Friday, April 27, 2012

It's A Wiggly Party

Ellie loves the Wiggles.  Loves is actually a mild word for it. I should probably call it more of an obsession or completely love struck.  I recently took a look at their website and found that they will be touring again starting this summer and heading to the U.S.!  Ellie's birthday is in August and they are visiting Sacramento in July, so we are hoping to make it an early birthday present.

The Wiggles also support Anaphylaxis Australia, which is pretty cool. Wouldn't it be cool if I could get them to sing this song for Ellie?

Did you see the guy in the big meat suit? I can't help but wonder what it would be like to have the Wiggles go GAPS with their song and have their descriptions of symptoms disappear into a pot of mom's chicken noodle soup.  Perhaps someday I will get creative and do a snazzy video of my own (never).

For now I will just film our own Wiggly Party with the rockin' Ellie.  That alone reminds of how far we have come in 14 months.  I love her spunk!

Tuesday, April 24, 2012

Wanted: Team Ellie

It is not uncommon to have a 'team' of doctors when dealing with a chronically ill or special needs person.  Every doctor has a specialty and must send you onward when things appear to involve a section of the body that they do not specialize in.  With every doctor we have added to Ellie's team we have had more doors open and felt more covered in the event of an emergency.  The amount of effort it has taken to bring each doctor up to speed on her massive medical history, coupled with the battle of finding doctors who will work with us instead of against us, makes each doctor on her current team extremely valuable.

At the same time, medical insurance has rapidly become a nightmare in our home. PPO's and HMO's just don't work the way that they used to. Because of restrictions placed by our HMO and the endless fighting to get things covered, we switched to a PPO.  Bad decision.  But the only decision we had.  The HMO was doubling in price and money was (is) needed for feeding Ellie.  While the PPO gave us flexibility, we could only afford one with an extremely high deductible.  The result has been thousands and thousands (and thousands and thousands) of dollars of medical bills.  Many of the holes in coverage I did not discover until after we needed it; I just had not had the time to do the research that needed to be done.

On the first of next month our insurance is changing.  It will provide coverage in the event of an emergency, such as the bead-up-the-nose incident which ran us almost $5000 for a quick ER visit.  And it should provide coverage for the next steps in Ellie's treatment, including Occupational and Feeding Therapy.  It will also include none of the doctor's on her current team, or any of the medical group we are currently working within.   

When I realized that we had no choice but to change our insurance to a plan that would include none of her doctors....I panicked. My mind raced at the list of things that we still need to accomplish and I felt the fear begin to creep in.  And then I stopped.  I took a deep breath, and I looked at Ellie, dancing across the living room floor, and reminded myself that fear is not of God.  He has promised a future and a hope for Ellie, and He has been faithful to show us that time and time again.  And whenever He closes a door, He opens another one - I just have to be willing to walk through it.

So on May 1 we begin building Team Ellie from the ground up.  Jeremiah 29:11 promises: "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you a hope and a future."  And we are standing on that promise for Ellie.  We are recruiting!

Would you be willing to join Team Ellie?  

I am searching for at least 20 committed believers 
who will join me in a prayer journey toward healing for Ellie.

I am searching for friends who will:

- devote ten minutes a day to praying for Ellie for ten days, May 1 to May 10
- receive and remember periodic prayer requests beginning May 11 for 6 months
- celebrate with us 6 months from May 1 as we look back at what the Lord has done for Ellie.

That's it.  No special requirements needed.  Just a firm belief in the power of prayer and knowing that 'if you have faith as a mustard seed, you will say to this mountain, ‘Move from here to there,’ and it will move; and nothing will be impossible for you.” (Matthew 17:20). 

Ellie needs prayer.  The big, petitioning-on-her-behalf-and-believing-in-healing kind. So if you think you are up for the challenge and would like to celebrate with us in the Maker's promise of hope, would you send me an email letting me know?  (  And I will add you to Team Ellie.

I am doing my best (daily) to set aside my fears for what this change in doctors may mean, and I am publicly committing to make THE Healer the team leader, no matter how badly I may want to take control.  And I have also designated Team Ellie kick-off day (May 1) as International Fast for Ellie Day.  In Matthew chapter 17, the disciples were not successful in healing a particularly tough case, to which Jesus counseled 'this kind does not go out except by prayer and fasting'.  So in addition to prayer, I will be fasting that day as well. 

Before she was born, the Lord gave Ellie this verse: 

I prayed for this child, and the Lord has granted me what I asked of Him.
1 Samuel 1:27

It holds great significance for us today.  

I know there must be at least 20 people out there.  I can't wait to see what He has in store.

Go team! 


P.S. If (like me) you are not always caught up on all the blogs you follow, and want to jump on board after May 1 that would be awesome! Ellie can use as much prayer as she can get!

Saturday, April 21, 2012

Hold the Diagnosis

The appointment with the neurologist was very helpful.  The doctor was able to put into Ellie's medical file very important information that has not been there until now.  He documented her limited diet, her severe responses to corn, and her probable seizures (seizures I think need to be confirmed on an EEG).   He checked her gag reflex and swallowing abilities. He acknowledged her turned in foot and leg, hip issue, and sacral dimple/line.  He said she needs major feeding therapy by someone who is very experienced, and disagreed with some of the advice we had already been given.  He said she needed to be seen extensively by someone who had experience working with severe cases, such as stroke victims.  He brought up several things that had never been addressed, and he also helped us piece together a few new things.  This was GREAT.


We will be considering the MRI; we will not be doing the EEG.  The reasons for this are several.  For starters Ellie has never had seizures except in response to food or perhaps environmental exposure.  She has no signs of a brain tumor, has no evidence of a brain bleed, and has not been in an accident or injured, just to name a few.  NO additional complications came up or were of concern to the neurologist.  The topical glue and chemicals they would use to adhere the monitors would most certainly cause all kinds of problems for her overloaded system.  When I read the handout that said to be sure and scrub her head to remove all chemical adhesives immediately after removing them I though 'yeah right. she would be a wreck before we left the outpatient facility'.  At this point we do not see an epilepsy diagnosis being helpful.  We already know she is at risk for seizures, and aside from diet modification the only accepted form of treatment is medication, many of which destroy the intestines.  It is a label that could affect her for years to come.

And by the way....

We don't make our choices based on fear (no matter how afraid we may be). But I felt it important to note that while I am new to the world of epilepsy, it is obviously a diagnosis that is considered rather severe in the world of children.  No one doubts that seizures are scarey, and (potentially very) damaging.  Opinions on how to treat epilepsy are strong, and if you choose an alternative approach to managing seizures and your doctor is not in agreement, child protective services can be contacted.  Far fetched as this may sound to some, I know moms of epileptic children that this is happening to.  I have read major news stories of parents choosing non-traditional approaches to their child's cancer who this has happened to.  I know FPIES moms with Munchhausen by proxy in their child's charts.  One of Ellie's GI's documented that Ellie's dietary restrictions are exacerbated by an over protective and apprehensive set of parents.  Who do these doctors think they are?  Just like teachers, there are some good ones, and some bad ones, and some who have forgotten the oath they pledged.  We are so grateful for the team of doctor's Ellie has had;  we have been spared much when compared to others.

And another thing....

Additional deciding factors for us right now are rather large.  They are:
- Our insurance would not pay for an EEG and we would have to pay for it out of pocket, and
- Our insurance is changing and this doctor is not on the provider list.


For now we hold off on a diagnosis.  While this doctor is amazing and uses diet as a form of seizure treatment, we have no idea who Ellie's next team of doctor's will be.  And the potential medical bill coupled with the risks far out weigh the need for a label for new symptoms.  The goal is the same: healing.  So for now an EEG is not even making the list of 'to do's'.  We are loosing her 'team'.  And that is a pretty major event.  Or is it?

Tuesday, April 17, 2012

I *heart* Neurologists

Dr. Natasha is a neurologist. And obviously we admire her greatly.  As for here on the home front, I wasn't planning on taking Ellie to the neurologist.  In fact, I had several reasons why it would be a waste of time and had made up my mind we were not going. But alas, a beautiful friend helped us jump through red tape to see one of the (if not THE) leading neurologist in the area, so we went.

One of the most amazing things about this appointment was that another mom had warned of my coming (and yes I feel as if warning is a proper description).  Thanks to this lovely friend - a mom who knows me, and who has an epileptic son treated by this doctor -  I didn't have to come with a resume of why I am not crazy, or an explanation of my daughter's extreme situation.  Once I got there I realized that was probably the last thing I had needed to worry about.  It was easy to see why he is in such demand; he is phenomenal at what he does. 

He took Ellie's novel long history, and we had an hour long conversation.  He knew of FPIES, and EE, and ceilac, and asked very important questions like: has she been scoped? were her eosinophils checked? who was her GI? has she seen a geneticist? why not? He was even interested in her dissacharidases tests.

He asked about her allergies and why her chart just said peanuts and a couple other things.  I explained that I was always told it was not possible to put the information in the computer.  I told him what her biggest triggers are (dairy, soy, grain, corn), and emphasized corn.  He typed away, and then said "Oh! so she can't do corn syrup, or corn....." I didn't hear the rest. I was floored! Did a doctor seriously just offer that to me without explanation? No argument about corn? or derived foods? He just kept typing.  For the first time we were able to get that information spelled out in her charts.  I was giddy.  I commented: wow! most doctors don't even understand or believe that is a possibility.  I said we were grateful to our fantastic allergist for that realization (to which he wanted to know who and said 'oh yes he is great.')

He then asked what she ate. I gave the 2 minutes version of the GAPS diet and its origins in SCD for Celiacs.  I explained her current diet, and said that she would react to meats fed corn, soy or grain. His response while typing was a quick: "well, of course. That makes perfect sense."  I about fell off my chair.

He confirmed what we have seen is most likely seizure activity, and believes she has heightened seizure activity at night. He asked a lot about what she does when she wakes up and how often.  He said that night time seizure activity is common with kids like her due to body changes at night.

He shared several stories of healing, and treatments he has used for other children. The appointment was very full of information and conversation.  He took a look at her spine and her sacral dimple/line, her hips and her turned in foot.  He said there is possibility that one side of her brain is having more activity than the other which is contributing, but that he did not really feel that was the case.  He has some tests he would like to run (EEG, MRI) and then discuss things further. And he finished up by saying he 'looked forward to working with her. She is a very interesting case.' I laughed out loud. Interesting indeed!

Friday, April 6, 2012

Father, Forgive Them

Luke 23:33-34  
 33 And when they had come to the place called Calvary, there they crucified Him, and the criminals, one on the right hand and the other on the left. 34 Then Jesus said, “Father, forgive them, for they do not know what they do.”

Even those who don't believe are familiar with the story.  Even those who don't believe have most likely seen a clip of a film, or heard reference to the brutal beatings and harsh treatment displayed to Jesus as he was led to the cross.  

He was beaten.
He was spit on.
He was ridiculed.
He was tortured.
He was humiliated.
He was a victim of false accusations.
    And yet in the middle of it all, he cried out: Father, forgive them, for they do not know what they do.

Know not what they do? Seriously? They looked directly into the face of God-incarnate, and they had no idea what they were doing? How in the world could that BE? It certainly is hard for me to believe. On the surface it seems almost ridiculous.

I have mentally and spiritually chewed on this verse for several weeks.  Today is Good Friday.  Today is the day He was hung. Today is the day He said these words. Today these words hold healing and hope for me in a way they have never before.

In the last two years we have been blessed and supported in a million ways by friends, family and people we barely know.  But there is the other side. I,...we, a family, have also been hurt.  We have been hurt sometimes by circumstance, we have been hurt sometimes by family or friends, and we have been hurt sometimes by those we barely know. We have been judged, we have been misunderstood, and we have been let down.  On occasion we have even been abandoned. And I have harbored anger.  

It is not hard to know in my brain that the way people behave or react is about them, and not about me.  Yet it is extremely hard to know that in my heart.  I began to pray that I would respond to circumstance with compassion and mercy, instead of anger.  And what I was given was this verse.  

The dialogue went something like this:

Me: Ugh! Seriously!? (enter reoccurring or new anger at someone)

God: Father, forgive them, for they do not know what they do. 

Me: Seriously? Forgive them? And because they do not know what they do? 

God: Father, forgive them, for they do not know what they do. 

Me: You can't be for real.  How can they not know?  And so what if they don't!

God: Father, forgive them, for they do not know what they do.

The doctors? much anger at the doctors.  The ones who questioned me.  The ones that have not been trained in nutrition. The ones that had no real answers. The ones that made her sicker.  The ones that convinced me that chemicals and artificial 'food' was all she could eat. The ones that did the best they could with the information they had.  Oh, wait....their best.  They didn't know. 

Father, forgive them, for they do not know what they do. 

Family who have no idea what FPIES is after 2 years. Friends who chose less friendship over more effort. Farmers who were not honest in what they fed their animals. Neighbors who only care about our lawn. Other FPIES moms who fling unkind words. Church leaders who tell us we are not welcome.

Just today we were treated poorly by a local farmer.  He did not understand we are not capable of dropping everything and meeting him with a moments notice. Again, I was angry. 

Father, forgive them, for they do not know what they do. 

Can I choose that prayer and perspective? Can I let go of the hurt and insecurities that surround my new normal enough to extend grace to others?  Others who need the same things we need? Who need compassion, and love, and grace, and knowledge, and JESUS?  Not without help.

Father, forgive them, for they do not know what they do. 

These words are freedom.   When I am making the best choices I can make, only to find out that they were not good enough or that they were wrong.  Then I can rest. I can rest in knowing that for ME He said those words. For ME He died.  That the One who walked on water and calmed the sea said those words for me.

Father, forgive her, for she does not know what she does.

Freedom.  Freedom from chemical food, and artificial ingredients, and disposable diapers.  Freedom from what my eyes choose not to see.  Freedom from past choices.  Freedom from hurts, and insecurities and things I can't change. Freedom from guilt.

Today is Good Friday. And on this Good GOOD Friday, I lay all of my anger, and fear, and disappointment, down at His feet,... knowing that He forgives me.

And there I am set free.

Thursday, April 5, 2012

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 8th 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!