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strange bedfellows: type 1 diabetes and sensory processing disorder

My seven-year-old daughter, Madeline, has Type 1 Diabetes, an autoimmune disorder that has destroyed her pancreas’ ability to produce insulin. She also has Sensory Processing Disorder, which mainly affects her ability to register and respond to vestibular and tactile input. The marriage of these two conditions is nothing short of a horror show, a fact that is difficult for most people to comprehend.

The best tool available for managing T1D is an insulin pump, and Madeline began to use one about one year ago. It is a medical necessity and has made a significant positive impact on her quality of life in nearly every way but one. In relation to the use of the pump, Madeline’s tactile processing difficulties have worsened. Why? The insulin pump involves three pieces of equipment that essentially allow it to attach to her body, so insulin can be delivered every moment of every day. One piece inserts into her skin—usually on her hips or bum—by way of a thin tube called a cannula, and it is held in place using a strong adhesive. A long flexible tube bridges the cannula and insulin pump, tickling her skin constantly. The pump itself is about the size and weight of an old-school cell phone, and has to be “worn” somewhere on her clothing or body.

Now, when you consider the impact of Madeline’s sensitivity to the fit and feel of her clothing, you might begin to imagine the difficulties she faces in getting dressed every day. In particular, her galant reflex has not integrated properly, causing extra sensitivity in her—go figure—waist and hip areas. So, wearing her insulin pump is truly a nightmare for Madeline. Although she’s adapted well to the sticky infusion set and tickly tubing, the drag effect of the heavy insulin pump clipped to the waistband of her clothing is something she simply cannot tolerate. Because of her tactile sensitivity, she needs her clothing to fit her either very tightly or very loosely—nothing in between. The fit and feel of socks, underwear, pants, dresses and sleeves is a nagging irritant to Madeline. Socks rub her toes the wrong way, even the seamless ones. Pant legs are not tight enough. Sleeves tickle her wrists to the point of pain. The waistband of her clothes also has to hit her waist near her belly button, no lower, and the waistband has to be thick and snug, not thin and wimpy, so it can hold her pump well.

Oh, we’ve tried so many strategies I can’t even keep track of them anymore. She receives regular occupational therapy services to help (hopefully) integrate that reflex, build her tolerance and improve her coping skills for handling her discomfort. I’ve dropped a small fortune in search of brands and types of clothing that she can tolerate; it’s been quite frustrating to me to know what she needs but not be able to find it easily—or usually, at all. Dresses with tights underneath have been our savior, but in the warmer weather her undies are not strong enough to hold her pump well. We’ve tried various kinds of pump belts and pouches designed to hold a child’s insulin pump so that it does not need to be clipped to clothing. None of these has worked: they have been too tight, too lose or just plain old not right for her sensory system. The latest compression sportswear might seem like an option, but it’s difficult to find for young girls. As a result, Madeline’s wardrobe is quite limited, and frankly I could care less about whether her clothes match or keep her in the latest styles. She doesn’t care either: she just wants to feel good, to feel normal.

I’m fairly isolated as far as living with T1D goes; there are no local children or families dealing with this dreadful disease, and so the contacts we’ve made—as wonderful as they are and as grateful as I am—are scattered and exist primarily online. Even worse, I’ve encountered only one person whose child has T1D and SPD. When I try to explain the nasty impact of Madeline’s sensory struggles on her insulin pump usage to her medical team, I have gotten the distinct vibe that they believe that I indulge her preferences too much and that she can’t possibly need so many accommodations to use an insulin pump. Does anyone truly believe that any child would choose such a sensory nightmare? That any child wants to be so poorly regulated at the wrong rub of a waistband or sock? Madeline’s sensory difficulties are heartbreaking for me. The combination of her needs related to T1D and SPD makes her feel like a pariah.

As any parent with a child with any kind of special need knows, you keep searching, experimenting and consulting in the hope that solutions will be found to make your child’s life a little easier. That’s what we’ll keep doing, and I hope that you do as well.

About Heather Garcia Queen

I am… a mother of 3 spectacular children. A wife of an architect extraordinaire. An MSW. A psychologist in an elementary school. A (wishful) writer. A protector of family and spirit. A worshipper of the natural world. A seeker of knowledge. A lover of the arts. An introvert. A silver-lining kind of girl.

Discussion

6 thoughts on “strange bedfellows: type 1 diabetes and sensory processing disorder

  1. I cannot imagine the frustration that must come with dealing with both of these. We have a friend with a daughter who has SPD and I know the toll that just dealing with that takes on her. I know you have probably tried everything, but someone told me about these shirts that have a pocket sewn in for the pump… It’s located more towards the bottom front part of the shirt, so maybe it hangs better than the other pump shirts that are out there? I tried quickly googling it, but couldn’t find exactly what my friend had described (we pump with the Omnipod, so it’s not an issue for us)..

    Good luck with the therapy… I know it has been helpful for my friend, I hope it works for you too.

    Posted by Joanne | 08/19/2012, 3:45 pm
  2. I believe these were what my friend was talking about: http://ryleespocket.com/

    Posted by Joanne | 08/19/2012, 3:51 pm
  3. Hi Heather. My names is Jamie Perez. My 13yr old son has ADHD, Sensory Integration Dysfunction (now called Sensory Processing Disorder), Dysgraphia and now….Type 1 diabetes. He was diagnosed with T1D on 4/21/12. I have very much appreciated reading your blog and I wanted to let you know that you are not alone with SPD and T1D. As you know, this is incredibly hard, but I can not even imagine how difficult it would have been if Tyler had been diagnosed when he was younger. His sensory issues have improved and hopefully, they will for Madeline; but his tactile function is still very poor. He has difficulty testing himself and I can not imagine when he will be able to give his own injections. At least he is still not complaining too much about the nurses and me doing them.

    I’m so sorry you are going through all of this and I’m so sorry Madeline is having such a tough time emotionally. I wanted to reach out to you amd let you know that I would love to be part of your circle of support. Please feel free to email me anytime. And thank you for all of the support you have provided to all of us T1 moms through your heartfelt blogs.

    Jamie

    Posted by Jamie Perez | 08/24/2012, 8:54 pm
    • Thank you so much. Your response really touched me! I’m so sorry about your son’s diagnosis. It’s so difficult to manage it all and i think we need each other’s ears and hearts to make it through the best we can. I’m glad my blog has been helpful to you. Thanks for reaching out.

      Posted by Heather Garcia Queen | 08/25/2012, 12:18 pm
  4. Hi Heather, I stumbled across your posting while doing some research and thought I’d leave a quick reply. I’m not sure in which country you reside, but if Omnipod is available where you live, it might be worth trying. Apologies if this is an obvious suggestion, but may people where I live are completely unaware about this option. It sounds like your daughter can tolerate the adhesive, but not the weight of a teathered pump, this might be an elegant solution. Good luck to you!

    Posted by Sarah D | 11/13/2012, 2:37 am

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