Day 2 & 3

So far bananas are going well... Except that she despises eating them! How sad! The one and only food she can eat goes down like bad medicine. I hate "forcing" her to eat it, but I'd hate even more to lose all the ground we've made by having to discontinue the trial. I just hope her taste buds have a change of heart in the next few days...

So Far So Good

We're going on six hours since Clairey ingested her first 1/4ish teaspoon of bananas. Aside from a few more "gas bubble hiccups" (I wouldn't use the word "burp" to describe the sound) than usual, she was a very happy little girl all afternoon. Tomorrow we shoot for a whole 1/2 teaspoon of bananas... Cautiously optimistic :)

The Waiting Game

I gave Claire her first taste of bananas about 70 minutes ago. It was only a 1/4 teaspoon, but she didn't seem like a fan. I am forcing myself to believe that her reaction means her taste buds have never experienced anything so sweet, and not that they instantly recognize something that will make her sick. Right now she is sleeping soundly in her crib. I hope that the next hour or two pass quickly. It's the first time in her life that I've wished and wished for time to go faster. No matter how much you mentally prepare for something, I doubt you can ever reach emotional preparedness.

Everything I've ever given her to eat, her body has rejected. Today I prayed that bananas would be the first of infinite foods that will make her body healthy, strong and happy. I guess we'll know soon. Then we'll try it all over again tomorrow.

Going Bananas

Just when I was getting cozy with the idea that our food trials were as ways off, I got a call from our pediatrician...

Dr. Boyce called to go over some results of Claire's labwork... Or lack thereof. Apparently, the celiac test was never performed because the blood sample was "too fatty". My heart stopped a second. The nurse at the allergist's office said everything was normal... Apparently, everything ELSE was normal. Dr. Boyce believes that (based on my description of our dramatic blood draw), because they stuck Claire in a particularly chubby part of her little arm, they extracted some fat in addition to the blood. While I like where his head is at, a "contaminated" sample is just one more thing that strays from "the norm". Nothing is simple... He didn't order a second celiac test because there is nothing in her medical history that would lead him to suspect that she has celiac disease. Namely, she's never eaten gluten and, therefore, never reacted to it. In conclusion, we decided to bring all this up with Dr. Liekly at Riley Children's to let him decide.

As soon as we established a likely cause for the "fatty" blood draw, I unloaded my list of questions on him. I know that he isn't an allergist and his areas of expertise are much more broad and much less specific in the allergy department, but I appreciated him listening-- even if I didn't totally agree with everything he said. It's just further proof that you can't take everything the doctor says at face value. We are our children's advocate, and we have to educate ourselves as such.

I told him that I was waiting to try solids with Claire until her appointment with Dr. Liekly, the day before her 7 monthiversary. I also told him that I was concerned that she wasn't getting all the nutrients that a baby of her age should be getting. Her appetite continues to increase and I'm worried that our exclusive breastfeeding isn't going to satisfy her much longer. He encouraged me to start solids now... I know that nothing is going to change between now and February 9th as far as my own fear goes. I also know that it's very possible that the ATOPY testing might be a ways off. Is it fair for me to keep her on a solid food strike simply because I can't bare the thought of sending her into another episode? For all I know, our triggers have already revealed themselves and the rest of the food world is her oyster... I guess we'll find out tomorrow...or the day after, or the day after that... It looks like we're starting with bananas tomorrow--that is, if I don't go totally bananas first. Breath....

On The Books

We had a trying start to the day, but it picked up a little as the morning progressed. I learned by the fact that I was the one and only car in the drop off line at my son's "school" (Moms Day Out) that all schools in the county were closed due to icy roads. That made sense considering the asphalt was like an ice skating rink and my car was sliding down the driveway with the emergency break on. We sought refuge at my girlfriend's house for a play date and the morning started taking a turn for the better. I got a phone call from my pediatrician's office that all of Claire's pertinent medical records had been faxed to the pediatric allergist at Riley Children's. We got an appointment--for February 23rd. Grrr... That's a month from now. Once I recovered from my initial disappointment, I decided that I'm not in this to make friends. I called Riley and begged, bargained and pleaded from an earlier date. I think she realized that I wasn't going to hang up the phone until I got what I wanted and she pulled some strings to get us in February 9th at 10am. While I'm not completely satisfied, it's much better than the alternative. Maybe a special delivery of chocolate chip cookies would land us an appointment in January... :)

Score!

I just got off the phone with our allergist's office and they delivered a bit of GREAT news! Seems as though our little ladybug's blood work came back completely NORMAL! I am ELATED! No celiac, no anemia, no whatever-else-they-tested :) Also encouraging, it looks like they are actually going to release their death grip on Clairey's medical files and fax them over to Riley Children's Hospital without me having to jump through hoops of fire :) It remains to be seen, but the prospect is reassuring. We're off to a running start!

Team Clairey

I am pleased to announce that Elementary School children aren't the only people to observe Martin Luther King Day. Apparently, all allergists in the state of Indiana also take the day to pay their respects. It was a good reminder for my impatient self that there is more happening in the world besides our FPIES...

While I was on an involuntary recess from assembling "Team Clairey" (that's my new term for all of the family, friends, nurses and doctors that are working towards seeing Claire through this disease), I tried my hand at my new culinary cuisine... I feel like I'm getting back to my tasty California roots! In one short week I've gone from health conscious to health NUT! Yesterday, I purchased an industrial size bag of quinoa and today I picked up a couple of boxes of almond milk. Judging by the fact that grocery shopping today took 50% longer than our past trips, excluding dairy, rice and oats from our pantry and fridge is just as hard as it sounds. I have confidence that it will get easier though. On another note, my new dietary regime has given me the unexpected perk of seeing the scale hit numbers I haven't seen since college. Apparently I was single-handedly keeping the dairy industry in business :)

I agree with our allergist for erring on the side of caution by instituting this elimination diet, though I believe Claire would be fine even if he didn't. For me, the real reason for cutting everything out, cold turkey, is more of a tribute to Claire. I want for her to see that it is very possible for us to live a tasty, healthy life, even with limitations. It might be a little over her head, but I like to think she understands :)

One more small development... Thanks to one of my incredible mentors, Cindy, a nurse practitioner, educator and mom of four, I have been in contact with a renowned allergist with Riley Children's Hospital here in Indianapolis. We are trying to work out the kinks of passing along medical records from our first allergist and/or pediatrician (what a challenge!) so that we can get a second opinion. I have no doubts that our original diagnosis is correct, but I am hoping to rack the brain of another expert so that we can all collaborate and put together the most comprehensible game plan possible. Come on medical records!!

Hopeful

I feel so lucky by the response that I have gotten from this blog so far!

Thank you to all of the moms that have reached out with helpful advice and encouragement. I can't tell you how hopeful it makes me when I hear about the little and BIG successes of other families who are further down this road. Please don't stop sharing your tips... I feel like we're in a brief "grace period" with Claire before we roll up our sleeves and test some foods. I want a PhD in Nutrition by the time we get started :)

I got a response from Dr. Sicherer from Mt. Sinai Hospital in New York. While he couldn't give medical advice via email, he did point me in a direction to find additional specialists with interests with food allergies in our area. He's also written a book, “Understanding and managing your child’s food allergies” with a section on FPIES. I hope Amazon gets it here in a hurry :) It might seem small, but I feel like these little breakthroughs bring us closer to good news.

As for the end of our "grace period", I still have to do a bit more research and seek out a GI doctor at Riley Children's and talk to our allergist about the ATOPY patch test before I can call it over. Dr. Sicherer didn't give me quite the answer that I was hoping for, while another medical journal article seemed more promising. Does anyone have any thoughts or positive/negative experiences with the ATOPY test?

Starting at the Beginning

I've found that, for better or for worse, "writing" my thoughts proves cathartic. This blog is for myself, as well as any of our family or friends who may be invested in our struggles with FPIES. It's also for anyone else who may be going through this rare and scary disease with a child.

We learned of Claire's diagnosis two days ago, just three days after her 6-monthiversary. I hope that this blog will have plenty of happy and triumphant stories to share, though I am aware that we have a long road ahead. I know that every child with FPIES fights a slightly different battle and every doctor has a little something different to say. I hope we can start a candid discussion so that we can ALL find an end quickly.

That said, here are some links to the very beginning of my research...
http://www.kidswithfoodallergies.org/resourcespre.php?id=99
http://pediatrics.aappublications.org/cgi/content/abstract/120/Supplement_3/S116
http://www.ncbi.nlm.nih.gov/pubmed/12671120?log$=activity
http://www.mja.com.au/public/issues/185_07_021006/all10609_fm.html

Day One

Yesterday was far and away one of the worst days of our life. As an adult, you would never want to get word that one grain of rice can send you into a furious fit of vomiting and leave you in a state of shock. When you hear that news about your child... That's just below the belt. While my hard core pity party was yesterday, I can't say that I've taken my party hat off yet.I know that our family and friends are joining us on this turbulent ride, so I'll share with you the developments (albeit small) that have occurred in the last 24 hours.

After I wrote about yesterday's diagnosis, Claire and I set off to the lab at Clarian North for a blood draw. The allergist wanted to screen for anemia, her hydration levels, celiac disease (an autoimmune disease in which the lining of the small intestine is damaged from eating gluten and other proteins found in wheat, barley, rye, and possibly oat), and a couple of other things that I didn't catch. It was mostly for precautionary purposes as the doctor doesn't see any real threat with the food history we've collected so far. Since Claire is a big 6-month-old now, the foot prick was just too babyish. Instead, they had to pull out a tiny tourniquet, a big needle and vials that seemed fit for a grown-up... I tried to hold her while they prodded around for her tiny veins, but her strength and my emotional weakness called for a second nurse to assist. They told me I could wait outside while she screamed and cried, but I couldn't bear the thought of abandoning her. It felt like an eternity before they filled the three vials. I carried her out of the hospital, both of us were tear stained and catching our breath. It looked and felt like we'd just lost a fight.

To add to our misery, Andy (with a fresh ear infection) fell down the last stairs and hit his head on the concrete basement floor... Thank God he was ok, but JP and I took turns checking on him throughout the night. I waved my white flag and called it quits to our nightmare day.

This morning I began poring through what little is known and available for families with FPIES. Through Amber (God Bless her!), I "met" a mom in St. Louis whose 3-year-old-son has been battling FPIES since his diagnosis at 13 months. We spent an hour on the phone and she gave me some excellent information and sage advice as someone who knows the realities all too well. I've also found some articles in various medical journals and sent off an email to one of the leading researchers of FPIES at Mt. Sinai Hospital in New York. I sure hope he checks his email.

Here's what I've come too... Clairey and I (and JP and Andy to a lesser extent) will not come in contact with anything with cow's milk, rice or oats. We will hold off on the other common triggers (while there is a list of "more common triggers", any and all foods can trigger a vomiting episode) like wheat, soy, sweet potatoes, green beans, peas, chicken, turkey and legumes until a much later date. We will start introducing her fruits and vegetables one at a time, for periods of one to two weeks (she might ingest it perfectly fine the first 3, 4, or even 5 times before another episode can land the food on the "Trigger List"). I will not start the trial and error process with new solid foods until we speak with the allergist again. My hope is that, before I introduce anything, Clairey undergoes an ATOPY Patch Test. This is a skin test in which small metal "caps" containing small amounts of a variety of foods (including triggers) are put on her back for a couple of days. Once removed, many times the skin will break out in some sort of rash beneath the caps containing foods that her body will reject. This is still in clinical study phase and hasn't proven absolutely accurate, but I will feel less like I'm "poisoning" her when I have some shred of hope that we'll add a food to our "HOORAY!" list.

In the event that we have another episode, and we will, we're going to be ready. I will introduce all foods on Monday morning so that any episodes will occur during the daytime when we have access to our doctors and help with Andy. We're going to set up emergency "buckets" in convenient locations containing towels, wipes, the EpiPen and diapers (for wearing AND catching vomit). I've been given excellent advice to look into a prescription for Zofran (and anti-nausea med) to slow down the vomiting and ward off severe dehydration and shock symptoms until we reach the hospital. We will be instituting new rules for eating in our home that include, but are not limited to, removal of all offending foods, eating strictly at the table, and (this goes for Andy) no sharing with Claire. Whenever we are not in the safe confines of our home, JP and I will act as Clairey's gatekeepers. We have so much to learn about reading food labels and finding the hidden ingredients in the foods we deem "ok". I know that we can't blanket the world in bubble wrap, but we'll sure as hell try.

Last night I couldn't sleep and I kept thinking that FPIES is like navigating a mine field everyday. One false move and we could send our baby girl to the hospital. It's a life-altering disease, if only for a few years (God willing), that will push us to the brink, emotionally, intellectually, physically... We weren't asked, or given advance notice or prepared for our new life, which scares me. I don't know what we are in for, but I do know that we aren't going to take it lying down.

You would never know by looking at Clairey's magnetic smile and chubby rosy cheeks that there's upheaval in her little body. As her gatekeeper, I will do everything to ensure her itty bitty insides match her radiant outward appearance. As her mother, I will pray everday for a speedy end to this so that she can go on and have a healthy, carefree childhood... One day at a time.

FPIES & Proctitus

Wednesday, January 13, 2010

While I'm still catching my breath, I'd like to share one thing that has consumed us for the last month. Everything went from bad to worse in the last seven days.

At about 4 months of age, Claire had a couple of days worth of formula. She took it like a champ. A week later, she had another days worth of formula. Within days she began to show blood in her stools. After a visit to the pediatrician, we concluded she had an intolerence to cow's milk protein and we were going to stick with breastfeeding exclusively. Problem solved...

At 5 months of age, we started her on rice cereal. She ate ravenously for almost two weeks before I introduced her to oatmeal. She seemed to like that as well. Christmas in Tennessee came and I was ill prepared to feed her solids during our trip, so I didn't. We returned home and I gave her the oatmeal once more. A few hours after consumption she woke up in a pool of her own vomit, with swollen arms, purple little hands, and a splotchy rash covering her stomach and back. We paged the pediatrician at 11pm and he walked us through Benedryl and rehydration procedures. Shaking, we went to bed and woke up to our happy-go-lucky Clairey Lou Lou Ladybug.

I was nervous about giving her food again (Oatmeal was OUT), so I waited another week before giving her a mixture of sweet potatoes and rice cereal. She ate exceptionally well. Two to three hours later she woke up vomiting again, over and over. She got to the point of dry heaving. JP and I didn't waste a second paging the doctor again. He believed it was a stomach bug and reminded us of the proper rehydration procedures. My instincts told me it was the food, but I didn't know enough to argue with the doctor. We celebrated Christmas in Ohio without any solid food for Clairey.

We came home and I built up the courage last Tuesday to feed her breakfast (I wizened up after all of our late night scares). I gave her the same sweet potato and rice cereal mix as before. I figured that would tell us once and for all if it was the food or a stomach virus. She woke up from her nap and half an hour later the vomiting began. For nearly two hours we held our baby girl as she emptied her entire tiny body. She was pale, listless and clammy. I regret tremendously not taking her to the ER. I just thank God that she slowly came back to us after a little nap and small doses of breastmilk.

I owe an enormous thank you to Amber Bosler, who led us to the information about FPIES. She came upon it after her son suffered from vomitting after rice cereal. I spent hours researching and printing off information. Last Wednesday morning I went armed with food labels and my research to the pediatrician's office. We talked about a possible diagnosis and our options. The only piece of concrete information he gave me was a referral to an allergist... and a lot of support.

Clairey and I went to see our allergist today and our suspicions were proven true. Claire was diagnosed with Food Protein Induced Enterocolitis Syndrome and Proctitus. This is the most severe food protein allergy because she could have a systemic response (swelling, rash). Enterocolitis is inflammation involving both the small intestine and the colon, which is being triggered by rice, oat, cow's milk and possibly (unfortunately) other foods that we have yet to discover. We were prescribed an EpiPen for any subsequent episodes and strict orders to get her immediate medical attention as she's at risk for going into shock.

I was also asked if I would continue breastfeeding Claire or if I would like to get her on a specialized formula. I told the doctor that it was my intent to breastfeed through her first year, as the health benefits were important to me... and the cost savings of avoiding an exorbitantly more costly formula. That being said, I have been instructed to remove all rice, oats and cow's milk products (think milk, cheese, yogurt, butter, etc.) from my diet until further notice.

The silver lining in this nightmare is that Clairey has a very strong chance of outgrowing this syndrome by her third birthday. We'll test these trigger foods in the future in the safety of a hospital or doctor's office setting, so that (God willing) our episodes are behind us.

Clairey continues to be as happy and engaging as she's ever been. After the nurse gave her the dreaded "panel" prick to test for allergies, Clairey turned around and smiled at her. We are prepared, as a family, to keep her safe and sound from all that could put her in harm's way. Our little angel was a gift from God to teach us something about love and overcoming. Thank you, God.