Our post today is a guest blog entry from Brittney, one of the founders of the Reflux Rebels, a support group for parents of children with reflux, MSPI and other GI issues. You can also find the Reflux Rebels on BabyCenter, where they have an active group of over 1,800 parents. We’d like to thank her for guest blogging for us.

I’m Brittney, a stay-at-home-mom to three beautiful kids; 2 bouncing, beautiful girls and a sweet baby boy.

My journey with infant reflux and severe food allergies started when our second daughter, Elliott (Ellie), was born. Ellie immediately started with symptoms of what I now know as reflux and Milk/Soy Protein Intolerance (MSPI) (for Ellie, her reflux was a by-product of her untreated MSPI and various food allergies).

In the hospital she appeared to be a normal newborn. She was a little “spitty” but nothing that struck us as odd. She only had one bowel movement in the hospital and thus began our journey to what seemed like hell and back. When Ellie was four days old we went to the new pediatrician because her belly was distended, she hadn’t had a bowel movement since we left the hospital, and she was visibly in pain. We were told to put her on soy formula (which our first daughter was successful with) and to try a few home remedies to relieve her constipation.

In the midst of the formula change and adjusting to life with a newborn again, symptoms of severe reflux appeared. Ellie went from screaming for a few hours a day off and on to screaming bloody murder for hours on end. In desperation, we went back and forth to the pediatrician begging for help and answers. We were told countless things. She just has colic… She’ll outgrow it… Try some cereal… etc., etc.

We were put on medications such as Axid, Zantac, Erythromycin, Prevacid capsules, and Prevacid Solutabs. Finally one night after Ellie screamed for 22 hours straight and the pediatric nurse assuring me she just had “colic”, we made the decision to go back to our previous pediatrician across the state line. The next morning we were seen by our current, open-minded (and amazing!) pediatrician and have never looked back. Ellie was started on 30mg of Nexium a day and switched to Neocate, an elemental formula for kids with severe food allergies.

Throughout the following months, Ellie underwent countless procedures, x-rays, blood draws, ultrasounds, and doctors’ visits to get her condition under control. We trialed and failed food after food after food with her. We were told all of those common myths by the GI and the only thing we were left with was frustration and a daughter completely and utterly miserable. After a few months of being on the Nexium and Neocate combination, things started to look up. By a year she was a new baby and now, at 2, I don’t even recognize the once miserable baby she was. She brings such joy to our home!

When our third child, Cohen, was born, I noticed his bowel movements were filled with mucous (a tell-tale sign of a milk intolerance). I immediately cut all dairy from my diet. A week or two later I cut all forms of soy. Like Ellie, while we were trying to get his milk situation under control, I noticed reflux starting to creep its way in (both a mechanical issue and an MSPI by-product for Cohen). We wasted no time and went back to our pediatrician to get him a proper PPI (30mg of Nexium also) at MARCI-kids dosing standards. After 7 weeks of continuously mucousy and bloody stools, the decision was made to also put Cohen on Neocate. Within two weeks of being on the Neocate and Nexium combo, he was good as gold and within 6 weeks, his stools were perfect! He’s a happy, healthy, BIG, 7 month old now. He’s the perfect (and final!) addition for us!

Why all the details?, you ask. I share the details with you to let you know that I can relate. I have been there and done it all.

• I’ve dealt with the horrible doctors and the nurses who act like you’re insane.
• I’ve been there with the screaming, inconsolable infant.
• I’ve been there fighting with the insurance to cover this particular test and that particular medication.
• I have been there fighting with my spouse because of all the tension having a GERDling and allergy baby brings.

I have been there. And now I want to be there for you. Our group, and The Reflux Rebels website, was created out of our desire to see no parent, family member, and infant have to suffer like ours have. We hope that you will find this information useful and informative.

And as always, know, It’s not “just colic”

I, along with Lauren, created The Reflux Rebels in January of 2009. Since then it has grown to over 1,800 members. In late 2009, Lorelei and Kim joined us as co-owners of The Reflux Rebels. We are currently in the process of becoming a legal non-profit organization and strive to give back to our community and those in need.

 - Brittney

Our post today is a special 2 part guest blog entry from Brenda Eich. Brenda was instrumental in getting several insurance companies in South Dakota to sign an agreement guaranteeing coverage of amino acid-based formulas. We would like to thank her for sharing her story with us.  This is part 1 of her 2 part story.

The Initial Food Allergy Diagnosis

You have just left the doctor’s office with your infant in your arms. Now you have those doctor’s words circling in your mind. “Your child has multiple food allergies and will need a special amino acid-based formula like Neocate. You can’t feed your child anything that has milk, soy, oats, citrus, wheat or nuts in it. Start reading labels with a microscope.” If you are lucky, you are only avoiding two or three foods.  For most children with protein intolerances, IGG or IGE allergies, you are avoiding many foods.

The first few years of our little guy’s life were really a blur. I spent countless hours in the kitchen trying to make meals out of a short safe-foods list. He was very small (and still is) so my main “job” was to feed him. That sounds a lot easier than it is. Most allergic children have food aversions. We continued to visit the allergist, pediatrician, GI specialist and nutritionist.  All of the sudden, this little bundle of joy became a huge job like I have never known (and he is our third child). I am blessed to be a stay-at-home-mom but could it really be THIS hard??

It’s More Than Just Dealing with Food Issues

In addition to the food issues, we also had social issues. Can we really go to church, Bible study, MOPS, storytime and the park where other children are running around with frosting or cheesy crackers on their fingers? Scary! I found myself quarantining ourselves off during this journey. My main goal was to keep him safe while increasing his weight ever ever so slightly each month.

The expenses of Neocate, pediatric doctor’s appointments, GI specialist appointments, allergists and medicine (reflux) were more than we could bear. After several years of purchasing Neocate out of pocket, I started submitting letters to our insurance company. All of them came back with a standard “Request Denied”.

How My Grassroots Effort for Insurance Coverage Started

Then I met a wonderful family who has three boys. Their oldest is five and has eosinophilic esophagitis (EE). He desperately needs Neocate but with no insurance coverage, the cost is too high. His mother actually works for the hospital and the hospital insurance plan wouldn’t cover Neocate. This little guy is the tiniest little five year old you have ever seen. It breaks my heart to know that he isn’t the only little person who isn’t getting the nutrition he needs. Many children who need Neocate don’t get nearly enough or don’t get it at all.

Then I heard of one family who tube feeds their child because if you tube feed, it is covered by insurance. Unbelievable! They said they hope when he doesn’t need Neocate, he can be weaned off tube feeding and not have food aversions.  This is just unacceptable. Neocate needs to be covered by insurance.

My blood began to boil…

After about three years of dealing with food allergies and purchasing Neocate, I decided to reach out to any others and see if they were receiving insurance coverage. We have a website where moms meet in our local area.  I got back two responses from other moms who were purchasing Neocate for their little food allergy people also.

I chatted with those moms and the more I chatted, the more determined I got!

Stop back for the second half of Brenda Eich’s story about how she started a grassroots campaign to win medical insurance coverage in South Dakota for amino acid-based formulas.

We would like to thank Kendra Tiedemann for guest blogging for us and sharing her family’s allergy story. Stay tuned for her next entry about her other son Norman!

Paulie and the Easter Bunny

If you were to ask my son’s classmates about him, they would describe a typical five-year-old boy. They would say that Paulie likes cars, trucks, dinosaurs, and making noise. They might also tell you that he skips lunch every day. What they may not tell you is that Paulie is allergic to dozens of foods, or that simply sitting with his friends for lunch in the cafeteria would be a danger to his health.

Paulie began showing signs of allergies as an infant. He developed eczema by 10 weeks of age. Traditional therapies were ineffective. By five months, Paulie was wheezing daily. After hours on the phone, looking for an allergy specialist, I knew exactly what the next call would bring. “We don’t do allergy testing until after age two. Call again in 18 months.”

Our lives changed dramatically when Paulie, still just eight months old, was rushed to the hospital after he stopped breathing. The allergist we saw afterward indicated the symptoms were consistent with a severe allergic reaction. Allergy testing came up positive for some foods and animal dander. Removal of allergens from Paulie’s diet and reduction of animal dander in our home decreased symptoms, but there were still unexplained flare-ups.

Two months post-diagnosis, we were visiting family for the holidays where each day started with a hot breakfast.  Paulie’s asthma and eczema flared each morning shortly after we entered the kitchen, but only sometimes during lunch and dinner. Finally the pattern was clear. He was reacting to food proteins in the air! We learned not to cook or reheat anything with eggs or pork around Paulie.  Peanuts and tree nuts were banned from our home completely.

Paulie continued to sensitize to more foods over time.  His allergy list grew from two foods to eight, and then to fourteen.  Eventually, he was reacting to every food that he’d ever eaten. Additionally, Paulie was diagnosed with another allergic condition: eosinophilic esophagitis (EE or EoE). So, in addition to immediate and potentially life-threatening asthma and skin reactions, Paulie also has delayed GI reactions. These include esophageal pain, reflux and vomiting, generalized abdominal pain and skin-blistering diarrhea that hits one to three days after ingestion of an allergen.

It has been a year and a half since Paulie sensitized to the last of his safe foods. His sole source of nutrition is Neocate One Plus. We use Neocate Nutra, cane sugar and ice to give Paulie the option of sitting down with a bowl of something while we eat. He has adjusted well to his limited diet. When asked what he can eat, Paulie will rattle off his list as though it is carnival fare. “I can have special juice and special food and ice! Big ice, little ice, snow cone ice and ICE ice! And cotton candy and popsicles and freeze pops and…”

I am incredibly thankful that Paulie handles the restrictions so well, and often look to his example when we encounter food in an unexpected place.

-Kendra Tiedemann

We would like to thank Chris Kozimor for guest blogging for us and sharing her family’s allergy story.

Before I became a mother, I had heard all the stories of how hard it is to have a baby and how you don’t get any sleep. So when my daughter, Eva, was born and cried all the time, I thought it was normal.

I actually had friends tell me that they’ve decided not to have children after seeing how awful I looked and how Eva just kept crying and crying! She would only sleep 10 minutes at a time. Everything I fed her just came up and made her unhappy. My sister nicknamed her “the angry red star” because she would turn red and her legs and arms would stick out and she would just scream.

I eventually stopped breastfeeding, thinking that maybe she was just not liking my milk. But still, I was warned that having a baby was challenging and difficult so I just thought I had a normal baby.

Then, Eva started developing a horrible diaper rash that wouldn’t go away, no matter what type of ointment or medicine I put on her. It got to the point that she would scream every time she went to the bathroom (which is frequent for a newborn!). I called the pediatrician who recommended I put Eva on Nutramigen, as well as to try to let her sleep in the car seat to ease her reflux. It was better, but Eva was still not a happy baby and her diaper rash did not go away.

Finally, after months of guilt and worry that I was just not a good mother, I talked to the pediatrician. After being even on Nutramigen, she tested Eva’s stool for blood, which came out positive. We went to a pediatric GI doctor who put her on Neocate. Within a week, her diaper rash completely disappeared and her spitting up improved. She stopped crying all the time and actually started sleeping! The blood in her stool was gone. She was happy and healthy.

I felt like a confident normal mother for the first time in 5 months! And it was so wonderful to enjoy my happy healthy baby.

-Chris Kozimor

The other nutrition specialists and I often hear stories from parents about the (often too long) process of getting their child diagnosed and treated for a milk protein allergy. Some families even write up their experiences for us and allow us to share them with other parents. I just re-read one recently about a little boy named RJ (for the full testimonial, click here).
By the time R.J. was four months old, he had a painful, itchy, red rash all over his body. He was miserable and in pain.

R.J.’s parents took him to several doctors who tried all these different treatments, but none of them worked.

After months of misery for RJ (and the rest of the family), they finally found a pediatrician who identified the problem as a food allergy and recommended Neocate, an amino acid based formula for the little guy. Within a week, the rash was cleared up and R.J. was a happy, healthy baby again.

This story is a reminder that eczema can be tough to figure out. Many doctors, like R.J.’s, think that eczema is always caused by a topical allergen. However, what many people don’t realize is that sometimes the cause of eczema is from the inside.

R.J. suffered from a severe case of eczema resulting from a milk protein allergy that caused not only him, but his whole family, to suffer. Something to consider if you notice a rash on your little one.

- Sarah