On the Move

Yesterday we met with Ellie's new pediatric G.I.  She has not had an established G.I. for over a year, and in order to get her feeding therapy services we had to get one on board with the team. The appointment went well, but was the first time in a long time that I had to give her entire history from a G.I. perspective.  He was great, young, new, and honest.  He said he has never treated a patient as severe as Ellie so he did not have a lot of wisdom to share.  That actually caught me by surprise.  Not that Ellie is 'so severe', since I have heard that far and wide from every specialist we have seen.  What was surprising was the questions he asked and the learning he wanted to do.  That was refreshing. I told him I appreciated his telling me there we NO procedures he would recommend at this time; that alone is very wise.

I was also jarred back into thinking of Ellie and her progress, because most days I see a little girl who is no longer sick. We are in a new place where instead of fighting for answers, doctors see the improvement she has made and ask me HOW.  I love that.  I love that when they ask me 'what DOES she eat?' I have to stop and think and sometimes forget something.  What a change from times past!

We have spent our fair share of time waiting. GAPS is a very individual diet, helping to peel back layers and reveal core issues that are preventing healing.  We have played that game for 20 months now.  For Ellie, much of the time has been spent just waiting for her body to heal.  The rest has been dealing with individual healing hurdles.  5 steps forward, 3 steps back......2 steps forward, 1 step back.....it has felt like a crawl.  With prayer paving the way, the push for foods has begun.

It has been so long since Ellie has had an FPIES reaction that it is beginning to feel like another lifetime.  She still has allergic response to corn and I suspect that may be the situation for many months (or years) to come.  But this week we had a major success.  This week she ate her first pre-GAPS FPIES food fail.

Ellie failed so many foods pre-GAPS, and reacted to so many foods at the start of GAPS, that we have reached a point where we can no longer avoid them all.  This has been an amazing turn of events.  This has been the place we have been waiting for. This could have been ugly, but instead has shown that the recommended 2 years on GAPS is more than just a guess Dr. NCM has thrown out there.  We are nearing 2 years and we are finally moving forward.  From a stand still, to a crawl, we are getting ready to run!

Ellie has now added virgin coconut oil to her diet.  Up until now she could only tolerate refined.

Ellie is now eating fresh carrot juice.  Up until now she could not drink even one drop without the sugar causing her body bacteria to explode.

Ellie is now eating fresh apple juice.  Ellie WAS FPIES to apples.

Did you catch that?  WAS.

For the first time we can step back and say...wait. WAIT! Was FPIES.

For the first time we can actually say FPIES will someday be behind us.

For the first time we can say that FPIES, EGID, leaky gut, seizures, and all of her complications will eventually be gone.

Today Ellie is trying her next new food.  Today is day TWO of homemade goat ghee.  Ghee is clarified butter. Ghee is DAIRY.  And dairy has been banned from the house for over 2 years.

So far, so good.  She is on the move.  She is doing great.  We are SO incredibly thankful.  I can hardly wait to try her next new foods.  Stay tuned!

Forever Guessing

While we have more answers after GAPS than we do prior, there are still some times we have to just shrug and move on. Sometimes we just have no idea because there are too many factors. This time we are forced to stop and figure it out.

Last week Ellie had a fever and developed respiratory problems. She is still recovering. I blamed the pork. Then I thought it might be the elk broth which I had assumed was safe. Then her older sister got croup, and the age old question 'is this her first confirmed virus' surfaced again.

Investigation revealed the elk came from a ranch where they were supplemented with hay over the summer by staff. Stupid hay. Hay is an undefined combination of grasses used to feed animals. Hay is not a specific type of grass. Hay could be corn, or who knows what else. Stupid hay.

So now we wait for the symptoms to go away, and try to make a decision: retry the Elk or move on. Retry Elk and she fails shows us it was the elk, and will free up quite a bit of freezer space. Retry Elk and pass, and she has had her first confirmed virus, an amazing reassurance that her immune system is healing.

Normally the decision is not that hard. One wonderful thing about GAPS is that we generally don't talk in terms of food fails anymore. Instead, we say she isn't ready...YET. This time the decision feels different because she is begging for food and I want to get a move on. And we don't normally have hard respiratory reactions like this. In fact, this is the first since starting GAPS, which petrifies me that corn is indeed the culprit.

Corn. The one thing that may never go away.

Hold Fast

It has been quite the week+ for us as we attempt to help Ellie's body get the fungus back under control. The equivalent of about 5 ounces of pureed acorn squash over two days time created such an incredible bout of eczema we are still amazed. It has taken me until now to get myself under control as well.

There really is no way for me to express the let down that occurred when what I thought was a new safe food for her was actually not safe at all. After 9 months of such a restricted diet on GAPS I thought for sure the God of the universe would be kind enough to show her progress with acorn squash, and rejoiced at what I thought was an answer to prayer. As I watch other FPIES-kids-gone-GAPS pass up Ellie in the realm of foods and healing, it is easy to get caught up in questioning and wondering what 'makes her different'. Why in the world I always fall back to that is beyond me- Except there is no secret in (always) admitting that I would be the first Israelite back on the train to Egypt. I would be the first to shout: things are bumpy! this is not what I had planned! must not be God! load up - back we go! get your mud brick making gloves on folks!

Alas, I spent the last week sobbing in our huge green rocker while Ellie cried 'owie owie owie' all night long. I spent the week kicking the dirt, and throwing up my hands, and comparing our progress with everyone around. I spent the week re-reading books, and medical articles, and having zippo grace for my family, friends, and even that stranger at Target. Most often I was just standing somewhere and crying. This normal SUCKS. I even busted out my Bible and read through Job, just to try and get some perspective.

It is incredibly amazing to me how I can float through life in the middle of blessings, surrounded by love and being held so obviously in God's hand while He meets Ellie's (and the family's) every need, and yet when things get out of kilter and tough, all of that goes to the side and BAM-O! It's like a Batman comic book where I feel as if SPAT! CRACK! JAM! I'm losing the battle against an evil villain.

Oh wait. I was.

Yesterday I was not asking for a conversation when I finally heard God. He asked me about my altar. And He reminded me that my children are not my own. And as I was yelling "All aboard for Egypt!", He so faithfully stepped in and said "HEY! What makes you think that YOU are in control here and that YOU can see everything? At what point did you decide you love her more than I do? Or that regardless of all circumstances surrounding her in this damaged and decaying world, I was not in control? Hold FAST."

Hold Fast. Over the last two years I have often heard those words repeat in my head. They actually come from a song by Mercy Me where the chorus says: Hold fast, help is on the way, hold fast, He's come to save the day.

And as I asked forgiveness and said thank you for grace, I was reminded of this verse (Psalm 121):

I lift my eyes up to the hills. Where does my help come from? My help comes from the Lord, maker of heaven and earth.

Casting Crowns has done an amazing job of capturing this verse in a song which always brings me to my knees. (video HERE)

But enough for my pity party. Hold fast, friends. He is always on His way. Can't you see Him?

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.

Gettin A Move On

It has been 8 months on GAPS intro stage 1. Ellie has lived on meat, broth, and zucchini for 8 months. She has grown, thrived, and never been healthier. Any person can live on a diet like this forever. But there is no way I want her stuck there. There have been so many times I have thought there must be something else. GAPS got her started, but what is the hang up? Back to my knees, and the science, and my support system, and we keep plugging forward. I keep hearing of other GAPS patients who take 2 full years before really seeing large jumps in healing and progress. Ellie is on the extreme side of that, so 2 years may even be an unrealistic goal. I tell myself that 2 years for a lifetime of eating is a drop in the bucket. But that is not an easy goal to hang on to.

And then this week something changed. By the grace of God I got another glimpse into her system when she ate some wretched dried green peas. Those peas tore her up and I prayed every night that it would not set us back months. And it didn't. Which was amazing in itself. Once she was symptom free we decided it was time to retry chicken broth. Two days before her eczema on her legs erupted into a nasty painful mess that looks more like hives. We recently stopped her nystatin because she reached the six month mark, but I have no idea if this is the cause. Should we wait?

GAPS progress is largely individual and based on the healing that has taken place. It is completely possible that the small amount of fiber Ellie is getting in her zucchini is keeping her from healing, and we may have to pull it. When I got that word from Dr. Natasha, I cried. 8 months of broth and healing and that? And then the pea incident.

Back on my knees I went. Pull the zucchini? Move forward? Once the basis of healing has begun in a GAPS patient, foods should be tolerated easier and at a 'quicker' pace. Other FPIES kids have moved much faster than Ellie. This time I feel it is different. I may be right, I may be wrong, but there are some changes that show me it is time to push forward.

Three days ago we started our third attempt at chicken broth, armed with lots of fat from the feet and added lamb tallow. These chickens have been fed grain, and guess what? SHE DID GREAT! This pass makes me want to do a dance with excitement. I am feeling the green light. It feels scarey and exciting, but I am hopeful at another milestone of feeding Ellie.

So what is next? We begin with one drop of fresh carrot juice a day. Carrot juice has anti-fungal properties and will help with candida which she battles. Carrot, butternut, and pumpkin are on the list. Maybe even onion. And I am thinking it is time for a trip back to the feeding specialist to find help getting her off the bottle and onto whatever is next.

Here we go Ellie! Here we go FINALLY gettin' a move on!

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!

Stuck

Next up? Cauliflower. No enzymes for digestion required.

What resulted was one extremely bloated, belly distended, and uncomfortable Ellie. Was it the nystatin? Die off? Or the cauliflower?

Back to only zucchini for a few days and the belly lessened. Adding in the cauliflower brought the same result - her 'innie' became an 'outie' from its stretching. Poor baby!

Back to just zucchini.

Now what? Broccoli. No enzymes required for digestion, but a guarantee bloated belly. Let's skip that one.

Since she appeared to be stuck in the vegetable world, I decided to go back to the original instructions given which included trying fermented cod liver oil. It is an animal product so I figured we had a better chance at this than vegetables, and it would increase the vitamins she was getting.

Day 1: 1 drop of fermented cod liver oil in one morning bottle. Some night time fussiness.

Day 2: 1 drop of fermented cod liver oil in one morning bottle. And she stopped pooping, and started screaming. And screaming. All night. And the reflux, and the gas, ...and...and....and....a major FAIL.

The directions I received was to try one drop per day for 2-3 days to see if she could tolerate it. Clearly she could not.

I wanted to join in the screaming. We were stuck. Now what? Eggs? We now have soy and corn free eggs in the fridge, and two home patch tests have shown no reaction. I chickened out. No pun intended.

Instead I added yellow crookneck squash to her zucchini. And on day two she seems to be doing just fine. WHEW. So summer squash is where we stay. For now.

Patience mama. Patience. Baby steps. Don't forget the progress already made. Summer squash is a great place to be.

First Fail After the Broth

I am calling it quits on carrots. I had a funny feeling from the beginning, but pushed through because I truly wanted these to be a pass for Ellie. But no luck. Constipation can also be a sign of 'allergic' reaction, and after starting carrots the first time Ellie stopped her now regular stool. So I stopped, and then restarted, and this second time it took three days before we were seeing symptoms: ear drainage, raspy nose/chest, eczema flare, urping (wet burps), very fussy nights, and no stool.

The good news is it was a less severe reaction and took much longer to be sure. I believe this to be a sign of FPIES healing. Hooray! The bad news is now that she is on the road to healing, I think this might be one of those foods she may never be able to have. But we will shelve it for now, and come back to it in about 32 months.

The only remaining factor is that we still have not received the test results for sugar intolerance from her biopsy. This test is taking so long! Carrots are extremely high in sugar content, so we will see if those test results shed some light on this fail.

I am hopeful that she will recover quickly, and curious how long it will actually take to do so. Back to zucchini and onions, which is already great progress from where we were a short time ago!

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!

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.

After the Bump From Baseline

The kitchen floor and newspaper incidents left us off of baseline for awhile. Elianna had to do some healing. In the meantime I found the Miralax that the doctor prescribed for her constipation. I mulled over this decision for hours. I researched and I read. The doctor promised at every turn that there is no way she could react to this; it is a chemical made in the lab that is not absorbed and passes straight through the intestines. However, when I looked at the Miralax website there was a huge warning about not using it if you were allergic. huh? Plus, there have been absolutely NO tests on children, yet it is the number one pediatric prescribed laxative right now in the U.S.

I put serious thought into this Miralax use, and my mommy instict said not to do it. I had read a homeopathic remedy for constipation was Magnesium, and so I bought pure powdered capsules at the health food store and added minuscule amounts to her bottle one time a day. This helped her to go, and gave her some diarrhea. I figured I had just gave her too much. When I told the pediatric nutritionist he advised against it at all because it could cause her to loose too much nutrients, and pushed me back towards the Miralax. I didn't want to. But I did it. And I regretted it.

I don't know if she had a full blown reaction, or if she was just cramping from the medication and then sleeping from the exhausting of those cramps and constipation pain. It doesn't really matter. All that matters was that she had SOME kind of reaction to it, and I will NOT be giving it to her again.

I told the pediatric GI and he gave me the same look he gave me when I said she vomited after eating the newspaper. It was that 'now I think we are dealing with crazy mom syndrome' look. Perhaps it was just me being sensitive and looking for affirmation that I am NOT crazy.

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.

Meeting the Allergist

My feeling of urgency was not reciprocated by the allergist referral process. It took several weeks to actually get an appointment and get in to see the allergist we were referred to. I was extremely nervous, and had no idea that this would begin my journey of researching and advocating. About one month later we headed to our appointment with the allergist, and it did not go as I had hoped.

It was a very difficult appointment. We waited an extensive amount of time in the waiting room, and then even longer in the patient room. When the doctor finally came in he barely stood still while talking and then exited the room in a hurry. He definitely hit one of my pet peeves - giving the impression that I had to talk fast enough to get it all in before he was gone or had decided not to listen anymore. He stood and read Ellie's file while in the room with us and asked questions about the GI's notes which(incorrectly)said that banana and rice were ok. He said this didn't make sense and he needed to talk to the G.I. and declared that we were going to do prick testing.

I at least saw this coming, because I have a history of IgE allergies and some severe food allergies. I have had my share of prick testing.

My response to the allergist was: I am familiar with prick testing as I have many of my own severe IgE allergies. 20 years ago when they drew my blood and sent it to UCD to study I was told they did not know much about food allergies and that prick testing was not helpful. I assume they know more now?

His response to me: Hmm. No. Not really. There is a lot we don't know and not much has changed in the last 20 years. The nurse will be in in a minute.

And out he went. Nurse came in. Prick testing completed and Ellie reacted to NOTHING. Not a single one. (tested for: milk, almond, cod, soy, rye, oats, barley, white potato, chicken, apple and the control)

Back in came the allergist. He wants to do patch testing next to see if we can find any leads. He needs to talk to the G.I. He will communicate with me over email or phone. He recommends we wait until she is a year old before proceeding with anything. He looked at the list from the G.I. and pediatric nutritionist. Do not trial apples. Pit fruits only. Start with peaches, apricots, nectarines. He gave me a handout on allergies (IgE) and allergic rhinitis, a handout on dietary restrictions for control of gastroesophogeal reflux that had no helpful information, and a handout with instructions for APT (patch testing).

I was extremely overwhelmed and over saturated. The appointment seemed scattered, rushed, and did not provide any helpful information or answers. The word 'FPIES' was never said, nor a diagnosis of any kind. Continue Nutramigen Lipil formula, wait until she is a year, try pit fruits first, and wait to hear from him.

As he ran out of the patient room we were sitting in I stopped him and asked about the insurance company paying for the formula if she has a diagnosis. He laughed a most irritating scoff, and said 'Have you been watching the news? Insurance wont pay for anything right now.' And walked off.

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.