Monday, March 12, 2012

The 5 Stages of Parenting a Food-Allergic Child

One thing dealing with food allergies for 17 years gives you is perspective. I joined my first on-line support board in 1999, so I've seen the same types of posts, over and over, from parents. The moms who make these posts seem to pass through stages, similar to the ones K├╝bler-Ross made famous:

Stage 1: Diagnosis/Panic 

These posts inevitably start with Help!, followed by "my child was just diagnosed with..." They come from all different types of moms:
  • Executive Mom. She's posting to get the list of store-bought foods her child can eat (Where IS it!). She's always surprised, and usually annoyed, to find allergies are going to require quite a bit of work and time. 
  • Traumatized Mom. Having seen a horrible first reaction unfold right in front of her, she never wants it to happen again and she's willing to read any amount of information or change her house in any way to keep it from happening.
  • Perfectionist/Guilty Mom. She knows there was something she did to cause these allergies. Was it the peanuts she ate every day during pregnancy or nursing? The Tylenol she gave for that first cold? Allowing that genetically-modified Cheerio onto the baby's tray? (There's a subset of this group called "Guilty Science Researcher Mom" -- a club to which I personally belonged for years.)
What they all have in common, although they deal with it differently, is that they feel overwhelmed and are looking for a lifeline. Hopefully a support board provides that most of the time because God knows we don't get it from our doctors!

Stage 2:  Adaptation/Coping

This is a very industrious stage characterized by immersion and huge amounts of time dedicated to the allergy:
Is my baby contact sensitive? Do I have to wipe down the grocery cart? What are my new grocery staples? Am I going to be in this supermarket the rest of my life?  How many Epi-Pens do we need? How do we carry them? Can I leave them in the car? Will insurance pay? How do I tell my family about this? Will they believe me? Do we have to label everything in the house? Are we still going to have milk or soy or peanut here, or are we going to get rid of it so we don't have to worry about him? Geez, can I DO without milk on my cereal in the mornings? How are we going to train day care? Will I have to quit my job? 
There's so much to learn! But eventually, parents get to a place where they can take a breath, knowing that their house and pantry and day care situations are under control. The child has not had a reaction. They have some certainty the child will not have a future reaction without something going wrong. Which leads to...

3. Stability/Grief

For many parents, this hits right around age 5. Part of the reason is that kindergarten requires a whole new set of adaptations. However, kindergarten also signals the end of early childhood and, along with it, the hope that the allergies will be outgrown. For the first time, the thought becomes real: we may be doing this - HE may be doing this - for the rest of our/his life.

The thought can be overwhelming and sends some parents back into Stage 2. I think this is how people become immersed in over-the-top precautions. It's easier to stay in the busy adaptation stage and work to keep their kids just a little bit safer than to deal with the feelings of loss that can come from acknowledging your child will always have the sword hanging over his head and there's nothing you can do to make it better, to make him completely safe. Adapting, even if the adaptations are crazy, give parents a sense of power. Recognizing our powerlessness is much tougher.

Some moms get lost in depression at this point. A particular warning sign is obsessively searching for/reading the articles about children who have died from food allergies and imagining one's own child in their place. It's important to recognize that this loss of the ideal future for our children is a real loss and that we have to give ourselves a break while we're going through this stage and get help if we can't move through it.

But move through it most of us do. Only to arrive at:

4. Relapse/Anger

For most of us, the worst does occur again, particularly if our children have multiple allergies. Our child has a reaction. With the reaction, all our planning and defenses are tested and, usually, found wanting.

After the overwhelming fear wears off, we're left with anger. Inwardly-directed anger toward ourselves/our spouse if the oversight that caused the reaction happened on our/his watch. Or, far more enticing, outwardly-directed anger if the reaction happened at school or a friend's house or at day care. (I've seen some really crazy posts from parents who have let their anger toward other society members spiral out of control.) Advocacy efforts can be born from this anger, but it's important we don't lose perspective and only consider our child's needs.

Once the reaction is over and the bulk of the anger has been discharged, many parents move back through Stages 2 and 3. They review their precautions, "batten down the hatches" and grieve all over again for their new, often more restrictive, life.

Note: There's an alternative Stage 4 for children who do not have a reaction they remember, and that's anger toward parents who have put in place (in their minds) unreasonable restrictions. This stage can be very dangerous because teens sometimes take risks as a result of this anger. If your 9+ year old child has not had a reaction they remember, make sure you give them the opportunity to voice their doubts and anger toward you! You may be surprised, if you ask, just how angry they are.

5. Acceptance/Calm

I am clearly not the Buddha of food allergies, but I do think I spend at least some of my time now in Stage 5. But getting there requires courage, every single day.
  • Courage to say "no" to a precautions we do not need. Each family has to hone their own comfort zone. I had to learn to stand up to other mothers who told me I was "doing it wrong" because I didn't worry about the peanut butter on the playground rungs, or gave my child tree nuts he could tolerate despite the risk of cross-reaction, or let him leave his medicine bag outside the room during school testing.
  • Courage to say "yes" to precautions that work for my child. The rule in our house is that, if both parents are uneasy, it's probably a precaution that should stay on the list. 
  • Courage for food challenges. When we started these, I couldn't even be present. Having gone through almost a dozen now, a couple of which resulted in reactions, I know it's necessary. I want my son to truly know which foods are problematic and that means knowing which ones are not.  
  • Courage for treatments. As I've said elsewhere, my son passed a baked milk challenge last summer. Dosing him with milk, knowing he will have symptoms in some cases, is excruciatingly difficult.
  • Courage to add new adaptations (like college) with as little panic, grief and anger as possible. There's no way to avoid going through all the earlier stages when a new situation arises, but I like to think I've found the major pitfalls and avoid them more successfully now. I don't let the negative thoughts get out of control when I envision my child at college. I keep anger toward non-accommodating schools in perspective. 
Of course, if you've read my other blog entries here, you also know how often I fail! After all, I've stalked my teen on a lunch date, trashed my family and friends for their off-hand comments and indulged in daydreams about my child's life without food allergies.

But at least I can laugh at myself about it. And isn't that really as much as we can hope for some days?

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  1. My daughter is 4 and does not remember her last severe reaction and has taken on this "lets just eat it and see" attitude and I'm not sure how to address it with such a younger child. She definitely does already get upset when I don't allow her to eat certain foods.

  2. Yeah, I didn't mean it doesn't start until nine - just that younger kids have less opportunity to be on their own and get into big trouble. It's still hard for kids who have multiple food allergies and no memory of a reaction to understand why they can't eat all the delicious stuff they see their friends eating.

    I've gotten two good pieces of advice over the years: let the child talk directly to the doctor and find an older peer model.

    At least you can take comfort in knowing your child is very bright!

  3. This is a great post! I really like what you wrote and I want to include a link to in my food allergy and asthma blog: Or would you be interested in allowing me to post this blog as a guest blog?

    I think people need to hear this information.

    I LOVE how rooted you are in reality.

    This is just a fabulous post! My son is 13 with peanut, tree nut, sesame seed and is now tolerating dairy baked into foods. My daughter is allergic to tree nuts and your philosophy is right on.

    Let me know what you think and keep up the good work by sharing your life with us.

  4. Of course - please feel free to link or to guest post - whatever works for you. And thanks! although my roots to reality are deeper on some days than others. ;)

  5. I am so glad I found this blog! My son, 5 years old, is allergic to peanut, tree nut, and sesame. Got back his latest RAST results today and unfortunately are worse than 2 years ago, but sesame is very severe. So appreciated a couple of your comments esp. about courage to say no to some precautions, and you gave me insight into the anger he may be feeling.

  6. Color1967, I wrote a post just for you:

    Don't stress about the higher RAST levels. It's all part of the fun and totally expected. Hang in there!


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