Monday, February 27, 2012

Bright Side

Thank you for the well wishes and questions regarding Ellie's new developments (there have been a lot!).  At this time we have decided not to pursue testing regarding Ellie's seizures.  There are a few reasons for this.

The first is that initial testing would involve giving her an MRI and because of her age she would need to be put under anesthesia to keep her from moving.  I am not a fan of giving her anesthesia because of her last experience, or dealing with putting chemicals ('medications') into her blood if not 100% needed.  Also, the test may not show anything.

The second reason is that standard treatment protocol would be to put her on seizure medication.  This would be another thing I would like to avoid, and since she is not having them regularly it does not seem prudent to put her on medication 'just in case'.  We have only seen this one in the last 8+ months.

The last (and in my opinion the most important reason) is that we already have her on a medical diet designed to control seizures.  And it appears to be working.  I believe now that Ellie was having these seizures prior to starting GAPS at 18 months old, and shortly after stopped having them.  That is enough proof that they are controlled with her diet, and the recent events have given us information on how to watch and be aware.

I am also amazed once again at the human body.  There seem to be many types of seizures and causes (I am very much at the beginning stages of research and learning here), but one thing that I have learned is that a seizure occurs when the brain becomes irritated and an 'electrical storm' occurs. I have also learned that there are chemical and food induced seizures, which clearly seem to apply here.  The protein structure that holds together the intestinal cell wall for protection is very much the same as the protein structure that holds together the cells forming what we call the blood-brain barrier.  Things that cause damage to the gut wall, inevitably cause damage to the blood-brain barrier as well eliciting a neurological response to leaky gut (ie. Gut And Psychology Syndrome).  Proteins and toxins that are not supposed to be in the body at all can make their way into the brain, where it becomes 'irritated' and reacts. Amazing! If the foreign protein or toxin gets past the first line of defense, the body has a new alarm bell to let you know something is wrong. Seizures is one of those alarm bells.

Clearly I am not happy about this new development, and it will add  new dimension to every food trial we do from now on.  It illustrates further how sensitive Ellie's specific situation is, but the bright side once again is that her body is working properly and recognizing foreign funk. I will hang on to that!

Saturday, February 25, 2012


At this point in my life I consider myself to be a poop and vomit expert.  I am getting pretty good at immune system and gut health 101, yet I really know very little about neurological symptoms.  I know they are connected to the gut, but admit I have paid little attention and put all of my focus on the symptoms we label as 'FPIES'.  As a result, the last three weeks I have once again felt that panicked run, as I headed up the steep hill of learning once more. 

About three weeks ago we gave Ellie a microscopic dosage of a new probiotic.  This is a probiotic we have been building to for a year.  It is a probiotic that would show she was healing and that I hoped would push her into the realm of eating more foods. 

That afternoon I put on her shoes and she headed for the door to the backyard.  She stopped short like a stiff board, and there she stood, not moving,.... frozen for a good count to five.  She then fell over the same way, bouncing off the table leg and hitting the floor with a thud.  She laid still for another count of maybe 5, and then the screaming began.  It was a scared, hysterical scream, and she fought me holding her or even picking her up. She used no words, and only grunted a weird growl at me when I asked her questions.  When I looked close her pupils were not the same size.  It took about 5 minutes for her to calm down, and she was no longer interested in going outside. She seemed a bit worn out. 

In my head I thought 'wow, that was scarey and weird.'  For several days I mulled it over in my head, and kept an eye on her.  For the next two weeks we continued with the probiotic, spacing the dosages out farther and farther because her eczema was horrific and she did not seem to be tolerating it at all.  We don't think she had another 'fall down' episode, but she would wake up screaming that same hysterical scream in the middle of the night.  By the end of about two weeks her verbal abilities were a slurry mess, and she had lost complete words. 

Needless to say, the last few weeks have been time of research, processing, and some good mommy panic.  I remembered these 'thumps' prior to starting GAPS and had even blogged about them.  I paid little attention to them, and they stopped a couple of months after starting her on GAPS.  This is the first time I had witnessed the 'episode' from start to finish. 

Yet never fear, God is always preparing the way.  I have a colleague/friend whose son has epilepsy and I ran the information by her.  I also now have a long distance GAPSkids friend whose daughter has Dravat syndrome, a severe form of epilepsy.  I was able to get insight from her from a GAPS perspective.  And that Rockstar GAPS doctor we love...well her first doctorate happens to be in neurology.  I had listened to some basic information on seizures from her sessions at the WAPF conference in Dallas. 

I emailed Ellie's doc (Dr. Cowan) just to let him know and confirm I should stop giving her the probiotic.  Of course he said yes. I think in the back of my head I hoped he would tell me it would stop and get better and that this was just an adjustment period. I knew better.  I knew that it wasn't. I knew that pushing through symptoms of something wrong was just a ridiculous way of ignoring the body's warning signs. These symptoms had caught me completely off guard.  They were frightening. 

It took 7 days for Ellie's verbal skills to return to 'normal'.  It has been 2 weeks since the last dose of this problematic probiotic, and her eczema is still a disaster.  Her cracked arms and legs keep her up at night, and bleed from her scratching.  While we wait for her body to heal, we tweak her next steps.  The plan changes again, and I delve into learning about neurological symptoms.  We adjust. The plot thickens.  The complications increase. And I get used to the idea that my FPIES toddler is also prone to having seizures.

Friday, February 24, 2012

Well, Shoot.

Today as I watched Ellie suck on a dried mango I was launched into a surreal moment.  I was breaking the rules by letting her have it, but truly I had no idea she would actually put it all the way in her mouth and try to eat it.  We have headed back to Occupational Therapy, and are taking a look at her major feeding delays and sensory issues.  She has begun to finally show signs of wanting to put food in her mouth and learn how to chew.  Today she surprised me by putting a dried mango quite into her mouth and following it up with a 'dat yummy good'. As I looked at the mango smears on her face and revved up for the coming confrontation of having to take it away, I had a flash back to what that would have meant one year ago.

A year ago it would have meant panic. It would have meant waiting and watching the clock and wondering if there would be vomit, or skin blistering diarrhea, or hives, or fluctuating blood pressure, or.....?  Today it meant 'oh crap, how much fungus is that feeding', and 'she is going to be crushed that I have to take that away'.  And she was.

She sobbed as I told her that was enough because it would hurt her belly, and screamed 'mine' repeatedly at the top of her lungs.  She let me hold her as she yelled in frustration to the point where I was certain the neighbors would call the police.  And then we moved on.

There will be consequences.  Regardless of what symptoms we may actually see, those minor slip ups are not minor at all when dealing with the extremes of Ellie's gut health.  But in one year's time she has had enough healing that the day ended different.  I am not gearing up for a long night in the over-sized green recliner holding a baby crying in pain, and cleaning up continuous vomit.  And for this I am thankful. 

A few steps backwards due to a dried mango certainly stinks.  But this time I have the opportunity to see evidence of healing, and be happy she is showing progress with self-feeding.  Works for me.  Makes all of that broth making a little easier.

Tuesday, February 14, 2012

A Valentine's Day Reflection

In reflection of a hard fought year, I cannot help but see the long list of people who have helped us along the journey thus far.  Our needs are still long, and our journey far from over, but the support we have received can only remind me that we are not alone.

There has been Joy who showed me that I did not need a pharmaceutical company to tell me what was best for my child.  There is Nichole in PA who has been an encouragement and a prayer support throughout the entire journey, and local GAPS mamas who have helped keep me sane (Dom and Rebecca).

The list goes on...
Hailey who supplied the Vitamix that allowed us to feed Ellie for the first 6 months, Julie B. who purchased us a freezer for storing meat and zucchini, and Julie N. who used time in her super busy schedule to make Ellie's laundry soap and ship it to me.  Several people helped with the cost of getting to the WAPF conference in Dallas, including Molly who helped me find a place to stay while there.  Brea and Penny who gifted us stock pots, and Cynthia who has loaned us hers.

Jubilee Farm, Winterport Farm, Bledsoe Farm, Atkins Ranch - all amazing resources, making clean food, and understanding the hurdles we face to feed Ellie.

Both sets of  Ellie's grandparents who have helped financially.  Jason's parents who helped finish the chicken coop that houses Ellie's grain free chickens/eggs.  My parents who now house the roosters so that we did not have to butcher them early. 

Patty who helped make the connection with old friends - Aaron and Steve, who have supplied us with countless pounds of wild game, and resources towards several others who have donated as well.  My only regret is that those hunters may never truly understand how pivotal they have been in Ellie's healing.

Old friends, such as Julie N. and Amie, who have kept their ear to the uphill battle we faced, offering encouragement along the way.  New friends who have done the same, and helped me transition to our new normal, such as Jen A, Cyndi, and Jen F.

And for the GAPSkids mamas- mamas who are friends, supporters, and who are walking the same path. Who are brave, going against the easy and the expected, so that they may heal their children instead of simply sustaining them.

I could continue for weeks. And my only regret is that it is impossible to name every single person.

But I must not forget the most important - my husband.  The world's best daddy who has made the adjustments necessary, who spends hours every evening doing dishes and blending meat after a long day at work, who sits by the tub during detox baths, and who still finds time to teach his 6 year old soccer and hang out with his wife.

This February 14 I am incredibly thankful I am not walking this journey alone.  I am amazingly grateful for all of the people who have allowed God to use them.  He has been faithful to provide. Thank you to all who have been a vessel!

Thursday, February 9, 2012

It's a GAPS-iversary!

On the night of February 10, 2011, I held a dying child in my arms. 

Her weight had plummeted, she was dehydrated, and her elemental formula had failed her.  I spent that night rocking a screaming child, cleaning up vomit, and staring into her dull eyes. I was paralyzed by fear. 

We had been told:
absolutely do NOT feed her animal products
she is horrifically allergic to corn
there are no medical studies
feeding her is by trial and error

We had been instructed to:
take her off the elemental formula
feed her homemade almond milk and her safe foods (a handful of fruits)
try lamb
try a multi-vitamin with corn as an ingredient
wait for an appointment with a 'top nutritionist'

We had been 'reassured':
she can go at least a month before we need to be concerned about her malnourishment affecting her

Her doctors had always marveled that she continued to grow and maintain her weight in the 90+ percentile, in spite of her medical problems and limited diet.  Her lack of hair, puffy body, and swollen joints were just signs of a chubby baby.  And now her weight had begun to decline for the first time in her life, and there was expressed concern for her 'entering her failure to thrive'.  Her body was tired and worn out from fighting.

We followed the advice we were given, and she dropped 22 ounces in less than 3 weeks time.  And on the night of February 10, 2011, I was certain she may not make it until morning.

Fear. I could never explain the fear.

I will never forget kneeling beside my bed in anger and fear and panic, and thinking it completely ridiculous that I would live in one of the richest nations in the world, yet there was no answer for my daughter.

The actual dates are muddy since email dates do not match blog post dates;  I certainly was not focused on taking notes.  I had already purchased the GAPS book and had skimmed it.  My brain was a muddled mess of GAPS facts, what the doctors were telling me, and what I had found in my own research.  I look back at my blog posts and cringe: I had no idea what I was doing and no one to ask.  There are a lot of things I should have done....differently.  And a lot of things I did not understand.  But by mid-March, and after 5 weeks, we had Ellie entirely on stage 1 of the GAPS introduction healing diet.

It was hard work.  And it was petrifying.  

Miraculously there was one other FPIES mom on the other side of the continent who had decided to start her FPIES twins on GAPS the same week, and without either of us knowing.  Praise God for miracles such as this. Her support over the last year has helped to keep us moving forward. Never underestimate the importance of support.

Tomorrow it will be a year since I sent my first email to Dr. Natasha, and she responded with exactly what I needed to hear:  You can heal your daughter.

One year ago tomorrow, someone I had never met saved her life.

And I vowed I would not be quiet about it.

GAPS heals autoimmune disease. Period.  It is not a band aid. It is not a fluke. It is not a trendy diet or a prescription for a select few. It is scientifically backed, time tested, and designed for even the most difficult autoimmune diseases. And in the face of fear, it provides hope.

Need hope? 

Sunday, February 5, 2012


We ran out of zucchini. We had two shelves of a huge upright freezer crammed full of bags of zucchini because we bagged and froze in advance for months. It lasted us until now. And we ran out. So I spent two days with Daddy's help calling stores to find organic zucchini in bulk, until I finally found some at a nearby Raley's (supermarket).

When picking up our case of zucchini, I felt compelled to say thank you and explain their importance.  The result was some seriously uncomfortable Raley's employees, and the 'LOOK'.  

It had been awhile since I received that "are you just a crazy lady or should I feel bad for your child" look.  Perhaps I just haven't been venturing out much lately, or perhaps I am getting really good at going about my business and not caring about the stares.  Regardless, that 'crazy' look is hard to miss when you are paying attention.  I get it all of the time with the 'my child is allergic to food' explanation.  Then I get it all the time with the 'my child eats broth, meat and a little zucchini' explanation.  And on occasion I get it out in public when I pour a brown steaming liquid from a thermos into a bottle and hand it to my toddler. (someone even asked me once if is was coffee?!)

After we transitioned to a real food family I began to get it in places that included my 6 year old.  Sometimes I think people figure I am just one of those homeschooling moms.

And these days I am beginning to wonder myself, because I certainly did something crazy.  We have been plugging along with Ellie doing fantastic. Aside from corn and soy, the girl loves her meat and does fantastic on it.  Her eczema is clear, her growth is great, her milestones fantastic.  And if I forget about what she can't eat, or the fact that she is still eating from a bottle, we trudge along fairly nicely.  We are in a broth-making groove.  Until now.

The reality is that she is not progressing because her body bacteria needs more support.  And as much as I am loving things being 'easy', we can not continue to sit in this place without pushing forward.  So....we started her on a new probiotic.  Big deal you think? Not really.  We gave her BioKult - the probiotic I have been fearing for almost a year. 

This probiotic is known for being powerful stuff, and include traces of soy and dairy as well. EEK!  Holy cow- she wears a medical alert bracelet for soy and dairy.  The box of BioKult has been sitting on my counter for at least a month while I built up the courage to dose her.  Perhaps I was waiting for a well rested day so that I could be ready for a long night. But that never came. So I just did it. Whamo!

And guess what? She didn't explode. In fact, she has had some great progress from it. We think. So far. Since it is still the beginning.  But she has also had some pretty bad side effects.  The first couple of doses were incredibly scarey as the toxins in her body crossed the blood brain barrier.  Her eczema is also the worst it has been in many months.

Healing is a process.  Her's will take lots of time, and lots of finesse. This mama only wishes it didn't have to sometimes get worse before it got better; but those are the cards.  Unfortunately for Ellie, sometimes she has to wait for her mama to get over the crazy, and get up the courage to help her move forward.  Fortunately for us, we are nearing the home stretch!  A microscopic dose of BioKult, means an incredible amount of healing already done!

Wednesday, February 1, 2012

Grain Free Chickens

We did it. Ok well the Daddy of the house did most of it.  And we had lots of help, like from Opa who helped with the chicken coop.  But we did it.  We have our first pot of grain free chicken broth brewing on the stove. 

About three or four weeks ago several of our backyard birds decided to hit puberty and announced their arrival by crowing all at once.  Not sure yet what we wanted to do with these roosters who were not quite big enough to butcher, we loaded them up and delivered them to my parent's house for holding.  Daddy and Papa threw together a second coop there to hold them, where they are happily gorging on worms and getting fatter.

We were left with 7 birds in our backyard for laying hens; until Sunday when one of them decided to crow.  We were unable to drive it up to join it's 'brother's', so the unlucky fellow has become the first grain free chicken grown from our yard to feed Ellie, and the ultimate homemade chicken soup for healing.

Exciting times around here.  This is a hard won battle in the fight for safe food to feed Ellie, and one step in a larger plan.  Stay tuned for more chicken stories as we supply our kitchen table....and hopefully those of some others.

Note: If you are looking for information on raising chickens, please check out this book by Harvey Ussery.  I had the blessed privilege of learning from him for an entire day at the WAPF conference in Dallas.  His information and teaching has been pivotal in our success. 

If you are looking for more information about our grain free chickens, please hop over to my new site where you can find the details: