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Allergies, Adulthood and Honesty

Here is another great post from Tristan – not my son, but Atopic Girl. I’m just so fascinated by her and her stories looking back on her childhood eczema. This piece is a little bit touchy for me as it goes up against my beliefs in natural treatments and therapies. I know they don’t always work for everyone, but I’m a firm believer in trying (as it sounds like Tristan’s parents were), as long as they are safe and would not cause any harm to my children. I do want to try to bring you unbiased posts from different perspectives as I believe that’s most fair and I know that not everyone shares the same beliefs as me.

So, with that little disclaimer, here is Tristan’s next post.

My Bio: I developed eczema within a few days after my birth and from the ages of nine to 17, I began to develop other atopic conditions, environmental, animal and food allergies, including eggs, dairy, shellfish and some nuts. Now, in my 30s, I have a good handle on everything, but I’m always trying to see how I can make things better by living a healthier lifestyle.

My background includes public relations and health care communications. So, I use my skills to share my atopic and allergic experiences on my blog – Atopic Girl’s Guide to Living, with the goal of helping allergic and atopic teens and adults, since growing up and dealing with allergies and atopy is a lesson in itself. I also microblog on Twitter at twitter.com/AtopicGirl. When you have allergies and atopy, it’s not just about figuring out what to eat. It’s about finding out how to live well!

—–

As a child and teen with eczema, multiple food, animal and environmental allergies, asthma, and allergic rhinitis, I suffered – literally and figuratively through a lot of doctors’ visits and alternative therapies. Growing up, my treatments were always either traditional – “Western” – or alternative. For the most part, I have had some amazing “Western” doctors who have been honest, open and dedicated. My current immunologist is the same one I had when I was nine and I have such a great relationship with him that I actually look forward to our appointments. Until a few years ago, my dermatologist was also the same one I had as a child and we had the same kind of relationship. Appointments were never rushed. They always inquired about my studies, work or the book I was reading. When I saw them, I was often at my worst, but they never made me feel abnormal. One of the reasons I admire and respect those specialists is because I’ve had a couple of experiences on the opposite side. I have met some rude, curt, disinterested doctors who weren’t willing to go the extra centimetre for me let alone the extra kilometre. As a child and now as an adult, I think it’s vital that a patient inherently trusts and respects their doctors. If they can’t, it’s best to find another one, as difficult as that can be.

All of that said, there is one thing I wish they hadn’t done. I wish they hadn’t told me that I would likely outgrow my allergies and eczema by a certain age – six, ten, thirteen and finally sixteen. While this is certainly the case for many children, it wasn’t for me and every time I reached that stated birthday, I hoped that my allergies and eczema would magically disappear. This is one of the reasons it took me years to come to terms with my conditions and every birthday that passed was a little bit devastating.

The other reason has to do with all the alternative therapies I went through. I probably saw more alternative practitioners than doctors. My parents were always looking for a cure and while it was hard on them, it was devastating for me to continually go to a new practitioner and be told that there was hope for a cure only to never come close to one. I have been to homeopaths, acupuncturists, Chinese medicine practitioners, ayurvedic practitioners and even a chiropractor who thought he could relieve some of my symptoms. My parents chose the best practitioners they could find – some of them respected and visible leaders in their professions. I never experienced a single benefit or measure of improvement.

Additionally, even at a young age I was horrified with some of the advice provided. After conducting the muscle strength test – common in homeopathy – in which you hold a vial of an allergen in one hand while the practitioner pushes down on your other arm, more than one homeopathic practitioner told me I could safely eat a certain amount of eggs a week. It was horrifying, because I had and still have a potentially lethal anaphylactic reaction to the smallest trace of eggs. Now that I’ve reviewed some of the peer-reviewed, scientific literature regarding homeopathy, it is not something I would try. Acupuncture and Chinese medicine became too painful, expensive and none of the claims of relief or cure ever came to pass.

To be clear, I do not discount the importance of supplements or even the use of natural products. I developed a severe allergy to petrochemicals (petroleum, petrolatum, mineral oil) after 20 years of using them and though I understand the logic of sensitization, I disagree with the complete medical opposition to the use of botanicals in skin treatment. I maintain my skin quite well mainly with botanical products. I also believe there may be a place for some alternative therapies in some situations, such as acupuncture for pain management or topical ayurvedic treatments for skin conditions.

However, should I ever have a child with my conditions, and the chances are very good that I will, I would never take them on the emotional and physical roller coaster ride of alternative treatments. In the end, you lose money and, even worse, hope. To be honest, I never wanted to do any of it. I lost hope in the treatments early on and always felt like I was doing it more for my parents’ benefit than mine. I was never too surprised when yet another treatment failed to make any sort of difference.

Now that I’ve come to terms with my conditions, it isn’t always smooth sailing. I have good days and bad days, days when I curse my skin and days when I look in the mirror and take pride in the way I look. Basically, I found a system that works for me. If doctors give me advice that I know from experience doesn’t work for me, I tell them. If they can’t or won’t offer me other solutions, I leave. When it comes to my conditions and everything in life, I am a very pragmatic and realistic person, probably as a result of my experiences.

The big secret to living with all of this is to find what works for your child and to always keep in mind that allergies and atopy are so deeply tied to your child’s mental health as well as physical. It is so important to remember that there are no cures right now and what works for other people will sadly often not work for everyone; so, there has to be a level of honesty and realism when dealing with your child. No one wants to take away hope from a child, but giving them false hope is worse.

4 Comments Post a comment
  1. Carmen Carrion #

    Hi, I am glad to read this post, and I guess my daughter Irene must have felt like her all her life. It is us parents that put our kids through so much trying to find a cure. Maybe it would have been easier to listen to our child…..As a mother, fustration is what came out of 25 years of battling my daughters atopic skin, and allergic reactions. We went through everything that was offered to us…..when my daughter didn´t want to do it……she would be discreet and tryed not to show. It took her 23 years to say I have allergies, before she wouldn´t touch the topic. All she wanted was to fit in….no one was like her…..everyone was “normal”. After 2 years of painting self portraits as therapy…..We as parents and doctors that took care of her, finally realized all the pain, happinesss, fustration, love, and struggle her life has been….those pictures moved me so much……
    Now you must ask why her mother puts up this post instead of her. Well Irene has many more issues than just her allergies….although they are the main health issues….the others are learning problems like discalculia…which makes her see the world differently than us…she does not understand abstraction, time, and space, so math is impossible to understand. She lives the present because she does not understand the past….and is always planning the future so to understand what is happening to her…..the past she does not care for. Nor time is a problem. She understands what is in front of her…not what is abstract. These and many other issues is why I have taken her voice to speak out… And with her battle with this crippling condition that has sent her so many times to be helpless and not be able to care for herself. And it is not easy.. And mainly because we have taken a journey to find a better cuality of life for her….what I have learned in the way, is that I should not have listened to so many people that said they knew the cure… as if it was magic and we did not do anything for her…The other leason is to hear your child, offer a way she can express her feelings, can relax, in a sport, yoga, therapy iike art..dance..singing…find a way to unwind……that is the only thing that helps…creams, medicines, ect… are momentary relief…and the most important a doctor that cares….maybe he does not have all the answers, but can help fight with her……We did find a doctor…he is always looking out for her..
    .Since Irene´s condition is so rare here in Ecuador…and as I found out in the U S, last year, when more than 30 doctors saw her…there are few cases so severe even there. We ended up in the NIH in Bethesda , Maryland…now they are doing genetic research to find out why her body reacts so severe. We have a long road ahead still….
    Carmen Carrion
    from Quito , Ecuador.

    Like

    July 1, 2014
    • Thank you Carmen for sharing your daughter’s story and such great advice. Hugs to you and your family.

      Like

      July 11, 2014
  2. Heidi Foos #

    Rhinitis, specially the perenial type is difficult to treat permanently. you may go through periodic treatment of antihistamines forever. ^

    See the most current short article on our personal blog
    http://www.healthmedicinelab.com/pain-under-left-rib-cage/

    Like

    November 17, 2012
  3. Thank you for your sincere and thoughtful post, Tristan–and thanks for hosting it, Jennifer.

    You make a good point I wish were better understood: there is the risk that an apparently benign alternative treatment can cause harm (esp. NAET) if the practitioner incorrectly diagnoses that the patient can or can’t eat something.

    Like

    March 28, 2012

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