Frustration

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My sweet angel…

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.

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7 thoughts on “Frustration

  1. Oh Erin. My heart goes out to you and Brain living this difficult situation day after day week after week. I know there is a light at the end of the tunnel. Hard to get there now but some day you will find it. Keep your spirits up.

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  2. First of all, I must commend you for your perserverence and strength. Brian is one lucky guy having you as his biggest support, greatest advocate, and Mommy. Second of all, while we don’t know each other, I want you to know that your entire family is in my thoughts and prayers. Finally, I know our situations are completely different (and I am in no way comparing and you probably already know about this info) I just wanted to share some of the different products that after much trial and error… Works for my son who has multiple food allergies, eczema and dermagraphism.

    After learning of his food allergies which also include oat, we stopped using all Aveeno products that we had been using because of one of their main ingredients being oat. With baths, we found that Exederm works for him. For lotion, CeraVe has been best with Aquaphor at times especially during the winter. Then, although we use only when necessary Vanicream sunscreen has worked. Seventh generation free and clear hand soap, detergents, dish dips, etc are what we are currently using although we used Soap Nuts to clean laundry for awhile. Best wishes and hang in there! You’re doing an awesome job!

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  3. Erin, you’re doing a great job being Brian ‘s mom! Never forget that! You are always in my prayers. What about the “Honest” company ?
    Aren’t their products all natural for babies? Hang in there Erin! Duane and I are sending hugs and hope!😇 we love you!

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