Retracing

One thing that is absolutely for certain about our healing journey with Ellie, is that some things are just hard to understand until you live through it. Isn't that so true for life in general? Often I find myself just shrugging and stepping out, figuring we will make sense of it when we get there....or not. Sometimes it never makes sense. Such is life.

Periodically I have heard other mamas talk about retracing.  It has been a hard one to wrap my brain around - this idea that as healing progresses and the body is more equipped, it deals with unfinished business from the past. Sounds even more hokey in writing. 

I have been attempting to learn more about sensory processing and how to help Ellie with her missed milestones and gaps in attachment. She missed out on quite a bit from 0 to 18 months of age.  Even though I did everything possible at the time to help her sick, hurting, and malnourished body, the pain did not stop.  The result was an attachment issue that until now I would have naively assumed applied only to children without parents sitting in orphanages. Oh, the ridiculous assumptions and generalities we make based on our limited experience.

About 2 months ago Ellie began to regress emotionally.  She began to do weird things, like want to crawl,  baby talk, and be carried sideways by me like an infant. At times she would just simply sit and cry, wanting to be held.  Sometimes she would start yelling "mine! mine!" She had separation anxiety. And I began to realize that she was working through some of the things she missed. Her behavior was about that of a 12-14 month old.

Interestingly enough, this time frame coincided with the same time that her health began to really take a nose dive. By 16 months old her complicated symptoms were at their worst, and by the time we started her on GAPS at 18 months old she was critical.  This 12-14 month mark was a time of developing unexplained respiratory symptoms, rashes, and a LOT of diarrhea. I remember her poor little bum was so raw and bleeding from her green acid poop that she would scream whenever she had to pee.

About 1 month ago Ellie started to get sick. There were a lot of factors, but the decline began about the same time our hens stopped laying eggs and her daily egg intake went down. She kept getting sicker so I sought out another source for eggs.  I found soy free, corn free, wheat fed eggs and figured that her need for the eggs seemed to out-weigh the possibility she still might have an issue with what the hens were fed. I was wrong. Eczema, diarrhea, reflux, then on to vomit. We don't know whether the eggs were the main culprit, or the honey and fruit I gave her access to prematurely, or the addition of winter squash, or the other environmental toxins she was dealing with (for example I put up one of those white boards at the same time, DUH mommy fail!). Most likely it was all of it rolled into one big episode of pushing her too far.

Nightmares, toxic all night pee, sweet smelling breath, cradle cap, constant inconsolable crying...it was all a strange flash back. Her neurological symptoms were getting worse, and her verbal was disappearing.  Environmental exposure pushed her into a daytime seizure and I called it quits. Though we had pulled the egg it was not enough. Her body was so overloaded she was refusing coconut oil and fermented coconut water.  Back to meat, broth and a little bit of summer squash we went. 

Daddy had a hard time with this.  He was adamant that after all this time she did not need such drastic measures, and determined she was healed beyond this. It was hard for him because the symptoms combined with the food changes, sent us reeling backwards to a time we longed to be in her distant past. We had to stop and evaluate and realize that it was not as it appeared.  It was the equivalent of Ellie getting the flu. What do we ALL need and benefit from? Broth. Soup. Basic. 

Brenda at The Well Fed Homestead published a post about how she got physically ill while helping her children heal missed milestones.  It got me thinking, and I made the observation that Ellie's symptoms were entirely pre-GAPS, and coincided to her behavior changes as well. Bizarro. Right on down to the funky respiratory issues and crazy horrible eczema. As I tried to clean her poor burning butt I thought 'boy, this is harder with a screaming, talking toddler'. Diarrhea! Up until now she has never had diarrhea like this on GAPS. She has battled constipation for months, and this is not great for progressing in the healing category. Her systematic yeast was out of control again, and this time her body was doing what it was supposed to do by pushing it out. Retracing. Back to a time when it was not equipped to respond in such a way. 

Remarkable! This was the sign that she was entering another stage of her healing journey. Progress in illness? Illness that is resolved and that her body was allowed to fight and work through. Illness she was nutritionally equipped to handle...finally.

It took about 3 days for her body to begin to reset. That is astonishing after the length of time she has needed in the past. Her eczema is almost gone.  Her distended belly is gone once more. Her words are all back. That funky breath smell still comes and goes. She is guzzling coconut water and eating coconut oil once more. 

She has come out the other side sleeping longer at night (will it stick?), not peeing as much at night (sweet!), and with loose formed stools multiple times a day, instead of constipation (say what!). And she finished it up by getting a snotty virus that she has shared with the rest of the family. I can not even remember the last time she had a snotty, respiratory anything that was not toxin or food related, causing us to bust out the nebulizer, inhaler, or make trips to have her oxygen levels checked.  She seems to be working through it this time just fine, all on her own.  

I think I may be finally starting to wrap my head around this idea of retracing. 


photo credit 1: WilsonB  photo credit 2: telepathicparanoia

Boil, Blend, Repeat

Things around here are hard.  There is truly no coating that over with much, and certainly not anything sugary or filled with corn.  Everyday we boil, blend, and repeat. And repeat again.  In the middle we work, do laundry, try to feed the family, and look around at the things we don't have time to clean.  Then there is home school, the research, the doctors appointments, and....well, you get the picture.  The last thing I enjoy doing is adding another regular activity to the every day schedule.

Long before going GAPS I investigated the issue of disposable diapers.  Conversations about butt rashes, diaper creams, and diaper choices are common in the FPIES community.  How could it not be with so much revolving around poop? I too, participated in the investigation of which diapers had corn, which did Ellie seem to be ok with, and the reality that her uber sensitive self should probably be wearing cloth and not disposable.  But like mainstream thought, I had examined through the lens of 'what can we get away with' and not 'what we truly should be doing'. 

We switched Ellie over to cloth diapers and her skin improved.  I had no doubt that it was beneficial for her. But then came the laundry and the time involved.  It's work to keep cloth diapers clean, and to figure out how to keep a child who seems to pee 12 cups in one shot from peeing all over the house.  It wasn't just a matter of pee filled diapers, either. It was pee filled beds, and pee filled car seats, and an entirely new hurdle for even leaving the house.  Over time we became more lax, and back to disposables we went.  First it was just when leaving the house, and then it reversed to only using cloth at night to help contain the pee.  And I began to complain of the cost of disposables again. And the old way of thinking was back. 

"These disposables are probably not the best for her, but she seems ok....look how well she has healed that she can tolerate them....and she always did ok with Huggies...and the expense will be short lived once she is potty trained....and holy cow who wants to wash an FPIES poop off of those cloth diapers anyways??" 

The little beads that were left on her skin when I changed her diaper bothered me still, but they didnt leave a rash and any other diaper either had corn or caused a rash.  So onward we went.  Until recently.

Recently Ellie had a staph skin infection.  It was extremely heartbreaking to feed her the anti-biotic which I knew would be damaging her intestines and set us back on the healing journey.  She had never had staph before. In fact, all of our battle has been largely tied to fungus and those corkscrew little demons that can burrow right into the gut and leave gaping holes.  I had never stopped to consider other bacteria, such as staph or strep.

And then over twitter came a link to an article on disposable diapers.  I glanced through the article quickly, and assumed it would be like most of the other articles I read - discussing how landfills were full of them, and how our government was probably putting them in capsules and burying them in the ocean or some other environmentally damaging tragedy.  What I was shocked to find actually came near the bottom of the article and just happened to catch my skimming eyes.  Staph.  Staph. huh? STAPH!

Here is what I read:

One of the dangerous chemicals inside disposable diapers is called Sodium Polyacrylate. Even the “eco-friendly” diapers contain this chemical, too. This is the chemical added to the inner pad of a disposable that makes it super-absorbent. When the powder gets wet, it turns into a gel that:

• Can absorb up to 100 times its weight in water.
• Can stick to baby’s genitals, causing allergic reactions.
• Can cause severe skin irritations, oozing blood from perineum and scrotal tissues, fever, vomiting and staph infections in babies.

What in the.....

A quick google search confirmed.  This is another one of those 'common facts' that no one cares to share, or even thinks is important.  Dear Jesus, forgive me.  My eyes had been opened to risks so long before, and I couldn't deal with the thought of more laundry.  I was ashamed.

My 8^th grade teacher required the entire class to memorize a fantastic little quote. It has bounced through my mind repeatedly in the last few weeks.  Having been a professional educator now for more than 10 years, I feel confident in saying he would be pleased that I still have it tucked away in memory. While in junior high I had absolutely no idea what a little jewel this quote was.  I remember thinking it had everything to do with me not wanting to complete my homework, and this quote was meant to rub it in.  Now I see the incredibly important life lesson behind it.  Here it is:

"Perhaps the most valuable result of all education is the ability to do the thing you have to do when it ought to be done, whether you like it or not." - Thomas Henry Huxley.

I was not exposed to the second part of this quote.  The entire quote by Mr. Huxley goes like this:

Perhaps the most valuable result of all education is the ability to do the thing you have to do when it ought to be done, whether you like it or not.  It is the first lesson that ought to be learned and however early a man's training begins, it is probably the last lesson that he learns thoroughly.

Indeed.  The last lesson that he learns thoroughly.  And in my case, must learn repeatedly.

Ellie survived her round of compounded keflex, but her skin still struggles.  We have transitioned her back to cloth diapers and the laundry has begun to pile up.  I have no idea if we will see a significant change in her skin after this, but I can be comfortable knowing I am not giving her a staph infection (or cancer).  And I also do not find it coincidental that in conjunction with the anti-biotic, her pee amounts have decreased significantly (what was in her bladder?) and she has begun to sleep for longer stretches for the first time. 

Only God's grace would allow that.  In the end I may get more sleep!

The New GI

We had the long awaited (and well stressed about) appointment with the potentially new Pediatric GI today. In order to miss rush hour traffic we were up before dawn, and loaded in the car as a family. I was pleased to have found an appointment with a leading doctor from Oakland's Children's Hospital who also held an MD in Nutrition. An MD in GI and an MD in Nutrition - how could we possibly go wrong there?? Well, ...we most likely have a doctor to keep, but not the amazing nutrition based focus I had hoped for.

Some of the highlights:

- She did not have immediate access to Ellie's entire medical history, so she only saw our brief notes and those from the nurse. She walked in and said 'what is going on?' and I said 'FPIES'. She said 'I suspected.' (To which I laughed and said well that is progress!) To which she then said 'well she is too young for EE', to which I thought 'CRAP. not as much progress as I thought.'

- She said that meat has almost everything you need so Ellie can be fine like this for a very long time, if needed. (It was just nice to hear a doctor say that outloud)

- She asked if she was on a multi-vitamin, to which I said no because we have not been able to avoid corn, to which she said 'well, yes I would imagine not'. (Another nice thing to hear a doctor of her 'level' say)

- She said that the only vitamin to be concerned of at this point was vitamin C, and suggested I do a home skin test of foods high in vitamin C before feeding it to her. (A doctor acknowledging skin test! woot!)

- Ellie continues to grow and gain weight, and is now happily over 30 pounds! (*big mama grin*)

- I said my only real concern was the continued distended belly and so she offered an xray to see what it showed. (I appreciated the proactive approach)

What else...

- She irritated the crap out of me by saying 'we just don't know' about 50 times as an answer to most of my questions.

- She had the nerve to say 'she WILL get better at some point' but not comment on what I am currently feeding her, her history of illness, or know anything about GAPS. (I think this was the same old 'they grow out of it' version)

- When I informed her that Ellie's allergist wanted her off the formula due to the APT corn reaction, she asked if there was corn in the formula (the MD in Nutrition didnt know *all* formulas have corn?). And when I said the previous GI and allergist were in disagreement on whether or not the corn in the hypoallergenic formula could even cause a reaction, she responded with 'right.'. (is that another right, we don't know? right, you can react? right, we always disagree?....?)

- When I asked about missing nutrients she said 'I can send you to a dietician at the hospital for more information on that'. Whoa. I certainly thought that Nutrition MD counted for something..no?

- I made it clear that we fed Ellie grass-fed, organic, corn and soy free meat several times, and then directly asked her thoughts on the matter. I told her I could not find medical evidence of the need but was doing it to be cautious. Did she think it was necessary? The response - 'Well, I would try and see how she responds.' (is that acknowledgement that yes the corn and soy is present in the meat, or is that another answer of we just don't know?)

- She asked if she had been scoped. I gave her the list and the information on the dissacharide test, to which she instantly responded 'well that could be error.' I think my transparancy showed how irritated I was to that response. She then said, 'well, the sample was either handled incorrectly, or her intestines are just that completely damaged. No one is born that way. That is too severe.' (THIS was a very interesting thing to say regarding nutrition and genetics. I firmly believe the test was accurate, and the corn formula played a leading role. But did not choose to discuss further.)

- and oh yeah, she asked why all of the Sacramento area ped. GI patients were flocking to their office in Palo Alto. And when I decided to start telling her she cut me off to respond 'yeah, I know (insert the crappy GI we ditched here)'. I have no idea if that was her way of confirming, or if she was saying 'back off my buddy', but it was more politics in medicine. Ugh.

And that is about all I can remember. I have her email, and am waiting on the xray results. I am headed back to my GAPS book to see what it says about vitamin C, and we keep plugging forward. At least we have a GI on board in the event of an emergency who is experienced and knowledgeable of FPIES.

Bring On The Chickens

We had this great story of how I put a post on craigslist and an amazing farmer up in the Apple Hill area responded, telling me he would switch all of his layer and his meat chickens over to soy and corn free feed. We chatted chicken and eggs and Weston A Price Foundation, and about the industrial push for feeding animals corn. He was super kind and gave us a great deal on 6 dozen eggs that I picked up from him each week. In fact his wife was a charter school teacher, like me.

And last week he disappeared. Sounds a bit dramatic? Well,.....he did. He was a no-show for our usual pick-up appointment, and he returned none of my emails, texts, or phone calls. I emailed his business email, checked his website for catastrophic events, prayed nothing bad had befallen him or his family, and then his cell phone was disconnected.

I can not even begin to say how BIZARRE this has been. I have contemplated driving to his house, but have felt that may not be the best choice. And the saddest of all was being forced to remove his farm from our list of corn and soy free resources. I looked forward to highlighting his farm and his kindness on my just-getting-started website, but now I have to remove his contact information entirely. That to me is truly sad.

We are rationing out the eggs we still have in the fridge while we search for a new source, but so far we have found nothing. I have even sought to have some shipped from out of state. As a result we are being pushed towards owning our own chickens much faster than we had anticipated. Ellie needs the egg yolk to help with her healing and complete her nutritional needs. We can not continue to rely on someone else.

We checked country regulations and we meet the lot size requirements by exactly 135 square feet, so we have begun our planning, and hopefully within the next week we will be moving forward. But not quickly enough to have eggs for our Ellie, I am afraid. What a sad world we live in. What a frightening place when even the farms do not know of an alternative for corn. This does not comfort me when I think of Ellie's future. It pushes me back towards the continued internal debate: pray and know God will provide, or get moving on providing what we know we need. This time the answer was given to us - so bring on the chickens.

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!

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.

Reflections

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, 'yeah....no. 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.

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!

A Whole New World

Yesterday Ellie performed a most typical toddler task, getting her fingers into our sticker bucket. Here is a picture of what resulted:


For those of you who recognize it, yes it is the sheet of millions of teddy bear heads from Lakeshore. This is quite significant. Why? Because not long ago the corn in the sticker adhesive would have sent Ellie into a full blown FPIES reaction within a matter of minutes or hours. For the first time I did not have to panic. She had no reaction (though I did remove them all immediately).

This is a whole new world for us. This is a sign that her body is healing from the inside out, and confirmation that the formula was keeping her from progressing. And let's not forget the advance in fine motor skills she needed in order to pick each of those little bear heads off of the paper and place them on her leg.

In the last few weeks Ellie has colored with crayons, wrote on her body with markers, played with stickers, and even touched plain old playdough. All with no reaction.

She still has limitations (obviously), and we still must be diligent with what she is exposed to (Bandaids still give her a rash), but this is MOST noteworthy of progress and we are VERY pleased to see her little body begin to take care of itself. All from the inside out.

I Shopped The Black Market

Yes I did. For formula. Before we had a prescription that was approved by the insurance company. Off of craigslist because those with WIC can get it for free and resell it illegally. Yup. That's right. Welcome to our world. And before you judge me, remember that the first round of special formula that Ellie was on cost us $25 a can, and the formula she is currently prescribed and we are trying to keep her off of cost $45 a can.

While Ellie's formula is covered for the moment, many other moms are not as lucky, and their insurance (Kaiser) won't pay for the formula at all. Unless their child is hospitalized and given a feeding tube. I remember these days. Back when we first dealt with the transition and the insurance company told us that if we starved her until she was hospitalized they would pay for the formula, but that was the only way. Nice. I have other posts on here about formula back at the beginning. But another FPIES mama local to me is dealing with an outrageous monthly bill right now. She averages $800 a month. Another local mom has TWO FPIES kids on this formula and is paying out of pocket.

Please take the time to read another story here. And though I have encouraged her to put a paypal donation link on her blog, she hasn't (yet?). So if you would like to sponsor Carter's ability to eat with even a $5 donation, or by purchasing one can, let me know and I will make sure she gets it.

Off The Advised Path

Almost two months ago I made the decision that 'no answers' and 'try this' were no longer acceptable answers for my Ellie. 'She will outgrow it.....we think.....at some point....' was beyond frustrating, when coupled with an allergist who saw through my eyes when her patch testing showed an intolerance to corn. 'WHERE IS SHE GETTING CORN?' he firmly had asked in a very demanding tone. Where? Her formula. 'We need to get her off.' Yes, I know. But how exactly?

Doctors are not trained in nutrition. In fact, it is so much NOT apart of their medical school that there is a separate degree for it, and they then refer you to a nutritionist. This is not something I am bitter about. The rise in information and advances in western medicine have created a situation where no doctor could know everything, and specialists have evolved in an effort to deal with exactly this. The new problem is body parts are connected and affect each other. The heart does not exist separately from the brain that tells it to pump, and the intestines do not exist separately from the blood that uses its nutrients.

So now what? There was not a doctor that could counsel me on creating a home made formula for Ellie. And our team of doctors all panicked for Ellie, using what information they had. This makes me appreciate them all, but did not give us answers.

Allergist: Get her off the formula. Put her on home made almond milk and see the head nutritionist at the hospital. She should be ok for a couple weeks like this and at this point needs to be off bad enough that we need to risk lack of nutrients and weight loss. (I am supposed to be ok with starving my child for a couple of weeks?)

Pediatric Gastrointerologist: Speak to our in-house nutritionist about what foods to trial and getting her off the formula, and keep the formula because at this time she is growing and appearing to 'thrive' where she is at. (I am supposed to be ok with ignoring the other symptoms I am seeing and the fact that she is steadily getting sicker?)

Pediatric Nutritionist in GI office: Transition her off of the formula and give her homemade almond milk. Try hemp milk and lamb and a vitamin and she should be fine. (I am supposed to be ok with taking at least four weeks to get her onto any kind of food, assuming she passes them all and we are not set back a couple of weeks with a fail?)

Pediatrician: Just looked at me in what appeared to be wide-eyed frustration as I told him about what the other doctors had said. He nodded his head as he listened to my concerns, and what I thought I was going to have to do. He said the equivalent of 'you do what you have to do for your child' and 'what I can do is give you an additional referral to the head nutritionist for help'.

Where did this leave us? Getting a referral to Stanford would take weeks, and getting in to Dr. J in New Jersey could take months. We didn't have this amount of time to wait with not even a guarantee of an answer.

What I did:
It was day seven of feeding Elianna only home made almond milk. She threw up every third or fourth bottle, was white in color, had sunken eyes, and barely walked. Her weight was dropping fast, and her eyes got cloudier and cloudier. I was told to persevere. That night, while on my knees crying for my child who I felt was dying before my eyes, I realized the answer had been right in front of me all along. For two years the information kept popping up from various angles.

And at that moment I resolved that things would be different. What did I have to lose? Nothing. It certainly couldn't get much worse. She was starving before my eyes.

I got up, made her a bottle of formula to buy us time, and risked the reactions she would have on it. Reintroducing the formula after her body had the time to rid itself of it meant her blood would react harder and faster when it was reintroduced. But it was better than no food and would buy us some time.

And I emailed Dr. Natasha Campbell-McBride. In the morning I would revisit my GAPS and SCD books.

Sometimes She Falls Down

Over the last 18 months there have been many things that in retrospect look a lot clearer. Is that FPIES? Or is that just life? Or is that being a parent? There are a lot of things that I wish I had done, or not done, or just done differently, but the facts are always the same: I did the best that I can with the information I had. This is the story of life.

As moms we are pretty hard on ourselves, and when we have a chronically ill or special needs child that is only amplified. I wish I had elminated corn from my diet before I stopped breastfeeding. I wish I had started keeping logs of her daily schedule and bizarre symptoms much sooner (I did with the first child, why not this one?). I wish I had started a probiotic first, like the pediatrician suggested. But I can't change those things now.

As we have continued on the path of weaning Elianna off of her prescription formula, I have begun to see changes in her that are remarkable. Normal, perhaps. But things I did not see before now, and did not realize I was missing.

The word autism is one that brings fear to any parent, yet it keeps popping up in connection with FPIES and severe food intolerance. Another FPIES mom whose older child is on the spectrum. Doctors doing current research are connecting immune system dysfunction to autism, dyspraxia, ADHD, extreme food intolerances....These topics are all very controversial and unknown. Like vaccinations.

I never related any of these conditions to Elianna. Until now. Sensory issues, food therapy, swallowing problems due to inability to control gag reflex. Sleeping a particular way, eating a particular way, showing sensitivity to light, temperature, and texture. Extreme volumes of quiet and loud when she speaks or cries. The inability to self-sooth. Never wanting to be put down and needing to sleep as upright as possible. It took her longer to walk, and talk, and sit up, and just about everything. And sometimes she just falls down. She trips, she loses her balance, or she will be standing right next to you and the next thing you know she is laying flat on the floor. She doesn't always get up right away, which has always been a bit puzzling. And this never concerned me, until we recently made changes and began to see a different little girl.

She wakes up laughing. She argues with her sister, and hits when she gets angry. She asks for things, shows preference, and responds to commands with more and more frequency. She has begun to mimic, 'high-five', and give kisses. She has words. In fact, the first time we took her off of the formula she said 6 new words within 24 hours. But most chalked it up to coincidence. To me, her mother, I find it remarkable. She DANCES. She holds a beat, bobs up and down, twirls in circles, and sings all day long. ALL day long. And watching it brings me to tears.

All of this has evolved in about the last three weeks. Perhaps she is growing. Perhaps she is just hitting milestones like she was meant to. Or perhaps she is feeling less inflammation in her little body, and getting nutrients that her brain and body so desperately need. Part of the push to make the brave steps to the bone broths occurred after I read information a couple of months back about the developing toddler. At two years of age is when the developing brain begins its first major pruning of unused-brain-whatevers (I forget exactly). That was enough for me. We were wasting time and I had nothing to lose. So what if she had a reaction? We would be no worse off then we were before, and no farther forward. And instead I have seen remarkable change and success.

As she bobbed and waved her arms today to the CD playing "Father Abraham" I could only smile in awe. Where do we go next? Forward.

Anesthesia: Putting Her Under

Before making steps to move forward with Elianna's diet change and deciding not to give her certain foods or treatment, there were some final possibilities that needed to be eliminated. At this point she had never been put under for an upper scope or biopsy. Her continued reflux, and 18 month history of it, concerned me that there was scar tissue or permanent damage in her esophagus. Thoughts of hernia, possible Eosinophillic Esophagitis, and possible sugar intolerance, encouraged me to take the risk in an effort to eliminate these final issues that might complicate her diagnosis of FPIES.

I say risk, because entering the hospital is a risk for an FPIES patient. Most of us are aware of the fact that supposedly sterile hospital environments are actual full of funky bacteria, and poor quality food that lacks nutrition. What the majority of people in the Western world are NOT aware of is the ingredients in medications and adhesives. This includes medical professionals and anesthesiologists. Ingredients in adhesives include corn which has been used to replace latex. Ingredients in medications include corn and soy, just to name a few.

Ellie was to go in for an upper esophogeal scope and biopsy, and a colonoscopy and biopsy. This required her to receive anesthesia, all of which was routine and not a big deal to most. However, the medication that is used to put children under is called propophyl. It is the only anesthesia with an anti-nausea medication added, which is why it is used with children. It helps with the after effects and the efforts to make it less traumatic since the chance of them waking up to a barf bucket is considerably less. The problem with propophyl is that it contains egg ingredients and soy oil.

Elianna has not had egg yet, but she has had soy, and it has resulted in an FPIES reaction (which is the equivalent of anaphylaxis). Most people who have anaphylaxis to a food would tell you that there is no way they would risk being exposed to that food while going into surgery or a procedure that required anesthesia. And the medical community recognizes this risk and would make alternative arrangements. The risk of someone going into anaphylactic shock while being put under anesthesia is not a scenario they like to risk. Unlike traditional anaphylaxis where a person's throat swells shut and they can not breath, Ellie's FPIES is a blood reaction that sends her body into a state of inflammation and shock, and can make her blood pressure irregular.

Many FPIES children have had this procedure done multiple times without problem. But a few have not. And Ellie's added corn intolerance and continued respiratory issues were enough to make me want to vomit. My research and conversations with other FPIES mommies told me there were alternatives to the soy based medications, and that going into things aware should decrease the risk of problems significantly. I took a deep breath, and got on my knees again. Our God is not a God of fear.....but I didn't realize yet that this was the next lesson He was wanting me to learn.

What Does She Eat??

Like other FPIES moms, I get this question all the time. If she doesn't eat food, then what does she eat? What do you mean she cant have FOOD? Doesn't she have to eat meat or eggs or nuts to get protein?

There is another FPIES mom who has been kind enough to humor my ignorant questions and help me through my 90 degree learning curve since our family has been forever changed by FPIES. This moms is a nutritionist- she does it professionally! And I will be forever grateful for her knowledge. In addition, her son who is a little older than Elianna, has walked a similar path with a severe intolerance to corn. His path and his mamas has been one of many mountains, and has caused much more long term damage, something we have been able to avoid so far with Elianna.

She just completed a blog post about what her son eats, and it answers a lot of questions that I get all of the time as well. Elianna's current diet has been tailored to her specific FPIES, but Sam has had the priviledge of having a mommy that has known the benefits of hemp and coconut long before I even knew they existed.

Please take the time to read this post of hers. It is a very similar situation to Ellie's, and will give more insight for those of you who are looking to make adjustments for your own FPIES child.

More In the Lessons of Broth Making

Broth lesson number two:

In the fridge broth stays good for about 5 days up to a week.

Add meat and it is only good for about 2 days. Max. Or it goes rancid.

Enter very smart FPIES baby who screams from 2:15 am until 3:00 am every time she is offered a bottle with beef broth. As a last resort mommy gives a bottle of plain formula, not knowing what to do, to which FPIES baby has coughing and reflux to.

In the morning mommy realizes that she has had the broth in the fridge for 4 days and it smells funky.

VERY thankful that smart FPIES toddler does not eat the rotten broth and get food poisoning.

When does this learning curve end!?!

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!

Moving Past Hemp (for now)

The next day I added 1/4 teaspoon Hemp protein powder to Elianna's formula, but when she finished the bottle there was a lot left. The second bottle confirmed that the powder was staying stuck in the neck of the bottle nipple and she was not ingesting it. Bummer. That was a wasted day.

She was thinner, and she still only ate maybe two bottles that day. No reflux or reaction symptoms were obvious, and I had no idea what to do. The nutritionist had instructed me to give her at least a week to get back up to eating the same amount as formula or more. We were at day 5.

I researched the caloric value of almond milk. I researched almond oil, hemp milk, hemp oil, hemp powder, her safe fruits....anything I could think of that I could add to her almond milk to give it more calories. I consulted a friend who makes home made formula for her FPIES son, and attempted to create a recipe that would be safe for Ellie. She needed calories. The hemp protein powder didn't have many calories in it, so that was not worth the trial and risking the fail. Not eating could be a sign that she was hurting from the almond milk.

I emailed the nutritionist again, and he pushed me towards a specific brand of Hemp milk. I responded that it had carageenan in it, which is known for causing stomach upset. I didnt think that was a good choice. He emailed again saying to try another specific brand that did not have carageenan. It had brown rice syrup. I emailed again and said that was also not going to work, and then decided it was just wasting my time to consult the nutritionist.

That night on my knees I begged to know if she was reacting to the almond milk, or if being off the corn formula she was actually feeling better. And next steps? Add an oil? Try a food? I needed direction.

Fearful Mommy: part 2

We began transitioning Ellie onto the home made almond milk. The allergist wanted me to transition over the period of a month, while the nutritionist wanted me to start introducing new foods right away, and those two things did not match. I decided that if the corn formula was not good for her, we needed to transition faster than a month. Her nutrition depended on it, so within 4 days we had her on 100% almond milk. It was not going well. Her intake was down dramatically, and about every 3rd or 4th bottle she was vomiting. I think that if I was on 100% almond milk, I would vomit, too.

By Wednesday of that week I began to be seriously concerned for dehydration. I couldn't tell if her clumsiness and lethargic behavior was due to reaction, die off, or just plain lack of food. It was also the first day we had to take her out of the house. We had plans to take Moriah to the SF Academy of Sciences homeschool day, and she was looking forward to it tremendously. We packed up two thermoses of hot almond milk, and headed out, just like we would do for formula.

The day went OK, though her intake was low as usual. Her daily 50-60 ounces was down to about 25, and this day was no different. Late that afternoon we headed home, and she was hungry. She quickly downed a bottle in the car, and then suddenly as we entered the foothills during rush hour traffic, she began vomiting. She projectile vomited so hard that she was having trouble breathing, and she wasn't stopping. Jason crossed four lanes of traffic to stop on the shoulder, and I barely had enough room to open the door. I jumped out, grabbed her out of her seat, and held her upside down, up the hill we were next to, as she continued to heave. This was scary enough that for the first time her 5 year old sister verbalized 'Mommy I am sad for Ellie too!'.

What in the world? I was puzzled. We cleaned up as best we could and piled back in for the remainder of the ride home. I grabbed the thermos and smelled. It was rancid. Stupid, stupid mommy! It never even occurred to me that the almond milk would store differently and needed to be refrigerated and not hot. And in my head I knew - she was so used to eating things that hurt her tummy or that tasted nasty, she just ate it. The whole bottle. 8 ounces of rancid almond milk.

By the time we got home, got cleaned up, and got the kids into bed, I was exhausted. I found myself on my knees in the bedroom once more, looking for wisdom and direction. And the mommy guilt was horrific.

We had just finished day four of only almond milk. Her body was thinning, and her skin was changing. She was groggy, clumsy and lethargic, but her eyes were brighter and less dull. The results were confusing, and no doctor could give me direction. I had to rely on my mommy instincts, what information I had been able to piece together, and pray for direction from the God who made her. At this point what I knew was that the almond milk was perhaps better than the formula, but not enough to sustain her. And I was convinced some of what I was seeing was a 'die off' effect in her intestines, making her sicker.

I made the decision to try hemp next. Following GAPs guidelines, I made a paste of the hemp protein powder I had purchased, and applied it to her wrist while she slept. I covered it with a bandaid, and went to bed.

Fearful Mommy: part 1

Since we knew Elianna's formula was keeping her from getting completely better (to baseline), when we introduced almond milk we also lowered the amount of formula we were giving her to help make sure it was a successful pass. Once we determined it was safe, we went back to 100% formula and moved on to the next trial.

Over the next couple weeks there were a lot of complications, but I couldn't help feeling as if something was just a little not right, and after going back on to the formula 100% she was actually worse. I knew that when you remove a food trigger and then reintroduce it the symptoms could be worse or more immediate because T-cells can identify it faster. I kept shrugging it off, but then over the next three weeks, this added to a couple of other fails, and she just didn't get any better.

For the first time ever her weight started to decline very slightly, her respiratory symptoms were horrible, and we were even failing diaper cream on her butt. This was not boding well. We returned to the allergist who continued with the original instructions: pass almond milk and then transition her off the formula entirely. The concept that her intestines were not going to heal entirely, and that she may not pass any other foods while still on the corn based formula, was one that I could understand in my head. However, the idea of putting my 18 month old on a diet of home made almond milk, and a teaspoon or so of fruit at dinner, was not a very comforting thought. This had to be insane. But the plan was to move quickly and get other foods into her diet. For a child with sensory and food issues this was a lot to expect, and I was spending a lot of fearful time on my knees praying.

I waited until the following week when we went back to see the GI and the nutritionist, so that I could ask if this plan was as insane as I thought. Truly, could an 18 month old survive on only almond milk? Surely not. My mommy instincts were going through the roof. The GI tried to reassure me by saying that 80% of a child's calories between 12 and 24 months of age come from milk (ok but that is for kids who eat food right?), and the nutritionist said that it would be low in protein, so if I could trial and add hemp milk, then lamb, and a gummy multi-vitamin that he recommended, we would be good to go.

Wow. That seemed like a good plan, but a lot of steps to conquer. And could we do it quick enough to not be detrimental to her health? Again I was reassured that she has never had failure to thrive and definitely is in good enough condition to go a month without worrying that she isn't getting her daily recommended nutrition.

A MONTH.

That certainly did not sit well with this mama. A month of transitioning off of the formula, and onto only home made almond milk, while trialling these other new foods? What if she failed one? What if she needed weeks to heal?

What about the fact that she was not healed to begin with and I listened to her cough up her lungs and wake up screaming for air every night?!?

I prayed, and I fretted, and I researched, and I consulted others that I could trust, and the answer was all the same: no one could tell me what the answer was, and the doctors were giving me what they felt to be the best answer. I called and spoke with the pediatrician who gave me an immediate referral to the top pediatric nutritionist at the local hospital, but it would take time to be processed and get in. How long?

The following week her symptoms of illness continued, and we decided to take the plunge. I began making almond milk, and we began the transition. And I was afraid.

I was afraid for her nutrition, I was afraid for a possible reaction once she was on that much almond milk, and I was afraid that if we had to go back to the formula we would not be able to.

Ain't Nothin Urgent About Urgent Care

I have heard many horror stories from other FPIES and PI moms about doctors and hospital visits. We have been blessed with a fantastic pediatrician who sent us right away to a fantastic GI, and so we have had very minimal bad experiences. Just to make sure I can relate to those other moms, we were allowed to have a couple of those experiences this month.

The third weekend in January we were approaching the end of the fourth week of Elianna's respiratory problems. She had been on the nebulizer at night for almost three weeks, and by the 21st I was beginning to be afraid for her oxygen levels, especially at night when it was particularly bad. After an extremely hard Saturday night I decided it was time to haul her in to the urgent care provided by our pediatrician's office just to have her checked. What if at this point she had pneumonia?

I knew there was going to be a problem when I called to make the appointment. Every veteran mom knows there are key phrases and words that tell the scheduler to consult an advice nurse immediately, or to at least not make light of the situation. I called Urgent Care as soon as they were open, and told the woman on the line that 'my 18 month old daughter is a patient of Dr. O, and she has been having trouble breathing. I need her to have her oxygen levels checked and have her chest listened to.' 'oh.....o.k.', she answered causally. 'well, my next available appointment is at 11:45. Will you be able to make it here by then?' Duh. Did you hear me say she wasn't BREATHING?

We arrived at urgent care and the nurse welcomed us warmly into the room. 'So you are here for a cough?' she asked. 'Well...no not exactly,' I answered. 'She has been sick for several weeks and was having great trouble breathing last night. I would like to know if it is a bacterial infection or a virus, or just a side effect from her reflux.'

'oh OK,' she was partially listening. 'So..haha...her chart says she is allergic to FOOD and that is a little GENERAL so I am going to need you to be more specific and update things. We also have listed peanuts. Is there anything else you would like to add?' Tick. Tick. In my head I have to make a choice. Explain, or just say no. 'Well, she has a rare condition called FPIES where she actually IS allergic to food.' Silence.

her: 'Oh. OK. Is she on any current medications?'

me: 'She is on albuteral in a nebulizer.'

her: 'Oh. Why is that? There is no diagnosis of asthma in her file.'

me: 'Well, she has a severe corn allergy and that is the only medication she can have without it.'

her: 'Oh so she DOES have a severe allergy, and to corn? I will add that in.'

me: 'Is her diagnosis even IN her file?'

her: *tense laugh* 'Oh I am sure it is, but I am not on that part of the screen. I am in the allergy section.'

me: AAAAAAAAAAGGGGGGGGGGGGGGHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!

OK not really. That was only going on in my head.

her: 'Well let's measure her oxygen.' *fast forward* 'It's fine. Looks good. Its 98.'

me: 'what should it be?'

her: 'oh, 100.'

me: 'Wow I really should just avoid the co-pays and buy one of those oxygen meters for my home.'

OK. Again. Not really. Just what I was making a mental note of. Ask Dr. O about that and if that is a possibility.

her: 'The doctor will be right in.'

And he was. In he came! He asked me the same questions, and I tried to explain again. And he listened to her chest.

Dr.: 'Sounds clear.'

Elianna: *cough. hack. gag*

Me: 'OK. So it is not a bacteria or a virus?'

Dr.: 'Uh...no normally we see other symptoms with virus or bacteria.'

me: 'so this is a side effect of her reflux?'

Dr.: 'I don't know. You should follow up with your primary care.'

And he exited.

Clearly I chose the wrong profession, because he got PAID for that!