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?!

Our (Not) Vacation

Daniel and I had a nice, although somewhat stressful, vacation. We visited friends and family during the midwestern heat wave. 100+ heat indexes almost the entire 3 weeks we were gone. Weird looks from people at rest stops while I cooked hamburgers in the express cooker. Having to explain myself to every new family member or friend we visited. Keeping a VERY close eye on Daniel to make sure he didn't put anything in his mouth or get kissed by unwashed mouths and held by unwashed hands. I vow to never travel with Daniel again until he's healed of these numerous food intolerances. It was definitely worth all the trouble so he could meet all his family members who hadn't seen him yet. It was awesome to see him with his great grandparents and his cousins and aunts and uncles. We only had a couple of reactions the whole 3 weeks so my paranoia and overprotectiveness paid off. I'm happy to be home and back into our old routine. The trip made me really value having our safe zone for Daniel and renewed my spirits about feeling like a shut-in. We may have no social life right now, but it's far less stressful this way for us and in a couple years, maybe sooner, we won't have to be so careful anymore.

My How Time Flies

It's been a while. We've been busy with summer vacation, a birthday party and life in general. We're still kind of hiding from everything. Trying not to rock the boat. Avoiding doctors. I have a lot of catching up to do, and I plan to do it...just not today. Daniel's first birthday party was last night and I am exhausted from all the prep work it entailed. I'm writing this as an IOU for the many blogposts I have to write! In general, we are all doing well!

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!

Just What I Needed

So I'm sitting in church this morning, half listening to the sermon, half occupying Daniel, and a very specific part of the sermon just happens to catch my ear. It's funny how God always sneaks things like this into my life. It was exactly what I needed to hear. The sermon was about Jesus being on the cross and feeling the weight of all of our sin on Himself and crying out to the Father, "My God, My God, Why have you forsaken me?" As the mother of a child with an illness, you experience many hardships. You may lose friends, feel stress about the health of your child, become angry at God, get in fights with your spouse, feel financial hardship while trying to feed your child and pay for doctors' visits and alternative medicine methods out of pocket, etc. Sometimes you may want to cry out those same words. BUT, you will NEVER EVER have to experience what it's like to be forsaken by God or feel the weight of the world's sin on your shoulders. EVER. You know why? Jesus felt it for us. And because God forsook Jesus as he hung there on the cross, feeling the weight of my sin, your sin, everyone's sin who has lived, is living, or will ever live, I will NEVER know what it's like to be forsaken by Him. I needed this reminder. Even though I sometimes feel alone and like God is not with me, carrying me, comforting me, and guiding me, He is catching my attention on a normal Sunday morning in church, as my mind wanders during the sermon while tending to my child's needs...

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!