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Guest Blog: Sam’s Story

Posted Oct 22 2008 6:20pm

We would like to thank Jodie DiMisa for guest blogging for us and sharing her family's allergy story.

I'm a mother of 3, which keeps me busy enough. But to have a son with milk and soy allergies and severe reflux, life became crazy.

My son Sam was born early and spent extra time at the hospital. It was very hard to come home without my son but I knew he was in the best place to remain safe and become healthy. When the day came to bring him home, it was very exciting buy also a little scary. He came home with a visiting home nurse who could monitor him on a regular basis to make sure he continued to thrive. Shortly after he came home the signs of allergies and reflux started to show. He was cranky and cried all the time, losing weight, a stool after every bottle, spiting up all the time and more. Then he was labeled "failure to thrive." I sat at the doctor's office and cried. No parent wants there child to suffer and not be able to eat. Unfortunately, I was no stranger to these symptoms. My first child Patrick also had allergies and severe reflux.

My pediatrician Dr. Liu was wonderful and knew I had the experience of knowing what to look for. I took several samples of Sam's stools to the doctor and they were full of blood. His intestines were bleeding out and his stomach was a mess. With the positive stools samples, we immediately changed his formula to Neocate. The amino acid based formula is what he needed. Within a short period of time, he started gaining weight back and the bloody stools stopped. As a parent you vow to do anything and everything for your child, so when you’re told your child has a medical issue causing you to have to purchase an expensive formula to eat and survive, you find a way to buy it.

When my oldest son was diagnosed with these same issues, I fought hard with the insurance company. Appeal after appeal, writing letters, phone calls, going in front of a board of doctors and nurses, just to be turned down time and time again. They said since it was formula and that was a means of food, it was a nutritional issue and not a medical issue, therefore not covered by insurance. I felt so defeated and very alone.

When Sam came along I started my fight all over again. Even though he was my 3rd child and I had experience dealing with these problems, it was still exhausting and mentally draining. You feel like you’re the only one out there with a child that is not the "text book baby". The questions of "why me?" played in my mind over and over again.

I ended up having to quit my job to take care of Sam. He was such a demanding baby and not happy 24 hours a day. Between the medication schedule and his medical issues, my daycare provider just couldn't handle him. We then became a one income family with 3 children and the expense was overwhelming.

When I was informed the Governor Martin O'Malley (D ) signed into law that insurance companies now have to provide benefits for families of children like mine and many other families for medically necessary formula in Maryland, tears came to my eyes. This is such wonderful news and parents of these children will now have the help they so desperately need and deserve. I encourage every parent to be in contact with their insurance company to find out about the benefits you’re entitled to.

Sam will be turning 1 in November and hopefully by then will have out grown his allergies and reflux. I may not benefit much from the new law, but it warms my heart that other parents like me with these children will no longer have to fight the battle with insurance companies so they can feed there kids.

Remember, many parents are in your same position and you’re not alone. Just look down at your son or daughter and the smile will make it all worth it.

- Jodie DiMisa



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