Wednesday, July 27, 2011
While camping I grabbed a bag of Just Tomatoes freeze dried peas to take along, thinking it would be a good snack to have on hand (for everyone else). When we got there and busted them open, of course Ellie asked for some. So I handed her 5 or so, and she proceeded to use them to make piles, and move piles, fill the hole in the picnic bench, and then another hole. It kept her busy while we set up. While I wasn't watching, OF COURSE, she apparently ate one. Or two.
I say apparantly because the next day we saw her eczema flare, and she had a rather nasty diaper that burned her skin, stunk to high heaven, and held some mucous. I did not realize the significance of this until we got home. You see.....DUMB mommy moment (confessions here ok?), when the list of previously failed foods gets long enough, and you spend your life focused on corn which is everywhere and can burn holes in her skin, it is easy to forget everything on the previously failed list. And, peas were on there. PEAS were ON THERE.
It was one of her first foods. She was around 10 months old, and besides projectile vomit, it sent her into shock. Now, here we are, 14 months later. The reaction was there, but not nearly as severe. Was this a new Tcell response to the same food? Was it the same Tcells that responded before? Who cares! THIS to me was a GIANT hallelujah. Another sign of healing, another sign of progress, another sign of hope. She may not be ready for peas yet, but by golly, her immune system is healing and she is getting closer.
Now that we have eggs, we will be trying a new vegetable next. Hooray!
Friday, July 22, 2011
Will she out grow it? (or any variation there of: won't she out grow it, when will she out grow it, do they think she will out grow it, is this something she will out grow, etc. etc.)
No. She will not out grow it. The term 'out grow it' is a non-medical and non-scientific term for a condition that suddenly disappears or changes into something else without explanation (and a personal pet peeve of mine). I, personally, wish I could take my honorary medical degree and re-write every poorly written article on FPIES or variations of protein intolerance that are now bouncing around the internet, as well as medical research articles that mislead with their wording. YES, there are situations where children are 'suddenly' able to eat and their protein intolerance appears to have gone away. This is documented in the small amount of research studies that have been conducted. But there are so many variables and each child is very unique in their specific intolerances/allergies, history, and environment. The reasons that the symptoms disappear have to do with intestinal healing and individual immune system response which is very complicated. There are also NO follow up studies (that I have found) on FPIES children who become adults after they 'outgrow' their symptoms. So NO, she will not outgrow it. YES, there is a possibility that at some point her visible symptoms will disappear without medical explanation, but we really have no idea if, when, or what that will mean.
If what you are really asking is 'can she be healed?' then my answer would be a most resounding YES. At no point did we stop believing that the God who made her could choose to heal her instantly. He has not chosen to do that thus far, but we do not give up hope or stop praying for it.
Will she have this forever?
No! (hooray) What Ellie needs is healing, and healing takes time (which is the hardest on this mama). The foods we have her on are part of an intestinal healing program that has been proven for almost a century (did you know Celiac dates back to ancient times?). We have no idea what she will be able to eat as she heals, and only time will tell. Science does say that the more severe foods will probably remain (corn). But only time will tell.
Why are you changing the whole family?
First, as we have ventured down the path of healing for Ellie, we have learned some things about nutrition and overall health that it would be silly not to just implement for the whole family. It has also shown a path to healing and hope for the rest of us. After all, we see obvious proof in how it is healing Ellie!
Second, it is easier for Ellie. If we can all sit down at the table and have the same meal, she feels included and learns proper social cues, behaviors, and how to relate to food. It removes the millions of 'no that will hurt your tummy' comments, and it creates a safe environment.
Doesn't eating this way cost you a million dollars?
Without launching into a lecture on the 'cost' of parenting and health and the choices we make, I assume people are asking about our actual paycheck and monthly budget. Yes, it did cost a lot at the beginning. Yes, it still costs more than we were spending on food. Yes, there are ways to cut costs and budget. In fact, we eat out a lot less (ok we don't eat out at all) so if we take those couple hundred dollars that we were pretending we weren't spending, and shift them over the food budget, it makes the cost difference not look nearly as severe. If you are truly interested in how to make it more budget efficient, I will be including tips, tricks and suggestions on my new website, so make sure you bookmark The Real Food Place.
We will never go back to eating and shopping the way we did before FPIES. There are many things about FPIES that has made us better, and I certainly hope we never forget them. We also will never put FPIES completely behind us. It is our life, and the teacher in me has just found a new direction and a new passion. I have a child who started out with simple baby vomit, and who progressed to a state of starvation 18 months later when doctors were stumped. We have found a path towards healing, paved with discovery that could apply to anyone. How could I ever turn my back on that?
Monday, July 18, 2011
She started out with improved stool, showing proof that she needed the nutrients. But over time it has progressed through the stages slowly - looser stool, to diarrhea, to funky smell, to acidic burn her butt, to this week turning red and showing signs of blood. I was horrified. It has been a LONG TIME since we saw red poop.
God does work in some mysterious ways, because in the meantime our egg guy went missing and we have been looking to source out more eggs. Enter two local families who verified the need for soy and corn free feed from day one, and I then researched to write a post on allergens in meats for my website. We made the decision to have our own backyard chickens, which led me to a local farm that raises heritage chickens, soy and corn free. She has been an amazing resource and we pick up 5 chicks and a couple dozen fertile eggs tomorrow morning. This then created the need for feed, to which I contacted the supplier that was recommended by one of our favorite local farms. (Jubilee Farm) is growing our meat chickens. I asked the feed supplier my question of feed and how long it might stay in the chickens system, like I have asked about 5 MILLION other farmers who have known nothing and guessed anywhere from 2 weeks to 8 weeks. The result? She discussed with her nutritionist and used her own knowledge and experience to tell me that it takes an egg over 3 months to grow and mature, and that there is most likely no way to remove soy or corn feed from a chicken's muscle once fed it. They then pointed me towards the USDA organic chicken regulations for more information.
DOH! ok...so. ALL of that to say...did you see that long chain of connections that I was led through in order to get that little bit of information? If I had gotten it in the beginning, I am not sure we would even be working on our own backyard coop. And DUH....I did not even think of checking already established regulations. Sometimes the government can be a resource? Who would have guessed? ;)
So in summary, we were still feeding Ellie traces of soy and corn. We pulled the eggs and are restarting new ones today that are free of corn and soy for generations. And I will need to rewrite my resource article on the website because there is more information out there than I had previously found.
I just keep reminding myself that we are only four months in. It took us a month to wean her from her formula completely, and then get started on GAPS, leaving four months that we have been working on healing her. These set backs are minor, but a whole-heck-of-a-lot-of work!
We have done nothing outside of normal, everyday behavior to encourage the following:
This week Ellie started saying 'eat' and 'food', followed by climbing into her chair and waiting to be fed.
This week she asked for soup and proceeded to feed herself several spoons of warm meat puree.
And she swallowed.
This week she has started asking for food by name (even if she can't have it) and proudly gnawed on a hot dog while camping.
Today she asked to brush her teeth the same as her sister, and did a pretty darn good job (though she won't let me help).
She is talking, responding to commands, and yelling MINE! MINE! MINE! like every other terrible-soon-to-be-two on the planet.
All very exciting....all very normal....and all unexpected. There were days I wondered if it would ever come and what expensive therapy she would need. Best of all is knowing that it means she is feeling better, and there is nothing more on this planet I love to see than evidence of her healing.
Tuesday, July 12, 2011
Take a jaunt over to Sam's story. He is only a few months older than Ellie, and deals with a corn intolerance, too. Though we live states apart, I am convinced that if we were closer they would be best buds :).
From the Outside Looking In?
Friday, July 8, 2011
I walked into the bathroom and found Ellie eating Moriah's new toothpaste. Soon after she was climbing in the pantry and begging 'pleeeease' for a larabar. I cried. Some days it is just so hard to see Holland as a great place to be, when I am so surrounded by Italy and all that it represents. Even if the old normal isn't the healthiest, or the safest, or even the 'coolest' place to be, it is always EASIEST.
Today I wanted the old normal back.
Probably because today I am particularly tired. I find myself more susceptible to thoughts of deception and self-pity when I am zapped of energy and resources. It makes it easier to look backwards and get a glimpse of life with those rose colored glasses on. On these days I often laugh and say I would be the first Israelite on the train back to Egypt. I am weak!
Today I wanted the old normal back.
I am insecure that we have different rules for eating, that my children are restricted by choice, and that the knowledge I now have makes other people uncomfortable. I am tired of telling my five year old no, or caving and then watching her erupt in tantrums or complain of a tummy ache because I could not be strong enough for her.
Today I wanted the old normal back. But tonight I feel better.
Tonight I am reminding myself to go to bed on time. I am ashamed that I doubted God would provide. I am humbled that two community members I have never met called me to say I could share eggs from their family chickens until ours are laying. I was encouraged by a conversation with someone I had never met who said 'good job, your grandchildren will thank you.' And I take a deep breath, and force myself once again to look at the tulips.
Thursday, July 7, 2011
Ellie was born in August of 2009. We were sent home from the hospital with the instructions that she is 'just one of those babies that refluxes' and to 'be sure and lay her on her side' so that she does not 'choke or aspirate on her own vomit'. Once home we found she slept an excessive amount, and breastfeeding was difficult. She continued to throw up and it worsened. More than half of her feedings were projectile vomited, her sleep was irregular, and her crying was inconsolable. We were told she was colicky, it was personality, and my oversupply of breast milk was causing her difficulty. We were in the doctor’s office constantly.
At 10 weeks old I was horrified to find Ellie begin to fill her diapers with blood. It looked as if someone had dumped a melted red Popsicle into her diaper.
The pediatrician began investigating. Meckles? Breastfeeding? Condition where the bowels kink and then straighten on their own? We were given a referral to the pediatric gastroenterologist, and at 11 weeks she received the first diagnosis of Milk/Soy Protein Intolerance (MSPI). Her symptoms progressed to include extreme lethargy. An elimination diet removing dairy, soy, eggs, and nuts was not enough, and I was then told she could not even digest the protein present in breast milk. She was weaned immediately and placed on a casein-free commercial formula, with the threat of hospitalization due to anemia.
There was initial change with weaning. She was moving, smiling, more active, and there was no visible blood in her stool. The projectile curdled vomiting and diarrhea continued. Her eyes were dark and sunken, and her body was puffy, but her crying was less. We were told what was left was personality, and so for 6 months she continued this way.
At 8 months were told to start solids because it would weigh things down and thicken things. We introduced all traditional first foods, beginning with rice cereal, and the pattern for each was the same. Ellie would eat the first bite, refuse the second, and then begin vomiting. Her stool began to burn her skin, and she often ran a low fever. At this point the GI conducted a long list of blood and stool tests, and gave instructions to feed her only formula. At 9 months old she was given the diagnosis of Food Protein Induced Entercolitis Syndrome (FPIES), and we were told there was no research, no answers, and no cure. We were instructed to continue the formula, and start trailing foods that had the least amount of protein such as apricots and plums. With time she was to ‘outgrow’ it, depending on how bad her particular case was.
Ellie’s symptoms continued and her list of symptoms increased. She refused a spoon, showed food aversion, and had a distended belly. Vomiting was random, her stool became extremely constipated, and her upper respiratory symptoms increased. Her breathing was often labored and wheezy. And the crying continued. Traditional allergy testing showed nothing, but X-rays showed colitis.
On the morning of her first birthday she received her first rectal scope and biopsy. There was concern for sugar intolerance and for her esophagus. We were told there was no need to try a probiotic, or examine candida. Instead she was prescribed an elemental (amino acid) based formula, and we had to try three before finding one she did not vomit profusely. She grew, but her symptoms worsened. She did not tolerate diaper creams, diapers, crayons, bath soap, or stickers on her skin. All induced vomiting, diarrhea, and shock like symptoms that were frightening. She began eating non-food items, and her eczema became full body. She was prescribed inhalers for coughing but the cause was unknown.
By 16 months old she had 5 fruits that she appeared to tolerate. We now began to see her have hives, swollen eyes, and manic behavior. The allergist conducted patch testing (APT) which made her extremely ill. The result was a scar on her back where corn had been tested. We were told to immediately wean her from the elemental formula which had a corn base, and to feed her homemade almond milk because there was no formula in existence without corn. Move quickly getting other foods into her diet, and know that she was in good enough condition to go a month without worrying that she was not getting her daily recommended nutrition. She had never been failure to thrive.
It was unrealistic to think that at 18 months she would suddenly be able to tolerate food. And none of the specialists had an answer. We stopped the formula and began giving her almond milk as instructed, and she stopped eating. Every 3rd bottle she vomited uncontrollably and she battled dehydration. She lost 22 ounces, and we were watching her starve to death. This was the turning point. I suddenly remembered a doctor and a book that was loaned to me when she was born, and I searched the internet. Multiple intolerances, leaky gut, lack of bile, Illeal Lymphoid Nodular Hyperplasia, Non-Specific Colitis and it was all falling into place. All FPIES, and also all GAPS. Ellie needed food NOW, but the fear was crippling. I had been warned to stay away from high protein foods because she would most certainly react, but the GAPs diet started with meat broth. So not knowing what else to do I sent an email to Dr. Campbell-McBride in hopes of finding help where there was none.
What I received from Dr. Campbell-McBride’s email was hope, and the confirmation to start the introduction stage with Ellie. I put her back on the elemental formula, and began rotating through as many broths as I could find for corn and soy free meat. Ellie’s healing began, and within one month she was completely formula free, completely GAPS, and completely on the path to healing. No cough, no sunk eyes, no unexplained vomiting. Instead, she wakes up laughing. She has words. In fact, the first time we took her off of the formula she said 6 new words within 24 hours. She DANCES. She holds a beat, bobs up and down, twirls in circles, and sings all day long.
We don’t know how long it will take Ellie to find healing, or move through the stages of GAPS, but that is ok; because now she eats Real Food, and now she has hope.
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)
- 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.
Tuesday, July 5, 2011
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.