I Take That Back

It appears as if Ellie is not tolerating the acorn squash after all.

One hurdle out of the FPIES box is to stop relying only on how a poopy diaper looks. While I am a certified poop expert, and poop can give you some amazing insight into the body, it is not the sole answer. When dealing with an FPIES reaction, response to a food can be violent fairly quickly. Profuse vomiting and diarrhea are a pretty good sign that something is wrong. But on the path of healing, digestion slows down (like it should) and signs of problems are not just vomit and poo based.

At this point when giving Ellie a new food, we look at the her initial diapers as a sign as to whether or not she is tolerating the fiber. We want to avoid re-damaging her intestines by giving her something too rough for her insides. This is a fact for ALL foods that are not animal based. We can't give her too much or it could be a problem. Her initial exposure to acorn squash showed good poops which means her colitis is healing.

In addition to watching her diaper, we watch the rest of her. After two days the acorn squash began resulting in some wet burps which she said hurt. Regardless of what your doctor has told you, GERD is not normal (even if you are younger than one year of age). Reflux is like...mild, unsuccessful vomit. And since Ellie does not have a hernia, those wet burps meant her body was noticing the new food and the first sign things were not going as well as hoped.

We pulled the acorn squash and rotated back in zucchini to give her body a break... but not in time. The next thing to erupt was her eczema. Her usual spots quickly became cracked skin and blisters, and her personality changed to irritable and high anxiety. This means that her body is still not handling the sugars in food and the sugar is feeding a bacteria overgrowth. This in addition to a night of vomiting beef broth fat and a light colored poo showed that her body was tapped out - not enough enzymes to digest the new food or the high level of beef fat, and possible over load from all the factors.

The result: We have pulled acorn squash.

I did my tantrum crying pity party dance. And now we move on to something else. The hope I hang on to is this: she can't eat it now, but she WILL eat it later. And in the meantime she is fully nourished. But as other FPIES kids begin the healing protocols of GAPS, and I watch them quickly surpass Ellie, I head back to questioning how severe her little immune system damage is and wondering what she needs to get over the hurdle. Is it just more time? The waiting just stinks.

The Lasting Effects of FPIES

Last night we were up with Ellie all night vomiting. Again. Her not sleeping through the night has started to be a real factor in our home, and incidents such as this can throw me into a feeling of despair quite quickly. Besides being just plain tired of doing this for over two years, I am beginning to believe that her vomiting episodes send me into a sort of PTSD.

She went to bed complaining 'owie' and not wanting to lay flat, and it was somewhere around 12 am (I think maybe?) that she started vomiting. The next two hours consisted of thoughts like this:
I'm so tired.
So much vomit.
Is it the acorn squash after all?
Does she have the flu which she has never had?
I'm so behind on life.
I need sleep.
What is the matter with her?
She is going to wake up Moriah.
Is this an FPIES reaction?
Is the beef broth bad?
Jason really needs his sleep.
Is she hurting?
Did she eat something we didn't know?
I really need to get some work done.
Please, God don't let it be the acorn squash.
Why is she STILL throwing up?
I never even had a chance to get ready for bed.
She doesn't have a fever.
on and on....

By 4 a.m. I was just standing and sobbing. Ellie looked at me with her sunken eyes and said 'ok? tchu sad?', and I thought, 'holy cow woman. Get a grip!'

As I spend the day doing laundry I am able to step back and look at things a little better. And I am pretty convinced there is a fear factor that becomes engrained into every FPIES momma who has watched vomit after vomit after vomit without having answers. I can not count the amount of times I heard 'try this' or 'try that' or 'we really dont know'. And 90% of the time she reacted exactly the opposite of what they said. Thank the Lord we had a pediatric GI who said 'yes some are sensitive enough to react to soy lecithin', and an allergist who said 'yes she could be reacting to corn syrup'. Many doctors will argue those realities. When dealing with life, it is so.much.easier....to pass the buck and let Dr. Anyone tell you what to do. It is so much easier to use canned nutrition, or follow a check list, or just go with the flow of what is expected. And wait for the symptoms to go away.

Choosing anything else is hard work, and frankly quite petrifying.

But as a colleague and friend continues to remind me - nothing easy is worth it; its the hard stuff that shows our Maker. And it is no coincidence that it *always always always* happens after an event that causes us to feel blessed and uplifted, such as receiving 91 pounds of donated elk bones, or getting a safe new food for Ellie after months of waiting.

And the vomit? Too much beef fat in her bottles. Unlike people who feed themselves, Ellie is subject to whatever ratio we make regardless of what her body needs at that moment. It has been consistent that whenever we feed her a beef broth with too high of a fat content she stops digesting and we are unaware of the poor ratio until she begins projectile vomiting it all over the house.

I knew that was most likely the culprit. And today we are all recovering. But sometimes...I let fear take over.

Flash Back to Vomit

The same night I finished the post about my pity party Ellie began throwing up. She threw up all night, and is now on day two of not eating. It could be one of three things:
- We were exposed to the flu the day before. No one else is sick and that would make for one truly short incubation period.
- It was the pork she was eating. We made a giant pot of pork broth that was extremely fatty. Fat is what helps aid in digestion but there was one time before where Ellie had a throw-up-capade and it included too much beef fat. Pork also happens to be the only meat Ellie usually self-limits, which has always been a bit odd to me. So the possibility that there was too much fat, or too much pork, or a build reaction, or who-knows-what is there.
- We were giving her a new squash. She was on day three of trying a flat, round, scalloped summer squash called pattypan. It was white, skinned, and boiled like the zucchini. I figured of all squash for her to pass this one had a good chance. But perhaps not. She had already started to have a diaper rash and some other problems. I attributed it to adjustment to a new food.

She has not thrown up since yesterday morning, or after we switched her back to beef broth, beef meat, and zucchini. She is still not eating and I am watching for dehydration.

We have not had a vomit-ous episode to this extreme like this since prior to GAPS. All adjustments and trials of new foods have been lower GI and poo related. I had forgotten the pleasure of screaming baby and all of the laundry that results from so much throwing up. We were getting ready to do a second run of chicken broth, and now we have pattypan squash and pork to re-test. I am beginning to wonder if we will ever get to chicken!

Confessions of Healing

A couple of weekends ago we went camping. Ellie has shown great signs of healing as she is no longer as sensitive to things like crayons, stickers, markers, etc, and so we are letting her handle food a lot more. We are not as worried about an extreme shock reaction due to exposure or accidental ingestion (except for corn which we avoid like the plague). It also helps that when handling food she rarely gets it anywhere near her mouth, and most often wants to feed someone else.

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!

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.

More Than Poo

Did you take a picture of that poo? What did it look like? What do you think of this poo? What was the smell? Did it burn her? Did you file it? Make notes on the fridge. Was there mucous? oooooh the life of FPIES. You get the top half (vomit) and the bottom half (poop). And the joke among moms of PI kids is that we have poop portfolios. We take them to the doctor with us. We compare. We use them to guide food choices for our kids. We become obsessed!

And I am having trouble shaking the obsession. There. I said it! I wait for the poop, I fear for the poop, and when it comes out normal I do a dance! The problem? Poop is a good indicator of a lot, but not the indicator of everything. We have seen no-so-good-poops that have been die off, been a one time thing, and those that have ended in full blown FPIES. The catch seems to be the stage of healing.

We have not seen a full blown FPIES reaction since we started the broth. I believe the reason is because we don't feed her foods that she could react to, and that her intestines have begun to heal. GAPS has taken the science behind food digestion and spelled it out in a path. Jump here - go there- try this, if not then that means try that. If she has trouble because of the fiber or the sugar content of a vegetable, we immediately pull it and know that means she is not ready. The problem is, sometimes things don't give a reaction and that does not mean she is ready for them. This is where the poop test fails me.

For example, a few days ago I let Ellie carry around a larabar. Much later I realized she had been sucking on it open, and who knows for how long. I took it away, and then waited. No reflux. No poop. But she woke up screaming from a nap and then wanted to be held for about an hour. After that, she was on with life. The next poo, no signs of a thing.

Another time she cheeked a few sunflower seeds in the shell, sucking and chewing them to death. No reaction. Not a single thing. And another, she ate a sticker. Nothing.

Before GAPS I would have done a dance and said how exciting that she could tolerate and have a new food and fed her sunflower seeds. Or wondered about the sticker adhesive and if she was doing better with corn. But what I now know is that it has everything to do with the stage of healing she is in, and that she is not ready to eat those things regardless of what her poo or anything else looks like. If she cant tolerate the fiber in onion, she most certainly can not tolerate the tough to digest sunflower seed. But what we can celebrate is that she has healed enough that these small exposures do not send her reeling into a full blown FPIES episode.

The longer Ellie has been on broth, the more amazed we are. Her little intestines were so severely damaged that she has been unable to tolerate any vegetables at all. She can handle boiled and skinned zucchini as long as the seeds are small, because it does not provide too much fiber for her system. Unless we put too much in her bottle, and then we see her struggle to digest it. But that is it. We have not been able to get onion or carrot or other squash in her without problems. And then came the egg yolk. (GAPS protocol states that in severe cases that no vegetables can be tolerated, raw egg yolk should be introduced slowly after doing a sensitivity skin test) Raw egg yolk starting very small, and now up to half a teaspoon in each bottle. Without it she has unhealthy poo, and with it she had her first normal poo that we ever have seen in her whole gosh darn life. Normal poo!

The egg yolk seems to have provided those remaining nutrients to pave the way for healing, just as promised. She enjoys daily or every other day normal looking stools. (yes I did say enjoy!) So next I went back to onion. To be sure that it was the fiber she had trouble with and not the onion itself, I boiled onion into her broth and then strained it out. She did fine with the new onion flavored broth! And now it is time to try something new again. So we move forward. Very slowly. Focused on healing and not re-damaging. Gentle foods, easy to digest foods, and allowing for time.

Fearful Mommy: part 2

We began transitioning Ellie onto the home made almond milk. The allergist wanted me to transition over the period of a month, while the nutritionist wanted me to start introducing new foods right away, and those two things did not match. I decided that if the corn formula was not good for her, we needed to transition faster than a month. Her nutrition depended on it, so within 4 days we had her on 100% almond milk. It was not going well. Her intake was down dramatically, and about every 3rd or 4th bottle she was vomiting. I think that if I was on 100% almond milk, I would vomit, too.

By Wednesday of that week I began to be seriously concerned for dehydration. I couldn't tell if her clumsiness and lethargic behavior was due to reaction, die off, or just plain lack of food. It was also the first day we had to take her out of the house. We had plans to take Moriah to the SF Academy of Sciences homeschool day, and she was looking forward to it tremendously. We packed up two thermoses of hot almond milk, and headed out, just like we would do for formula.

The day went OK, though her intake was low as usual. Her daily 50-60 ounces was down to about 25, and this day was no different. Late that afternoon we headed home, and she was hungry. She quickly downed a bottle in the car, and then suddenly as we entered the foothills during rush hour traffic, she began vomiting. She projectile vomited so hard that she was having trouble breathing, and she wasn't stopping. Jason crossed four lanes of traffic to stop on the shoulder, and I barely had enough room to open the door. I jumped out, grabbed her out of her seat, and held her upside down, up the hill we were next to, as she continued to heave. This was scary enough that for the first time her 5 year old sister verbalized 'Mommy I am sad for Ellie too!'.

What in the world? I was puzzled. We cleaned up as best we could and piled back in for the remainder of the ride home. I grabbed the thermos and smelled. It was rancid. Stupid, stupid mommy! It never even occurred to me that the almond milk would store differently and needed to be refrigerated and not hot. And in my head I knew - she was so used to eating things that hurt her tummy or that tasted nasty, she just ate it. The whole bottle. 8 ounces of rancid almond milk.

By the time we got home, got cleaned up, and got the kids into bed, I was exhausted. I found myself on my knees in the bedroom once more, looking for wisdom and direction. And the mommy guilt was horrific.

We had just finished day four of only almond milk. Her body was thinning, and her skin was changing. She was groggy, clumsy and lethargic, but her eyes were brighter and less dull. The results were confusing, and no doctor could give me direction. I had to rely on my mommy instincts, what information I had been able to piece together, and pray for direction from the God who made her. At this point what I knew was that the almond milk was perhaps better than the formula, but not enough to sustain her. And I was convinced some of what I was seeing was a 'die off' effect in her intestines, making her sicker.

I made the decision to try hemp next. Following GAPs guidelines, I made a paste of the hemp protein powder I had purchased, and applied it to her wrist while she slept. I covered it with a bandaid, and went to bed.

Well I Guess We Do Persimmon

Ellie doesn't put food in her mouth. At the beginning of November she would hit the spoon, spit, sputter, and fight when we could get her to even sit in her highchair. We have consistently offered her apricot puree (her favorite safe food) over the last week or so, and she has come to want it and even ask to sit in her chair for dinner. Great progress!

Today while Nana was visiting, Elianna watched us snacking on dried persimmon slices and proceeded to do the 'uh-uh-uh-I want that' noise. Oh why not. We haven't had a reaction in quite some time. I gave her some and she licked it! Then licked it again! And into her mouth it went. She actually CHEWED on a piece for quite some time, which was a major first. How exciting! I was not planning on trialling persimmon, but oh well! At this point I will take what I can get. Persimmon is a highly nutritious fruit, and has only one other family member - the date plum. So I thought our chances would be good! But no luck. She failed.

Two hours after she woke up from her nap crying. She spent the next couple of hours occasionally crunched over in tummy pain, with red rimmed eyes, and her lethargic 'I don't feel good' personality. She woke with the noticeable bad reaction breath. Some time around 3 hours she transitioned into gurgling loud stomach and the occasional hiccups. She began chewing, and often gnawing, on everything. Esophagus pain. And then about five hours later she ended with a bloody poo. Darn. No persimmons. She will be at least 34 months old (almost 3) before she will be able to try them again.

On the positive side, the reaction was a minor one. There was no violent expelling of food, or signs of shock. The blood was minimal, as was the mucous, and the cramping seemed to stop after a few hours. That means she will heal quicker than a severe reaction. It means that I most likely wont be up all night rocking her because laying down rolls stomach acid into her throat which burns. And it also means I am more hopeful that she will not take it as license to stop eating again, going back to associating food with pain. Guess we will see tomorrow when we offer her the apricot puree.

Household Items 101

For those of you who may begin to think of the bubble I put Elianna in as a sort of personal neurosis I have contracted, let me share with you this story. It is one of many that are now my normal.

I left the newspaper sitting on the floor. Elianna grabbed it and began shredding away, and before I could even get to her, she had it in her mouth. She sucked a newspaper page. Within 15 minutes she was violently vomiting.

A quick google search showed me what I feared - newspapers are now printed with soy based ink.

The Kitchen Floor

I swept the kitchen floor three times today. Yes, I reluctantly claim OCD tendencies, but in this case I count it a God-given gift, because the health of my child depends on my kitchen floor.

Picture this: One curious toddler who has just learned how to walk and explore. She runs rather than walks, and climbs faster than the speed of light. (When I took Elianna to Stride Rite for her first 'real' shoes at 13 months old, I sat her down long enough to get out my ATM card. As I sat the card on the counter my four year old began screaming 'mommy! mommy!' I looked and Elianna was already out the door and around the corner, having escaped into the mall. holy cow!)

Picture this: That same toddler can not have even one CRUMB off of the floor, left under the table, that you accidentally missed with the broom, or else she will have flu like symptoms complete with cramping and pain, possible malnutrition, and internal shock for weeks.

We have our entire kitchen and dining area gated off. But sometimes the gates don't get shut all of the way, or sometimes I have swept and am not cooking and no one is eating...so I let her in. Shortly after getting her to baseline and beginning the journey of figuring out how to trial foods the 'right' way, I glanced across the kitchen and saw Ellie use that famous toddler pincer grasp to pick something up off the floor. I ran. I grabbed. I swept her mouth. I begged her to spit it out. Too late. It looked green. I thought it might have been a piece of spinach. Great. Green vegetables, high in protein. This might not be good.

And sure enough. Within 10 minute she was groggy and falling asleep. I knew what was coming and all I could do was watch. All FPIES mommies know. 30 minutes later she woke up screaming. This time she was feverish, and had a red splotchy rash over her whole body that looked like inflamed eczema. The crying continued. She was clearly in pain. This time there was no crazy vomiting, and we just waited for the long process of it to pass through her intestines. She would spend minutes at a time just sprawled flat on her tummy on the floor, before getting up and wanting to be held.

The cramping seemed to subside that afternoon, but it was two days of bloody poo and lethargy. She was wasted.

I hate the kitchen floor. Did I mention that today I swept it three times? I used to barely have time to sweep it at all. Now its a matter of life or death. Amazing what you suddenly have time for.

Baseline, Beautiful Baseline!

The beginning of August we started Elianna on Nutramigen AA, the amino acid based formula in the category of what the pediatric nutritionist referred to as 'liquid gold'. Within 24 hours her stools changed entirely and within 3 days she was no longer vomiting for the first time in her life. We had seen such improvement with the first switch to formula that we had no idea we could see what is referred to as 'baseline'. We were excited beyond belief. We were happy. And it was great news to provide more answers to her puzzle. End of post :)

Moving Forward

At this point we were giving Ellie peaches, nectarines and blueberries, but we had not correctly trialled them. She no longer received a spoon and would only eat things that she could feed herself. This drastically limits options at 12 months old when there are texture issues. She would not touch anything, and she was also teething (seriously inconvenient when dealing with FPIES).

We had been feeling financial strain from co-pays, formula expense, time off of work, and medical bills. Deep down I knew I needed to put her on the more expensive Elemental formula to see if there was improvement, but her intake was increasing and we were talking an average of $45-$60 a can. Something was going to have to change. We were at the cross-roads, and I was not convinced we could do it financially. I expressed my thoughts to my new mom-friends online. I was looking for any insight to get the insurance company to cover Ellie's formula, and thoughts on moving to the prescription medical grade formula. One of the mom's offered to send me 7 cans of the Elemental formula Nutramigen AA. For the full amazing story click 'here'.

For an explanation of the different formulas click 'here'.

In the meantime I took Ellie to her next GI appointment on the morning of her first birthday. He has amazing patience and fantastic listening ear. We recapped her symptoms and discussed the new ones:
-reflux since birth, even in hospital had to be addressed by nurses
-fussy and seen for colic
-snotty clogged nose since birth
-upper respiratory issues
-can not hold her facing out with arm pressure on her belly or she will vomit
-never had a completely solid stool - always diarrhea and liquid
-always had sensory focused personality - sensitive to touch, likes soft, etc. hates dirty diapers, wont eat if diaper is wet, etc
-change from breastfeeding to formula meant more alert happy baby but no change in stools
-history of crying and pain

recent changes:
-straining at time to poo even if diarrhea. acts in pain, constipation.
-stool smells acidic and burns her butt sometimes
-vomit has changed to be partially curdy
-stool often has two separate ‘stages’, a liquid stage first, and then a goopy solid portion 15+ minutes later
-horrible breath
-lots of hands in the mouth for sucking and putting things back until she gags
-no solids - periodic peach juice or smashed blueberry - yet stool stays same diarrhea
-spends the night fussy and up often after having any food
-often still just randomly chokes up stomach acid, but less projectile vomit

Our pediatric GI agreed it was time to look further. The radiologist had concern for colitis in her upper intestines, but the GI was not overly concerned. He said there would be more visible evidence in her stool (bleeding). It was time to take an internal look. He conducted a rectal scope and biopsy (happy birthday Ellie). The rectal scope looked great. Everything seemed to be in her upper intestines. He gave orders for stool sample tests and said to work on collecting them while waiting for the results of the biopsy. He recapped FPIES versus EE, and the idea that her specific problems could be in her esophagus. He mentioned a concern for sugar intolerance which he said was a secondary issue to FPIES, and why she could still be having trouble with the fruits. When I asked about Nutramigen AA (the formula being sent by the other FPIES mom) he said it was not one that he kept in the office, and the he would prefer she be on one that was designed more for a toddler nutritionally.

We left the appointment with instructions to try the elemental formula, samples of Elecare, a new reflux medicine, three large bags of stool sample kits, and instructions to wait for results of these additional tests. I took a deep breath, lots of notes, and made final preparations for Ellie's first birthday party in two days.

Hello FPIES, Goodbye Life As We Knew It

And so came and went the last week of July 2010. I spent this week moving between the stages of helplessness, frustration, and anger. I was grieving. After a couple of days reflecting on the appointment with the allergist, I was determined that my new life of advocating had begun and it was time to hit the internet for resources. I spent hours upon hours, late at night researching FPIES in hopes of determining if it was indeed the appropriate diagnosis and trying to understand what it meant. How in the world could an infant not eat protein? What exactly is food protein? The questions were limitless (and still are).

A great friend suggested I try facebook and Baby Center for resources, and I hit the jackpot. Who would have guessed? Not I! What I found were other moms desperate for answers. Some were worse than Elianna, terribly worse. The information was overwhelming and came rolling in by the encyclopedia full. These moms knew way more than the doctors. The reality of the diagnosis was setting in, as well as what it meant. I looked back at the last year and realized I had never really stopped to let it soak in. We have a special needs child. And the next week was her first birthday.

In the middle of all this I was planning a birthday party, which I soon discovered to be FPIES style and very common. No cake. No ice cream. No treats. No way to blow out a candle and no cute pictures of smashing the icing. I decided, most reluctantly, to embrace our new situation, and a 'fruit theme' it became. I poured over invitations, decorations, and gift ideas in an effort to make it a special day for her in spite of her condition. And I cried. No cake. No ice cream. No candle. I cried again.

I think this is probably a major transitional time for most FPIES families. It is when the reality hits if it hasn't already. For some reason the pediatric community sees 12 months old as being some magical age where 'real' food can be introduced and breastfeeding or formula no longer becomes as critical. Children are expected to begin eating, sitting at the table, and joining in. And they know. They want it, they reach for it, and they can't have it. This was affirmed by my visit to the allergist.

I neared the end of this reflective week. I had spent hours on my knees praying, as well as on the internet researching and making connections. My conclusion: FPIES it is, and not knowing was not acceptable. I made a return appointment for the GI where I knew someone was on my side. And I pleaded for help from a small handful of women I now 'knew' from the internet. I started a written medical journal for Ellie, going back through the last year and documented what I could. I wrote a summary of symptoms and changes, and then wrote a list of recent changes and current symptoms. What became clear is that she was not well. We had seen improvement with the change to Nutramigen Lipil, but we had not seen what I now know is called 'baseline'. She refused food because it meant pain, and we could not move forward. I had to make a plan because I could not sit and wait for the allergist who had never called. Life as we knew it must change whether we liked it or not - and I guarantee, none of us liked it. Now if we could just figure out how to move forward.

That Fateful Appointment

Nearing the end of June we headed back to the GI doctor for Ellie's blood test results and hopefully some answers. What we discussed:
Only on Nutramigen Lipil. She licks foods but most of the time will not eat them and is becoming more and more disinterested. Trigger foods result in vomiting and non-bloody diarrhea and then resolves. Foods tried included sweet potato, rice, banana, wheat products, barley, butternut squash.

I was unable to tell him if she cried more or less at any point because she had cried since birth with no visible pattern. She also slept at odd intervals and was completely unable to get on a schedule, so I could not address that as well. On occasion she did have low grade fevers that appeared at the same time as food exposure.

Blood test results showed mostly normal but some things on the low side. She showed negative to celiacs, and all IgE tests (RAST) came back negative except for a slight peanut. (I found out later that these tests were not very accurate anyway since she has to have eaten the foods for her blood to respond).

He disappeared to discuss with the pediatric nutritionist and then returned. "There is this very rare condition..." he began... "we have only seen a few"...."less than 3% of children"...."FPIES"...."I want her to see an allergist for a second opinion"...."no way to diagnose except by symptoms and process of eliminating anything else it could be"...."we dont really know"...."not a lot of info"...."there is another option for formula we should try"...."stop giving her foods for now"...."establish a plan with the nutritionist"..."here is a copy of the most recent study done"...

WHAT? WHAT was he talking about? Less than how many kids? They don't KNOW anything? This was not what I had wanted to hear. June. 2010. My Ellie is 10 months old and nearing her first birthday. No WAY. Something called FPIES? Food protein? She cant have protein? Rice has protein? So do green vegetables? All food? I just did a lot of nodding and repeating. The plan? Start with the least allergic foods with the lowest levels of protein, preferably all organic. Start with apples, apricots, plums. Nothing else. Keep with the Nutramigen Lipil. Soon she will be a year and we can try other options. And here is a referral to the allergist.

Something Still Not Quite Right

Ellie's continual discomfort and vomiting made me uneasy. I should take the time to mention that we are not talking spit up, or normal baby vomit. We are talking projectile, curdled, and large quantities. Doctors said it should get better when she started solids because it would weigh things down...such as stomach acid. Hmm. I began to research the introduction of solid foods and discovered that other countries don't share the perspective we have here about delaying foods, and in fact, the American Association of Pediatrics is considering revising their standpoint. This discovered, coupled with wanting to stop her vomiting and pain, and with the need for sleep, I dove into the introduction of solids for Elianna.

I did not take good notes during this phase because I had no idea there was a need. I grabbed all the traditional first foods and went for it, not expecting to hit a curve ball. We tried, rice cereal, oat cereal, sweet potatoes, avocado. She received the spoon well at the beginning, but after one or two tries of any food she would clamp her mouth shut and refuse. And the vomiting! It got worse and worse. For about 4 - 6 weeks I attempted to get some food into Elianna. Her stool became horribly green and disgusting with a bizarre acidic smell. Her butt burned within minutes if I didnt change her diaper right away, and she began throwing up within minutes of eating. About 6 weeks into trying food I attempted banana. Like most of the other foods, the first one or two times seemed ok. But by about the third try she was vomiting. Banana?! Really?? At this point I knew I must be nuts. How could any baby be vomiting, crying, and screaming after eating sweet potatoes, rice cereal, or banana?? Something was wrong.

I decided that maybe she had celiacs. I gave her oat cereal instead. Nothing worked! I headed back to the GI yet again and this time I expressed my frustration and concern. I want her tested for Celiacs, I declared. The GI agreed, saying that he had doubt and that we needed to start aggressively eliminating what could be wrong. Keep her on the Nutramigen Lipil, and do some tests.

(Note: She continued to gain weight and grow, staying above the 90th percentile at all times. This alone baffled the doctors and I believe continues to be a struggle for us. Oddly, her outer appearance does not match that of her inner, so 'proving' she is sick has become an issue at times. I felt there were small signs such as sunken, dark eyes and puffy body features but nothing that got attention. But more on that later)

After our appointment with the GI we headed down to the lab where vial after vial of blood was drawn from Elianna. I couldn't believe the amount they had to take!

Our fantastic GI spent much time communicating with me over email and phone. And back in to his office to discuss the results.

And the Journey Continues

November 2009 through March/April of 2010 we continued with the pattern we had established, no questions asked. No more visible blood in Ellie's stool, and she continued to grow and measure in the 90 percentile. Vomiting continued, as did stool problems, but overall we didn't question it. The crying was less, the extreme pain seemed to be gone, and we just assumed what we had left was 'personality'. This view was encouraged by doctors, and I just resigned myself to having no clothing without stains.

We were instructed to delay the introduction of solids, starting at 6 months with rice cereal, and adding vegetables and fruits. Sounded pretty standard. At 8 or 9 months we could introduce cooked noodles, lean meats, and beans. The restrictions were: no milk or soy until after 1 year, no egg or tree nuts until after 2 years, and no peanuts, fish, or shellfish until after 3 years. "By postponing diet the introduction of food allergens, the development of food hypersensitivity is delayed in high-risk infants but this does not prevent the disorder". That final statement made me think that there was no hurry to get onto solids, so I figured we would wait until a year to introduce most. By April and 8 months of age, Elianna was still not sleeping through the night. She woke frequently, cried lots, ate a LOT of formula, and was a chubby, roley-poly baby. I decided that I had better introduce some food to help her sleep at night and make her feel more full.

I had no idea that this would quickly start our new adventure and change our lives forever.

The First Diagnosis

The next couple weeks we were back and forth between the pediatrician and the GI several times. I was pleased at the amount of communication that went on between the two. I went on a drastic elimination diet in an attempt to see improvement in her vomiting and diarrhea. I had already eliminated dairy and soy, and over the next couple weeks I had eliminated all of the top allergens as well, and was down to eating mostly vegetables. There was no improvement in Elianna. Diapers were less bright red, but she was still extremely lethargic, crying and vomiting a lot, and not meeting milestones. We had received the diagnosis of milk/soy protein intolerance. (*note: they now know that the soy protein is extremely similar in structure to the diary protein, thus dairy protein issues should include the elimination of soy as well) The GI had sent us home with a can of over the counter Nutramigen Lipil, and encouraged me to give it a shot. I took one look at the back of the can and cried. How could these ingredients be better for her than breast milk? It made no sense. And the price tag on this formula was going to be a hardship.

I felt affirmed when the pediatrician thought it bizarre to tell me to stop EBF, and was on the phone again with the GI. The result was the pediatrician telling me that I had to eat, and that she was only getting worse. Sometime around 12 weeks Elianna filled her diaper yet again with blood, and I was on the phone with the GI to tell them there was no improvement with my elimination diet. The nurse called back and very firmly informed me that if I did not start the formula THAT night, Elianna would be too anemic and must be hospitalized. I became angry as she said to me, "I know this sounds counter-intuitive, and makes no sense, but you need to trust us on this one. You have to start her tonight." I hung up the phone and cried. I made a bottle, handed it to Jason, and went for a walk.

When I returned, the house was quiet, and Elianna was on the floor in the living room. She had drank the entire bottle. I walked over and took a cautious look. She was moving, smiling, and extremely active. So active that I immediately thought she was having an adverse reaction to the formula and was having some type of seizure. In my panic, Jason put his arm around me and said "honey, look at her. She is happy after eating, she is smiling, and she is active like we have never seen her before". He was right! I did not even recognize her because she was not vomiting, screaming in pain, or laying like a lump. Amazing!

Within 48 hours her diapers no longer included visible blood, and her behavior improved (less fussiness and signs of pain). Her diapers resembled that of an EBF baby, so to me things were looking fantastic. The GI had been correct, and she could not even digest the protein structure in my breast milk. We had found an answer (for now). Hallelujah!

(The insurance company refused to pay for her formula because she had not been hospitalized, and so we began footing the expense which ranged between $500 - $800 a month to feed her.)

Once Upon A Time...

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'. She was quiet and slept a lot. I found it interesting that I seemed to have had a second mellow baby. Breastfeeding was not going as well as it had the first time because she was having trouble latching and seemed to choke a lot, but the specialists reassured me that this would get better as she learned and my milk leveled out.

Home we went. Ellie continued to throw up, and it worsened. Half of her feedings ended up on the floor, my clothes, or whatever was around her. And the crying started. Her sleep was irregular, and there were times where there was no consoling her. Advice from friends and doctors told me that she was colicky, and that it was sensory. My mission was to figure out what was triggering her, what time of the day/night it was at it's worst, and in the meantime I hardly ever put her down. The pediatrician told me that there were now studies that showed infants who proved colicky had specific personality traits when they got older, and to brace myself for a less-compliant child than my first. She was just a more vocal and particular child.

Her sensory preferences were obvious. She wanted to sleep a specific way, with no light at all, and a specific blanket draped a particular way over her face. In fact, we have video of her at only a few hours old being wheeled into my hospital room while rubbing her cheek against the hospital blanket in the same way. I began the task of figuring out this little person's likes and dislikes in the hope of establishing a sleeping and eating pattern. A couple of months into charting the day I gave that up. Clearly she would not be a scheduled baby, and clearly this was personality. Right?

I wondered. I could not help but think that babies that cried all of the time truly had something going on inside of them, and that excusing it as personality was not acceptable to me. Next came the standard comments from other moms about attachment parenting versus whatever the other is called. My first born had wanted her space, but enjoyed snuggling. Ellie never seemed happy, but wanted to eat all the time and stopped crying most of the time when she was held. She sounded broken hearted if you denied her, and she was loud! Within the first couple of weeks my four year old asked if we could exchange her for a baby that didn't cry as much.

In the meantime we were in the doctor's office a lot, already. She was a squirmy baby who never stayed swaddled, and about 2 weeks old her umbilical cord prematurely tore off when it stuck to a swaddle blanket. It bled quite a bit and sent me into a panic. After a week it was goopy and still bleeding. It wasn't sealing off. The pediatrician said that it could herniate if left untreated, so we treated it with liquid nitrogen which turned it gray and icky.

At this point things get a little fuzzy, but I know that around 10 weeks old things changed. I started to notice her diapers were looking a little pink (blood) and that was unsettling. There was continued talk about my oversupply of milk and that it can cause digestive problems and the green funky poo that we had been seeing. And then one weekend we were at the mall. I went out of the store to change Ellie's diapers and when I opened it up I was horrified. It looked as if someone had dumped a melted red Popsicle into her diaper. I ripped off the outer diaper liner to see the absorbing material underneath. Yes! red! In a panic I called the doctors office and proceeded to go through half an hour of crazy conversations with advice nurses and determining if I needed to take her to the emergency room. No, she was not unconscious or passing large amounts. So it was decided I could wait until Monday.

Monday we headed in to the doctor, and the journey began. Meckles? Breastfeeding? Condition where the bowels kink and then straighten on their own? Our fantastic pediatrician wanted to be sure, and calmly tried to reassure me. Off to the pediatric gastroenterologist we went. And she wasnt even three months old.