My daughter Amber came home from the hospital a cold January morning. She was a perfect baby, she ate on schedule and slept with no problems. A week after my husband and I brought her home she began what we thought was colic. She would scream and cry for hours on end, projectile vomit, and had difficulty moving her bowels. Her doctors assumed it was colic and decided to try a soy based formula. This of course did not work and my husband and I spent weeks on the telephone with her doctor telling her that colic was not the problem and in the meanwhile we spent all of our time dancing around our home with her trying desperately to calm her down.
Finally her doctor agreed that she needed another change of formula and changed her to a lactose free formula. This again did nothing. Amber was projectile vomiting so much that I actually had to put a towel on the floor in front of her, a towel over her and a towel over me just to feed her. After yet another visit to the doctor we where instructed to try putting rice in her formula with the thinking that if we thickened out her formula she wouldn't vomit after eating. It didn't work.
At this point my husband and I had run out of options. We had a two year old son that needed our attention and a very sick infant. I called her pediatrician and told her that she needed to see her now and something needed to be done that very day to help her. The doctor agreed to see us and decided that not only did she need a new hypoallergenic formula but she would also need a Gastroenteroligist at New England Medical Center's Floating Hospital for Children.
Amber's doctor at New England Medical Center did wonders for her and our family. Test's where done that confirmed that she was not only milk allergic but had reflux. She was put on medication for the reflux and we where told to continue giving her the hypoallergenic formula. Both did the trick.
At age one her doctor at New England Medical Center decided he wanted to do what is called a milk challenge. The test was done in four steps. Step one was 30ml of formula and 10 ml of whole milk. She passed that portion and we waited fifteen minutes to make sure she would have no reaction. Step two was 20 ml of formula and 20ml of whole milk. She failed that portion. While waiting the 15 minutes to start step three she broke out in hives all over her buttocks and back. We where then given a prescription for an epi pen and told to continue giving Amber the hypoallergenic formula.
At eighteen months we where assured that most children that are retested pass at eighteen months. Amber failed again during the second step of the test. She was then given a medical food to replace the milk she could not have. At eighteen months her not having milk became a huge obstacle. She wanted to eat the foods her brother could eat. She wanted yogurt, cheese, pizza and chocolate. We would actually peel the cheese off of her pizza so she wouldn't feel so left out.
At two and a half we tried again and failed. I was very upset at that point. All I wanted was for her to be able to be like the other child I knew that where her age. I was starting to feel like she would never get over her milk allergy.
At three years old she had her last test in July 2005. This time instead of whole milk we tried soy milk. I was so sure she would pass this test. I was dreaming about her being able to drink chocolate milk, being able to get rid of the horrible medical food and finally being able to eat cereal with milk. She failed before we got to the second portion of the test. Her reaction time had been quicker and more severe than her previous tests which worried and scared not only her father and I but her doctor. It was agreed upon at that point that we would not retest her until January 2019.
Amber did recover quickly from her reaction after the milk challenge. She still has an epi pen and is still not allowed to eat or drink anything with milk or soy in it. This takes patience not only on my part but on hers as well. I have to read all the labels on her food before I buy it or before she eats food. I have to make sure her brother, now 5, doesn't sneak any yogurt to her. I have to make sure that everyone that enters my home knows of her milk and soy allergy and what to do if she does have a reaction. Amber has to deal with not yet understanding why her Peter boy (that is what she calls him) is allowed to have milk with his cereal or why he is allowed to eat yogurt and cheese and she can't. She has to deal with not being sent to Preschool this year because I am too scared to send her just in case a care giver allows her to ingest something she cannot have.
Amber may or may not pass her challenge in January. I hope she does but we are prepared to deal with her not passing the milk challenge. I have begun to accept that she will not be like other children her age but that is OK because she is unique. She is a bright happy three-year-old that is hoping to go to dance class soon and is hoping to attend school next year. She loves to sing and dance and parade around the house with ten necklaces around her neck. Her father and I will not allow her to be upset because she cannot have what others can. I am raising her to know that yes she is different but being different is great!