Sunday, August 30, 2015

Recipe: Breakfast Sausage Patties {DHwRF, AIP}

I've found that in the mornings, it's really important to have some breakfast items that are quick grab-n-go. One healthy way I've managed to do this is by making a big batch of breakfast sausage patties on the weekends. I then keep the patties in a container in the fridge, and every morning I grab a couple, heat them in the microwave, then eat them in the car on my way to work. I also give each of our kids one of these each morning as part of their breakfast so that I know they're starting their days with some healthy protein.

The recipe I use is a personal modification of several recipes I've seen online or in cookbooks. It is AIP-compliant and also has a DHwRF-compliant option. Here it is below if you'd like to try it. :)



Breakfast Sausage Patties {DHwRF, AIP}

Ingredients:
  • 2 lbs ground meat (I use turkey, you could also use pork)
  • 2 tsp salt (or more to taste, I like mine a little saltier)
  • 3 tsp dried rosemary
  • 2 tsp dried thyme
  • 1 tsp dried sage
  • optional: maple syrup (leave out for DHwRF) or dried fruit (I always add some maple syrup now as I love the sweetness it adds)
Instructions:
  1. Combine all ingredients together in a bowl.
  2. Mix together well with hands until all ingredients are evenly dispersed.
  3. Cover and let sit in refrigerator for at least 15 minutes, up to overnight, to let flavors set.
  4. Preheat oven to 475 degrees.
  5. Cover baking sheet with parchment paper.
  6. Make patties out of meat mixture and set on parchment paper. If meat sticks to hands, rinse hands in water and the water will help prevent stickiness.
  7. Bake patties in oven for 10 minutes. Flip, then bake for another 10 minutes. Then set broiler on high for 2-3 minutes to brown tops.
  8. When fully cooked, remove from oven, let cool, then place in glass container in refrigerator. If you don't think you'll eat them all within a week, store some of them in the freezer.
You could also try adding other veggies or flavors, such as some onion or some spinach. Spinach is the next thing I want to try to sneak some extra nutrients into my kids. ;)

Enjoy!

Friday, August 14, 2015

Cyclic Vomiting? FPIES? Whatever it is, we don't like it.

I’ve briefly mentioned in past posts that our son Greyden has severe vomiting episodes with no known cause. These are sad, stressful, and sometimes scary times for us as parents. We feel hopeless as we watch our little boy struggle through extreme pain and nausea, inconsolable and white as a sheet. As quickly as the episodes begin, they end, and suddenly Grey is back to normal, happy, energetic, and hungry. It’s all so crazy and bizarre.

Greyden experienced his fifth documented episode this past Tuesday. Every time we have another episode, I find myself on a frantic hunt for answers for the next many days. I scour the internet and forums, try to talk to anyone I can who I think might have some small bit of advise on how to protect our son. I just want to help my little boy, to stop these horrible episodes. The pediatric GI says Greyden has cyclic vomiting syndrome, which is a disease that is not clearly understood, but it's believed that basically the brain misfires and sends your digestive tract into a seizure or migraine of sorts. Our allergist has concerns that it may be an FPIES reaction, which is a severe reaction to ingested food proteins. The naturopath leans more toward a food reaction, also. After doing my own reading and research, I lean more toward it being cyclic vomiting syndrome. Clearly, there's no straight answer.

The episode this past Tuesday morning started like every other episode Greyden has had.  They're incredibly predictable.  I had checked on him in his room as I'd headed downstairs in the early morning, and saw him curled up in a ball on his bed. Maybe that should have been my first sign, since he typically lays spread out while he's sleeping.  Shortly after, around 7 am, I heard his distressed wails at the top of the stairs.  “Mommy it hurts!! It hurts!!” I ran upstairs to find him holding his abdomen, crying.  I scooped him into my arms, ran into the bathroom, and flipped on the light to check his lips. Sure enough, they were losing their color. That is always our sign; his lips turn white. I took Greyden quickly into our bedroom where Dave was still sleeping, and tried to wake him as gently as possible, saying, “Dave, I think he’s having another episode.” Dave immediately climbed out of bed and we started our regimen.

We gathered a bucket and towels, went downstairs, and I held Greyden and tried to comfort him. We got him a cup of water, which he always requests. He was completely washed out at this point and kept moving in my arms, unable to get comfortable, whimpering and putting his hand over his abdomen and crying, “It hurts!!” After a short while, the pain seemed to get worse, and Greyden pointed to his stomach and said, “I can’t move!” Dave took him and held him at that point, and then suddenly Greyden started shaking. I’d never seen him do this before, and panic rushed through me. Dave and I quickly discussed if we might need to take him for medical help, and so I ran upstairs to put on enough clothes to head out the door. As I went past the playroom, I quickly glanced at Krew, who was happily playing with his Legos on the floor and was completely unaware of anything happening. I wondered if I should get him dressed or call someone quickly to come stay with him. I did neither. I ran back downstairs, where Greyden was still having shaking episodes. Then, praise the Lord, the shaking stopped. Greyden’s body relaxed, and I watched as his eyes rolled a bit and his eyelids closed. I’d seen this before with past episodes and knew that he was ok. He often did this. I watched his chest against Dave’s to make sure it was moving, watched the rhythm of his breath. I never know if he’s truly sleeping during these moments or if the pain is so severe that he is basically passing out.

Dave took Greyden out on the back porch and sat with him, I assume both for the fresh air and to prepare for the vomit we knew was likely coming. As we sat outside, I took this video for documentation (don’t worry, there's no vomit).


As you can see, all the blood had drained from his body. He was white as a ghost, but had a summer tan so instead he just looked orange all over. You can’t tell where his lips meet his face because it’s all the same color.


We sat outside for quite a while, just waiting. When we felt fairly certain that the worst was over and we weren’t going to need medical help, I quickly got Krew dressed and took him to our sitter’s house, where they were already expecting him for the day, although not for another hour and a half. I couldn’t help but start crying as I explained to Eileen why Krew was there earlier than normal, and why Greyden wasn’t with him. Fortunately, Eileen knows this scenario well by now too, and gave me a big hug and didn’t ask many questions.

When I got back home, Greyden was still lethargic and washed out, but had not yet vomited. He was asking for water, as he always does during his episodes. The water usually causes him to vomit, but it actually seems better that way because for a short while after vomiting he seems to be in less distress. So we gave him all the water he wanted. Sure enough, within 15 or 20 minutes he had his first major vomit. It was almost all water, as we expected. We wiped him and everything else in his proximity down with towels and changed him into clean underwear, then we covered the couch in towels and laid him down with a sippy cup of water and the iPad. A little bit of color had come back to his face and he was able to talk to us a little. He drank water and quietly watched the iPad when he was able to find a comfortable position. Twenty minutes later, all his color washed away again and he began requesting that we would hold him. We knew another round of vomiting was coming. Before long, there it was. This time we managed to get some of it into the bucket.


During one of his calm times, when the pain subsided enough for him to rest by himself.

We followed this pattern until 10am.  Intense pain and nausea, vomit, a little respite with some color returning to his face, water, pain and nausea comes back, he turns white, he vomits again.  With past episodes, the cycle has lasted until 11am or noon. This time, although it seemed to start out more severe than normal, it ended more quickly than we expected.  At 10 am he vomited one last time, and afterward requested some juice and apples. When he starts asking for non-water beverages and food, we always know that his episode is passing. His color continued to come back at this point, and before long he fell asleep sitting up on the couch, wrapped in a towel. He’d only had one sip of his juice and hadn’t touched his apples, but I felt confident that the episode was over. Dave felt confident about it too and decided to shower and head into the office for work.


(Yes, there's a mattress in our living room. The boys use it as a trampoline.)

I worked from the kitchen table until Greyden awoke an hour and a half later. As I expected, he acted as if nothing had ever been wrong. He bounced up from the couch, full of energy and color. He started chatting my ear off, requested food, and begged for me to let him help make his plate. Our little boy was back. I fed him, dressed him, and took him to the sitter’s for the rest of the day. She reported later that he was perfectly normal and energetic the whole afternoon.


Helping me with the mail right after he woke up.


Cutest weirdest face I've ever seen him make. Also right after waking up.

I share this story for several reasons. First, there’s always the chance that someone out there will read this and be able to offer us some bit of advice. We are searching for answers and so desperately want to know how to help and protect our little boy. Whether it's cyclic vomiting syndrome or FPIES, both of them have triggers.  If we could figure out these triggers, maybe we could avoid some of these episodes.  Second, it is good for my own documentation. The more details we can remember for solving this mystery, the better. Third, I think our family and friends want to understand what we mean when we say, “Greyden is having a vomiting episode.” They want to know how to support us and pray for us. And we cherish all support and prayers. This disease or food reaction or whatever it is is downright horrible. And it breaks my heart to know that there are kids out there who go through this far more often than Greyden. He only has episodes every two to six months. Other kids or adults with cylic vomiting or FPIES have them every month or every week. They can last for entire 24 hours periods or longer, and sometimes the kids or adults can end up in the hospital from complications.  It can be devastating.

For now, our little boy is through his latest episode and is back to his happy, bouncy self.  In a week or so, the intensity of this past Tuesday will fade from my thoughts, and for a while I'll rarely think about his episodes.  I usually forget to even wonder when the next one will occur.  But, as is always the case, the next one will inevitably come.  And then we'll just start all over.  But with every episode he has, we are able to collect a little more information, a few more clues.  So maybe, hopefully, eventually we'll figure this thing out.


Same kid, same day, just hours apart.

Monday, August 10, 2015

Roy Boy Turns Three!

To my dear Greyden Roy Boy,

You are now three year old, as of July 28th. For some reason, having you turn three didn’t hit me as hard as some of the other birthdays you boys have had. I’m not quite sure why. Maybe because our lives are so busy, maybe because the baby things have been disappearing from our house one by one for a while anyway. Maybe because you talk so much, so you seem older than you are. And talk you do, child. Nonstop.



You really are such a sweet, fun boy. Your mood is typically either complacent or happy. Oh, you get in your toddler funks and throw some fits, but even compared to what we went through with Krew, your tantrums have been easy to deal with. In general you have a very happy-go-lucky disposition. You don’t get sad or angry very often, unless your daddy or I tell you to give us some space (see paragraph below).


The hardest thing with you right now is how demanding and clingy you are when we’re at home. You want 100% of someone’s attention 24/7. If Daddy’s home, you choose him, and when he’s not home, you choose me. And then you follow us around, all around the house, never getting further than four feet from us, talking to us and asking us questions and requesting us to help you with this and help you with that. In your mind, we should not be permitted to do anything by ourselves, especially without consulting with you first. When Daddy is gone, you literally follow me into the bathroom and play right next to the shower while I’m showering, narrating what you’re doing and expecting responses from me the whole time. You stand by while I use the toilet, while I do my makeup, while I get dressed. While I do laundry. While I cook. While I clean. While I load the car. Wherever I go, there you are. And you talk the whole time, requesting things from me. The. Whole. Time. “Mommy what are you doing. Mommy why are you doing that. Mommy when are you going to get me food. Mommy I’m hungry. Mommy I want you to play this with me. When you’re done getting ready you will play with me? Ok. [One second pause.] Are you done now? Oh, no, ok. [One more second pause.] How about now? [Two second pause.] Now??? Why are you doing that, I thought you were going to play with me now. Mommy I’m hungry. Hey Mommy watch this. Mommy I’m hungry. Mommy can I put your makeup on? Mommy are we going somewhere? Mommy what’s this? Mommy…” And if I ask you to go play by yourself so I can be alone for a while, the whole world literally collapses. You lose your mind, sob and wail hysterically. You start making up excuses for why you absolutely must be around me and will tell me “Something hurts somewhere!!” It’s honestly very overwhelming and I’m not sure what to do with it. The other day I made you stay outside my room for 30 minutes while I got ready and you sobbed literally the entire time. I finally came out and knelt down at your level after 30 minutes and between sobs you asked me, “Can. I. Come. In. With. You. Now?” It broke my heart. I’m not sure what’s causing it or how to react to it. Hopefully this too shall pass.



What would be great is if you played with Krewson more, but unfortunately you’re not quite at the maturity level where he wants to play with you all the time. Sometimes you guys will join in together, making forts or running around or throwing things or wrestling, but more often than not he still prefers to play by himself, typically building things with Legos which isn’t something you can really join in on. You would love to play with him 24/7, but you’ve seemed to resign yourself to accepting whatever scraps he’ll throw you, which makes me sad at times. I do see you playing together more and more though, slowly but surely, so I still have hope that one day you’ll be good friends and play together a lot. We just haven’t hit that point yet.



In general, you are loud, hyper, a wee bit crazy at times, and “all boy.” You love cars, trucks, transformers, anything that shoots anything, wrestling, throwing things, hitting, running, and arranging fights between “good guys” and “bad guys” with your cars. More than once, to my embarrassment, you’ve gone up to an unsuspecting child and hauled off and slapped him as a friendly way of inviting him to play. So we’ve explained to you (several times) that it’s not ok to hit people until you ask them first, and even if they want to play that way, we still don’t hit hard.


Nine times out of ten, when there is bickering between you and Krew, it’s because you are picking on him. You have a defiant, ornery streak in you, but you do it in a cutesy deceptively sweet way that probably lets you get away with more than you should. We’ve had to work on your talking back also, as you love to tell us when you disagree with us and question the rules we give you.


At the same time, you sure do love people. You love hugs and being held, which is surprising given that when you were really young you didn’t want to cuddle at all. You will give cuddles at any time now and prefer to always be close to someone, both physically and relationally, with constant interaction.


In terms of “school stuff,” you picked up on your letters and numbers very early, many months ago now, even though neither your daddy nor I really taught them to you. I think you know pretty much the whole alphabet and can also count to a little above 20 (although you frequently get mixed up in the teens). In two weeks you’ll be starting up preschool again, which will be three mornings a week. I’m hoping you’re a little less reluctant to walk into the room and separate from me this year, but we’ll see. I’m not feeling too optimistic with how clingy you’ve been at home lately.


Your favorite sports team right now is no doubt the Raleigh Flyers, which is the professional ultimate frisbee team that your daddy is playing for. You request to wear your Raleigh Flyers shirt daily, and you love talking about Raleigh Flyers at any time of day. You will randomly and frequently bust out chanting a Raleigh Flyers cheer which cracks everyone up. I love your enthusiasm for your Daddy’s team and I know it warms his heart.


Speaking of those Raleigh Flyers chants, you have an incredibly loud and clear voice that rings through the air and has been known to trigger head pains in me and your daddy when we’re having headachey days. However, I think this could be an awesome thing, because you also love to sing and started being able to sing on tune and hit notes several months ago. So if it turns out you can carry a tune as you grow older, you’ll also have the vocal chords for it. You do have an opera-singing uncle so there’s definitely potential in your genetics. ;)


In terms of growth, you are currently about 37.5 inches tall and around 33 lbs. You're wearing mostly 2T clothes still, because boys' clothes run baggy, and in general your daddy and I prefer less baggy clothing on you boys. You feet are around size 7, and you are now POTTY TRAINED praise the Lord so you don't wear diapers anymore. :) Your eyes are a medium/light brown and your hair fluctuates between light brown in the winter and dark blonde in the summer. (So right now it's dark blonde.)


Your winter look (left) and summer look (right).


And of course, I have to mention something about your diet, although I want to keep it short and sweet. I don’t ever want you to feel like your health issues and diet restrictions define who you are, because they don’t. They are something you are going through, but they are not you. Nonetheless, I have to say that buddy, you absolutely rock with your diet. You are learning what you can and cannot eat, and when you know you can't eat something you absolutely don't eat it. When you see something in front of you that you’re not sure of, you ask if you’re allowed to eat it. You rarely, if ever, complain when someone eats something you can’t have in front of you. You just go with the flow and follow the rules. I’ve never seen you try to sneak anything or taste anything you’re not sure of. This is such a relief to me as your momma...I don’t feel as concerned about you possibly eating something you shouldn’t, and I also don’t feel as sad for you because you really don’t seem sad. I thank God so much for this blessing in the midst of all our health and diet struggles with you. It helps make my heart lighter.


Alright G-Roy, I think that’s all for now. Your Daddy and I love you so much and feel so blessed and privileged to have you as our little boy.

Lots of love,
Mommy

Sunday, July 12, 2015

Update on Greyden and Me

So, ahem, sorry about the hiatus.  I had some crazy work deadlines that pushed me to working almost full time, and then we've been traveling a ton over the last month.  And have I mentioned that we have insane diet restrictions that require me to spend an inordinate number of hours in the kitchen? Or that I have a husband, two young kids, two dogs, and normal life stuff to keep up with? Or that my husband plays ultimate frisbee for two separate teams and is gone at practices and traveling a lot? (And the kids and I try to go to the games as often as we can.)  Life swept me away and I sort of almost forgot I had a blog.  Once in a while I'd see my signature in my emails with my blog link, and I'd be like Oh yeah, I have a blog!!  I should write a post!!  And then the next thing would happen and thoughts of my blog would flitter and float away.  I think life is slowing down a bit now, so I hope to get back to my blog ASAP, but nevertheless I wanted to drop in quick and update you all on our health statuses.

For Greyden, the last time I gave an update, we had found that his eosinophil levels in his esophagus had almost doubled and we weren't sure what we would do next.  Since then, we met with his allergist and dietitian and also took him to see a naturopath and had some food sensitivity tests performed. There were some conflicts in opinions on how we should proceed (which we expected), but after getting results and talking with everyone, we've landed on an agreed diet for Greyden. We've now additionally removed pork, fish, rice, cocoa, bananas, and yeast (which includes vinegar). Because he's so limited in the proteins he's allowed to eat, we supplement his protein intake using elemental formula, which we mix into his coconut milk, applesauce, pasta sauce, etc.  We aim for him to get between 13 and 16 grams of protein per day minimum and I try to monitor the amount he ingests as much as I can.  We're also trying to limit sunflower seeds and celery, as he showed low reactions to those in the sensitivity tests as well, although those are not a definite exclusion from his diet.

I've begun to try to help him heal from the inside out as much as possible.  I'm trying to keep his carb and sugar intake low in case he has any type of gut dysbiosis, which could lead to leaky gut and food sensitivities and would be exacerbated by high carb and sugar intake.  I'm trying to get as many nutritious foods into him as possible so his body has the nutrition it needs to heal, and I'm especially focusing on broadening his vegetable intake.  Per the naturopath's suggestion, he's taking several supplements to help his esophagus heal and to resolve any gut issues, including a strong probiotic, l-glutamine, quercitin, unda, and aloe vera juice.  Basically, all day every day I'm focused on getting as much nutrition and as little "bad" stuff into his body as possible to give him the greatest chance for beating this disease.

The PPIs were a point of contention in the midst of this, as they always are.  The allergist and dietitian think he needs to be on them, the naturopath is pretty strongly against using them right now (she understands they are sometimes needed, but wants to try other approaches first), and Dave and I are torn in the middle. After some discussion, everyone agreed that it would be acceptable to wait and see the results of his next scope prior to putting him on them.  His next scope is scheduled for September 9th.  So now we wait and see.

As for me, I was floating along well on my DHwRF diet, but as soon as my vegetable and carb intake started to increase, my GI symptoms got pretty bad.  I know, from past experience and my previous diagnosis with SIBO in January, that this means my SIBO has likely returned (which happens in close to 50% of cases).  I also know that I'm not going to heal from my autoimmune issues and get healthy until my body gets the nutrients it needs from my foods, and my body isn't going to get the nutrients it needs from my foods until I can actually eat them and absorb the nutrients, and I'm not going to be able to absorb the nutrients until I heal my gut and stop the SIBO from eating the nutrients before I get them.  Which left me at: must kill the SIBO.

So I did a lot of reading and research over the last couple of weeks and figured out an herbal antimicrobial plan for myself.  I started it on Sunday.  Based on the die-off reaction I had (I had a horrible autoimmune flare and felt like death for several days) and the fact that my bloating and gas pain are already reducing, I think it's working.  If it works, I'll share it here on my blog.  If it doesn't work, I will probably end up back at the GI doctor for some more antibiotics.  I'm not going to be able to progress with the DHwRF diet reintroductions until the SIBO is gone, because I basically get sick from almost everything I eat when my SIBO is bad.  In fact, I had started reacting even to some of my DHwRF safe foods, such as zucchini and ground beef.  It was crazy.  So I'm pausing from reintroductions with my DHwRF diet until the SIBO is gone, and then I'll be back to it. Hopefully it will just be a month or so. 

Alright, I think that's all the updates for now.  I'm about to head out of town (traveling yet again), so gotta keep this as short as possible.  I'll be back soon. :)

Sunday, June 14, 2015

12 Weeks In - DHwRF

Yesterday was 12 weeks into my elimination diet!

I haven't done any update posts for the last three weeks, because life's been a bit busy.  I've been working more than twice as much as normal (almost full time) and we traveled one weekend and had friends in town another weekend. Keeping up with all that plus my diet and my son's diet and the normal-life stuff left me with about, oh, zero minutes for writing a blog post.

So, I'm finally sitting down on a Sunday morning before church to record an update.

The last three weeks actually haven't provided a whole lot to report.  First, I waited until the end of Week 10 before I felt like my bout with headaches was completely resolved.  Week 11, I either got a stomach bug or food poisoning or had a violent reaction to some cardboard-esque grean beans from Trader Joe's. Whatever it was, I was bed-ridden and throwing up and had diarrhea and almost passed out at one point.  No one else in the family ever got sick, thank goodness.  Then, a couple days after I was healed from that episode, at the beginning of Week 12, I got glutened.  It was totally my fault; I allowed friends to bring bread and cereal into the house and wasn't careful enough with instructing them to wash hands, clean the table, put dishes directly into the dishwasher, use a separate dish cloth, etc.  I know I'm an insanely sensitive celiac, and yet sometimes I just get lazy and I guess I want to feel like a normal person for a little while.  And then I always pay for it.  I end up with abdominal pains, bloating, and brain fog that comes and goes for days.  It's a week later now, and I'm still having daily issues.  It's so frustrating.

I did have a couple reintroductions.  First, I reintroduced potatoes, which went fine, hurray!!  I expected they would, as they reintroduced fine the last time I did the elimination diet.  Since potatoes are a nightshade along with tomatoes, I'm really hopeful that I'll be able reintroduce tomatoes next without any issues.  Fingers crossed.  I miss my tomatoes.  However, before reintroducing them, I need to get rid of my headaches.  Which leads to my next reintroduction...

After my headaches went away the end of Week 10, I tried reintroducing milk again.  I was fine with one serving, but more than one serving in a week resulted in another headache.  But here's the catch: I was consuming this milk through raspberry Starbucks lattes. (Yes, slap me on the hand, that's one of my few indulgences in life and I want to know if I'm able to have it.  I am able to differentiate celiac symptoms from other symptoms, and I do not get glutened from these lattes, so I want to know if they're safe otherwise digestively and for autoimmune issues so I can have a treat and a way to socialize.)  I assumed that the headaches from the lattes were a result of the milk, but then yesterday I had a raspberry latte with coconut milk, and this morning I woke up with a returned headache.  So now I'm wondering if it's actually the raspberry flavoring causing the issues, not the milk.  It seemed so unlikely to me that the flavoring would cause the autoimmune reactions, but now I really don't know.  I think I'm going to have to wait for this headache to go away and then try plain lattes with milk and no flavoring.  This is what I get for reintroducing several things at once instead of going step by step.  I should have done plain lattes first, and then added the flavoring.

Alright that's it for now.  I gotta get to church. :)

If you'd like to catch up on my past weeks, you can find them all below.

Digestive Health with REAL Food - Take 2
One Week In - DHwRF Update
Two Weeks In - DHwRF
Three Weeks In - DHwRF
Four Weeks In - DHwRF
Five Weeks In - DHwRF
Six Weeks In - DHwRF
Seven Weeks In - DHwRF
Nine Weeks In - DHwRF