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Wednesday, July 18, 2012

FOUR Safe Foods!

They say no news is good news, in this case "they" would be right!

The food list I received was only minimally helpful. I was correct in assuming that a good majority of the food in the 'least allergenic' column we had already tried and failed. Most of the food we had not tried did not seem like good trial food. I mean, how is a one year old supposed to munch on lettuce everyday with very few teeth, or how often can I expect her to eat lemons? In the end the only one on the list made sense to try: Broccoli.

And guess what?

EASY PASS! There was absolutely nothing out of the ordinary during our two week trial. Even though she was 15 months old, I still had to steam and puree it in order for her to eat it. I also had to teach her to chew and swallow. It had been four months since she had eaten anything, she had not had consistent adequate time to learn the very basics. Eventually, though, with some practice she was able to start eating it cut up into little pieces.

Next on the trial list? Well, I tossed the actual list into a drawer and decided to be adventurous. Coconut was our next trial. That may sound random, but coconut is SUCH a versatile food. Did you know they make coconut flour? And coconut Sugar? Coconut vinegar, syrup, butter, can see how this would be hugely beneficial. The tricky part was figuring out HOW to trial it. I bought a ginormous container of coconut flakes for her to munch on (which was great practice for her learning how to chew. In the beginning she just sucked on them and spit them out all over the house). With the recommendation of fellow FPIES moms, I got some Coconut Manna. It's sort of like peanut butter. It's solid when it's cool and liquid when it's warm. You can use it for many things. What I did was mix it in with her pureed broccoli to give it some flavor. I also used coconut oil to sautee her broccoli. (And that is YUMMY).

And guess what? Yup. Easy pass. Can you imagine my delight at having TWO safe foods?! Being able to have both kids sit down and actually eat together at meal time is such in an indescribable feeling.

Cauliflower was next. Since broccoli was so easy and it's so similar to broccoli, I figured (hoped) that it, too, would be an easy pass. I was correct!

One afternoon my husband got takeout from Olive Garden. We're all sitting around picnic style eating our salads and on a whim we decided to give Aurora a bite of tomato. And a bite of lettuce. And a bite of onion. Being super daring we also let her try a banana pepper (which she LOVED!). Luckily, so luckily, she did not have any problems! We then decided to try tomatoes for our next trial. She simply loves her 'maters.' And we had another easy pass.

There were, however, a few mini trials that didn't go as well. I wanted to try quinoa so she would have some sort of grain. She had 2 bites one day at lunch time and had a really rough night of sleep that night. After spending 4 months getting her insides healed, I was not willing to risk another full blown reaction, so I immediately stopped that trial. We also tried avocado and blueberries for a few days. They seemed to disrupt her sleep as well (though not as severely as the quinoa) so I pulled those, too.

So we now have broccoli, coconut, cauliflower and tomato. I would really love to have some sort of grain (fake grain anyway, buckwheat? Sorghum? Millet? Arrowroot?) to bake with. I would also love some sort of egg substitute. We have had very bad luck with fruit, which are commonly used to replace eggs when baking, so I was hesitant to go that route. There are other things I could try, such as flaxseed, but I would love something a little more versatile. After hours of research I finally decided to man up and just do an egg trial.

If she fails? SO many things that we'll have to strictly avoid at all costs for a long time. If she passes...I can bake!!!!!! She can have cookies and casseroles!

So here we are, day 4 of our egg trial. So far she's had baked omelets (baking an egg at a high enough temperature for 30 minutes bends the protein, giving a slightly less chance of a reaction). AND...I also made her a cookie. A coconut cookie! A bunch of them in fact. My sweet baby girl, at 18 months old, ate her first cookie! I'm still overjoyed at the thought!

Her first picnic with her 'bubby'...munching on her broccoli.
We have, thus far, had three nights of wonderful sleep. I'm still afraid to get my hopes up, typically she's a delayed reactor, so she could still get sick from them. But I may just make her scrambled eggs tonight. Am I crazy? Possibly. We shall see what tonight holds. Keep your fingers (and toes!) crossed that she continues to do well!

Wednesday, March 28, 2012


When we took Aurora to the GI back in January, we were told to wait 3-4 months to trial any more food. During this time we have focused on getting her to an even baseline. This, however, has been easier said than done. It seems just when we're getting her to that point, when she's finally had a good night's sleep several nights in a row, something happens. A cold, teething, ear infection, another cold, another double ear infection. We have still been unable to start on her 1 year vaccinations, she just can't seem to stay at a good baseline!!

Last week I got a call from the GI's office. She has an appointment at the end of April. Given Rosie's delayed reaction times, she wants us to start our first trial 2-3 weeks before the appointment. That means we start next week. NEXT WEEK. I am not prepared for this!! I'm still trying to get her to sleep like a regular kid! Food trials?! Inside I'm a mess. I took her back in to the pediatrician today to have her ears checked again. Her infection is still lingering, so we got some numbing drops and are staying on the antibiotics. (We can't start a trial if she's sick). We also had her lead level rechecked; at her 1 year appointment it was pretty elevated (an 8) so I have been extremely concerned about that as well. THANKFULLY it's normal!! (Insert ridiculous happy dance here).

So now I wait. Tapping my foot. Waiting for this annoying ear infection to go away and give my baby (and me!) some peace. And I'm waiting for the food trial list in the mail from the GI. It's a list that The Children's Hospital of Philadelphia (CHOP) uses for their EE (Eosinophilic Esophagitis) kids. So basically it's a big list of food, in the order we are supposed to trial. The problem (because let's face it, there's always a problem) is, even though I haven't seen it yet, I have a sneaking suspicion we have already trialed quite a few things on there. But it doesn't do anyone any good to worry about that until I get the list and know for sure. (But I'm still worrying).

My confession: I'm absolutely terrified. I just feel sick with worry. What food do we start with (Duh, I know, wait for the list!) What if she fails? What if she's in pain, again, for weeks on end? What if she KEEPS failing food? And just on and on...

BUT, I'm going to try to stay positive. She can't be allergic to EVERYTHING (can she???) It will be so incredible to have something she can eat! Right now, her special treat is an ice water in a cup, with a straw, from Sonic, so that she gets to feel included with her brother. I anxiously await the day she can actually sit at the table with him and they can eat lunch together, something that's so easy to take for granted.

Now..back to waiting..and worrying.

Friday, March 2, 2012

One Step at a Time

The next 6 months were spent focusing on food trials. Rosie had a blood test done to test for traditional allergies, which all came back negative (and the Allergist labeled her ‘Protein Intolerant’…off to find a knowledgeable GI!) At first we were doing week long food trials. Rosie was eating sweet potatoes, raspberries, blueberries, avocado, apples, peaches and some sweet potato puffs. At first she seemed fine with these things as we added them in... but slowly her good spirits started to fade. She developed a constant crusty eczema rash on her face that didn’t respond to any cream. She went from sleeping pretty consistently at night to being wide awake for hours at a time, to waking up screaming. I knew something wasn’t agreeing her, but the question was what.

The only way to find out was to pull ALL of her food. So we started back at square one with sweet potatoes. They went well for a few weeks, I had high hopes. But her eczema started to flare, then she got these cold symptoms, then she started vomiting after her meals. As soon as we pulled the food, her symptoms disappeared. And the same thing happened with white potatoes. Accidental ingestion of a serving of apples gave Rosie the worst case of crusty, oozing eczema I had seen on her.

And so it went. Food fail after food fail. Pears were our last trial and arguably the worst. I pulled them before she got to the vomiting stage, but even so, Aurora had 15 days of diapers filled with mucus and blood. This was right before her first birthday.

So by the time my Rosie turned a year old she had failed 11 foods and had nothing safe to eat, except Elecare formula. Instead of a cake for her first birthday (which was a BIG deal to me, my older son wouldn’t touch his cake at ANY of his birthdays!) I made her a giant box cake-out of hat boxes decorated with fabric and filled with toys. She LOVED it!! And seeing her chubby little face light up at the cake that was bigger than her was just overwhelming.

A few weeks after her birthday we made the trek to Kansas City again, to the new GI. She was finally formally diagnosed with FPIES. What a relief. To finally have the confirmation that I’m NOT crazy was overpowering- it was EMPOWERING. We were told to stop all food trials for 3-4 months to give her insides sufficient time to heal.

So here we sit, just waiting. Rosie is now 14 months old with still no food she can safely eat. Truth be told, it is nice to have this break of not worrying about feeding her something that will make her sick. It’s a terrible feeling, knowing you’re trying to nourish your child and instead causing them extreme pain. I do have to be very careful and watch her very closely…that cheerio her brother dropped? That piece of corn she snuck off the table? The tiny raisin she found under the couch? More damage to system, more nights of screaming and cramping.

It’s been a long year but we have learned a lot. My autistic son learned compassion and patience with his baby sister. My husband learned that doctors don’t know everything but if you keep pushing and fighting, eventually someone will listen to you. And I learned that as a mother I am equipped to face anything life throws at me. But I think we have all learned from little Rosie that no matter what you’re dealt in life, take it with a smile and keep a dance in your step because life is too sweet to take for granted.

Thursday, March 1, 2012

In the beginning....

Aurora ("Rosie") was born 3 days after her due date after a normal and uncomplicated pregnancy. She was born healthy and the only problem we had was getting her to drink her formula (Enfamil) and keep it down, which happened after about 24 hours and we were sent home.

When Rosie was around a week old she got a really bad cold (tests came back negative for RSV, although her ped felt that's what it was coming to). After a week or so she started getting better, but her congestion never went away and during the day she was never happy. All my little girl did was cry, all day, every day. After doing some research I suspected reflux, and after doing everything I could at home (smaller, more frequent feeds, keeping her upright, etc) and seeing no improvement, I took her to her doctor who put her on zantac.

Over the course of several months, we were on several different reflux meds and high doses and still nothing helped. Rosie was just miserable, I was exhausted and heartbroken that nothing I did helped was a terrible time. I spent so much time just crying with her.

Her pediatrician told me to put some rice cereal in her bottles to help with the reflux. She had already had some problems with 'regularity' so I decided to try oatmeal instead. Now mind you, Rosie has SILENT reflux, meaning she NEVER spit up. But a few hours after every bottle of oatmeal she would projectile vomit everywhere. I had used Gerber brand, which is notorious for cross contamination of dairy/soy, so we tried an organic brand. Same thing. Switched to organic Barley. Same thing. No more cereal for her.

When she was around 4 months old she was on 60mg a day of prevacid and still no change. I decided to try a product called Caracream Max. It was a buffer solution for PPI's I got from the University of Missouri. It was a Godsend. For the first time in her little life, Rosie got some relief. From her reflux. And this relief allowed me to see that something else was very wrong.

With her reflux, Rosie would scream all day and finally pass out at night and sleep halfway decently. When we got the reflux under control, she started waking up every 45 minutes at night screaming in pain. It was most definitely her stomach bothering her. Over the course of her reflux hell we had tried almost every formula there was, even the hypoallergenic ones (Nutramigen and Alimentum) where the dairy and soy proteins were broken down. This did not help her. I assumed she had MSPI (milk soy protein intolerance).

Also around this time we decided to try solids. Since she obviously didn't tolerate oats and barley, and I wanted to stay away legumes (soy family) we started with carrots. Again, a few hours after her meal, she would projectile vomit.

We ended up seeing a GI who wanted to have her scoped for EE (Eosinophilic Esophogitis). So when she was 5 months old we drove over 2 hours away for the procedure. Luckily the scope came back clear. Unfortunately, the GI didn't much care to proceed from there. He told me if she had MSPI the Alimentum formula she was on should be doing the trick. Well clearly it wasn't. So again, I was left to figure it out for myself.

I decided to put her on an elemental formula. Where as the Nutramigen and Alimentum formulas, the proteins are partially broken down for easier digestion, in an elemental formula, the proteins are completely broken down to their basic amino acids. We had a brand new baby!! For the first time I got to know my daughter and bond with her!!

I feel as if I was robbed of Aurora's infancy. She is my second child and my only little girl and my last baby. I had so looked forward to cherishing and savoring those precious moments of her being a newborn and infant and drinking her in. Instead those sweet bonding times were replaced with screaming and pain and exhaustion. I completely missed out on that. But after 6 months at least I had my little girl I could finally start to get to know, and what a spunky little thing she was.

Unfortunately, our journey was only beginning.