We hear from a lot of parents who are dealing with feeding difficulties. Often, feeding difficulties can be a symptom or side effect of food allergy related conditions such as Eosinophilic Esophagitis and other GI conditions. This can occur because eating is a learned developmental skill, and one of the few activites of daily life that a child can completely control. If a child experiences discomfort associated with food they can learn to avoid this discomfort by developing food selectivity, difficult mealtime behaviors, or food aversions. Even after your child’s condition has been treated and they are no longer in pain, they still may have lingering issues at mealtimes due to learned associations with food and discomfort. For others, they may simply not like the taste of their new formula and need some help adjusting to it.

Below are some tips that we hope can help make mealtime a little less stressful for both you and your child. As always, be sure to consult with your doctor and/or feeding therapist before trying anything new.

• Transition to new formula gradually. If your child is refusing Neocate when you first switch, try mixing a small amount of it with a large amount of another beverage that they will drink. Then you can increase the concentration of Neocate gradually, until your child will accept a bottle of 100% Neocate.
• Plan predictable and routine mealtimes. Sometimes when a child is on a diet consisting mainly of formula, they will “graze” throughout the day, drinking a small amount of formula here and there. Maintaining a predictable mealtime schedule, seated in a highchair or at the table can help increase their appetite, leading to an increased intake of formula. Predictability can also help decrease anxiety about eating, and promote optimal learning about the routines, customs and social richness of mealtimes.
• Try “repackaging” their formula. If your child doesn’t like to drink their formula from an open cup, try introducing it in a sippy cup or with a straw cup with a lid (or even better, a flavor straw!) to help decrease the smell and intensity of the flavor.
• Offer choices, when possible. For example, if your child brings his or her formula to school for lunch, let them choose which flavor they want each day. This will allow them to feel more in control of their mealtimes.

Have any of you dealt with a feeding difficulty? What tips have you found helpful?

Angela Haas MA, CCC-SLP

Pediatric Feeding and Swallowing Specialist

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 the second part of her story.

Check out the first part of Brenda Eich’s amazing journey to get medical insurance coverage for amino acid-based formulas in South Dakota.

Working with South Dakota’s State Legislature

I asked an old freiend who is an attorney who I should reach out to. He gave me the name of our South Dakota State Representative – and actually the gentleman who represents my district! I met with our (wonderful) South Dakota State Representative, Todd Schlekeway. I asked him to come to our house and I showed him printed out information from Children’s Magic. He was intrigued by a few things. One: that Medicaid and WIC covered Neocate; two: that it was medically-necessary; and three: it is needed by only a fraction of children so the cost to the insurance company would be minimal. 
 
Representative Schlekeway left our house with a packet of information to read. I started a grassroots effort. I appeared on our local KELOLAND television station over the dinner hour.  It didn’t take much to get a following.  People are very interested in children’s issues. I told our personal story of allergies and medically-necessary Neocate — and no insurance coverage but (hopeful) coverage with my new friend, Representative Schlekeway. The story was also online and gave a link to my email. I started to receive many emails! I started a spreadsheet to keep the names, child’s name and age, insurance company, email and address in one place. My database grew to around 30-35 families.  
 

Initial Roadblocks Didn’t Stop Us!

We began to meet as a Food Allergy Group at the local hospital and our meetings quickly turned into a “How can we get a law passed?” group. The hospital actually denied our meeting at their facility – but it didn’t stop us or some of the doctors who supported our efforts. We met at a community center!
 
Representative Schlekeway and I tweaked our bill several times (with the help of several GI doctors and an insurance company) until we had just the right wording.  It was give and take but I wasn’t going to rest until it covered what these children needed. It was several weeks until he needed to introduce the bill into legislation, but it became huge leverage for us. Representative Schlekeway continued to say that we needed to educate our representatives and senators so we would get better results. He spent hours meeting with insurance companies and educated them on food allergies and this medically necessary product – Neocate.  
 
In the meantime, I kept in close contact with Representative Schlekeway. He asked several times for our group to send out emails to the representatives or senators or both groups. We wrote heartfelt stories with pictures of our little ones attached to the email. We told of how our children desperately needed this medically necessary product and how it wasn’t covered by insurance. One gal who worked for the state talked about quitting her job so that she could get it covered by WIC, but in the long run decided to keep the job she loved and pays for Neocate out of pocket. 

Finally! Some Progress with Insurance Coverage for Neocate

One day Representative Schlekeway called and had just left a meeting with my insurance company, and they unanimously agreed to cover Neocate for their insurers! This was the insurance my family had!! Neocate would be covered for our little guy!! It brings tears and a big lump in my throat as I type. It was such an overwhelming phone call. Years of Neocate and finally, it was going to be covered by our insurance company! They really believed it was medically necessary and needed to be covered.  God is good.
 
That insurance company was then instrumental in getting other insurance companies to cover Neocate also. You see, the word got out and I was then on three different television stations and in our local newspaper. While I didn’t list the insurance companies who didn’t cover Neocate, it was still bad publicity for them. The insurance companies ultimately said they wished to have a statewide agreement instead of a mandate (law). So, the days ticked by and our group sent heartfelt emails again to our legislature. The word began to spread like wildfire! People without children even knew what Neocate was! It was such an exciting time. 
 
Day after day, Representative Schlekeway would call with updates about insurance companies. Those that agreed would send him an agreement that the state of South Dakota would then keep on file.

The Medical Insurance Companies Jumped on Board with Our Efforts

We now have the top six South Dakota insurance companies covering Neocate. Two of them covered it immediately. One of them won’t begin until January of 2011. Three of them will begin coverage on July 1, 2010. We were a bit disappointed about the delay of coverage, but there has to be a start date. Representative Schlekeway is now contacting the last two insurance companies in SD who don’t cover Neocate. We are hopeful they will begin coverage also. The deadline for filing a bill has come and gone so that leverage is gone, but we have the other insurance companies doing the right thing.  
 
In the beginning I set out to get coverage for my family. When our insurance company agreed to cover our Neocate, I could have stopped and let our group plead to their own cases to their insurance companies with Representative Schelekeway. But, I was too involved with these other families and little children.    
 
I was asked if I would do it again. It was a lot of work, but the work I did was for our little South Dakota children who can’t stand up for themselves. I have to give most of the credit to Representative Schlekeway. Without his contacts and passion for our issue, we wouldn’t have gotten to first base. (For years I wrote letters and was denied.)

My Inspirations is Helping Out Little People

It is such a wonderful feeling knowing that our little people will have the insurance coverage they need! May those of you who live in a state where Neocate is not covered, be bold and stand up to your insurance companies. Find a state senator or representative who will help you contact insurance companies and learn the lingo. Start by gathering names of food allergy families. Contact a senator or representative who will guide you and plead your case. You can do it!   
 
I hope the following Bible passages will inspire you like they inspired me. Our pursuit in South Dakota wasn’t difficult. It was a bit time-consuming on certain days. It was frustrating some days. It became my passion. In the long run, it was the most rewarding thing I have ever done. 

“And if anyone gives even a cup of cold water to one of these little ones because he is my disciple, I tell you the truth, he will certainly not lose his reward.”  Matthew 10:42
   
“The King will reply, ‘I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me.’ Matthew 25:40
 
- Brenda Eich

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. In case you missed it, be sure to read her other entries about her sons Paulie and Norman.

In a typical conversation about my children’s food allergies and eosinophilic esophagitis, I stress that they are just like their peers. They may not be able to eat or (in Paulie’s case) even be near certain foods, but they can still do everything else that a typical child can do!  They love going to preschool and playing with their friends. Paulie tells elaborate stories, and he sings or hums all day long. Norman makes spectacular sound effects, especially those related to cars and other motorized vehicles.  They run around like wild animals and make me wonder where they get the energy!  However, this is not a typical conversation and my boys could not safely engage in many typical childhood experiences without my pre-planning and behind the scenes work.

Every aspect of life is affected by the boys’ food allergies, and that is the case for every member of our family.  We no longer attend the large holiday gatherings that we once loved.  The stress of knowing that similar events have led to the worst of Paulie’s allergic reactions overshadows the joy of the celebration.  Instead, we gather in smaller groups or remain at home to celebrate alone, scheduling family visits for quieter times.  I look back at the Thanksgiving dinners, Christmas parties and Easter brunches of my own childhood and I hurt for my children, knowing what they are missing!

Planning for school is an ongoing challenge.  Paulie and Norman both have extensive 504 plans on file with the school that lay out the accommodations that are needed.  I work with the teachers and staff every step of the way to ensure that the boys are not inadvertently exposed to allergens while at school.  Every item used in their classroom must be inspected and approved.  This includes soap and cleaning supplies.  Teachers know that they cannot use food or food packaging in lessons and crafts.  However, allergens can be found almostanywhere.  For example, paints may contain egg protein and shaving cream (used for tactile lessons) may contain milk.  It is my job to communicate with school staff to catch potential exposures before they occur.

Medical appointments are also complicated.  It is important that doctors and nurses wash their hands immediately before examining the boys, but not until I have checked the ingredients of the soap.  Every new or refilled prescription is a potential problem due to the frequent inclusion of allergens as inactive ingredients.

It is a fine line that I walk with family and friends to prevent allergic reactions while also allowing my children typical life experiences.  Every person who takes the time to learn about food allergies and eosinophilic esophagitis is one more person to help us walk that line.   As Food Allergy Awareness Week (May 9 – 15) and National Eosinophil Awareness Week (May 16 – 21) approach, please take the time to share your story or mine.  Let’s work together to raise awareness about food allergies and eosinophilic esophagitis!

- Kendra Tiedemann