals can only accept through one of these places since they do a blood screen (their cost, not yours) and the milk is pasteurized so that they can still use it. NICU babies often are tube fed, so they won't have to taste the bad flavor, but can still receive the benefits. Some places are "milk banks" that charge the recipients. You can read more about this here. Don't trust these places, as they don't go to the families in need. There are only 14 legitimate milk banks in the US that hospitals receive this milk from. You can find them here.
Amazing resources:
Bag after bag of frozen breast milk turned rancid smelling and the taste was so bad I wanted to puke just testing it from my finger tip... I finally began to understand why my daughter wasn't eating during the day. I have excess lipase in my breast milk. Meaning, that as soon as I pump, the clock starts running on how long I have before the taste of my breast milk starts to turn. Some sites describe the taste as soapy, or metallic. Mine was metallic and spit up taste combined. For me, I typically pump at work, and then use the milk from today for her to drink tomorrow. Unfortunately, by the time she's ready to drink it, my milk has already started to turn (an hour by hour taste test helped me to pin point that my milk starts to turn by hour 22. Not enough for her to make it a full day.)
I want to make it clear, that breast milk with excess lipase is perfectly fine and safe for babies to drink. It only tastes bad, which is why some babies won't drink it. Some don't mind the taste and will drink it. My daughter will not.
I began to panic. I cried, I sobbed, and I had a total melt down. All those hours of pumping, all the lost sleep, all the work that went into making that stash. All that milk. I now understand why my daughter has been stuck on a reverse cycle for over two months!!
Then I got online and started researching. I was clearly not alone. Tons of nursing mothers have had this same problem. A friend of mine from my mommy group also had excess lipase, so I had a starting point for what to look for. I found out that it could be more than excess lipase, that it could possibly be chemical oxidation. If you're nursing and you've never heard of either of these (like me) then I'll give you the nutshell version. They both make your milk taste bad. But they do it because of different reasons.
Excess lipase is an over abundance of the enzyme (lipase) in your breast milk that helps break down the fats for digestion. It basically has so much, that it breaks it down too fast and starts to turn the milk before your baby can drink it when it's been expressed. The time frame varies from woman to woman, and I was unable to find information on why it happens. It may not happen each time a woman has a baby either. So if you've had it once, you might not have it next time. Chemical oxidation on the other hand, makes your milk taste bad due to the process of pumping/storing and what you put into your body. If your refrigerator isn't cold enough (32-39 degrees F) then your milk might be turning faster, and can make you think you have excess lipase when that really isn't the case. If you have city water with a lot of chemicals in it, these might also affect your milk because of how you wash and sterilize your bottles and pumping equipment. If you eat an excessive amount of polyunsaturated fat then you can also have chemical oxidation from this as well (from what limited information I was able to find).
To be honest, it frustrated the hell out of me knowing that it could be multiple reasons. The first thing I did was review my storage process. I started with the fridge. I bought a fridge thermometer and found out my fridge was at 42 degrees. Not cold enough to keep breast milk. I was also keeping my milk on the top shelf toward the front. We now keep it on a lower shelf in the back, since the thermometer revealed that as the coldest place in the fridge. I had been washing all my gear in regular tap water. I bought distilled water for rinsing and sanitizing and boiled them each night for a week. Turned down the temp. Moved the milk. Sterilized everything. Nothing changed. I was pretty sure it was excess lipase at this point, but wanted to be sure, as it would make a big commitment on my part to keep pumping milk. I then did the last test I could figure out... I scalded the milk. I read that scalding the milk will make milk that has chemical oxidation taste even worse because it further breaks down the milk and it will turn even faster. However, if you have excess lipase, your milk will taste fine after scalding and will last longer than it does without scalding.
My fridge and kitchen looked like a laboratory. I used 3 tubes of 2.5 oz containers of breast milk. The first (control) contained milk that was pumped and put straight into the fridge. The second, contained milk that was pumped, put in the fridge at work, brought home, scalded to 180 degrees, then put back into the fridge. The third contained milk that was pumped, scalded immediately, and then put in the fridge. The fist container turned before 24 hours was up. The second, didn't have that taste to it, and lasted 4 days before I tossed it, The third came out the same as the second and lasted 4 days before I tossed it. Both may have lasted longer, but I just needed to know if I could salvage milk pumped on Fridays to be used on Mondays. It just proved that I could scald either immediately, or wait till I got home from work. I had read mixed reviews about this though, that the additional cooling and heating could break down the milk further, and to try to do it right away if possible.
But I work... full time.... so how the heck was I going to make that happen? I already take so much time away from my desk a day to pump. Then I ran across a blog that gave the best advice ever. I couldn't believe how easy this was going to be, and why I didn't think of it myself!
So you have excess lipase?
You don't have to stop breast feeding/pumping. It is still possible to do it, and to still have enough to freeze. It will just require an extra step on your part. If you work full time like I do, this means you'll need even more equipment at work, and I'd suggest letting HR know what's going on. Mine was super accommodating and said to do whatever I needed to do and to not stress about it. They know I'm aiming for one year, and that I'm the kind of employee that will make up the work. Only 7 more months to go right?
What to do about it:
Buy an instant read digital thermometer, bottle warmer without an auto shut off feature, and a stainless steel bottle. When you pump at work, pour the milk into the stainless steel bottle immediately, and then scald the milk in a bottle warmer, and pull it off as soon as it hits 180 degrees. I then cool the milk under running cold water until it's cold enough to put into glass bottles (I found that for me personally the glass absorbs smell and bacteria less than the plastic ones, and Dr. Browns glass bottles are the same fit as my Medela pump). Then I put them in the fridge at work until I go home. It does add on time, and I get everything ready to go while pumping. (Double check with your HR department to make sure your work's fire alarm system won't be activated by the hot steam just in case). As soon as I'm done, I pour the milk into the stainless steel bottle, and then start the bottle warmer. I clean up while it's heating up. Then I only have a couple more min before it reaches the right temp. I unplug the bottle warmer and dump the rest of the hot water from it. Bring a towel, since 180 degrees is very hot. You will need to cool the milk as soon as you heat it. Don't let it sit to get cool. This information was super helpful:
Cooling down heat-treated milk: Cooked foods have a ‘danger zone,’ a temperature range from 60ºC/140ºF to 4ºC/39ºF where bacteria like to grow. It is therefore important to cool milk down quickly after it has been heated. Cooling the container in ice water is the quickest way to cool milk. Depending on the amount of milk, cooling it in the refrigerator is generally not recommended as the milk will cool unevenly, leaving some milk too warm for too long. Please know that not all glass is suited for heating and rapid cooling. (see source number 3 below)
This great note from Kelly Mom was very helpful for me:
What can I do if my storage problem is due to excess lipase? Once the milk becomes sour or rancid smelling/tasting, there is no known way to salvage it. However, newly expressed milk can be stored by heating the milk to a scald to inactivate the lipase and stop the process of fat digestion. Scald the milk as soon after expression as possible.
To scald milk:
Heat milk to about 180 F (82 C), or until you see little bubbles around the edge of the pan (notto a full, rolling boil).
Quickly cool and store the milk.
Scalding the milk will destroy some of the antiinfective properties of the milk and may lower some nutrient levels, but this is not likely to be an issue unless all of the milk that baby is receiving has been heat-treated.
Per Lawrence & Lawrence, bile salt-stimulated lipase can also be destroyed by heating the milk at 144.5 F (62.5 C) for one minute (p. 205), or at 163 F (72 C) for up to 15 seconds (p. 771).
I find that I'm able to let pumped milk from Friday at work, sit without issue, and without being frozen, in the fridge until Mondays when she drinks it. After being scalded and cooled immediately, the milk is able to survive the weekend.
If you have chemical oxidation, here is what you can do about it:
Cut out all polyunsaturated fat and rinse all pump parts/bottles with distilled water. Make sure you sanitize your bottles and pump equipment every time you use them in distilled water. Also use a soap that is phosphate free (medela breastmilk soap is what I used). Some sites also recommend that beta carotene and vitamin E need to be increased in your diet (be careful as I've read that these can be toxic in the wrong doses).
What do I do with all that frozen milk with excess lipase?
If you found out late in the game, and have a big freezer stash like me? Consider donating to a legitimate milk bank... be careful, as most hospitals can only accept through one of these places since they do a blood screen (their cost, not yours) and the milk is pasteurized so that they can still use it. NICU babies often are tube fed, so they won't have to taste the bad flavor, but can still receive the benefits. Some places are "milk banks" that charge the recipients. You can read more about this here. Don't trust these places, as they don't go to the families in need. There are only 14 legitimate milk banks in the US that hospitals receive this milk from. You can find them here.
Amazing resources:
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