Wednesday, November 30, 2011

Drum Roll Please!

Ellie has a NEW FOOD! Thats right. After MONTHS of waiting for healing, Ellie is eating acorn squash!

Today is day two, and she has not had so much as an eczema flare or a burp!

Ladies and gentlemen, we now have a vegetable to get us through the winter while zucchini is out of season, provide some variety, and give us hope that she is indeed progressing (acorn squash has a sugar content that zucchini does not have!).

I can not even begin to tell you the happy hallelujah dance we are doing in our home tonight!

Saturday, November 26, 2011

Off to the E.R. Oh the irony.

Yesterday morning I, hubby, and Ellie woke up with the sniffles. I knew that Moriah had conquered the start of a sniffle virus earlier in the week, so I looked at the goop in Ellie's left ear and in her nose and exclaimed to Jason: "SHE HAS A VIRUS! HOORAY!"

OK ok. Before you get too confused, let me explain. FPIES is an OVER-reactive immune system condition. Ellie's mondo immune system has caused her quite a bit of grief in her 27 months, but the one thing it does do is knock out any virus or bacteria coming her way with a vengeance. She was 18 months old before she had anything that looked like a virus and it ended up being an ear infection caused from reflux. This is actually pretty darn common with other FPIES kids, and keeps doctors baffled if they are smart enough to recognize the body regulating internal inflammation versus the common cold. So the result of her waking with snot? Celebration! Her immune system was perhaps regulating DOWN and doing what would happen in a normal body.

A couple of hours later I had Ellie laying on the floor to change her diaper when she pointed at her nose and said 'pick'. She had been doing this for at least three days, and I just assumed it was some new toddler fascination. Except this time I saw what looked like a giant red blood bubble in her nose. I panicked internally, tried to stay calm, and took a closer look. looks plastic??

Oh yes. All that nose picking? Due to one lodged red pony bead in left nostril.

So much for the snot and celebration. How long had that been in there? Long enough to cause ear drainage.

We pinned her down and I tried to get it out, but the snot and the swollen nose and the worry by mommy to do additional harm kept me from getting it out. Sweet. Just how I wanted to spend my Black Friday funds - paying for an emergency room visit. And I also quickly realized that for the first time in my life I viewed the ER as a scarey place that could potential cause more harm than good. What would she be exposed to? What corn could she come into contact with? What if I don't catch it all? I took a deep breath and off we went.

Luckily they did not make us wait long; it appeared we were bumped to the front of the line. After I answered (three times) if she was current on her shots, why not and when were we going to be making an appointment for those, I decided I would begin to carry cards from the Vaccine Information Coalition in my purse for occasions such as these. And then I had to answer 'are there any medical conditions we need to be aware of'. My concern for avoiding corn based adhesives, etc. out weighed my desire to educate this ER staff so I gave a canned explanation and pointed to her medical alert bracelet (thank you Allerbling!)

Short story only getting longer, it was about a 15 second procedure using a crazy instrument someone designed for creative toddlers just like mine. The only problem was the 'water based lubricant' used to insert the instrument, which oddly caused Ellie to burp the remainder of the day. And out we went. No, I didnt save the bead. Though I should have since it was one darn expensive one.

Wednesday, November 23, 2011

Mint Tea and Blisters

This post title may imply the two are connected, but they are not. We have had two developments this week that I find rather significant.

The first is the introduction of organic peppermint tea. We have let Ellie sip mint tea in the past but she has never actually 'drank' it. Mint tea is part of the GAPS introduction diet, because it is good for the belly. Two days ago we gave Ellie her mint tea in a children's Starbucks travel cup, and she was thrilled. She drank so much tea that she skipped some bottles of her homemade formula (and yes we let her). She carried the cup around saying 'nummy!' and 'ood!', while rubbing her belly. The next day we gave her another cup. And we had day two of no poop.

This worried me because Ellie goes back and forth between constipation and diarrhea when she is not tolerating a food. We have worked hard to get her 'regular' and make sure she goes at the very minimum every other day, or else give her an enema on day two. It is extremely important (for everyone) to not let those toxins sit in the intestines and block digestion. Hoping to not resort to an enema I decided I would use what I now believe to be the magic pooping supplement (once tolerated). I DOUBLED her fermented cabbage juice and held my breath. This could be bad. Or good. The result? Shortly after that was the prettiest poo we have seen in some time! Mint tea? PASS! This desperate mommy is counting it as a new food, thank you very much!

Second on this week's development was a sporadic outbreak of blistery burn patches on Ellie's high back, with a few on her arms and chest area. They started as scratchy looking burns, and then quickly developed into yellow blisters surrounded by a yellow tinted red ring. This was shortly after I discovered a confrontational comment on a previous post suggesting her skin reactions to corn were actually impetigo. My first thought about these blisters - VOODOO? hehe. OK, not really.

The blisters actually looked a lot like the result of her corn patch testing done by the allergist, so it could be a corn exposure. There was also a yellow infection type tint, so maybe it was impetigo. I mean we do have a lot of chicken poop around at the moment. Better yet, I considered chicken pox, but the blisters were not forming in the right areas (darn. would like to get that out of the way). I went through all the normal questions - new laundry soap? bath soap? .....I racked my brain for clues. And I finally decided it must be a corn exposure, until another FPIES mom said 'oh I get those with lemons and limes'.

WHAT?! ooooh. crap. It's now mandarin season. And mandarins are LOVED in my house. AND as Ellie's healing has progressed, we have gotten lazier with hand washing and skin exposure. And daddy picked up some mandarins last Sunday at the market. For some reason citrus has always been on my be-majorly-careful list. That is not founded in anything other than knowing how much my hands smell like oranges after eating one, and knowing that the oils are really hard to scrub off.

Two nights of soap on the blisters while in the bath, and eliminating the mandarins = Presto. They are healing. It does appear that they will be leaving some small scars, like the corn has done in the past, which really BITES, but with time they should fade. It was a good lesson in not getting too comfortable. Darn citrus.

Monday, November 21, 2011

Dallas, GAPS kids, and Community

November 10 I temporarily left my FPIES broth making duties at home, and headed to Dallas for the WAPF conference. I was thrilled at the idea of learning anything that I could bring back and share with other FPIES-GAPS mamas. I was especially anxious to get into a session with Dr. Natasha Campbell-McBride, and gather more information as it directly related to severe food allergy.

During Dr. Natasha's third session, she concluded with a Q & A portion. I sat and listened, and another mama came to the microphone. As she began I made a realization: there is an entire community of families out there walking the same path with a different diagnosis.

This mama was amazing. She shared a quick version of her daughter's story, and how she suffered from a rare epileptic condition that included a bleak prognosis. This mama had gone incredibly far outside of the box, and started her daughter on GAPS. The result - she was defying ALL odds, and getting BETTER. As this mom shared and then asked her question, she began to waver with emotion, fighting the urge to cry. Her daughter was seizing in the morning before waking up, perhaps due to hypoglycemia. As this mom choked out 'and I just keep thinking I am missing something...' I found myself tearing up as well. THIS mama wore the same shoes. She walked the same walk. She knew what it was like to make that brave leap and walk away from the comfort of the social norm. She asked the same questions.

And as Dr. Natasha answered her, I realized how the same questions and the same answers applied to FPIES.

If I saw her again, I would give her my card with information on GAPSkids, even though it did not visibly appear as a support system for her...yet. Dear Jesus. This mama must know she is not alone. And what amazing experience she could offer!

GAPS kids was originally designed for families of severe food allergies and feeding difficulties who are on the journey to healing with real food and GAPS. What I realized in Dallas is that this journey... of healing a child...outside of the box, regardless of the diagnosis, a petrifying and alone place to be.

If you are a parent navigating GAPS healing protocols and in need of a community, especially in the face of a severe or rare diagnosis, please consider joining us. GAPSkids forum

If you would like to hear more about Kennedy and her amazing path toward healing, and her very brave parents, watch here:

And So It Begins

No, how about a meatball?
No, I am sorry. How about a meatball?
'RAAAAAAAA-ZZZZIIIIIN!' followed by heartbroken tears.

And so it has begun. I have allowed Ellie to nibble on a few raisins over the last few days. She sucks on them, chews a tiny bit and spits the rest out. She has probably had four in the course of 48 hours, and that little bit of sugar has set her eczema to scratch status once more.


How do I get her to actually eat the foods that are safe, and stop begging for the ones that are not?? She sits in the highchair at dinner and moves around the foods we eat, and violently protests anyone feeding her. It's so tempting to force feed her. Though I am not sure what that would accomplish. Just telling her no and listening to her beg is crushing.

This week is 'Thanksgiving Vacation'. I am using it to rearrange the family schedule once more, in an attempt to get time in to feed her all three meals. The amount of time it takes to get her at the table, sit with her so she doesn't beg to get down, and try to coerce her into eating, is amazing. Combine that with cooking real food, and all the other regular mommy and professional educator duties, and I am not sure where sleep will ever fit in. Holy moly.

On to poll other FPIES-GAPS mamas on how they are making their schedules work. Here's hoping for help!

Friday, November 18, 2011

Oops Out of Order

I accidentally posted out of order, and can't move it due to comments. OOPS! If you would like to see my latest post please look here:

The Physiologist

Wednesday, November 16, 2011

Step by Step

'almon patti mama' (salmon patty mama!)
These are some of the things I am beginning to hear from Ellie.
'ookie'  You want some cookie? 'YEAH!'

While she is still not allowed to eat these things, we are sadly capitalizing on one factor: she can't chew.  She is asking to have what we have (such as big sisters salmon patty at lunch), and she is spending time in that highchair. Most of it is licks or moving food around, but that is progress. Food aversion has been the name of the game. Sensory issues and lack of muscle control for chewing is the consequence. We learned from her feeding therapist that there are triangle muscles on the side of the face she has never used, and will now have to do actual exercises to strengthen. Lovely. My toddler the face-muscle builder. But that is ok. All of these hurdles are part of being a parent, and if we can get her to ask for food then we are making progress.

It's the telling her no that breaks my heart.  And on occasion she has managed a whopping chunk off of a muffin or cookie which has required intervention and the devastating taking away of the food she clings to. I can't help but guess each time sets us back a little bit.

BUT we have worked so incredibly hard to get the dangerous foods out of the home - no corn, soy, grains, dairy (for the most part)- that I can always know what she is holding will not do major damage.  Her sensitivities have also improved so that she can hold things such as foods, crayons, etc, and not have a reaction.  So for now we are focusing on exposure, and getting her back into the idea of eating without it coming from a bottle.  Step by step, we are moving forward!

Monday, November 14, 2011

Headed Home

As I sat in the final session of the 2011 WAPF conference yesterday late afternoon, I began to cry. I didnt want to.  But it was one of those in-your-throat-and-it-hurts-trying-so-hard-not-to sort of cries.  Perhaps it was the other moms that were crying. Or perhaps it was the cumulation of a very long three days stretching my brain and my heart with new information.  Whatever it was, I felt it in my heart more than my head.

I attended the session on vaccination information because I felt uneducated on the topic.  The session began, and all I heard was this:  MSG, antifreeze, formaldehyde, aluminum, glycerin, lead, acetone, streptomycin, mercury, monkey kidney, dog kidney, chick embryo, aborted fetal tissue, pig blood, horse blood, sheep blood, rabbit brain, guinea pig, cow heart, animal viruses....and I began to cry.

This session jolted me towards one reality:  I fully vaccinated my six year old.  I consented to those ingredients being injected into her body, and right that moment the mommy guilt was too much.  But as I listened to April Renee of the Vaccination Information Coalition, I heard her say something that jolted me back to the first email I received from Dr. Natasha - but there are things you can do to cleanse the body; there is hope.  HOPE.

This was the incredible theme I continued to find throughout the entire conference. While delivering earth shattering and worldview altering information, every.single.speaker...offered a hope within their message.  Be it instruction on how to support fair legislature, how to take control of your own health, how to detox your childs body from heavy metals, or how to find a support system, there was always something there to light the tunnel you suddenly found yourself in.  There was not gloom and doom, only education and encouragement. 

I went to the WAPF conference largely intending on learning more to help Ellie; instead I received information that applies to us all.  As I leave Dallas and head home in the morning I am convinced of one thing:  FPIES is no longer about one sick little girl.  FPIES saved my family.

Saturday, November 12, 2011

Bye-bye Modesty, Hello Gut Healing

Are you ready to get naked for healing?  It's time to bare those mid-drifts.  What I learned tonight makes those 1960's nudist colonies appear useful.  Ironically this tidbit of information came delivered by Dr. Mercola tonight at the WAPF conference awards banquet, but actually originated with Dr. Natasha Campbell-McBride (who I have now been referring to as the conference Rockstar.  That woman is impossible to catch and talk to). 

Dr. Mercola was sharing what he learned from Dr. N about vitamin D and provided this tidbit:  get the sun on your belly!  Sun rays on the stomach penetrate the skin and into the gut where it kills candida, fungus, and improves digestion.  Are you as incredibly amazed as I am?

Get those GAPS bellies out into the sun and let them soak up some rays of healing. FPIES gone bikini....after Winter!

Other sun tips from Dr. Mercola:
- daily doses of sun on your toes cures toenail fungus without medication in 3-6 months
- daily doses of sun on your armpits kills odor causing bacteria, meaning no soap, no deodorant, no smell.

Friday, November 11, 2011

Real Food in Dallas

Leaving all of the broth making duties to daddy, I have headed to Dallas for the annual Weston A Price Foundation conference.  Quick summary:  today was day one, and what an amazing day!  I am volunteering at Sally Fallon's New Trends Publishing booth which has been amazingly fun.  When not busy I can take turns with the WAPF staff member in charge of the booth and attend sessions.

Dr. Natasha taught three sessions today - a full day of GAPS.  I was not able to attend until the last session, which was fine, until I had someone sitting by me at dinner exclaimed 'what was that you said your daughter has? weren't in the second session? Dr. Natasha had that on her overhead and said has anyone heard of this?  No one raised their hand, and she said that was because it was extremely rare.'  Of course this neighborly woman could have been mistaken, but I would love to get a minute or two to ask Dr. Natasha tomorrow.  Darn it! I would have been waving my arm and jumping up and down! 

I DID get a chance to meet Dr. NCM briefly as her protective husband was requesting she stop answering questions and attempting to drag her away.  She was exhausted and had been up 24 hours straight, and he was being a chivalrous hubby. Seeing her in person only solidified what I had already pieced together about the woman who responded personally to emails from desperate mothers half way across the globe; she is passionate about what she does and the kids involved.  She looked every person in the eye and listened with intent to their questions and stories, often responding to their 'thank you' with 'no, it is completely my pleasure'.  She appeared to cry with everyone, and the offered amazing suggestions for healing and hope.  Truly a brilliant woman.  I was able to shake her hand and choke out a thank you, handing her a card I had brought with me.  And I got a picture with her as well, which I fully intend on putting in Ellie's baby book.  (WAPF conference observation = no one knows how to work an iphone camera)

Here are some highlights from the third session I was able to attend:

- supplements should be a minimum; diet is the treatment
- iodine deficiency is common
- conditions such as reflux do not necessarily need a digestive enzyme supplement. often fermented cabbage can be enough.
- GAPS detoxes the body naturally, and for many there is no need for chelation or detox programs.  Following the program detoxes.
- All immune system diseases have the same root, just different antigens attacking different things. (ie. food intolerance, rheumatoid arthritis, etc)

and some of my Dr. NCM favorites:
-"We are all different; there is no one size fits doctor or scientist in the world can prescribe a rigid menu for you. You must know your body." 
-regarding severe food allergies and intolerances the "digestive system is like a seive". 
-"I havent seen a patient that needs grains."
-"I learn the best from my patients.  Its my patients who teach me."

So much more, but so time for bed!  

Tuesday, November 8, 2011

The Physiologist

Ellie has had problems with low muscle tone and delayed milestones her entire life. When she started GAPS we discovered much of it was due to malnourishment and saw great improvement. Coming off the elemental formula she said oodles of new words just within 24 hours. Lower body muscle tone and walking has been a different issue.

Ellie had trouble getting on her feet and even sitting upright in a traditional infant manner. Ever notice how infants seem to have a rod stuck in their spine? Ellie was always slunched over. An experienced pediatric physical therapist friend took a look and told me it was due to low muscle tone. We made adjustments, tried to help Ellie work on those muscles in different ways, but her feet and legs continued to get worse.

Her right leg turned inwards dramatically, and her left only a little. She began to walk on the side and toes of her right foot. She fell often, hopped instead of ran, and her center of gravity was off. When she began to grab her leg and say 'owie' it caught my attention. I took her to the pediatrician who watched her walk and then said the equivalent of 'naw- lots of kids are pigeon toed and it straightens out'. So off we went with me wondering that fine balance between something-is-wrong and mommy-making-something-out-of-nothing. I decided to watch it, pray, and investigate who should look at her to be sure. Podiatrist? Chiropractor? Physical therapist?

About three weeks ago I began to notice that climbing onto the couch she looked as if she had cerebral palsy. Her toes were curled under and her foot had become a small ball. And she climbed by scooting, throwing her butt up onto the couch with her left leg, sticking her right leg straight out, and then pivoting on her hip. What was up with her right leg? I was getting worried. To make matters worse she began saying 'owie' a lot, and crying. She would grab her feet or her knees and come looking for comfort. This child has been in pain since birth and never complains. Her pain threshold is extremely high, and when she began to complain it told me I had put it off long enough.

Enter strange (divine) connection. I am a teacher with a public charter school here in CA, and have the privilege of working with many homeschooling families who allow me to also become their friend. One family lives about 10 minutes away, and has a child who is seen weekly in their home by a Physiologist. I have seen the amazing help he has given her, but been reluctant to cross the professional barrier and say yes to her offers of bringing Ellie for an appointment in their home. If I said yes, I would not have to travel to see him and navigate his busy office. But what IS a Physiologist, and do we have the money, and and and and.....

Three weeks ago I took Ellie for her first appointment. The doctor took her history and watched her play, all in the comfort of a home rather than an office. He then began her initial treatment on a massage table, which required her to lay still and comply. I figured - yeah right, this squirrely two year old? He began with her hips, explaining and allowing me to feel the changes as he went. The reason she walked that way? Her femur was out, for starters. Her hips were an inch different in height, and therefore her legs almost an inch different in length. As he did soft manipulation of her joints and bones which was similar to that of a gentle chiropractor, Ellie fell asleep on the table. What in the WORLD?

What are you DOING to her? I asked in slight mommy panic. His reply: She is without pain for the first time in an undetermined amount of time. The amount of pressure I am putting on her legs is equal to about 30 pounds, and she is still relaxed and comfortable. (I cried. - I seem to do that a lot lately.)

He then worked on her knees, saying that both were out, and looked at her feet. I could hardly believe my eyes - she let him work on her little body for 45 minutes without complaint. When he said lets take a look at her now and put her on the floor, I was eager to see the results. For the first time in her life, she walked away on flat feet. She ran, she jumped, and her body difference was amazing. I could hardly believe what I saw.

This older, grandpa-like doctor seemed equally moved by the change, and said: Kids like this are used to being in pain. They don't know what it is like to NOT. See the change? Film it, take pictures, and watch. You will know as the mama. The proof will be there.

Did we need to be careful? He laughed. Good luck holding her down. The body will heal and the ligaments will hold the bones in, it is just a matter of how long because each body is different. (what? more hope for healing and proof the body has the ability??)

Do we bring her back? Yes. He would like to see her next week to finish the upper part of her spine, because realignment of the bottom put strain on the top. And then that would most likely be all she needs unless we notice her having problems again.

With great thankfulness I brought her home, baffled at the change in just that one treatment. And I had resisted so long!

The next night Ellie had rough sleep. She woke a lot and cried like she had not in a long time, and I was worried. It was her body adjusting, and after that she slept more soundly and we saw more change for the better.

The best part? The day after her first treatment she had the easiest, and LARGEST poo I think she has ever had, without a hitch. And this is what we continue to see, her emptying herself easier. It even helped her intestines! Makes sense. Sort of. :)

Friday, November 4, 2011

Three Steps Forward, One Step....

Some time ago Ellie stopped even wanting to be at the table with us at mealtime. If she couldn't sit on my lap and feed me, she wasn't interested and it became a battle. Earlier this week during dinnertime frustration, I shouted at Daddy to go get the wooden highchair from the garage - the unused wooden highchair that I spent HOURS shopping for before we knew we had a kid who would never use it.

At one point I purchased a Stokke chair off of craigslist in order to get her at the table with the rest of us. This worked. For awhile. She uses it to color and participate...unless it involves food.

In came the wooden highchair, and she was more than obliged to take a seat. In fact, she has started wanting to sit there for breakfast as well. She has yet to actually eat anything, but spends the entire time chatting and playing with whatever is on her tray (usually stabbing it with a fork and moving it into the cupholder), but it is progress.

I'm very grateful I had never gotten around to listing the highchair on craigslist. NOW it might get some use!