Say CHEESE!

That's right. Cheese!!!!

Two weeks ago, Taylor asked me "Mommy, when will I be able to have cow's milk?" This is not the first time she's asked me this innocent question. She does very well with her food allergies and is very accepting that she has allergies and she there are certain foods she can't eat. But every now and then, she'll ask that question in different ways "When I get bigger can I have cow's milk?"

So, when she asked that day, we had an honest discussion about outgrowing allergies and that some kids outgrow allergies and some kids don't and the only way for us to know if she's outgrown her allergies is to feed her to the food she's allergic to. Her food allergies have never shown up on blood tests as she has milk protein intolerance (for which there are no tests). Her reactions are delayed by about 12 hrs so we plan our food trials carefully. As the day went on, I realized she'd be off school for the next week (she's been in preschool all summer), and she's been pretty healthy for the last 6 weeks or so, so it's a good time to feed her dairy and see if she's outgrown her allergies. Our GI doctor had given us the go-ahead to try dairy with her. Of course, if your child has an allergy, you should always consult their doctor before feeding them their allergen.

Well, I'm thrilled to report that after a week of slowly re-introducing dairy, she had no signs of allergic reaction and we're saying she's officially outgrown her dairy allergy! We've proceeded in re-introducing dairy into her diet slowly because it's very common to become lactose intolerant after not consuming dairy for an extended amount of time. Her body should adjust to the dairy as it becomes a regular part of her diet. At this point, she's eaten yogurt, milk mixed with rice milk, sour cream, cheese, cheese enchiladas (which she doesn't really like), and pizza.

In other news, we got the results of Taylor's scope and probe that I posted about a couple of weeks ago. I'm choosing to just take the results as another piece of the puzzle. It was determined that she has "non-acidic" reflux, and the GI doesn't think she needs any meds at this point. In all honesty, I'm a little frustrated because she still complains of tummy pain, and I'm not really sure what the culprit is. In the GI's words "we don't have a good reason for why her tummy hurts". He recommended a dietary supplement called Prelief, that she can take before she eats acidic foods because she definitely has reflux, and when she eats acidic foods, her reflux is painful. I also believe, based on her frequent complaints of tummy pain and based on what I've read, that non-acidic reflux is still very uncomfortable.

So, that's our update!

So Glad it's Over!

We took 2 days off of preschool and 2 days off of work for a procedure for Taylor that will hopefully give us some answers and help her feel better.

I haven't blogged much about Taylor's medical issues. I count my blessings everyday that we deal with medical problems that are treatable. I know there are too many families out there who manage medical problems that are more heartbreaking than what we manage everyday. There are families out there who spend days on end (and weeks and months and even years) in hospitals and in and out of doctors offices. My heart goes out to all of those families. While we haven't had to deal with any catastrophic medical issues in Taylor's 4 yrs of life, she has some chronic health issues that cause her discomfort and cause us a lot of co-pays in doctor's visits :). Of course she has food allergies, which I've discussed several times before. But honestly, that's the least of what we deal with at this point. Kids With Food Allergies has been such a huge source of support to me and our family that I feel like we've got a really good handle on how to manage Taylor's food allergies and keep her safe.

Taylor also has asthma which we've been managing for about the last year (although, in hindsight, I really think she's had asthma for longer than that but it went undiagnosed). She also has mild eczema. But the daily issues that we struggle with are related to reflux. I debated about sharing all of this because it's heartbreaking to see kids connected to tubes and I have a weak stomach. Yes, even as a hospice social worker a lot of medical stuff makes me cringe and turn away. So, I certainly won't mind if you skip over this post and don't look at the pics (which really aren't graphic), but I decided to write this post in hopes of maybe helping someone else out who may be on a similar journey.

This is a picture of Taylor before her procedure yesterday. She LOVES doctors and nurses and hospitals. I really have NO idea where she gets that from because hospitals used to cause me to have panic attacks. Literally. And, after a recent trip to our pediatrician, Taylor declared she wants to be a doctor when she grows up. (I guess we better start that college fund).

Taylor was born at 37wks after a very quick and intense labor for Mommy. From the very start, she spit up often. I had been surounded by babies and children for as long as I remember so I know babies spit up. But, by 3wks I was saying "This isn't normal!". She would projectile vomit (like a foot away), 15-20x/day. At the time, I didn't know my breastfed baby was allergic to dairy (which I was consuming daily), but I knew something was wrong. It took 3 months for our pediatrician to take us seriously. She ordered an upper GI, which involved feeding Taylor a bottle of barium, while we watched her gastrointestinal tract on a monitor. It showed her refluxing several times as she squirmed and screamed (exactly like she did when we nursed). I finally had a better understanding of why my baby was so miserable.

To make a very long story short, Taylor was diagnosed with GERD: Gastro-esophageal reflux disease after that test. As an adult, you know it as heartburn. Heartburn becomes a "disease" when it's frequent and chronic, and uncomfortable (I'm sure there's more specific diagnostic criteria, but that's the layman's terms version ;) ). Taylor has daily issues with reflux. One in 3 babies is diagnosed with GERD. And the vast majority of them outgrow it by 12 months, as their GI tract matures. Taylor is now 4 and still complains of a lot of tummy pain and has daily reflux symptoms. Since she was diagnosed with asthma, her reflux symptoms have become a little more confusing. She coughs during and after meals and drinks. She's also had pneumonia twice in the last year. She also gets monthly upper-respiratory infections and has missed a lot of days of preschool because for her, a cold is almost never "just a cold". A cold, for her, means a fever, a trip to the pediatrician, sometimes a chest x-ray to rule out pneumonia, antibiotics and several missed days of preschool.

So, all of this brings us to how we've spent Monday and Tuesday. Our GI decided some more tests were necessary at our follow up appt about a month ago. He wants to ensure she gets on appropriate medications, that there isn't more going on with her than we think and he's thinking maybe she actually has "non-acidic" reflux. So, he did an endoscopy and an impedence probe (the tube that you see in the first picture) to measure the acidic and non-acidic reflux that she may be having. The scope involves a tiny tube with a camera attached to it going into her esphogeous and looking into her stomach.

The impedence probe is a tiny probe that goes through her nose (as pictured above), into her esophagus and it sits just above the opening of her stomach. It measure the acid in her reflux, how far it goes up into her esophagous and how often she refluxes. The probe is attached to a recording device. So, our GI gave Taylor a sedative (what they call conscious sedation) to make her sleep during the procedure. He then did the scope and inserted the probe that would remain inside her for the next 24 hrs. The procedure itself is only about 15 minutes.

This is a picture of her shortly after the procedure. When she first came back to us she was awake and delirious, and not very happy. She was also quite chatty. She really needed to sleep so the drugs could wear off. Her face is red and puffy in the picture because she seemed to be having an allergic reaction to the drugs she was given. Fortunately, we were very quick in catching it and it resolved with Benadryl that the doctor ordered. The picture below was taken about 20 minutes after the Benadryl was administered via IV. They wrapped a bandage around her IV port prior to the procedure because she didn't want to have to see it. :)

When I explained to her that she was going to the hospital and what would be done, I told her she could bring a blanket and a stuffed animal or doll. When I asked what blanket she wanted to bring, she said "My sweater blanket". Our wonderful nurse was quite impressed when she commented on how cozy the blanket was and Taylor responded "My mommy made it for me!".

The Benadryl helped Taylor settle back down after the procedure and she slept for another hour and a half. We were sent home with the probe in, the recording device, and a form to write down every time she ate, slept, and had reflux symptoms. They'll then, review the recording on the monitor and compare it to what we had written down to determine the severity of her reflux and what the best treatment is.

While we were at home, Taylor wore her backpack with her monitor inside. We were really worried she would pull the tube out but she did really well with it. She said it was bugging her nose a few times, and when I questioned her about it she said she could feel it in her nose and in her throat. Here's a pic of the monitor/recording device.

We went back to the hospital on Tuesday to have the probe removed (very simple, literally just pulled it out. Painless, except for pulling the tape off), and Taylor was quite excited to see her nurse again, who tended to us yesterday. She colored a picture especially for her and ran and gave her a huge hug when she saw her! I actually almost got teary eyed because I work with so many nurses, I have a very special place in my heart for them. Our nurse thought Taylor was pretty special, too. When she greeted us yesterday, Taylor was her typical energetic self and the nurse said "Wow, this is great I love enthusiastic patients!" My response? "Well, then you're the perfect nurse for us because she's definitely enthusiastic!"

We should get the results of the probe in about a week. The scope looked good on first glance, just mild esophagitis that was there the last time we had this done 2 yrs ago. The GI took biopsies to test the tissue and rule out other conditions for her symptoms. We also need to schedule a swallow study to help determine why she's coughing and gagging when she eats.

Thanks for reading this far. :) If any of you have questions about reflux, please ask me and I'll answer you the best that I can. If you want more information on reflux and are also managing food allergies, there is a wonderful forum/message board to discuss food allergies, reflux, asthma and eczema at www.kidswithfoodallergies.org. You can also visit infantreflux.org and reflux.org.

Food Allergy Awareness Week

May 9-15 is National Food Allergy Awareness Week.

This is a photo of my 4 year-old daughter, Taylor. If you've read my blog much you know that Taylor has food allergies. She is one of the 3 to 5 million children in the U.S. who have food allergies. To find out why I took this picture, keep reading.

As an infant, Taylor was a bundle of allergy symptoms but because the world of food allergies is often confusing, I didn't realize the symptoms she had were related to food. It all became a little clearer as we introduced dairy products.

Taylor was exclusively breastfed until the age of 6 months when we introduced rice cereal. I didn't restrict my diet in any way while I was nursing and thus she was exposed to all the foods I ate (at least if the proteins in the food were passed through my milk, which they often are).

I knew a little bit about food allergies and I knew that one should introduce solid foods cautiously when there is a history of allergies in the family (which there is in mine). I fed her one food for a few days and didn't see anything unusual (for her) and continued on with the next food.

Once we introduced dairy products, I began to see that she had GI issues (that'd be my nice way of saying nasty diapers!) when she ate dairy products. Nasty diapers were normal for her because I was eating dairy products while nursing, but they became even worse once she ate dairy directly. The worst offender was straight cow's milk. Still not really realizing this was an allergy, I limited her dairy, but didn't feel that it warranted any medical attention. She continued to have frequent, unexplained rashes, reflux, GI issues and frequent night-waking/crying.

We were officially thrown into the world of food allergies one Sunday morning in October of 2007 when I fed Taylor a bowl of cinnamon oatmeal. I mixed up the instant oatmeal and handed it to her in her high chair. At 18 months old she fed herself as I turned my back and unloaded the dishwasher. Within a few minutes I heard her say "all done" and I turned around to take her bowl. I was shocked at what I saw. My baby girl's face, hands and arms were bright red. That's when I realized we were dealing with food allergies. I took pictures to show our pediatrician and watched her like a hawk. I'm embarrassed that I didn't even think to give her Benadryl or call the on-call doctor or take her to the ER. Fortunately her reaction did not progress.

A similar reaction the next day, led me to call for an immediate appointment with our pediatrician who then sent us to an allergist. I began to put the pieces of the puzzle together and with the help of our allergist and a good gastroenterologist (a GI doctor), as well as a reaction to soy milk, we have determined that Taylor has Milk/Soy Protein Intolerance (MSPI). This is VERY different than lactose intolerance, although the symptoms may appear to be similar. MSPI manifests as delayed GI reactions to milk and soy protein. Every food has protein (well, except salt and sugar) and a food allergy is an immune system response to a food protein. People who have lactose intolerance do not produce lactase which is an enzyme that is required in the digestion of dairy products. Most people with lactose intolerance can drink "Lactaid milk" or take Lactaid prior to consuming dairy and will not have an adverse reaction to dairy. People with a milk allergy and milk protein intolerance will have a reaction to milk products even if they consume Lactaid prior to drinking milk or eating milk products.

Allergies can manifest in different ways and many children with food allergies react to the food they are allergic to with hives, swelling, and/or breathing problems. Food allergies are very serious and can cause a life-threatening reaction called anaphylaxis. These serious reactions can be triggered by minute amounts of the allergen.

Fortunately, within a few days of Taylor's reaction to the oatmeal and it's other ingredients (she's not allergic to oats), I was strongly nudged by a friend to join Kids With Food Allergies (KFA). KFA was the first message board I'd ever participated in. Basically, you register, post a question and then several of the 20, 000 members will respond to you with their experiences! How cool is THAT! And your post is only visible to other members, not to anyone who wants to google you or food allergies ;)

KFA is a non-profit organization with a Medical Advisory Team who contribute to and review the KFA resources to ensure accuracy of information, and dozens of volunteers who are parents of children with food allergies. The volunteers and the members of KFA are so welcoming that I quickly felt as though KFA was a second family to me. There is no cure for food allergies and there needs to be more research done to find a cure, but in the meantime, as a parent of a child with food allergies, I needed to know what to feed my child and how to keep her safe at playdates, with babysitters and at preschool. The members and volunteers of KFA have taught me all of those things. While they don't provide any medical advice, I've found their wealth of experience incredibly helpful in knowing what questions to ask our doctors and how to best advocate for my daughter.

I began volunteering for KFA about a year and a half ago and I was thrilled when I was recently offered the position as the on-line Community Manager. KFA members can now participate in discussion on the forums for free and can purchase a "Family Membership" for additional benefits including full access to KFAs educational resources and over 1,000 allergy friendly (and delicious!) recipes.

If you, or someone you know, is a parent of a child with food allergies, KFA is a priceless source of support that can make all the difference in improving the quality of life for children with food allergies and their parents. KFA is a non-profit organization that needs your support. Please consider making a tax deductible donation to help KFA continue to support families managing food allergies. To donate to Kids with Food Allergies click here.

Thank you for reading Taylor's story.

To see some of the faces of food allergies (and to see why I took the picture of Taylor), go here.

The following are some great resources for anyone dealing with food allergies:

KFA's Starter Guide to Parenting a Child with Food Allergies

Allergic Reaction or Anaphylaxis

Diagnosing and Testing

What is FPIES?

What is eosinophilic esophagitis?

National Eosinophil Awareness Week

So, if you've been reading this blog at all, you know by now that my daughter has food allergies. As an infant she had severe reflux which continued well into toddlerhood, long after most babies outgrow it. When she was around 18 months old, we finally realized she had food allergies. I connected with a local support group who referred me to Kids With Food Allergies. It was here that I learned how to manage my daughter's food allergies and how I discovered how uncontrolled her reflux was. She was still waking frequently during the night, had frequent ear infections, frequent hiccups after eating, wanted to eat and drink constantly and even spit up occassionally - as a TODDLER! Our pediatrician referred us to a pediatric GI who ultimately tested for EE (Eosinophilic Esophagitis) which often goes hand-in-hand with reflux symptoms and food allergies. Taylor was not diagnosed with EE, but for several weeks, as we were awaiting our GI consult, as we were waiting for "scope day", and as we were waiting for the results of the biopsies, I pondered what it would be like to raise a child with EE. KFA has a forum dedicated to parents of children of Eos disorders where these parents can discuss symptom management, feeding tubes and get support from other parents who have faced similar circumstances and had to make the same dificult decisions for the health of their children.

This week is National Eosinophil Awareness Week. I feel compelled to do my part to raise awareness of this rare but significant condition. As I was blog hopping tonight, not even thinking about EE or food allergies, I came across this post. This is a very touching story of a mom who's 3 year old was diagnosed with EE. Still don't know what EE is? Check out her post so you can learn more! She'll do a much better job of explaining it than I will!

Meatloaf Muffins

These are SO yummy! I've seen the idea of making meatloaf/meatballs in muffin tins before and it's a great way to serve them to kids, but this recipe is amazing! It calls for Stove Top Stuffing Mix! To quote one of my fave cooks, Yum-O! These are definitely a new favorite of ours. You'll find the recipe here. *

The only downside is that I realized Stove Top (at least the Turkey flavor that I used tonight) is not safe for my little monkey. One of the foods she's allergic to is soy. She is able to handle soy oil and soy lecithin because the soy is highly refined which changes the soy protien enough that she doesn't react to it. Most kids with soy allergies are able to tolerate soy oil and lecithin. But, Stove Top contains hydrolyzed soy protein. A quick google search and a visit to KidsWithFoodAllergies.org, confirmed that hydrolyzed soy protein should be avoided by those with soy allergies. If your child has a known soy allergy please consult with your doctor before feeding your child soy oil or soy lecithin. ;)

I had made this recipe for dinner tonight because I thought it would be a yummy family dinner that would be safe for all of us. Fortunately, when they were in the oven, I decided to double check the ingredients on the Stove Top and found the soy listed. Just another reminder that as a POFAK (parent of a food allergic kid), I must check every label, every time and read all the ingredients to ensure it's safe for my little monkey.

By the way, I prefer to refer to myself as a parent of a child with food allergies, rather than a parent of a food allergic kid. I've spent several years of my life surrounded by people with disabilities and it's always best to recognize "the person" before "the disability" or special needs. But, in this case it's a mouthful and the common term among parents of children with food allergies is POFAK which definitely rolls of the tongue easier than POCWFA, don't ya think?


*If you avoid eggs or don't have any on hand, you can sub 2 Tbspns of applesauce for 1 egg. That's what I used in this recipe and it was fabulous!