Treading Water

As I ran my hand over Elianna's back tonight, and then to the backs of her knees, I gave glory to God for the miracle unfolding - the clearing of her eczema. I have often begged that we would find a cure for it before she was old enough to notice her body covered in the dry patches and learn to be self-conscious of it. We are making progress as we have just barely begun the GAPS Introduction diet. I have been moving slowly in an effort to monitor things closely, but it is time to pick up the pace. The broth and additional meats added are giving her much needed nutrients, but the corn based formula has brought back inflammation, and I am watching her little eyes change and her body begin to puff. Her cough is not going away from her recent virus, and we are having to administer albuterol via nebulizer every night. And she is hungry. Believe it or not, she wants food and she is looking to fill her belly. Perhaps the broth is not filing her up like the heavy, dense formula was. Perhaps her throat and body are feeling better. Or perhaps she has just finally tasted actual FOOD and is liking what she tastes.

I can not take her off of the formula, as it is adding the additional things she needs. I can not move forward with her yet, because I don't have her on a probiotic. The probiotic is critical for healing her intestines and stopping the reactions. But the right one is equally as important. There are an unlimited number of bacteria in one persons intestines, and many are not yet known. We commonly hear them referred to as 'good' or 'bad' flora, but an imbalance of 'good' bacteria can be just as detrimental. Which one is it? How do I know?

I feel the clock ticking again as we stand still. The broth will only sustain her so long, as the formula makes her worse again, and keeps her from entirely healing. She needs more caloric content than the broths are providing, and at this point she is still refusing to actually eat the pureed meats. I can only get so much into her bottle. Tonight I gave her nectarine puree at dinner and she happily lapped it up. She has become quite skilled with her little spoon. But minutes after taking her down from her highchair and putting her in the bath, her daddy called me to make observations. She was lethargic, slow, goofy, and drunk-like. BIZARRE! Only last night had I read about how an intestine overrun with certain flora can be fed with sugar, and then produce a type of alcohol, causing a drunk-like effect. Had it not been for the fact that I was the one reading the book, and Daddy was the one that made the observation, I would have found it too coincidental.

Time. This all takes time. Find meats, research meats, make broths. Get on a set schedule, keep feeding it to her as close to every hour as possible. Homeschool big sister, do household chores, feed the rest of the family, and let's not forget work a 3/4 time teaching position. Time is becoming more and more scarce. As is money. Buffalo meat today was $23.99 per pound.

I find myself observing the next crossroads on her treatment, and more decisions are about to arrive. I am grateful and feel thoroughly blessed for two weeks of success and immense progress. But now we are in a hold pattern, and for Elianna it can only be for a short time. One foot in front of the other. Day by day. Decision by decision. Asking for wisdom, looking for guidance, and not taking for granted any connection or incidence that has been put in my path.

For I know the plans I have for you, says the Lord. To give you a FUTURE, and a HOPE. This is what we hold to for Ellie.

Day >>10<< of *REAL* Food!

Today was day 10 of real food for Ellie. Since I have spent every waking moment on the internet, on the phone, driving to various stores and markets, and in the kitchen cooking, it has gone by extremely fast. This is a good thing because if I had any more time to think about it I would have vomited from anxiety.

Ellie has been doing fantastic on home made, grass fed, corn free and soy free bone broths. There is an amazing healing factor to consuming bone based soups. If you don't believe me, just Google it. The resources are amazing. Bone broths have been used for centuries because of their amazing healing nutrients.

Yesterday we added in pureed lamb and she had a field day. Today I added in pureed salmon, and she began a hunger strike. I only let her go about 4 hours protesting because instructions I (personally via email!!) received from Dr. Natasha Campbell-McBride, doctor of neurology and nutrition, said to feed her bone broth with pureed meats and marrow every hour. Back she went onto lamb for the rest of the day, and she did great. She still is battling a virus which is continually reminding me to be nervous. Occasional fussing, extra napping, stirring and waking in her sleep, all stop me in my tracks and cause me to ask myself 'reaction!??..or just virus???' I think some things will just never change.

This is the farthest thing any doctor here in the U.S. would recommend that you feed to an FPIES child. Meat means high protein content, and FPIES is a violent allergy to food protein. Instead we have fed Elianna fruits which are known to be low in protein (a.k.a. lower in nutritional value) and higher in sugar content. I now speculate that she has 'passed' these fruits because they have fed the bacteria imbalance in her intestines and continued her gut dysbiosis. I will continue to add some formula in to her broth until her stools look more regular, and I can get her onto a regimen of probiotics. These are coming in the mail.

Only 10 days ago I was on my knees begging for direction as I watched Ellie's eyes grow darker and foggier, and her little body show signs of dehydration and lack of nutrition. Her extended belly had become harder and rounder than ever, and her energy was low. She whimpered a lot, and spoke very little of her typical jibberish. Today I was in awe as I ran my hand over her belly to find that her eczema is disappearing where her skin has always been horribly dry and scaley. Her cognitive ability has increased, as she is now talking clear words, engaging in conversation and following directions in ways she has not done in the past. She is initiating play, and expressing normal emotions such as frustration, and preference. She is giving kisses and asking for food. All of this within 8 days. And no one will ever be able to tell me that food allergy and intestinal health does not influence the brain and development, because I have seen it with my own eyes, in my own child.

To Market, To Market, To Buy a Fat Pig

If you are aware of this little rhyme, the next line is 'home again, home again jiggety jig'. My attempts to find soy and corn free meat for Elianna has not allowed me a single jiggety jig, but instead has me traipsing all over the countryside.

My search has included the Davis Farmers Market, Sacramento Natural Foods Co-op, Nugget Market, Henry's Market, Davis Natural Foods Co-op, and all over the internet, just to name a few! Thankfully the general public is starting to catch up on the fact that soy is really not very good for you, so soy-free meats are getting easier to find. Corn, on the other hand, is a major staple for most meats in the U.S., even if it is pastured.

I have found grass fed, soy free, corn free beef at the Davis Farmer's Market as well as on the shelf at Henry's Market.

I finally found grass fed, soy free, corn free lamb at Trader Joes.

All farm raised fish has been fed soy and/or corn. Only wild fish is soy and corn free, and at this point I have only found pieces in the store and not the 'good' GAPs parts, such as fins, tails, and heads. (Did you know the fish head has the most beneficial fats?)

Chicken. Now this is a WHOLE OTHER STORY. Soy and corn free chicken is virtually impossible to find, and I find this rather annoying and a tad bit comical. Ninety percent of the chicken farmers I spoke with said: "Our chickens are fed soy and corn feed. Virtually all of the chickens in North America are." This comment alone I found very irritating. I appreciate the information, but it would have been nice to hear 'oh I am so sorry. Good luck.' Some of them even looked at me as if I was crazy. Which leads me to my other point.

Chickens are NOT from North America. They are not even from South America. In fact, they are from India and China, and from what anthropologists can tell, that is where they were first domesticated. Corn, on the other hand, is from North America. Those are not just two different countries, or even different continents. Those are two different hemispheres. Need I say more?

This week I finally found someone who owns a chicken farm locally, and who is willing to do special order chickens for me that are corn and soy free. Hooray!

Next up? I am currently looking into buffalo, venison and pork. Any farm raised bird, I'm afraid, is going to be corn fed. This eliminates quail, duck, goose, etc. SO.......to market to market to buy a fat pig! Wish me luck!

Ellie Had a Little Lamb!

While cleaning the freezer I was excited to find a few jars of beef broth that looked unbroken. This was great news since we were out of lamb and fish. I very carefully removed three unbroken mason jars of beef broth from my garage freezer, and being careful not to bump them on anything, I placed them in our bathtub to thaw. I was able to save them, so I did not have to make beef broth again right away. My mom was kind enough to make the fish broth for me the first time, and offered to make it again, which helped restock my broths. All I had to remake immediately was the lamb.

I was worried I would over do the beef broth if I did not rotate them enough, so we put her back onto formula and almond milk for two days. In an effort to get caught up.....here is a quick synopsis:

Adding the formula back in confirmed that it has been causing symptoms for Elianna. Her reflux and upper respiratory symptoms returned quickly, and I am now convinced that the corn based formula has caused her body to be in a state of inflammation for her entire little life.

The almond milk has not sustained her, and was causing her to be malnourished. This was a horrible recommendation by the doctors, who in their defense, have nothing other than trial and error to guide them. She needs the calories and additional nutrients that the formula provides while we transition her off and onto the GAPs introduction diet (with modifications).

We went one more round of broths: one day beef, one day lamb, one day fish. The results were fantastic! NO signs of reaction or symptoms. We eliminated the almond milk from her bottle entirely, and today we took a BIG STEP!

I made the lamb bone broth, and then pureed up the meat, bone marrow, fat, and other parts we have come to know as 'icky'. I poured the broth into small mason jars, and then added 2 rounded tablespoons of the lamb meat puree to each jar. Once shook up, it completely dissolved into the broth, making it possible to feed her in her bottle. And today that is what she ate! Correction: she CHOWED!

I was really worried that she would be turned off by the texture and that I would not be able to get it liquefied enough with my regular-joe-blender, but she did not seem to mind, and I think she even liked it! Let's hope the other meats blend up that easily.

To complicate matters and make the guessing game more fun (sarcasm there), she contracted a virus this week, and two nights ago her fever reached 104. Thankfully we have some corn-free compounded acetaminophen and ibuprofen in our cupboards, which brought it down to 100. After two late nights battling fever, the lamb broth with puree and some added formula was her drug of choice today. I feared that the amount she ingested would increase her chance for reaction and we would be in horrible shape by tonight. She drank almost 60 ounces of broth just during the day today, with a nap from 11:30 to 3:45! I was so afraid she would wake up screaming or that it was the start of a reaction, but when she woke up she looked better than she has looked, well...ever! With the bottles and the puree we let her paw at in her highchair at dinner, she ate about 4 teaspoons of lamb puree today.

MY FPIES BABY IS EATING MEAT!

Bummer

The next morning I woke up and received a science lesson on freezer containers. I gasped out loud as I opened the freezer door to find hours of labor and money down the drain - about 8 Mason jars had exploded in the freezer. I checked the garage chest freezer, and sure enough, they had exploded there as well. I now had SOME fish broth, SOME lamb broth, and NO beef broth. And two freezers to gut and clean. As I picked up a jar from the freezer to begin the process, it shattered and hit the floor, sending glass shards from the hallway to the living room to the dining room. Oooooh my.

Just the night prior I was amazed and the details God pays attention to, and how he orchestrates things for His glory. How this was going to fit in was a bit baffling. I sighed, and began the process of cleaning.

Let's Go Bone Broth, Let's Go!

Day one of beef broth trial went fantastic! She had it in her bottle with her almond milk, as well as separately like soup at the table. The best part? She loves it! No reflux symptoms, no visible FPIES reaction symptoms, and then we just had to wait for the poo to confirm.

Day two of beef broth trial was just as great. Ellie was chugging her bottles and had increased the amount to more than just her formula. I increased the amount of broth in her bottles to one ounce each time. She pooped, and all was fine!

Day three - lamb broth! Ellie at it, but reluctantly. She gave me a look as if to say 'seriously? what is this and where's the beef?' She didn't like it as much. Imagine that! Within 48 hours we went from massive panic because she could eat nothing, to beef broth and lamb broth, and her showing her first sign of not really liking the taste of something. Amazing! That afternoon I gave her another bottle of beef to not overdo the lamb.

Day four - FISH broth. BLECK! Thankfully my mom made this for me, because at this point I am not so sure I could handle fish heads floating around in water. Ellie liked this more than the lamb.

We were making great progress, and I needed to figure out where to go next. Another mom had communicated with the GAPs doc, and I received a little more guidance from what she forwarded to me. Next steps included getting a probiotic, beef liver, and a juicer. And things were looking amazingly good!

**note to the FPIES: Traditional recommendation for FPIES is to allow up to two weeks for the introduction of a new food and see if there is a build reaction. GAPs protocol says that if you rotate through you vary the nutrients and do not allow for the build to occur before the intestines begin the healing process. The food must be packed with nutrition and require no digestion (bone broth), because the intestines require an incredible amount of nutrition to heal and repair. According to Dr. Campbell, without this process (the patient) will react to ALL food (FPIES). At the moment, most North American allergists treat FPIES with aggressive food trials, similar to this process, but without training in nutrition or taking into consideration the digestive abilities of the food introduced. This makes sense since nutrition is not part of medical school in North America. Proof of this would be the separate degree required to be a nutritionist!

Farmer's Market

Saturday morning I headed to the Davis Farmer's Market. If you are out of the area and have never been to this particular farmer's market you are missing out. I spent a few hours there quizzing vendors on their wares, and was extremely pleased to find a resource for grass fed beef - NOT finished with grain. I loaded up on bones for stew and headed home to make Ellie her beef broth.

We decided to give her a day to rest and re-coop, because the two scoops of formula in each bottle of almond milk was making a HUGE difference, and she was bounding around the house once again. For whatever the reason, the corn formula had not brought back the reflux or the reaction symptoms (though we had yet to see another poop to be sure).

I was now convinced that part of her problem had been the die off effect of her intestines. I believe that she may have to get worse before she can get better since her intestines are over run with an imbalance of good and bad bacteria. When this is disrupted and bacteria die off, toxins are released into the system and can cause side effects. If this is documented and understood to happen in 'regular' people, it makes sense that it could happen to an extreme for Ellie. My goal is to manage the die off and make it a gradual transition, and going cold turkey to the almond milk was just too much for her little system to take.

Saturday night I loaded the fridge and freezer with home made beef broth, and prayed that I was making the right choice. The nutritionist had wanted us to try lamb, so this could not be too far out there, right? At least beef would be a little bit more affordable than a toddler on a diet of rack of lamb!