Slow and Steady

Over the past few weeks, we decided to bite the bullet, conquer our fears, and with a lot of prayer and the support of some amazing mamas, start D on a rotation of broths! Boy oh boy, has this been an adventure. So far, D has had each of 5 different broths about 3 times. He has not had any FPIES reactions, but I wouldn't say it's been easy, and we have a ways to go. He gets Beef, Elk, Salmon, Buffalo, and Snapper in rotation, every other day. We are currently giving him 1 1/2 tsp by medicine syringe because he still refuses a bottle and just wants to splash the broth around when given a spoon. I'm sure the taste is definitely not something he enjoys much either. When you're used to sweet, creamy breastmilk, why would you want salty or fishy or gamey tasting broth?? Next rotation we up it to 3 tsp every other day. He seems to be tolerating them pretty well, but still has some crankiness, restless nights, gas, and mucousy poops, but he's not in pain from these symptoms, and all of them are usually related to die off. They don't really concern me because it's just his body doing what it's supposed to, healing itself. God created our bodies to heal and by giving him these nutrient rich, gelatin filled, good fat containing broths, D's gut is healing!

Please keep prayers coming for Daniel's healing gut! We are on the right track here and I thank God daily for leading me to GAPS to not only heal my son, but to heal my whole family also!

An FPIES Birthday

 

Celebrations and holidays can be very hard on FPIES families and GAPS families because they are often filled with high fructose corn syrup, sugar, grains, and many of the common FPIES trigger foods. Our culture tends to place the focus on food as opposed to the actual event. Although I did have food at Daniel's birthday party for the adults, there were only grandparents and an uncle in attendance, so it was very low key. We focused on watching Daniel open presents, he had a present cake, and blew out a candle after we sang "Happy Birthday."

He seemed to have an amazing time and slept so well that night from all of the extra attention and excitement! He'll never know that his party was "not normal" and he didn't even realize that he was "missing out" on the smashing of the cake experience. He loves his Mama milk and still doesn't show a major interest in food. It saddens me when I hear mama's saying their doctors told them that their babies NEED more than just breastmilk to grow and develop. I'm not a doctor of course, but I have a healthy, smart, energetic little boy who is thriving at the age of 12 months on breastmilk alone! What more could I ask for?!

Hiding

I've been MIA. Hiding out. Avoiding. I wish everything could be normal. I want to eat more than just beef. I want to sleep longer than 90 minutes at a time. I want to not feel anxious and worried all the time, especially around food. I want to enjoy feeding my child, not fear it. As we approach Daniel's first birthday, I find myself feeling more fear and anxiety. We've made progress, but are not where the doctors would like us to be...but then again, what do they know? Technically, Daniel doesn't need anything except for breastmilk until he's a year old, and even then, he CAN survive on breastmilk alone. It's not an ideal situation for either of us, but we'll make it work. I'm not normally forthcoming with asking for prayers, but boy oh boy do we need them. I've seen prayer work wonderful things in people's lives, and if I'm going to keep this curent routine up, I need all the help I can get. So, here's my wishlist folks:

• For Daniel's iron levels to go up and/or hold steady
• For Daniel's body to detox all these wretched yeast it's holding onto from my rounds of antibiotics and steroids
• For us to pass a couple of nutrient dense foods so malnutrition doesn't become a concern
• For peace, calm, and acceptance in my heart as we trial foods and have possible reactions to deal with
• For guidance on which foods to trial
• For all of the other children and families dealing with this complicated syndrome

Please, if you have a special time when you pray everyday, add these items to your, whatI'm sure is already long, prayer list.

Waiting...

and waiting, and waiting. That seems like all we've been doing lately. Waiting for our colds to be over. Waiting for Daniel's teeth to come in. Waiting for antibiotics to get out of my system. Waiting for the new probiotics to come. Waiting to see if Daniel is reacting to the new probiotic or if he's just experiencing die off. Waiting seems to be the hardest part in all this FPIES mess. Now we are waiting to start Daniel's first direct ingestion food trial. He seems to be doing well with the pureed beef everyday, and so we're going to trial zucchini, peeled, seeded, fermented, boiled and pureed. Please pray for us that the trial is easy and that God will allow this food to nourish his body, not harm it, and if he reacts to zucchini, that it is a mild reaction with a quick recovery time. Our plan is to feed him 1 spoonful in the morning, then, you guessed it, WAIT with an ER bag ready in the car. God is the only one strong enough to get me through this. The guilt I feel, knowing I may be feeding my child something that could make him terribly sick is overwhelming!

On a Whim

So I've been feeling desperate lately. We've been sick with a pretty nasty cold and I'm tired and run down and Daniel is teething, yet again, so I've been feeling sorry for myself. I'm fed up with eating only beef and I'm sick of having to feed my kid every 2 hours, especially since he won't take a bottle. I'm hate the crying and screaming when I have to force him to drink the beef broth. Everything just kept adding up and I fell to my knees, begging God for help!

It took a few days, and lots and lots of prayers, but He answered me last night. I had boiled some ground beef to make and freeze meat puree and broth for Daniel and I decided, on a whim, to try feeding him the puree again. Last time we tried he gagged and spit it all out and then proceeded to cry and scream until I washed him off and nursed him. Last night, he ate it off the spoon and then sucked on the spoon to make sure he got every last drop! No crying. No whining. No screaming. Just a happy baby, opening his mouth for the next spoonful. I almost began to cry. I don't even have words that describe the elation and joy that filled my heart last night. God gave me a huge boost of confidence and reminded me that His timing is perfect.

Daniel ate when God wanted him to. His teeth will come through when God wants them to. He'll start to crawl when God wants him to. All of these worries running through my head and God jumps in and says, "Chantelle, relax, kick back and let me take the reigns for a while. Enjoy Daniel and let him take his time doing the things he's 'supposed to be doing already'. I'm in charge and on your side, so don't worry!" So, that's what I'm going to try to do. Sit back, relax, and enjoy the ride, because Daniel is one amazing little guy, doing some amazing stuff, and I don't want to miss a thing!

A Poisoned Mind

As I mentioned in an earlier post, there is definitely a different mind set when you decide to use GAPS to heal the gut for FPIES as opposed to the traditional trial and error and wait til your child "outgrows" it approach. With GAPS, there is some degree of pushing through symptoms, especially when you feel they are related to die off or detox. With the traditional approach, any sign of symptoms tend to cause bells and whistles to go off in the momma's head and she watches much more closely, sometimes pulling a food from the diet. GAPS focuses on healing and sealing the gut, so that any and all foods will someday be tolerated because the "leaks" of "foreign" proteins into the system are gone. The traditional approach focuses on trialing foods and watching for symptoms to find out if that specific protein will cause problems or a reaction. Unfortunately, it doesn't include healing. It's a waiting game. When will the immune system mature enough to not want to attack that specific protein, and when will the T cells finally forget about their earlier attack of that protein. GAPS doesn't recognize rotation diets for the sake of tolerating a food. You start with a VERY tiny amount of the food and if symptoms are seen, you remove it completely and try again in a few weeks after the body has had more time to heal. With the traditional approach, you start with a small amount, then if you get to a point where symptoms show up, but then back off the food to a smaller amount and they go away, you keep that food limited to a specific amount/day. For instance, a child can have 1 Tbs of carrots every other day and have little to no symptoms, but if they have more than that on any given day, or have it 2 days in a row, symptoms return.

I'm sure there are more differences, but these are the ones I have found to be most prominent for me. I am so blessed that I didn't have a long period of time thinking like an FPIES momma, and have transitioned much easier into the GAPS mindset. Everyone has a right to choose how they want to deal with their child's illnesses, so please don't take that as an attack on anyone who has decided to use the traditional approach to FPIES. I am just taking the path that I feel God has led me to, and He is blessing our steps down it so far. I meet more resistance, and get some eye rolls, but Daniel is showing GREAT improvements!


I'm ending with a little rambling from the mind of a sleep deprived momma...

I have a theory, that I have not had time to research or look into, but I'll share it as clearly as I can get it from my brain to my finger tips.

A lot of the foods that are common FPIES triggers are foods that are highly detoxifying or highly fibrous causing them to be harder to digest. My theory is that maybe FPIES is the body's way of saying, "WHOA! I am not ready for a detox/advanced food of this nature!" Our immune systems are there to help clean up and keep us healthy, so the fact that it has been shown to be an immune response makes sense. Detox and die off symptoms are similar, but not as extreme as FPIES symptoms. BUT if the body were being detoxed too quickly and too strongly, i believe it could produce a super strong immune reaction like the one seen with FPIES. Think about the food poisoning analogy that is often used: the body has something "foreign" introduced, and the body gets rid of it/detoxes as quickly as possible (vomit and diarrhea). Due to the leaky guts in these FPIES kiddos, and the immaturity of their immune systems, their detoxing symptoms would be much more severe, like food poisoning. Does that make ANY sense to anyone but myself? It's just a thought that was brought on by reading more about the GAPS process.

Update and Daniel's Current Regimen

As you know, FPIES blogs tend to talk a lot about poop. Just over the past 2 weeks or so, Daniel is finally having normal breastfed baby poops! This is a major step in the right direction! He now poops only 1-2 times a day, as opposed to 10-12, like before.

God has blessed us so richly with the ability to feed me my very expensive diet and to have found good probiotics. As of today, Daniel gets a 1/4 of the children's recommended dose for the probiotic we use and about 1-2 tsp of 100% grassfed beef broth. So far, things are going great, and he's still gaining weight and meeting milestones! As I said above, his poops are normal, and other than a few extra hiccups (common with adjusting to food other than breastmilk) and the normal disturbed sleep from teething, he has no symptoms that warrant alarm. I can't help but say it again that God has led us to the right path for healing! I pray daily that GAPS will be our family's answer to our digestive problems and that God has given us this diet to also help us have the chance that our next child will not have to suffer the way that Daniel has!

We tried using coconut oil for his dry skin a few days ago, and he was chewing on his hands...that night we were reminded where we have come from: screaming, gas, bloody mucousy bright yellow/green diarrhea. BUT, it didn't take him DAYS to recover, it took the 2 hours or so that he was up in the night, and once the diarrhea was over, he slept great and was his same old self the next day. Just a month ago, he would have been "off" and having symptoms for days following any kind of upset to his system. It's amazing to see how far we've come. I thank God every day for giving me such a happy baby in spite of all this mess!

Up next, we plan to finally get brave and try elk and bison, and possibly fish broth. Rotating the broths gives a better variety of nutrients and the good fats and gelatin that help heal the gut. Once we can get Daniel's gut a little more healed, we'll be able to start trying to add some veggies and fruits! I'm hoping we can find a fruit he'll tolerate before his first birthday so he can have a nice frozen, fruity treat on his birthday...if not, I have made a promise to myself to not be disappointed or mope about it. He is healing, and that is more important to me than him having a special birthday treat. He won't remember it anyway!

That's where we're at!

Little House on the Prairie

If you're a woman, I'm sure you've read the books, at least once in your life time. Lately, I've been longing for the pioneer days. I always used to think I would have been better suited to grow up in the 60's or 70's due to my attachment parenting, breastfeeding, baby wearing, non-vaxing, parenting style, but the deeper I go with my research into using traditional whole foods to heal my son and my family, the more I feel I should have been born long before the 60's. I've become so enthralled with the traditional way of doing things, that I have actually searched our area for real estate on the prairie so I can live on a farm and raise chickens and goats and pigs, and have a root cellar and a dairy cow, and a cute little farm house for Daniel and our future children to grow up in. I've researched canning, preserving, fermenting, kefiring, soaking/sprouting of grains, stocks/broths for healing, becoming a homeopath or herbalist, homeschooling, etc. You name it, I want to learn more about it! When I think about it even more, I feel that God put me in the perfect era. I am different and unique. I am a pioneer of my own, banning together with and learning from others, trying to bring back these most basic of skills and ideals. By allowing this challenging FPIES diagnosis for Daniel, God has ignited a passion in my heart to learn more about how to use the gifts He's given us in a way to improve Daniel's health, my health, and my husband's health. He has given me the ability to share information with members of my family, and has increased my confidence when dealing with resistance. So many wonderful blessings have come from something I once thought to be a doom filled diagnosis! I'm blessed with the fact that I am learning about using these whole foods to heal through the GAPS diet as early in our journey with FPIES as I am. Once you get into the mind set of an FPIES momma, it can be hard to break into thinking like a GAPS momma. I'll be writing more on that in a later post, so now back to my regularly scheduled thoughts...Little House on the Prairie, yes, now where was I? Sleep deprivation anybody? I have recently looked into taking some classes in nutrition based on the traditional whole foods movement, sponsored by the Weston A. Price Foundation via Hawthorn University. As of right now, I don't have the time or money to pursue these classes, but as Jason climbs the corporate ladder and Daniel becomes more able to entertain himself for longer periods of time, I plan to make this dream a reality. In the mean time, I have discovered an amazing website and blog called GNOWFGLINS, Enjoying "God's Natural, Organic, Whole Foods, Grown Locally, In Season". On this site, there is a wealth of information pertaining to GAPS, Whole Foods, and Homesteading, and she offers a membership option where you can take online classes. I have found many other blogs devoted to these subjects also, and plan to compile a list for the sidebar here. I feel like a sponge right now, just soaking up every last drop of information set before me.

Jason and I have had many discussions concerning these subjects over the past few weeks and have decided that we have a goal! We eventually want to live out on the plains, east of our city, but close enough to "come into town" for activities and family events, on a small farm with chickens, dairy goats, possibly pigs, a dairy cow, a rather large organic garden, a greenhouse, and of course Jason had to add he'll need a big truck, lol. This is our ULTIMATE goal, and we know it will take time and a lot of work to get there, but we have also set some short term goals and are working on our plan to make this happen! Who knows, maybe in a few years you all will start calling me "Laura."

Missing

Cabin Fever is hard enough to deal with, but throw in a sick kid who is attached to you (literally) every 2 hours, sleep deprivation, the same old daytime TV, and the inability to eat what's in the pantry and it makes it much more difficult. My days just seem to melt together. I rarely know the actual date, I just keep doing the same thing day in and day out, because right now, I have to be a machine. I have to keep going for my son.

I miss people. Specific people, yes, but just human interaction in general would be nice. I'm hoping my current friends will be understanding of my situation and not write me off just yet. I rarely get to leave my home or my parents' home. I have yet to be out on a date with my husband since my son was born more than 5 months ago. The only things I get to do are quick grocery runs and previously, an appointment or 2 at work. I can never be gone more than about 2 hours at a time because Daniel hates bottles and will only eat a very small amount from one, never enough to sustain him until the next feeding. If I get home and he ate that small amount just an hour before, he screams til I nurse him, then he pukes because he ate too soon. Something I've learned about my son's digestion is that he needs that full 2 hours to digest the first feeding before eating again or his tummy gets upset and stays upset for a few hours. I don't fully understand it, but from what I've gathered, it has to do with bile production and stomach acid not being at full strength because they're still working on his last meal. When you throw the new milk in there too soon, it doesn't get digested properly and I end up with a very upset baby. Another reason I have to be around to nurse him is my milk supply. I'm eating a very limited diet, and therefore my calorie intake isn't as high as it probably should be, making it harder for me to make enough milk to sustain Daniel unless he nurses from me directly as many times a day as he can. I need those nursing sessions to tell my body to keep making more milk, because unless you pump exclusively and set yourself up with it from the beginning, pumping doesn't keep your milk supply as abundant as a baby does.

Talking about my milk supply reminds me how much I miss food. I used to love watching cooking and food related shows, now, I avoid them like the plague. I loved reading cooking and recipe magazines, but now when they come in the mail, they go in the "read later" pile. I love experimenting in the kitchen and figuring out new ways to make gluten free taste yummy. I've started sewing more (in all my free time, lol) in order to keep a creative outlet for myself. So I think that's how I'm dealing with my inability to create tasty treats in the kitchen. Having to go through this really makes a person realize how much food tends to be the center of gatherings. Why does it always have to be about food? Can't you just have a game night/movie night with a few little snacks, have a visit with family without a meal being involved, meet a friend for something other than "lunch?" It's tough enough trying to figure out how to have people over and eat only what I can, but going out to eat is not even plausible for me.

I can't go anywhere without a plan. This kills me. I miss being spontaneous. Unfortunately, I know a lot of mommas go through this when they have a child with any type of food allergy or disability. I would love to be able to just grab the diaper bag and go, but people with "normal" children don't have to worry that there might be an hours worth of vomiting and pack tons of extra clothes and burp rags, or hours of screaming in pain, or that their child might accidentally chew on something that could have trace amounts of food proteins on it, or that someone might feed their child/kiss their child without washing their mouth out/let their child chew on a finger with lotion or residual food/etc.

Some may call me anal or over protective, but I know in my heart that I'm just keeping my son safe. It's sad that my social, food loving, spontaneous self has to suffer because of this, but I think of how things will eventually get easier as he grows older, and hopefully in 3-5 years, FPIES and all the challenges that come with it will be nothing but a memory. People live 80-100 years nowadays right? What I'm missing over these next 3-5 years will be well worth the rest of our lives being exciting!

What Is This You Speak Of?

From the FPIES Foundation homepage:

	"Food Protein-Induced Enterocolitis Syndrome is a rare, severe food allergy of the gut. Classic symptoms to this allergy are delayed following food ingestion (~2hrs or more) and include profound vomiting (often to bile), diarrhea and dehydration. These symptoms can quickly lead to lethargy, change in body temperature and blood pressure, and in severe cases, sepsis-like shock. Immediate medical attention is needed for IV hydration and monitoring.
FPIES symptoms can also include persistent reflux, abdominal pain and mucous and/or blood in stools. Multiple food exposures may occur before a reaction is seen. Delayed reactions are also common. Please note that each child is unique and your child may experience their own range and intensity of these symptoms. Please seek medical advice if your child is displaying any of these symptoms." That about sums it up right? WRONG! Each child is so different and each child reacts in their own unique ways. Some of my posts might be a bit "gross" to all you lovely readers, but it's a part of my daily life! Daniel's symptoms of reaction include: Reflux Vomiting Vomiting to Bile Stomach Pain Gas Pain with Pooping Diarrhea Blood in Stool Mucous in Stool Hives Diaper Rash Pin Prick Rashes on Chest, Neck, and Trunk Cradle Cap Sleeplessness/Restlessness He has blood and mucous in his stools on a daily basis, although I am trying to fix this by rotating foods through my diet in order to make sure his system doesn't get overloaded with tons of the same food protein. Yesterday morning, he vomited about every 10 minutes until it turned green/yellow and mucousy about an hour later. All I could do was hold him across my lap with a receiving blanket ready to catch the next vomit, and try to keep him distracted in between. People didn't see the dark side because I didn't feel that they needed to, but I guess writing this blog has changed that. People look at pictures of Daniel and say, "He looks so healthy and happy," and I wonder why they would think I would take pictures of him draped across my lap, crying and vomiting? Why would I want to freeze that moment forever? People look at Daniel and say, "He's such a big boy!" That's because he nurses every 2 hours, at least, and most of the time it's because he needs comfort from the rumbling in his guts. Here you can find an article titled "Empathy," written about reflux, that a mom at the Protein Intolerant Child Foundation tailored to fit FPIES and MFPI(Multiple Food Protein Intolerances). It explains most of my feelings over the past few months while we were in limbo. It's a good reminder of how much words can hurt and/or help. Now you've got the low down on what FPIES is and how Daniel's body reacts to food proteins through my breastmilk. His body, specifically T Cells, attack his stomach/intestines/colon like he's eaten poison, every time I eat one of his trigger foods. This is why I have had to eliminate so many things from my diet. I still don't know what foods are safe for him, and we still haven't reached a good baseline(no symptoms of reaction present) for me to work off of. That is my goal. Find baseline. If  you like to pray for specific things, pray for baseline for Daniel. I know that God can heal my son if He wants to, just like He could have saved Jesus from being crucified, but God's will isn't always what we WANT, although I've always found that it does provide what I NEED. What I need right now is baseline for Daniel so we can press forward and hopefully add more foods to my diet, and then start him on solids. I love my son more than I ever imagined possible, but it's a drop in the bucket compared to the love God feels for him. He doesn't want us to hurt or suffer, He wants us to be successful, and in order for us to be successful, we need to reach baseline.

Peace of Heart

Have you ever gotten  news that was not neccesarily "good" news, but felt a million pounds lighter after hearing it? Yesterday I got that news. When the doctor said, "FPIES," without me even mentioning it, I almost squealed with delight! You FPIES mommas might be wondering, "What the...?! Are you nuts?!" I think I already answered that question in my first post. You see, when you're in a constant state of limbo, with no support from a medical professional, and your kid doesn't LOOK sick, getting a concrete answer is like having the heavens open with a group of angels singing the hallelujah chorus and God's glory shining on you, warming your cheek (and heart for that matter) like the sun. Yesterday was a HUGE blessing. That's the way I am choosing to see this diagnosis. I know we'll have dark days filled with vomit, diarrhea, and crying, but now, I have an answer as to why. So with that, I will end with a prayer of thanksgiving!

Dear Father in heaven, I thank you for bringing me answers about Daniel, and for giving me peace in my heart about the answers. Please continue to guide us in this race you have marked out for us. You are a truly gracious God and I thank you for loving me and my family. I thank you for blessing me with an amazing son to care for, along with the resources and people neccesary! In Jesus name, Amen.

I'm Not Crazy

I repeat this to myself several times a day. "I'm not crazy, I'm not crazy, I'm not crazy." There is definitely something wrong with my son. No, it's not colic, no it's not just acid reflux, yes, I've tried the swing/bouncy seat/elevating the bed/every trick in the book and there is still no improvement. I hear all kinds of advice, and I just smile and nod. My baby isn't just a normal fussy baby, something is wrong. Unfortunately, what we suspect the problem is will turn our lives upside down for the next 2-5 years. It's more serious than I want to think about, and my stomach does flips and somersaults, my chest and throat tighten, and my jaw clamps every time I read another mom's story or another article on this syndrome. FPIES-Food Protein Induced Entercolitis Sydrome. We have no diagnosis yet, as we are still waiting for doctor's appointments with specialists who deal with this syndrome. There is no cure. There is no test for it. It is a clinical diagnosis, and the only treatment is to eliminate the foods that cause the symptoms. You can find information about FPIES and the difference between chronic and acute symptoms HERE. Daniel is experiencing the chronic symptoms through my breastmilk. Due to his hypersensitivity to the food proteins that are already broken down through my body, we are not starting ANY solids until we have our numerous doctors' appointments over the next month or two.

I am afraid. I am afraid for my son's life. I am afraid I will lose my milk supply. I am afraid to feed him or myself because it hurts him. My human nature has taken over and I've forgotten that God is on my side. So I dive into His word and remind myself that God is on my side.

So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.
-Isaiah 41:10

and if I get tired of holding this fear in my heart, He'll give me rest

“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.”
-Matthew 11:28-30

I wonder if God gave me this challenge as a way to pull me closer to Him. General statement here: Everyone always says the darker of a place you're in, the more you tend to rely on Him. Everything seemed to be cruising along almost effortlessly, and maybe I forgot during those easy times that God was the one making it effortless, so He wanted to remind me that I need Him. I have to not focus on the why's or the what if's, even though my heart and mind ask those questions often, and learn to trust that God knows the path ahead, and even if things get rough, He wants me, Daniel, and Jason to get through this.

For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.
-James 29:11