Milk thoughts....

As most people know, Clare is allergic to milk. It doesn't take much to throw her into a violent reaction. We have to diligently read labels and adapt recipe's to fit her needs. I know what she can and cannot have. My church calling is in the nursery so that I can be with her and make sure she doesn't have an accidental exposure. She had colic as a baby. but it didn't go away. She was constantly crying and had a rash all over her body. Her newborn pooping every diaper never stopped either. At 8 months old she was still exploding out of every diaper. I was always at the doctors office trying to figure out what was wrong with her. I got wrong diagnosis after wrong diagnosis and was treated like an overly anxious "first time mom". The doctor gave no regard to the things I was telling him. After all, he has a degree and I only have instincts. If you ask me a mothers instincts can tell you a lot more than any MD can. A good pediatrician will listen to the mother, even a first time mother. i told him at almost every appointment that I thought she was allergic to something I was eating. I was told that that was very unlikely and to stop eating peanut butter... just in case. After 7 months of begging, I was finally referred to a pediatric allergist. Even he told me that he wasn't sure why I was referred to him. He said that the skin (scratch) test he was going to perform would not be conclusive. He also said that if she was allergic to something it would probably be peanut, so I should stop eating peanut butter even if the test is inconclusive. The assistant came in and scratched her leg with all the allergens an one control. When the doctor came back in we told him that she had a hive on her leg. He said that it was the control. Then we told him to LOOK!!! The control and another one . She clearly had 2 hives. He said, "oh, it's soy." I told him that the nurse said it was milk. He had to call her back in to find out which one it was. Indeed, it was milk. At this time she was 7 months old. It was 7 moths of torture. 7 months of being told that nothing was wrong but my mothering. 7 months of refusing to accept that. 7 months of trying every laundry detergent known to man, every eczema lotion, drying her skin with my hair dryer after baths and diarrhea, screaming and vomiting. Not spitting up, vomiting. I stopped eating anything with milk in it, but she still was not completely wee, so at 8 months i decide to wean her and put her on a soy based formula. I was also 8 weeks pregnant with Max so my milk supply was depleting. My heart is broken for my daughter. Milk is not a common allergy, but it is common to grow out of it. I personally do not think she will. Her reactions are so violent, I have a hard time believing that it will just go away. I also believe that she is allergic to peanut now as well, but it is not diagnosed. She hived up and got wheezy the last time she had a peanut butter sandwich. I hope that it was a cross contamination with milk some how, but I am doubtful. I also encounter a lot of ignorance. I always find myself explaining to people that she is not lactose intolerant, but it is an actual allergy that does have the potential to kill her. Her airways have never completely closed but she does wheeze when she is exposed. Mostly it is scary because you have no idea what the next reaction will be like. You cannot base a future reaction on what the last one was like. In public situations she has to have a sign that I made for her pinned on the front of her. It says "DO NOT FEED ME SEVERE ALLERGY". Sometimes we just skip events if it will be to difficult, like the ice cream social at church. I once babysat for a woman who was very aware of Clares allergy. She brought her daughter over to my house with some snack. She brought cheddar cheese and a sippy cup full of milk. I was very polite and I simply said, I'll give her the cheese, but I'll just put the sippy cup in the fridge and I'll give her some water instead. Well, she did not like that and told me that her daughter would ask for milk. Her next comment hit hard. She said "she is just a normal kid who gets to eat normal food". She said it an a defensive tone. I said "so is Clare!!!" Then I smiled and brought her daughter in the house and told her it would be fine. When she returned I acted as if nothing was wrong and sent them on their way. I never returned phone calls from her to babysit again. i do not need that ignorance and audacity. I wanted to tell her that I was going to bring Clare to her house with a sippy cup of ammonia, just don't let your daughter get to it. Essentially, it is the same. Poison. Of course, I did not say that.. She just got the hint and didn't call anymore. Later she apologized. I know that this is a really long post and that most people won't read the whole thing, but I wanted to write this down. i have a ton more to say but I think that I will make this a 2 part story. So, to be continued.....