Sunday, May 29, 2011

Die Off

As we have transitioned Ellie onto the GAPS introduction diet (designed for healing), we have begun to use the phrase 'die off' more and more frequently. It has taken us quite some time to figure out what 'die off' is, and how it specifically applies to Ellie. I have listened to other moms talk about it, researched it, and checked various GAPS support groups for more information. What is die off? How do you know if what you are seeing is die off or a reaction? When do you know if it is too much die off? Can things other than a probiotics cause die off? The questions kept coming, both in our house and in my conversations with other moms of protein intolerant kiddos. I certainly do not have the answers, and am far from being a doctor, but here are some tips on what I have discovered.

Die-off is a positive phrase used to describe negative symptoms that can happen when introducing a probiotic, or probiotic food. In my limited experience, it does not seem to be a medical expression used or understood in the traditional western MD office, but then again, probiotics are not usually discussed there either. The reason? My favorite GI said that there are not adequate studies showing that they make a difference. I found this peculiar so I checked the references used by Dr. Campbell-McBride when writing an entire chapter on the medicinal use of probiotics. In the index of my GAPS book I found FOURTY-FOUR (44) accepted medical references. Way to go Western Medicine (insert sarcasm here).

So, the question remains, what is die off? The body is a host to millions of bacteria. They need to live happily together in a harmonious balance for us to be at our peak of health. Unfortunately there is an unmeasurable list of things that will get them all out of wack. The most common ones discussed are antibiotics, illness, and refined sugar. All of these things and many more cause an imbalance, and symptoms ranging from allergies to eczema to asthma to who-knows-what can erupt. When you disrupt these out of balance bacteria they die, hence the 'die off' effect. The death of the overgrown buggers release extra toxins into the body systems. The 'die off' is usually seen as increase in problematic symptoms. Most common is eczema or rash. But it can be an increase in ANY of the symptoms that your body is suffering from as a result of this unhealthy condition. Unfortunately this is unique to every single individual, so while some are common, there is no way to say exactly what it will be.

Ellie's die off has ranged from mild to severe flares with her eczema, to reflux, to acidic poop, to a more bloated belly than normal. These symptoms have all mimicked an FPIES reaction/fail at some point and have been very confusing to push through. The more bizarre symptoms have included a change in tongue color, itchy nose, emitting a sweet smell, and regression in speaking. Her symptoms were worse when we first began the diet of broth, and also at the introduction of her probiotic. With each slight increase in the probiotic dose her die off flares for a couple of days and then goes away.

I fully expected her worst die off to be seen with the introduction of a purchased, in the bottle multiple strain probiotic. I was wrong. When we were finally able to begin giving her fermented cabbage juice (like the juice from sauerkraut made of only cabbage) her die off was the worst yet. We started with only 1/8 of a teaspoon of juice in one bottle per day, and stayed there for a couple weeks. It was hard on her. We then finally increased the dose to 1/4 teaspoon in one bottle per day, and her eczema went berserk. She was waking at night crying and scratching. She never did this while even on formula (corn). Dr. Campbell-McBride responded that this was her body ridding itself of toxins. Holy cow! How many toxins could her little body possibly be hanging on to? After about a week of her nighttime episodes I reduced the fermented cabbage juice back down to only 1/8 teaspoon. In a few weeks we will try increasing the dosage again. I now understand why the fermented vegetables are such an important part of her diet. One more win for natural foods.

For those of you who have made it this far and are actually looking for information on die off, I will include this last note: die off can occur from food. There is a short list of probiotic foods that can cause die off, specifically in those with severe gut dysbiosis. Let's take the bone broth, for example. I did not recognize some of Ellie's symptoms as die off when we first started her on the bone broth and meat. (cut me some slack, there was a lot going on!) But now looking back I see them clearly. How does that work? The bacteria in the intestine (and body if it has spread) has to eat. It LOVES to eat those yummy carbs that you ingest through sugars, starches, grains, etc. When you restrict your diet to that which requires very little or no digestion, the food passes right on by, starving those nutrition robbing bacteria....which then die. The final result = die off.

Ta Da! Die off: the mystery behind the words is not much of a mystery after all. It is simply bacteria...dying off.

Tuesday, May 24, 2011

Corn Part 2 - On To Eggs

One of the most ridiculous things to find corn free is meat and eggs. We found a local farmer who has switched his eggs over to being corn and soy free after receiving an email from me. When I asked him why, he said he had already been on that path. I am so grateful!

We have switched our family over to his eggs which are completely comparable in price to conventionally fed eggs found at the farmer's market. And I have waited and waited and waited and WAITED for the right time to feed them to Ellie. We planned to start with the raw egg yolk (the proteins in the yolk and white are different, and the yolk is particularly rich in nutrients and easy to digest).

The day before giving her the egg yolk she was gifted a balloon from the supermarket. We spent the day telling her to get the string out of her mouth. She kept putting it in sideways and sucking on it. That night she complained of her eczema and kept scratching at her arm creases and the backs of her legs which were flaring up. I grabbed a small Melaleuca Tea Tree oil product from the pantry and rubbed it on those spots. She fussed. I thought it was odd since tea tree oil always helps my eczema, but wrote it off to it burning.

The next day we started egg, but she was acting a little funny. About mid day I noticed she had red marks on the sides of her mouth. The string from the balloon had left marks. Well, burns actually.

These pictures are a bit grainy, but you can still see the corners of her mouth and her reaction face.

What could this reaction possibly be to? None other than corn. One latex balloon powdered with corn starch left burns on her face.

I put the breaks on the egg, and rubbed my own eczema with the tea tree oil. It itched! What in the world? I flipped it over and on the back in the most microscopic print were 'other ingredients'. UGH. I knew better than that! And what was listed? Wheat germ and corn oil. Into the garbage it went.

The good news is that it only took her about 32 hours, one fussy night, and two reaction poops to move past this exposure, compared to what used to be weeks of recovery. Hooray once more for healing. Today she would point to the scabs at the corner of her mouth and say 'owie', but they were noticeably better. And we braved forward with egg yolk once more today. So far so good!

Sunday, May 22, 2011

The Never Ending Corn Story: part 1

Each step adjusting to Ellies FPIES diagnosis has been a steep learning curve, and each home change has required serious work. Except for corn. Corn granted me my first official panic attack.

Ellie recieved her diagnosis of extreme corn intolerance from her allergist. He read the results of her atopic patch test (APT), and knowing her extremely limited diet of amino acid based formula and pit fruits at the time, he sharply turned to me and said WHERE is she getting corn??? Of course I replied that she wasn't. I was not feeding her corn! He insisted she must be. He believed the reaction could not be so severe without continued exposure. YES she is. He insisted. WHERE is she getting CORN!?

I was offended! I was baffled! He promptly reached into my diaper bag and grabbed her can of formula, flipped it over and began reading the back. I was ticked he had grabbed into my bag.

RIGHT HERE, he declared. The FIRST INGREDIENT. He tossed the can at me and then said: We have to get her off of that. What else can she have?

My jaw hit the floor at that point. Well, lets see. She couldn't have breast milk. She reacted violently to two other amino acid based formulas. And oh...that's right. EVERY baby formula made in the existence of the WORLD (this is not an exaggeration) has a corn base. Yup. Thats right. Corn.

This was not going to go over well with the GI. I knew it. It was very rare to find an allergist that believed a child could have a reaction to the highly processed corn base in the hypo-allergenic prescription grade formula. But hey, thanks to Ellie we are all about breaking those assumptions. After all, the formula is HYPO allergenic, not NON allergenic. And if it was not possible to react why would there be so many different ones with various degrees of soy oil, MSG, and other lovely ingredients?

I was suprised to find the GI somewhat supportive. The actual problem was figuring out what to feed her. I was also surprised that it did not go over very well with me. At this point I should have been used to adjustments.

After this information I headed home and began to process how to remove the corn from my home. I googled and found some living corn free sites, and then all of a sudden I couldn't breath. I actually had to get up and pace back and forth, tears streaming, and feeling suffocated. I called a good friend and said help! talk me down! And she was able to...somewhat.

Since that time about 5 months ago, I have found my fear and anxiety turn into anger. A corn allergy is a frightening thing in today's world. Lotions, shampoos, preservatives, plastics, medications, salt, bottled water, department store meat, disposable diapers. Citric acid, dextrose, distilled white vinegar, fructose, vanilla extract, MSG, alcohol. All of these things can leave burns on Ellie's skin. Our entire home has been flipped upside down.

Food Aversion

Ellie has a food aversion. She doesn't take the spoon, she refuses to let us feed her, and she often does not put things in her mouth or swallow them at all. We have spent days reflecting on this, and have had doctors recognize her delays as being connected to her protein intolerance. We have discussed how she has learned this behavior because of pain. But today I wonder if that is the case.

Every FPIES mom, at some point, must tell their child 'no, you can not eat that'. Today I found a post I wrote when Ellie was 13 months old. She wanted food. She fought me for food. And I told her no. For the sake of keeping her safe, I would not let her join in on what she saw us all doing - eat.

She was 13 months old. She was not at baseline, and she was most definitely in pain. She was bloated and had never known what it was like to not barf everything up that she put in her mouth. Yet she still begged. And reading this older post had made me wonder - perhaps it is more of a learned behavior, that we now have to un-do. I have spent months running around behind her, taking things out of her hands, out of her mouth, and not letting her have anything except for her bottle. Can I blame her that she is so attached? Can I be surprised that she wants nothing else, and that she is offended and visibly shook when I try to even change the nipple?

Another FPIES mom recently had her twins go from not eating, to swallowing and asking for more soup, within a matter of days. That to me is amazing. And that to me shows that this is something that is now up to Ellie. I have taught her to be protective of her own mouth, and have shown her the importance of being careful. Now I pray that she will move past that sense of security and become a part of our family table.

I searched for months on craigslist until I was able to find a specific high chair that would allow her to be at the table with us and look like us.

She is using it, and in the last week she asked twice to be fed water from a bowl while we ate dinner. Last night I tried to feed her broth the same way, and she was less receptive.

Perhaps she will soon make the connection of making that food fill up her belly. And perhaps she will understand that it does not have to come from her bottle. Until then, I suppose I have a toddler on a bottle. Oh, well!

The Sun: More Than Your Average Ball of Fire

After taking a look at Ellie's Vitamin A levels, I took a look at her Vitamin D. Another mom quickly reminded me that I was forgetting about the sun. Oh, yeah! What happened to all of those articles saying that Vitamin D comes from the sun? Why the focus on getting Ellie into eggs?

Yes, the best resource for Vitamin D is the sun. Hands down, it is the easiest way for our bodies to make it when the rays hit the cholesterol in our skin. There is a lot of controversy about skin cancer, and sun, and sun screen, and tanning. Honestly I do not have the time right now to research it all or try to get to the bottom of something funded so obviously by big business. It will have to go on the 'when I get to it' list. What I do know is this:

-God really had something in mind when he made the universe and even gave the stars and planets their jobs. A ball of fire in the sky that gives vitamins to our body? Now that is pretty amazing.

-Ellie needs lots of Vitamin A. Now that the rain is finally deciding to move past us, I will be forcing her to spend some time outside every day. It will be in small increments and then increase so that she can build up her gradual tan. Next winter, perhaps we will even learn from her older sister and take up dancing in the rain. Any sunlight counts!

-Ellie will not be using sunscreen (nor will her sister). There is not a 'safe' sunscreen on the market, and there is lots of disagreement over whether or not intake of vitamin A is restricted with sunscreen use. She will be wearing lots of hats, long sleeve shirts, and other coverage if needed. Does this make me nervous? Absolutely! My brain is about to explode from all of the change in our family. But at least I no longer have to devote so much to searching for a sunscreen that is 'natural'.

-Ellie has a toxic body. It is full of proteins that have leaked past her protective intestinal barrier, and is full of what which she inherited from me (another post entirely). These toxins and intestinal issues make her need for Vitamin A great, which is why the food supplements are so incredibly important for her.

So on to egg. Here we go, hoping for a pass!

Saturday, May 21, 2011


I have this other blog. I started it before Ellie's, and I never really worked out the focus of it. About 5 months ago I just quit writing on it because it felt like too much of a diary, and I have been uncomfortable putting so much of myself out there. Recently, I decided that I wanted to get back to it and blog more about our home school endeavors and my personal junk, so I was browsing through old posts.

I came across the post I made at the time of Ellie's diagnosis, and it stopped me cold. Not only did it bring up the emotion of that diagnosis, but it showed me how incredibly far we have come in such a short time. Ellie has made progress that was not expected, and we have chosen a path of healing that is exactly the OPPOSITE of what mainstream medicine recommends. I also appreciated the reminder that our favorite GI never fully bought into the 'she will out grow it' phrase. This phrase has been a personal pet peeve of mine since day one. 'At some point their intestines mature'....'They tend to no longer react'....blah ditty blah. Hooray for some children that at some point their intestines have healed, and they can eat. They, by 2 or 3 years of age, have been on an elemental formula that their body can thrive on long enough to see healing, and be able to begin eating food, following a strict method of introducing them one at a time. For those of our kiddos with a severe corn intolerance, we may not be so lucky.

For the sake of insight, and a glimpse into the beginning, here is a copy of this post:

Who Would Have Thought? June 21, 2010

Today I headed to the Pediatric GI specialist for Elianna's follow up appointment. Last week we received the good news that her blood tests came back negative for Celiac and for a whole gamut of allergies. I entered the office and jokingly told the doctor I was hoping I would show up and he would just tell me she had a rough first four months before her dairy protein diagnosis, and that all she needed was a good round of probiotics and would be good to go. He laughed. And then told me, ' We can fake throwing up but we cant fake diarrhea'. Darn.

We love this office. These doctors are incredibly on the ball and always have the latest information on anything random. Dr. Barad can spout random facts about anything such as 'well, yes, actually, Sub-Sahara Africa has the highest incidence of Celiac's in the world with 1 in every ?? having it'. I don't even remember the number he gave. So today I felt blessed to have such a knowledgeable doctor, but not so happy at the diagnosis.

Who would have thought that I would be told my 10 month old daughter can not have ANY protein. None. This apparently occurs in over 50% of infants diagnosed with her dairy and soy processing disorder. What she has is relatively new and is called FPIES (referred to as F-Pies), and stands for Food Protein Induced Enterocolitis Syndrome.

The bad news first:
No protein for now, and most likely at the earliest will be 18 months of age. The treatment is to get nutrition from an extensively hydrolyzed casein formula, which is what we are already spending between approximately $500 and $700 a month on to feed her. She can be on this formula until she is 2 if she has to be, according to the pediatric nutritionist. She may not have grains, legumes or meat. Did you know that rice has protein? There is also a list of highly allergic foods that the lucky 3% of kids with this diagnosis get to deal with. Top of the list are rice, sweet potatoes, and bananas. Geesh. The top things we are supposed to feed when beginning solids! No wonder we are having problems.

The good news last:
Perhaps with this diagnosis we will be able to get the insurance company to say the formula is actually medically necessary and they will pay for at least a portion of it. Food will be easy since she is on a restricted diet of formula and fruits for the next six weeks. We are to start with apricots, plums, and apples, the three least allergy prone foods for all humans anywhere. (again, who would have thought?). The majority of these kids outgrow this syndrome between 2 and 3 years of age. GREAT NEWS. (however there is a long extensive process for introducing these solids successfully).

What now:
We have a referral in to the allergist. Our GI doctor said he is comfortably the initial diagnosis and saying that she is on the FPIES spectrum, but wants the allergist to examine her and weigh in as well. I have been instructed to purchased fresh, organic fruit that is in season and made food for her. And now I begin the process of trying to learn what kitchen items can retain allergens (anyone know about cast iron pots and pans?).

I think that is all. Though my brain is pretty fried from rethinking and processing. I am so happy we have a diagnosis finally. Whew. I need a glass of wine!

I will follow up later with another post explaining how this is diagnosed and how it falls in the allergy category. Time for dinner.

Wednesday, May 18, 2011

It's Certainly A SUPER Market!

Over the last 6 months or so I have begun to take note of some most interesting items on the shelf at the supermarket. I finally decided it would be fun to share them with all of you. Perhaps you have already noticed them, or perhaps not. Perhaps you buy them (sorry). Another FPIES mama recently shared the picture of an apple 'juice' she found at the store, because she knew how much I would enjoy it. I can't seem to get it to post here, but it was a lovely green box with apple, that says "Apple Artificially Flavored Drink. No Juice." The question is: what then is it exactly?

Below are a few of my favorites. Warning: sarcasm alert

Let us start with this lovely Rice 'cheese' pictured at the left. Galaxy Nutritional Foods has figured out how to make American flavored processed cheese food alternatives out of rice! It is soy free, cholesterol free, lactose free....but when I turned over the back, guess what? It has diary casein in it. Darn. That's ok. The rice is not FPIES friendly, anyway.

Next up we have something that I found while sea salt shopping.

Yup. That's right. The 'no salt' for your low sodium needs. There were no ingredients listed.

Contrary to popular belief, fructose on the shelf is not derived from fruit. It is a nutritious sweetener highly processed from high fructose corn syrup. What? You didn't think you could process high fructose corn syrup? You can! Read the sign! This lovely little sign was courtesy of the bulk bins at Winco (in case you are looking to purchase some).

Ahhh....Xantham Gum. An FPIES favorite. From our local health food store. Gluten free, wheat free, and an 'authentic food'! For the preservative need in you. Feel free to add this soy or corn based ingredient to your baking goods to give it some fluff in the name of 'gluten free'. (Not FPIES safe)

This one made me stop and laugh. Do not forget to pick up your imported octopus, in a can, with SOY and olive oil. Uh......

I had to include this most frustrating picture. It is the back of a granola bag. The ingredients look great, right? For our corn free home I was thinking it was a good choice. Until I read the black italic writing. Packaged in corn. DOH! Did I mention they are replacing BPA products with a corn based plastic? And the 'new' Styrofoam comes from corn? That meat packaging you see in the store? Agh!

Last, but certainly not least, I had to include one of my most favorite items now featured on the grocery shelf as well as at the local farmer's markets. Vegetarian chickens. That's right. I am not really sure who is creating the need to produce these. It is full of confusion for me. The vegetarian that wants bug and worm free eggs? The consumer that doesn't know chickens are designed to eat bugs and worms? Those hoping for the ethical treatment of animals, not realizing to keep a chicken from eating a bug they have to be fully caged and not on the ground? I am so confused on this one!

I used to get frustrated because I wanted to be able to shop the market and throw whatever I wanted to in my basket. Stupid FPIES, I would think. I can no longer shop without thinking. Now I know that our new normal has opened up a more healthy realm for the entire family, and that if I really look, most things in life can give you a good laugh.

Duh, Mommy!

Ellie has been peeing like a crazy child for months now. I have continued to beg for ideas on how to get through four hours at night without having to change her bed, or keep her in cloth diapers without having a mess. ONE round of pee will fill ONE Huggies overnight diaper, and Pampers can not even hold that much. I just assumed it was because she is on a liquid diet. And then I read about how the body will produce more urine when it is healing and cleaning up the body. I just kept plugging forward and cringing at the thought of spending money on more diapering options. Her kidneys were clearly doing their job! Right?

We recently found an Osteopath Doctor who is also a GAPS doctor. She is two hours away, so we did the medical history portion of Ellie's appointment on the phone. She asked me how I made the bone broth, and two things came up. First, that I was not using a vinegar of any kind to extract extra minerals from the bones. Distilled vinegar is made from corn, and the other alternative is apple cider vinegar, but Ellie has failed apples. So I am on the hunt for a 'vinegar' we can use.

The second thing she asked was why I was not putting any sea salt in her broth. Why? I could not seem to put it into words. Well, it never came up in any of my email communications with Dr. Natasha to include it, and for some reason I thought it would not be a good idea. Why would she need that extra salt? We get more than enough salt and wouldn't it be bad to add too much?

Except I seemed to forget that she is getting NO salt. And as the doctor said 'Well if you give her salt she will probably pee less and be able to start retaining fluids easier, and regulate her electrolytes more...' I thought...'OH MAN! DUH!'

So that low sodium on her blood work? Yeah. That would be my fault.

We started with one teaspoon of sea salt in about 6 quarts of broth, and we noticed a difference right away. We now are putting in two teaspoons for the 6 quarts, and the night time troubles are already easing.

What can I say? Big time, oops. I bet the broth tastes better, too!

Tuesday, May 17, 2011

More On Bloodwork

This post is going to be full of medical information and references, along with some Ellie information, so it may not be a post for everyone. Though it will give you a glimpse into my daily research ventures!

As fantastic as it was, Ellie's blood work had four interesting pieces of information: elevated Vitamin A, elevated Neutrophils, low sodium, and missing iron. OK not missing iron. What I mean is that our lovely doc forgot to order an iron test. MAN! So I will be contacting our pediatrician about having blood work done for that. Such a bummer!

Low sodium I will address in another post. (stay tuned)

Investigation into the Neutrophils revealed that they are a type of white blood cell that helps your immune system to fight bacteria and fungi. This makes perfect sense for Ellie, whose body is riddled with yeast and bacteria as a result of severe gut dysbiosis and immune system imbalance. This showed me that her body is working hard to rid itself of the fungus and bacteria, and that the Nystatin we have been giving her is serving a purpose. A good, multi-strain probiotic, combined with compounded pure Nystatin powder for a long period of time will help her body to heal and give it the jump start that it needs from having battled with corn for so long.

The Vitamin A was most interesting. My automatic assumption was that she was getting too much and to look for signs of toxicity. The new osteopathic doctor said she was not sure but that she would cut back on the liver to help with this level. Made sense. Then another FPIES mom (who knows just about everything under the sun) brought some interesting articles to my attention about vitamin A. For your most enjoyable reading (should you choose), here they are:

Vitamin A: The Key to a Tolerant Immune System?

Roles of Retinoic Acid in Induction of Immunity and Immune Tolerance

And one more

Basically, from what I can put together in my research fried brain, is that Vitamin A is used to down play inflammation. If you would like to know specifics about which T cells and such, it is all explained in the previous three articles.

After reading these articles I thought to myself: Wait a minute. Vitamin A goes with Vitamin D. GAPS and my emails from Dr. Natasha promote these things for Ellie....why in the world have I not just looked back at my GAPS book?

Here is what I found:
The parent vitamin A is called retinol. Real (straight-up no conversion needed) vitamin A that the body absorbs comes from animal products, but bile and pancreatic enzymes are also needed. There are publications that say you can get vitamin A from fruits and veggies in the form of cartenoids. Cartenoids have to be converted into vitamin A in the body which takes magnesium, zinc, amino acids, and other important things that immune-compromised bodies are already lacking. Toxins also can block carotenoids from being converted to Vitamin A, and immune-compromised bodies are generally very toxic.

(This explains the need for Ellie to have the additional liver, and why it is most unfortunate that she has not been able to tolerate fermented cod liver oil. The notes below relate to 'real' vitamin A, and not synthetic supplements.)

What else I found:
Vitamin A used to be called the "anti-infective vitamin" because of its role in immunity.

And the best sentence yet?
"Supplementation of vitamin A in children shows proliferation of normal B and T cells and better response to antigens." HEY! That relates to all of those previously mentioned medical articles!

Moving on:
Regarding the overdose of vitamin A, it takes more than 10 times the daily allowance for a period of weeks to years, which would equate to 10 teaspoons of cod liver oil per day for a child.

So since Ellie's Vitamin A levels were elevated and not off the charts, I now started wondering about her vitamin D.

page 282 of GAPS:
Vitamin D and Vitamin A "do not work properly without each other and a deficiency in one creates an excess in the other." So what are Ellie's vitamin D levels looking like? Low. Low normal. In fact, it is within the normal range but has not gone up since starting GAPS. Hmm.

How do I help her to increase those levels of Vitamin D for body repair, and to use up that Vitamin A? Foods with large amounts of 'real' vitamin D are cod liver oil, eggs, butter, and liver.

AHA! Seriously. That was a GIANT A-HA! for my tired brain. Ellie did not tolerate cod liver oil. She is already getting liver. She needs something else, and Dr. N has said the next steps for her are to get her on eggs, and try for homemade raw goat milk ghee. Both seemed absurb to me when looking through the FPIES filter. But from the nutrition and GAPS filter? Perfect sense! Perhaps it is time to look past the vegetables and examine eggs and *cringe* homemade raw goat milk ghee. Whew. My brain needs some REST!


Monday, May 16, 2011


One positive thing came out of the $30 co-pay to the GI we won't be keeping, and that is the blood work. We have not had an entire round of blood work done on Ellie for several months, and now that we have completely started GAPS with her, I wanted to see what her vitamin levels looked like.

The comical part of this is that I asked for the blood tests almost immediately at the appointment, including some specific vitamins that the doctor said he doesn't worry about as a GI doctor. He said something about how GI doctors only worry about fat soluble vitamins or something goofy, to which I told him I wanted them all run. He agreed politely, which I appreciated.

The appointment progressed and once he discovered that we had taken her off of the amino acid based formula and put her on bone broth soup, he was very puzzled. He asked questions like 'where is she getting her protein from?' and 'how many calories would that be?' He did not seem to care where I got my information from, but he was not fully invested in our appointment from the beginning.

At one point he was looking rather concerned about the answers I was giving him, and told me that he needed to consult with the nutritionist. He left the room, and we waited some more. Now the nutritionist in this office is fantastic. He is not completely on board with what we are doing, and is not familiar with GAPS, but he is supportive in general. All of this to say, I was not concerned. The doc returned to say that it was not possible to fully track calories in broth, so he would like to offer a round of bloodwork to check Ellie's levels. HAHA! I almost laughed outloud. That would be GREAT, I told him.

After the appointment we headed off for the lab draw and waited a week or so for the results.
And how did they turn out, you are wondering? Wonderful! In fact, her vitamin A level was elevated, meaning she may be getting too much. And all of her levels were as good as they were on the elemental diet, and some even better.

This was SO exciting for me! Even though there are decades of experience and research that have gone into GAPS and SCD, it is not been readily accepted by mainstream MD's. I could not help but doubt that her bloodwork would come back complete. But it did! Really? ALL nutrients provided on bone broth, meat, and zucchini? Amazing! That was more proof than I could have ever asked for.

On the flip side, I sort of wanted to go take the paper proof and rub it in the doctors face. I had to ask forgiveness for that.

Friday, May 13, 2011

We Won't Be Keeping This Doc

A few weeks back we had the opportunity (insert sarcasm here) of attending our long awaited appointment at the local pediatric GI office. We met the doctor who Ellie was assigned to after our favorite GI relocated. I truly thought I had low expectations for this appointment, but they just were not low enough. Luckily I had spent a lot of time praying about it, and when the doctor walked in I just knew that he had no information to present. He did not appear confrontational; he appeared intimidated. And that helped me to have grace for him.

That being said, he still did not conduct a thorough examination of Ellie, and he did not appear to have taken much of a look at her file. He already knew how upset I was that I did not get an earlier appointment, and that I had been waiting to speak with him about the very extreme results of her sugar intolerance test. The appointment started like this:

Dr: Hello I am Dr. M. So you were a patient of Dr. B's?

Me: Yes.

Dr: And you saw him regularly?

Me: Yes.

Dr: And how is she doing?

Me: Well OK. She has not been able to move forward in trialling foods.

Dr: And why is that?

Yeah. Why is that exactly? Maybe her sugar intolerance? Maybe her FPIES??? I don't know Doc. You tell me. I was not impressed.

I did request a entire panel of blood tests to be done since we had not had anything checked since taking her off the formula and beginning GAPS. He also wanted to the blood work for the same reason. Fast forward about 20 minutes to the end of the appointment.

Dr: I am going to go put in the referral for speech and food therapy from my desk. There is a huge wait and that will take months for you to get her in. I think three months is a good time for her to reschedule...well...there is that matter of weight lets make it two months. (He walked toward the door)

Me: OK.

Dr: Bye Ellie (waves at Ellie, and leaves)

Time for a referral out.

Wednesday, May 11, 2011

Still In The Kitchen

Well friends. I have received several emails and comments about my dream kitchen remodel, so I have decided to post my kitchen pictures here. Those of you who requested them should be able to copy them off of my blog. In addition to the link I gave before, I have had others sent my way! :)

Now for the pics!

Here is the lovely whole thing. Note the broth cooking on the stove, the thermos waiting to be washed, and the box of zucchini next to the sink. Oh and this shows all of the counter space I have. Nice and full!

Here is a close up of the Ellie operation. Broth pot next to items sitting on the famous cloth to help with cross-contamination. That is a washcloth. And that is how much room is next to my stove.

And last, but certainly not least, my favorite part of the kitchen is our plastic laundry room type faucet. We were able to identify it at Home Depot for a good laugh. It costs about $17. That seems a bit pricey if you ask me.

All right! Enough of my kitchen complaining. Besides, things could always be worse.

Thursday, May 5, 2011

In the Kitchen: Cross-Contamination

Time out for a personal rant.

When we bought our house about 17 months ago it seemed to have a more than sufficient kitchen. On the surface everything looked shiny and in good working condition. The cabinets are quality wood, and there is even a much desired pantry. I remember Jason saying 'I don't think there is enough counter space for you' and me saying 'I don't really like the tile counters'. But those things were put on the 'minor issues' list because the size of the lot was so important.

I now spend the majority of my waking hours in or around the kitchen. And I now know that the kitchen is ridiculously poor designed for someone who intends to actually cook. Nevermind the constant issue of cross-contamination. When I cook for the rest of the family it involves cook, clean, cook some more, clean some more, keep things out of reach, and not letting the wrong foods or utensils or shelves in the refrigerator touch the wrong things. I have now spent the last couple of months getting my bone broth, boiled meat, and vegetable puree down to a science. Clean, boil, clean, strain, clean, puree, finally hit me this week that I may be doing this for a very long time (like years), just to get basic nutrition into Ellie. There has to be an easier way to do this!

We have very limited counter space. Today we have the vitamix out to make pureed meat and veggies, 9 jars of broth cooling, one section of the counter marked off for Ellie's broth warming tools that must avoid cross-contamination with other foods, and dirty dishes that must be handwashed, leaving us one approximately 18 inch section of counter space to work with for every thing else. Nice. Well I suppose I could stand in the living room and use all of that nice 'bar' space the builder created. What in the world for? Did I mention that 18 inches was next to the stove?

Counter tops are the lovely tile with massive eroding grout. This has to be scrubbed so often due to food particles and the issue of cross contamination that we usually just work on top of kitchen towels instead of the actual counter.

Our sink is too shallow to fit a large (broth making) stock pot, and washing it to get off (you guessed it) cross contamination is almost impossible. And the faucet itself is a laundry room plastic faucet that is turning green in the handles because the previous owners took the original faucet. Even a pull out handle would make the shallow sink so much easier to use to get things clean!

A few months ago I was standing in front of the stove top and felt a breeze. Tearing apart the fan vent that was covered in aluminum tape I discovered I could see outside. Lovely.

Like most modern kitchens ours has a fantastic built in microwave. Want it? Studies show microwaves deplete the nutrients in food and Ellie needs every single nutrient she can get. We now use the microwave very rarely, and are short on oven space. The bottom half of the wall unit is the oven. It fits one 4-5 pound chicken. I don't think I could get a real turkey in there if I wanted to. Doesn't anyone actually cook anymore? Someone get me a normal standing oven!

We have a dishwasher. It leaks on the floor and doesn't get the dishes clean. Is that standard? I mentioned the pile of dishes that must be handwashed. That is because dishwashers actually don't get things very clean and there is an issue of cross-contamination. As Ellie eats more and has a larger menu we will get to use the dishwasher less. I also have not had the time to find a dishwasher soap that is free of corn derivatives. I could make my own. Be right back. Need to put that on the to-do list.

We have a fancy five burner stove top. If you spill on the stove top it runs under the counter and cross contaminates all of the pots being stored in the cabinet space under the stove. It also has five burners, only one of which can get a pot of broth boiling in less than 45 minutes. These five burners also seem to be particularly small. Perhaps, again, it is because no one actually cooks anymore, but we can fit two pots for boiling Ellie's food, and her pot to warm broth before the stove top is full. That provides a challenge when trying to cook dinner for the rest of family.

Our kitchen is open to make a great room concept and has a large island in the middle. The previous owners had a leak that caused the entire island to have mold and mildew. I covered most of it up with stick-on tiles under the sink. The island has also been the home to a chronic ant problem, and at times has made me wish I owned a sledge hammer. At one point the hubby threatened the pest control guy to get it under control because he was afraid of what I would do. The ants came out of the cut in the foundation where the piping and drains are, and for the first several months we lived here we had the pest control guy spraying the island on a regular basis. This made me crazy, and I often wiped up the spray which was within reach of my kids which helped the ants out. We lived for several months without being able to use the island due to the spray and ants. I can only imagine the number of dead and rotting ants that are living in this hollow island now. Do you have a sledge hammer I can borrow?

While reflecting on all of these lovely complaints last week I thought COME the NAME of FPIES there has to be someone out there that can help me. There are a million of those shows that crash your house in the name of something ugly. How about function and sick babies?? Maybe we could add some FPIES awareness to the mix?? It took me two googles to find this link:

Looks promising! :) Want some pictures of my kitchen? Know of another link I could make use of? *sigh*. Well, the Vitamix calls!

It Finally Happened

My worst fear. Well, at least one of them. I packed up our bags and headed out yesterday afternoon to a meeting. It was a half hour drive to get there, and about 45 minutes into the meeting Elianna starting signing her flappy finger gesture for a bottle.

That was when it happened. I realized I had forgotten one. No bottle. No bottle in the diaper bag or in the car. No way to feed her. Panic.

Borrow an alternative? No way. Not for Elianna. Are you kidding? She won't even let us feed her with a spoon. I tried changing the spout on her bottle this week one time at bedtime when she was half asleep. I changed it from an Avent bottle nipple to a silicone NUK bottle top that had more of a spout shape, and she screamed and tried to unscrew the top of the bottle. She can't swallow successfully from a cup, and she refuses to drink her 'soup' from a straw. In my panic I tried to feed her from a small regular cup which almost resulted in a huge mess. She tried to throw it and the screaming began.

Luckily the meeting was also a with a personal friend so it was a meeting-slash-playdate. I have to GO! We jumped in the car and headed to the nearby Safeway. Sounds fine except that Ellie goes from 0 to 900 in about 2 seconds. She has ALWAYS been that way. Personality? Maybe. But I am certain that broth goes right through her and she has never been too fond of feeling hungry. She always lets us know quite loudly.

I drug both kids into the store at a dead run because we had limited time to get there and to piano lessons. Moriah was screaming "I cant run that fast mommy!" and Ellie was just plain screaming. Lovely. Another opportunity to be 'that mom' in the grocery store.

Bottle purchased we loaded back up and I filled it for Ellie. In an unwashed, cross contaminated bottle. And all I kept thinking was 'major mommy fail'.

It doesn't matter that she is no longer on the restricted elemental formula. She is still sensitive. Extremely sensitive. All I could think about was the cardboard dust and adhesive dust (corn) that she was ingesting on this unwashed bottle.

I had times in the past that I thought I did not have a bottle packed or ran out of broth too soon, but I always found something stuck in the diaper bag or was not far from home. This time there was nothing. No spare packed in the trunk. Nothing. And it was an incredibly horrible feeling. When she was on formula I carried a box in the trunk with extra water, formula and water. I guess since I can not pre-pack her soup I took out that box and never restocked it. Clearly it is time to!