Dear Endos of the World: How ‘Bout those teen years?

May 10, 2011By 18 Comments

This post is the second installment in the really cool, really wide-reaching DBlog week. The prompt was: write a letter. To your disease, to your endo, to someone. Since it’s not my disease, I’m writing it from the parent’s POV.

 Dear Endo Teams far and wide:

First of all, thank you for choosing this career path. I know it’s not easy. We are a needy (for good reason) patient base. We need you all hours of the day and night and need you through many transitions and changes. I know you don’t make a fortune the way some other medical professionals do, so thank you for caring enough to choose this field.

With that, an idea and a request: How about creating a new type of diabetes center or area of expertise: transitional diabetes? I’d love to see entire practices, or at least divisions of practices, completely dedicated to, say, PWD from 15 to 23 or so. The endos, CDEs, social workers and nutritionists would all be focused entirely on the challenges of this time in life, and would work to help PWD and their families through these years.

Because for the most part, we have that for itty-bitties with diabetes (and gosh, there really is no time a family can need personalized support more than then). We have that for women pursuing and going through pregnancy (and gosh, there really is not time a PWD and her family can need personalized support more than then). We need it for this “transitional period” too because . . . yeah: there really is no time a PWD and their family can need personalized support more than then.

We had wonderful, wonderful professional support through my daughter’s first decade with diabetes. We are lucky enough to live pretty close to some top choices in diabetes centers in the world (at least in my opinion, tee hee) and settled into one right off the bat, staying with them for years and years. They helped us be a rock star patient family. But as the teen years came, so did the struggles. I wrote about it here and as you can see by the many comments after, our experience was not unique. We also noticed in that time that while our team did their best and truly cared, the issues that face a teen with diabetes and the crazy psychology around teens in general were not something a lot of practices had a firm grasp on.

Finally, my daughter decided she wanted to move to an adult endo. She said she was feeling weird about the toys in the waiting room and the little kids all around her (which made me visualize Ross of “Friends” in the waiting room at his pedi when he was 30 years old; she had a point I guess). I’ll admit it: I was sad. I wanted to hold onto those early years when our team knew just what to do and it worked well. I wanted to hold onto a child I could  call the shots with too (but reality strikes: Kids grow up. And even the best intentioned kids can struggle with D at this age). We found a world-respected adult endo who had room for her and it’s gone well with him. She has lowered her a1c remarkably and is doing well with self-care in college. Victory. But I have to think: a transition to that would have been nice.

What if you can find a way to kind of “nationalize” the concept of focused care for this transitional period in a person’s life? There must be some practices out there that have figured it out. If you can help teens and their families navigate it better, won’t you be bettering chances for less complications down the road? And won’t you simply be making this all easier to take?

Not an easy task. We ask so much of you all, and here I am asking more. But needy we are. I’d love to see better resources; more focused care and an overall better few years for other families than it was for ours.

Sincerely,

Mom of a Young Woman With Diabetes

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Comments (18)

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  1. Sean says:

    Meeting this need would be a great medical specialty for emdos

    • Maureen says:

      Great idea Moira! Joslin has at least one transitional endo that works in both the pediatrics and adult sides. Justin is seeing her at the pediatrics side of Joslin right now and will likely keep her as his same doctor when he transitions shorlty over to the adult side. But we need more endos like this!

  2. monkeyschool says:

    Wonderful idea! My DD is 12. Can we make it happen soon? I’ve been to wrapped up with the present to think about what’s happening a couple of years down the road. Thank you for the peak ahead…even if nothing changes I will be better prepared.

    • moiracmcc says:

      My daughter used to say “Maybe there should be a boarding school for teens with diabetes — only it’s really a hospital and they just take care of us until we are ready! ha ha. I’d miss her too much though!!!

  3. Vivian says:

    I totally agree. Bravo!

  4. Great post. My daughter is 11 so I spend a lot of time thinking and worrying about the teen years.

    • moiracmcc says:

      Michelle I have learned a lot from my mistakes. I think I’ll do a blog on that in the near future! “How my screw ups can help you!” ha ha. But seriously . . . I think I will.

  5. Jane K says:

    I would totally work in this “clinic” you describe, Moira! I feel called to work with that age group and I love them, with all their quirks :). Bring it on!

  6. Mike Hoskins says:

    What a great idea! I so could’ve used one of these transitional endos in my teen years, rather than sticking with the Children’s Hospital pediatric variety until I went off to college. That would have been so incredibly helpful and beneficial, and maybe could have prevented some of the rebellion I went through.

  7. Jen says:

    Great idea – we are nearing this phase in the next few years and know there is a need for this type of care. Thanks for sharing!

  8. smartDpants says:

    One of my Dr. WonderfulEndos from my #dblogweek post today is Satish Garg MD. He started the Young Adult Clinic at the Barbara Davis Center for Children with Diabetes at the University of Colorado med school in the early 1990′s, when we type 1 kid patients started hitting 18yo and needing decent care, but couldn’t see pediatrician endos anymore. (None of the Dr. Crappy’s in my post today were from BDC, as I only went there a few times for consults in my teens, then found Dr. Garg when I was in college.) Anyway, I don’t know if there are other young adult clinics out there, but there must be. I think the oldest patient they saw at the “young adult” clinic was in her 50′s–because we do keep getting older. And still need decent (dare I say excellent) medical care.

  9. VirtueB says:

    Great idea! Thanks for the letter :)

    V.

  10. Katie says:

    Oh this is a good one. I’d say, from experience, that the top age should be extended to about 30. It takes that long for many, especially those who don’t really “rebel” until they leave home.

    Our first endo kept her patients as long as they wanted to stay, and that was great. But when they go off to college, it would be nice if there were transitional endos out there. Of course, our growing/grown/transitional kids would have to go to the appointments.

    I’ll have a lot to say about parents who “think” that things are going well, when you write that “mistakes I have made” blog!
    :-)

  11. Karen says:

    Awesome letter. I think having an endo practice geared towards teens would have made a world of difference in how I coped with (or didn’t cope – instead avoided) diabetes while I was growing up.

  12. Donna Washburn says:

    Thanks for sharing this! Last August, Sammy’s doctor said “oh, I see you turn 18 in October and are heading to Boston to college next week, time to get a new adult doctor” – in other words, “you are on your own” — such scary words. She was turning 18, moving to a new city and staring college as well as taking care of her diabetes by herself! She is finally seeing a new doctor tomorrow here in St. Augustine (only 2 endos here and NO pedi endos!) He comes recommended by a friend who is a social worker at the local hospital. I hope to work with him to create a pedi clinic here in town. Right now, if a little one is diagnosed at the hospital, they put him/her in an ambulance and send him on the one hour ride to Jacksonville – very scary. Thanks again for all that you do!

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