I am frustrated.
Brian’s body is working against him and I cannot stop it.
I knew when we began this journey that removing food from his diet was the best solution. It has been three weeks and now I am learning that I need to remove even more.
This past Saturday Brian developed a rash on his legs, arms and stomach. Over the next couple days, it has dulled and brightened while also traveling to his face.
Brian’s “team” of doctors consists of an allergist, gastroenterologist and nutritionist. When something happens, I find it is best to contact the nutritionist, who then sends the information out to the responsible parties.
I called and left a detailed message with all of Brian’s symptoms (rash, bowel issues, choking/gagging and spitting up bile). Each concern was then directed to the appropriate party.
Today I heard back from the allergy department.
She instructed me to remove any lotions, body washes, bubble bath, shampoo, etc. that contains any food additives, fragrance or color.
Apparently the Aveno Baby Eczema lotion is doing more harm than good.
She told me that because Brian has issues with many types of food, it is possible his skin is equally sensitive.
Yesterday I felt like mother of the year when I found SpiderMan bubble bath…today I just feel defeated.
Brian and I embarked on a walk to the two closest stores to our hotel (CVS and a grocery store). I spent a very long time looking over all of the lotions, body washes and shampoos. It amazes me the junk that goes into these every day staples of our lives. I was not able to find a shampoo that contained all the necessary qualifications, but I did find lotion and body wash. Hopefully these will be a good place to start.
Tomorrow I will venture a little farther and try to find a Trader Joe’s or other health store that may sell shampoo that is safe for him to use.
Honestly, I feel like everywhere we turn, something else attacks.
Matt joked that Brian really is a “bubble boy.” That thought makes me want to cry…and I have…let’s say it hasn’t been a great day.
I want Brian to be a happy, normal child, and yet now I have to monitor what touches his skin, and not just what goes in his mouth.
This has brought up an entirely new list of concerns, including his clothing and bedding. If his skin is reacting to a wash, then the detergent used to clean his clothes will be an issue, as well.
What frustrates me the most is that these were not issues prior to removing the food. I am confused by the old and new symptoms and want nothing more than for someone to give me answers.
While walking I stumbled across a used book store. Those who know me know there is nowhere in the world I am happier than in a book store. I don’t know if it was driving across the Whitman Bridge the other day or some divine presence from my college days, but I felt compelled to walk inside and ask for a copy of Leaves of Grass by Walt Whitman. This book brought a sense of calm when I was younger, and hopefully it will do the same now.
For now I wait to hear back from the gastroenterologist and hope they can give me more answers, which will lead to more questions.
Until then, I hold Brian in my arms while he watches whichever cartoon has his fancy (Buzz…Minions…Mickey), and read.
I know peace will come. I hope it doesn’t take too long to find us.