Kayla's Testimony

Elijah is 3 years old. He was born with a rare disease called Eosinophilic Gastroenteritis (EG). This means he is allergic to protein. His body sees this as a foreign substance and starts attacking itself. This gets really complicated because even though a food, such as some jars of baby food say 0 protein they are still made up of protein.

Elijah was diagnosed at 5 months old. The first 5 1/2 months of his life was horrible.  We tried every formula and doctors had us making his bottles so thick with rice cereal.  At first the doctor said he had colic and then it was reflux. He did have reflux, but it was one of the symptoms of this disease. Nothing helped, not even medications. Actually, the medications made him worse.  His symptoms were throwing up, water diarrhea, screaming for hours and hours, staying awake 14 hours straight and screaming.

Elijah was checked in the hospital at 5 months old to have a PH probe and an endoscope done. It was to be just for one night. After the scope the doctor came out and said he couldn't go home. He wasn't sure what he found, but didn't want to let Elijah leave before he got the biopsy slides back. When he got the slides back and came to the room to tell me what was wrong I had no idea what he was talking about and did not fully understand, but just thought the new formula was like any other and he'd be fine. He told me they were putting Elijah on an elemental formula and we had to have a supply of this very expensive formula at home before Elijah could go home. The doctor called the formula "liquid gold" little did I know the formula was $40.00 a can and I had no idea Elijah would soon come to drink a can a day of this formula.

We took home a new baby from the hospital and at almost 6 months old, Elijah had his first solid stool. We were telling everyone as if he had gotten up and walked!

This doctor had diagnosed his "condition" but had never treated anyone with it. Soon he had us feeding Elijah foods and the nightmare began again. This disease had not received much research and there just wasn't a lot up information out there on it. I still had no idea about the disease and was just told he had a "condition".  We were feeding Elijah all kinds of baby foods and he was so sick. I took him to an allergist who said to feed him organic foods. I was boiling organic rice and putting that in a food processor and he was still sick. We tried all organic vegetables and had no idea what we was doing to his insides.

Now it was time for me to find out what was wrong with my baby, so I got on the internet and did some research. I knew the doctor found excess eosinophils in him, but did not know what that meant. There wasn't much on the internet at the time, but I did find out a little information, although I still didn't fully understand it.  Even today I still find this all hard to believe.

We began to take Elijah to GI doctors across the south, none of the doctors had any real experience with the disease, most had read about it. They would ask us what foods we had tried and then tell us what else to try. We would leave thinking this was going to be the magic food. I knew he was better when off foods and on Neocate only, but I wanted to find out what foods he could eat. We were finally told he may never eat food. I had a hard time excepting this because I had never heard of anyone who couldn't eat food. I knew of allergies and some people were allergic to certain foods, but to all foods? So we continued to try foods still not knowing what we were doing to his insides.

As he got older Elijah began drinking a can of this $40.00 formula a day. It was costing us $160. every 4 days. I was able to get him on WIC, they gave 9 cans of formula a month. Most months have 31 days so that still left us to buy 22 cans. It was costing us $880 a month. What about anyone else in the house eating or us paying any bills? We barely had enough to buy us groceries and pay just the bills to keep utilities turned on. I tired over and over to get Elijah on Medicaid and kept getting turned down. I wrote letters to the governor and everyone else I could think of.

Finally after many nice but nasty letters telling what I thought about our system we got in for an interview for Medicaid with the head man, but was told our income was just a little over their cut off amount. The only way we could see helping ourselves was for Jody to ask for a cut in pay. His bring home pay was just buying formula anyway, so really that would free up that money to pay bills. So we get him on Medicaid only to find out none of the pharmacy's would order the neocate on Medicaid.  We then found ourselves with a cut in pay and still buying neocate.

The pharmacies claimed Medicaid would not pay for the formula, we found out later that ordering this has a ton of paper work to go along with it and the amount they got paid from Medicaid just wasn't worth it. Someone we knew asked their little mom and pop pharmacy if they could order the neocate and after hearing what all we had been through they did. I pray God will bless them greatly for doing this for Elijah. We later found out that we had to still jump through hoops and tons of paper work to keep Medicaid paying for the formula. I have been and I guess I still worry about the pharmacy getting tired of all the paper work and hassle they have to go through.

Through the internet I found out about a GI doctor in Ohio who is doing research on this disease. I got in contact with him and had all Elijah's medical records and his slides sent to him.  He looked them over and asked us to come see him.  Ohio is a long way from Louisiana and I didn't know how we would afford to go at all. Then I find out our stay may get lengthy. We did fund raisers and held singings to raise money. I had so many rummage sales I don't even like rummage sales anymore.

In April of 2001, we went to Ohio and ended up staying 5 weeks. Dr. Putnam told me food was poison to Elijah's body and his neocate was his medicine and he had to stay on it to live and that he will be on neocate his whole life. He told me Elijah will never be able to eat food. When he scoped Elijah, he found bloody spots and erosion damage caused by the food we had been feeding him.  At the time, I thought the doctor was so harsh and ugly in his talking to me, only because he was telling me what I didn't want to hear. I wanted to go to this doctor and have him give us the magic cure. Now I see Dr. Putnam was only trying to make me understand.  Dr. Putnam said he needed to see Elijah every 6 months, but there is just no way we can go back that often.

We have tried a few small food trials on our own since we are praying Elijah will be healed from this disease, but we haven't had any luck so far. Also Elijah is not able to take any meds by mouth. For him to get a cold is a big deal for us because he can't take anything to help him breath better or for any relief. Elijah had delayed speech which we think was from not being about to eat and work the muscles in his face. He had speech therapy 4 times a week for 2 years and is now talking and has caught up.

Since this formula taste so bad we have to buy special flavor packs to add to it. These are not covered by Medicaid and cost us $200 a month. We are very thankful for Medicaid, they pay for $1000. of his neocate and that leaves us with a little over $200. for formula.

For Elijah to drink enough formula to maintain his weight I give him a bottle about every 2 hours day and night. Here lately he has dropped of on the amount of ounces he drinks and has lost weight. This concerns us and we are afraid he may have to get a feeding tube.

We are looking at going back to Ohio very soon. I have been in contact with Dr. Putnam and he wanted me to make an appointment right then, but we need time to raise money for the trip.

Living in this world that revolves around food is very hard for Elijah. He is faced with food or candy just about everywhere we go. It is very hard for him to see other kids eat. Just because he can't eat food doesn't mean he doesn't want to eat. I have to keep a close eye on him at all times. He has snuck a sample or found a crumb or even gotten into the garbage can before. It made him sick, but he still wants it.

Sometimes it breaks my heart to think of him never having a birthday cake or never being invited to a birthday party but I know that is not the worst thing in life. For his birthday we help him make a play dough cake and let him blow out candles on that.

Elijah complains of his stomach hurting everyday and throws up several times a week, but he is a happy boy who loves to play. He is really into reptiles and calls himself the "Crocodile Hunter."  He is such a joy to us.

I sure hate that we had to find out about this disease called EG, it has changed our lives in so many ways, but it has also made me more aware of other special needs. They say God won't put more on you than you can handle, I have questioned that many times when I was so down and frazzled not knowing how I was going to make it day to day. We have been mentally, physically and financially drained, but God has always been there for us.

Please continue to pray with us that Elijah will someday be healed.

Elijah's Story

Kayla's Lapbooks

Jody and Kayla Miller have been married 12 years. Jody works at Palmetto Addiction Recovery Center in Rayville. Kayla is a stay-at-home mom and home schools their oldest child. They have 2 children. Dakota is 10 and Elijah is 3. They are members of New Light Baptist Church on Prairie Rd. in Monroe.

If you would like to contact the family to let them know you are praying, you can.

If you would like to make a contribution, there is an account set up in Elijah's name at:

1420 Natchitoches St. • West Monroe, LA

387-4592

or

2831 Louisville Ave. • Monroe, LA

362-0015

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