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 Onion

We gave Ellie a week to try and clear her eczema after not doing well with the pro-biotic.  It only got worse, and by day 8 or 9 it started to look a bit different.  We headed in to the pediatrician for a culture and got confirmation that she had a secondary skin infection - staph (and thankfully not MRSA). 

She was prescribed 10 days of compounded keflex, I was told we had no choice, and I cried.

All I could think of was how we had spent ONE YEAR working on body bacteria - adding strains, controlling strains, controlling fungus, you name it. And now I was going to douse her with 10 days of bacteria killing medication that is discriminatory, hitting only limited strains and allowing other strains to take over and fungus to gain ground. 

Wretched yeast.  Fungus is a leaky gut's worst enemy. Thanks to it's natural formation it is similar to a corkscrew, and does just that to the intestinal wall if allowed to go unchecked. 

Fortunately I was able to pull from the wisdom and reminders of several other GAPS mamas, so my panic was short-lived (this time). In fact, another GAPS mom summarized it perfectly.  All I need to do is switch the name and diagnosis:   "I know that He can heal Kennedy Ellie at any time, that is the hope I hold onto everyday, but I also know that as long as Kennedy continues to have seizures Ellie continues to have FPIES, God is working through them it for good. I have to trust and be thankful that whether I have the privilege to see it in my lifetime or not, God is working goodness through our situation and fruit WILL be harvested!" (Hebrews 11:1)


So out came the pro-biotic, nystatin and fermented cabbage juice, and I pummeled her with them, along with increased numbers of detox baths.

Her eczema cleared! And then we had a day or two....before it came back.  And yesterday she ended with a screaming green acidic diaper that removed skin from her girl parts, and I had a PTSD flash back to the days of pre-GAPS FPIES. One late night baking soda bath helped, but her itchy eczema is back. Drat!

We have a new list of things to tackle, and a new set of doctors to visit.  And in the meantime she has transitioned into asking for 'food' (things that don't come in liquid form in her bowl or bottle), and doing a little jig with a 'wahoo' when I have something to give her.  I am hoping I can get it on film.  We will continue to work on texture and desensitization while beginning to examine some other new complications. 
 
It's no longer a sucker punch; instead it's an onion.  Another mom talked of this so long ago, and only now am I catching up in my own life.  It's the peeling back of layers to find healing, beginning with the base of broth and then watching to see what else gets in the way.  And we can do that.  I have no idea how much this round of antibiotics will set her back, but that is ok.  She eats, and she is thriving in the most amazing way. That is truly all we need. 

Onward...with patience.

Onion has been removed from Ellie's broth for about 4 days now, and we are seeing quick recovery. Her eczema is clearing and she seems to be moving back into the realm of more normal poo. Hooray! But once again we are in the place of 'now what'.

She finally had her feeding evaluation which has given us a few ideas of how to work on getting her to swallow, and so we have focused on getting her at the table with a bowl of water and a spoon, or meatballs, or puree, or zucchini of some nature, in hopes of moving more towards a 'full belly' feeling. She licks food, or feeds me. And says 'mmmmm'. Or pretends to chew. Or eats rocks and paper.

We have worked hard at making the food in the house 'safe' for her. Even though she can not eat it, we are focused on removing things that would actually hurt her (like corn or soy). That way we can spend less time screaming 'stop don't touch that' and more time letting her explore. Luckily we almost always have some sort of meat on the table that she can chew on without worry. Except for chicken, which should be ready for butcher the end of July.

So overall we are moving forward. I suppose. Patience has never been my gifting, and this waiting-for-healing-thing is certainly difficult. (can you hear it in my tone?) Or perhaps it is just this up-twice-a-night-every-night-for-two-years-thing that is wearing me down. Or maybe it was the full vomit reaction she had this weekend after attending a birthday party where she was inadvertently included in a cloud of aerosol sunscreen that was not intended for her, reminding me of how sick she really is. Or.....

I am going to choose to blame it on the fact that it is gloomy and raining on one of these last days of June. And remind myself of this all too familiar scene, which makes me laugh every time. Those people who wake up whistling? They drive me nuts.

Treading Water

As I ran my hand over Elianna's back tonight, and then to the backs of her knees, I gave glory to God for the miracle unfolding - the clearing of her eczema. I have often begged that we would find a cure for it before she was old enough to notice her body covered in the dry patches and learn to be self-conscious of it. We are making progress as we have just barely begun the GAPS Introduction diet. I have been moving slowly in an effort to monitor things closely, but it is time to pick up the pace. The broth and additional meats added are giving her much needed nutrients, but the corn based formula has brought back inflammation, and I am watching her little eyes change and her body begin to puff. Her cough is not going away from her recent virus, and we are having to administer albuterol via nebulizer every night. And she is hungry. Believe it or not, she wants food and she is looking to fill her belly. Perhaps the broth is not filing her up like the heavy, dense formula was. Perhaps her throat and body are feeling better. Or perhaps she has just finally tasted actual FOOD and is liking what she tastes.

I can not take her off of the formula, as it is adding the additional things she needs. I can not move forward with her yet, because I don't have her on a probiotic. The probiotic is critical for healing her intestines and stopping the reactions. But the right one is equally as important. There are an unlimited number of bacteria in one persons intestines, and many are not yet known. We commonly hear them referred to as 'good' or 'bad' flora, but an imbalance of 'good' bacteria can be just as detrimental. Which one is it? How do I know?

I feel the clock ticking again as we stand still. The broth will only sustain her so long, as the formula makes her worse again, and keeps her from entirely healing. She needs more caloric content than the broths are providing, and at this point she is still refusing to actually eat the pureed meats. I can only get so much into her bottle. Tonight I gave her nectarine puree at dinner and she happily lapped it up. She has become quite skilled with her little spoon. But minutes after taking her down from her highchair and putting her in the bath, her daddy called me to make observations. She was lethargic, slow, goofy, and drunk-like. BIZARRE! Only last night had I read about how an intestine overrun with certain flora can be fed with sugar, and then produce a type of alcohol, causing a drunk-like effect. Had it not been for the fact that I was the one reading the book, and Daddy was the one that made the observation, I would have found it too coincidental.

Time. This all takes time. Find meats, research meats, make broths. Get on a set schedule, keep feeding it to her as close to every hour as possible. Homeschool big sister, do household chores, feed the rest of the family, and let's not forget work a 3/4 time teaching position. Time is becoming more and more scarce. As is money. Buffalo meat today was $23.99 per pound.

I find myself observing the next crossroads on her treatment, and more decisions are about to arrive. I am grateful and feel thoroughly blessed for two weeks of success and immense progress. But now we are in a hold pattern, and for Elianna it can only be for a short time. One foot in front of the other. Day by day. Decision by decision. Asking for wisdom, looking for guidance, and not taking for granted any connection or incidence that has been put in my path.

For I know the plans I have for you, says the Lord. To give you a FUTURE, and a HOPE. This is what we hold to for Ellie.

Week by Week, Day by Day

The first week of January Elianna had symptoms of a reaction from a bath soap with wheat protein. By January 4th she was having a typical upper respiratory response to the reaction which looks a lot like a bacterial or viral infection. Off to the pediatrician we went for a nebulizer refill (nebulizer medications do not have corn, while all of the inhalers and asthma medications I have researched do). We ended the almond milk and went back to all formula in an effort to help her get better and eliminate any possible complications. And so ended the first week of January.

Here comes week two. I noticed that Elianna's eczema was the worst it has ever been, and that we truly needed to focus on getting her a safe lotion. That led me to the Eucerin, which she ate during week two. For details on this incident see my previous post here. I finally decided that anyone who ate lotion would not feel very good. I decided to put my energy into finding an oil that might work, and thus we trialled almond oil and it was a pass!! It has not completely fixed the problem, but so far we have seen some good improvement.

With the arrival of week three and no more 'prunus' foods to go with, I was feeling a little bit brave and purchased grape juice from the store. All of her safe foods are now out of season, and the choices are limited. I understood grapes to be one of the few fresh fruits you can buy in the store without the traditional corn, soy or dairy derived coating. Soooooo..... daring the issue of cross-contamination, I handed her a cup of grape juice on Monday morning. After two big gulps and about 10 minutes she began to have a glazed look and just sat in her highchair and stared. This prompted me to get her down, and enlist Jason is the observing. Then the reflux coughing, urping and vomiting started. Nothing projectile but she cried in pain. At about 25 minutes she began pointless running in circles around the kitchen island, which was very bizarre to watch. Around and around and around and around. This lasted for about 5 minutes at which case she stopped and we noticed that her face and around her eyes were getting puffy. We stood and watched her eyes swell within a matter of minutes. Another 20 minutes later it seemed to decrease and she was feeling better. Except her eczema was bright red and raised all over her body, almost like hives. Truly bizarre and unlike the reactions we have had prior.

Hooray for January. And, oh, yeah.....that was just the start.

Almonds, Soap, and Diapers, oh my!

With the holidays and some new developments, things have been BUSY around here! Here is an update:
We took the leap to cloth diapers to help with Elianna's eternal diaper rash that resembles a burn and looks strangely like her reactions to her patch testing.

We trialled homemade almond milk. Its super easy to make (recipe here).

We began using soap on her in the bath - organic shampoo/body wash in one. We used it maybe three times at the end of her bath with a quick wash and rinse with the hand held shower wand.

After a week of documenting and watching, we called almond milk a pass (hooray!) but there were some other signs of reaction. The diaper rash returned and her eczema became worse than ever. The questions began. Was it the almonds after all with a delay onset reaction? Was it the bath soap? Was it the new diapers? Was it how I washed the diapers? Or the diaper fabric? This method of questioning is common and some days makes me insane!

In desperation I read the back of the shampoo bottle once more and found what I had missed - wheat protein. CRAP! How did I do that? A call to a girlfriend who battles Celiacs confirmed what I already knew; your skin is your largest organ and absorbs what it touches. Back to 1/4 cup baking soda only, and a lot of prayers that this was the cause of some reflux, pain, and what looked like the start of a full blown reaction. Please please don't be the almonds!

After three days it resolved itself. WHEW. Dumb mommy! But now we have the additional delayed response - sinus congestion, drainage, and raspy asthmatic type cough. It's working it's way out of her system, and I am SO happy it was not almonds. Who needs bath soap anyways?

On to trialling the actual almond nut now!

Life Continues: A Jump to the Present

From September until now, life has continued to push forward. Elianna has successfully passed and can eat these foods now: apricots, peaches, plums, cherries, and nectarines. She has had small 'licks' of blueberries and grapes, but not enough to call them a pass. I spent the last few months canning, freezing, drying, pureeing, fruit leathering, and whatever kind of preserving I could think of while the pit fruits were still in season. All I kept thinking about was what were we going to do when they were out of season and I had nothing to feed her? Thankfully I grew up in Northern California and had access to fruit straight from the orchard. Family friends have blessed us tremendously with cases of fruit 'to feed that baby'. Not all organic, but not processed or coated with anything in any way. Best of all, the fruit helped solve the problem with constipation.

In the meantime she ate a crayon and had a reaction. Safe, non-toxic crayons have soy.

She began eating large amounts of hair, fuzzies and string. We are now watching and wondering if it is PICA.

We finally head back to the allergist for atopy patch testing. (More on that in another post)

Her eczema has become full body. Some days she just has reflux and stomach pain and we cant figure out why. And she has had lots of diaper rash problems that are getting worse.

We realized that over the counter tylenol and motrin make her vomit and we need compounded medications for her. And I have begun the search for a safe probiotic for her.

She sucked on the adhesive on a cardboard box and had a mild reaction.

I have had to cut back at work in order to provide a predictable schedule for her, and have her home where we can practice eating. It's hard to give a toddler a tray full of puree to explore when not at home. It's hard to take her to someone's house and say 'do you mind if I vacuum your floor?' And it's hard to work full time while learning to be a suburban pioneer woman because your child can have nothing from the store.

Meanwhile the medical bills are rolling in and copayments continue. Now the GI wants us to send her to speech and occupational therapy for food therapy.

And I am thankful. Thankful that she has never been below the 90th percentile. Thankful that we now have 5 safe foods. Thankful that she is growing, less puffy, and turning into quite the little toddler full of personality. She never stops talking (we think she is fluent in Chinese). And her laughter is contagious.

We are making the necessary adjustments in our family, and working hard to accept the changes. They are not easy, and some days are definitely harder than others. But we have hope.