Jake's Journey with Apraxia

And the Friends We Met Along the Way

by Amber, Contributing Writer

Just when you think you’ve got a good grasp on the challenges your children have faced and are ready for smooth sailing, life gives you another twist.

Let me back track. In the past, I’ve written about two of our sons, Cason and Callen. Cason recently ended speech therapy after his apraxia was considered resolved. Callen lost his apraxia diagnosis when it was decided he actually has low tone and articulation issues. Life seemed a whole lot easier the day I walk out of the speech office with that information. I knew we still had work to do and challenges to face, but it was going to be different in comparison to what we went through in treating apraxia.

Then it all changed. Almost two weeks ago, our youngest son, Caden, was diagnosed with a severe peanut allergy.

About a month ago, Caden (14 months old) got a hold of a spoon that had peanut butter on it. He didn’t eat it, but did smear it on his skin. After I cleaned him up, I noticed hives beginning to appear. I tried convincing myself that it was coincidence. He does have very sensitive skin and deals with eczema. I watched for any other problems, but he cleared up within an hour. A week later, my husband had the same situation happen with Caden.

We made an appointment with the allergist. Two weeks ago, he tested positive for a peanut allergy.

This diagnosis hit me harder than the apraxia diagnosis. I remember being very scared and worried when our oldest was first given an apraxia diagnosis, but I also remember feeling like it was something we would overcome. We could treat it. We could find the best therapists, best treatments, and beat apraxia.

I didn’t feel that way with the peanut allergy diagnosis. I felt helpless and like there was nothing I could do to make it go away. I felt hopeless for my son and the diagnosis seemed so final. I kept trying to tell myself other people are dealing with things in life that are much worse than a peanut allergy. I tried to make light of it, but I couldn’t.

moments

Stages of Grief:

I finally realized I was going through the stages of grief. As silly as it seems, I was grieving over the news of Caden’s allergy.

1. Shock and Denial- I went through this after the two exposures to peanut butter. I knew enough about peanut allergies to know that it was the peanuts causing the rash on his skin, but I wanted to believe it was coincidence.

2. Pain and Guilt- I immediately felt this the day I drove home from the allergist. What had I done wrong? Not just to cause the peanut allergy, but what had I done wrong to have another child with another special need? What was I doing wrong that was causing my children to suffer and struggle? The guilt it hard. It still sneaks back in late at night as I’m trying to fall asleep.

3. Anger and Bargaining- This came several days later in a way you might not expect. I was angry that Caden would have to deal with a peanut allergy. I was also angry because it was having an effect on my older son, Cason.

Cason (our 4-year-old) was diagnosed at 18 months old with Sensory Processing Disorder and started feeding therapy for oral aversions. To date, he eats a total of ten different foods consistently. Ten. The problem…half of those contain peanut butter.

So now, we have a child in the house with a severe peanut allergy and have to remove all forms of peanuts from the house. That made me angry. We worked hard to get our child with SPD to eat peanut butter. Now we have to take it away and start over.

Give him almond butter. Give him Wowbutter. Give him Sunbutter. Give him No-Nut Butter. It just isn’t that easy. Those that deal with SPD know that any change in texture, color, temperature, consistency, smell, etc. can make a child with SPD shut down. So far, that has been the reaction we get when we try the other “butters” with Cason. We are trying to find other sources of nutrition, but it has been such a struggle.

There was and is a lot of anger in dealing with the fact that the peanut allergy doesn’t just greatly affect one child; it greatly affects two of our children.

4. Depression, Loneliness, and Reflection- I felt alone and overwhelmed as I stood in the store trying to buy Easter goodies. Reading label after label stating peanuts, may contain peanuts, made in a factory where peanuts are processed. It was overwhelming. Something that is supposed to be fun was turning into something that gives me anxiety. What if I misread the label today or tomorrow or a year down the road? I had to hold back tears so the other shoppers wouldn’t think I was crazy.

5. The Upward Turn- I long for this stage. I feel it coming. It comes in waves.

6. Reconstruction and Working Through

7. Acceptance and Hope

Those last two steps will come. I have amazing family and friends that will help me get there. I have several friends that have children with peanut allergies, and they’ve been amazing at giving me advice and letting me know that what I’m feeling is completely normal. I’ve been here, to Tori’s blog, so many times in the past two weeks reading all of the posts under the Allergies, Eczema, and Asthma tab.

My post today isn’t about apraxia, even though this section of the blog is dedicated to apraxia. I feel that when we first get a diagnosis for our children, no matter what the diagnosis, we all go through a range of emotions. The only other people who get those emotions, are those that have gone through it before. That’s why we read blogs by other parents. Why we join support groups. Why we share our stories. Thank you for letting me share mine.

Bio: Amber lives in South Carolina with her husband and four children. She has two sons diagnosed with apraxia of speech and sensory processing disorder. Her older son also has hypotonia. She is a stay at home, homeschooling mom who taught public school for eight years. In her free time, she likes to read and sew.

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6 thoughts on “Adding a Peanut Allergy to the Mix

  1. Patricia says:

    I live in the “alternative world” as far as health and diet are concerned. In retirement, I decided that learning more about health and wellness would be a good goal. And delve in, I did – – and WOW. The number of books and articles and emails I have accumulated is significant.
    What I have learned, is that there is a constant and rapid growing group of nutritionists, integrative physicians, MD’s of varying specialties, PhD’s and others, who have done significant research and experienced first hand results, and who believe that the health of our gut is truly the source of wellness or disease. Natasha Campbell McBride, MD, has written a book and diet principles to follow. Her book is entitled THE GUT AND PSYCHOLOGY SYNDROME – or the GAPS diet. It is her belief and she is supported by MANY other professionals, that when one’s gut is out of balance, MANY illnesses and disorders result – – including asthma, allergies, eczema, apraxia, ADD, etc etc etc.
    Some of the basics in her protocol include broths to heal the gut, probiotics (there are many and they are well accepted by children), minimizing grains, including cultured foods – kefir – – use it in a smoothie – and goat milk is less likely to be a problem than cows milk.
    If you could find an integrative or holistic pediatrician to guide you, I think you would be surprised at the positive benefits that may result. I have grandchildren – – one who is an extremely picky eater, and one who, because of a brain bleed at the time of his very premature birth, has apraxia. I do understand what a daunting task it is to have a child whose survival and nourishment is your goal and responsibility and when they refuse all except a few foods, risking them eating less due to choices you feel that will not accept is much too much of a battle to imagine embarking upon. However, many who have been picky eaters and who have gone through food elimination and changes, have expanded their palate because of it.
    So – – enough chatter. ‘Just wanted to tell you that there may be a way to benefit all of your children. Peanut butter may not be a frequent item on the menu in the future, but many other possibilities may be. ‘Wishing you well, and hoping that you will find a way to work through the many obstacles you have been dealt.

    1. Amber says:

      Thank you, Patricia, for your comment. We were working with a naturopath before our cross country move a few months ago. There are definitely some gut issues going on with my kiddos. Something we continue to work on and improve.
      Thank you again for the information. I am also hopeful that this food elimination opens up the door for Cason to want to try some new foods.
      ~Amber

  2. witness1615 says:

    appreciate your honesty in sharing where you are really at with this. May God help you as you walk yet another path.

    1. Amber says:

      Thank you

  3. belinda says:

    Prayers for all of you Amber. Tori and I became friends due to acupuncture. My daughter has nut allergies and eczema. we can’t beat the nuts but we can become educated and educate our kids. Don’t like Satan win with all those fears and worry. my niece has a severe but allergy and it doesn’t stop her brother from enjoying things with nuts so it may take diligence and paper products if that’s the only solution.

    1. Amber says:

      Belinda, Thank you for your words. A scripture that I keep turning to is 2 Corinthians 12:9-10 9 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 10 That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.
      You are right. I must not let Satan win.
      ~Amber

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