Sunday, May 12, 2013

I ain't tellin' you nuthin' (OR how I came to be leary of my daughter's care team in two short months)

This week I'll be blogging every day on a different topic for the 4th Annual Diabetes Blog Week.  I'm very excited to be participating!

The topic for Monday May 13th is: Share and Don't Share

Diagnosis is like being blindfolded…

on a unicycle…
in a hurricane…
while floating on an inflatable pool raft, with an empty cup holder…

and wishing for a beer.

It's been 63 short days since Eleanor was diagnosed with Type 1 diabetes.  We spent 2 nights in the hospital.  So… we've had about two months at home flying solo.

We were impressed and delighted with the inpatient care and support during her stay at Dallas Children's on the endocrinology floor.  Even though the nurses told us we were in the oldest, shabbiest and worst wing, which was in desperate need of remodeling.  In fact, they told us our room was slated next on the remodeling agenda.  We didn't care.  We didn't care, because everyone there was so fantastic.  Who needs a chic room with the latest designer curtains when the people are good?

Diagnosis can be terrifying.  It can be terrifying even for a mama who's been married to a man with diabetes for 14 years of a 17 year marriage.   It can be terrifying even for a Daddy who's been managing his own diabetes for just as long.  And let's face it. "Terrifying" doesn't really begin to capture it, does it?  It's disorienting, discombobulating, heartbreaking, unexpected, and it leaves you flat-out-off-kilter.  It rocks your world.

But those folks at Dallas Children's did a pretty good job of helping us regain our balance and getting us back up on our feet in short order.  Everyone from the medical professionals to the volunteer staff in the playroom were really warm, informative and wonderful.  Shoot… even the EMT who pushed Eleanor's gurney up to her room from the ER had her name tattooed on his arm!  For reals!


After we got home things were not so great.

I began by educating myself.  I bought half a dozen or more books:  Books on parenting type ones; books on insulin pumps; books on continuous glucose monitors; books on nutrition; and books on the history of diabetes treatment, and I learned.  I joined forums and I talked other parents and patients.  I read research studies and I armed myself with information.  I figured out what I wanted for her and I went after it.  I had a clear idea of what I thought was the best plan for her:  a continuous glucose monitor and a pump.  Everything I'd learned supported this.

I called and asked to be notified about cancelations and l I got her in to see her endocrinologist earlier than originally scheduled, because I didn't want to wait 6 weeks to see the doctor again.

We were asked to keep a log of Eleanor's glucose checks, and we did.  We faxed it in once a week, with our own notes or questions.  Then we'd get feedback from the CDEs.

At first, I told them E V E R Y T H I N G.  Seriously.  I sent in two single spaced typed pages the first week.  I practically submitted my personal diary and dream log.  Every thought; every worry; every subtle nuance in her BG fluctuations.  I voiced my concerns; I shared my analysis; I gave my opinion about her treatment plan;  I asked questions.  I even asked for their opinion.  Duh.

Big mistake.  Huge.

Unfortunately.  When I started wanting to move more quickly than they like…  they started pushing back.  They said, "this is not how we usually do things!"

… and I kept being consistent and assertive… they flipped on me.  They turned the information I'd shared with them against me.

I had told them she rolled her eyes.
I had told them she occasionally resisted her injections.
(all perfectly normal, even predictable, behavior)

They told me it was all my fault.  Bastards.
Me with Eleanor and our pet hedgehog, Heggo.

Here I am.  A mommy.  A mommy who's vulnerable, frightened, tired and worried.  A mommy who is clearly extremely energetic and devoted to getting care for her daughter…

A mommy who loves every tiny freckle on her little girl with every fiber of her very being

and they found my soft white underbelly, and drove in the blade with a squeeze of lemon and a twist.

You know what they said?

They said it was because I wanted her to have the pump too soon.  They said it was because I was being too pushy.  They said I was rushing her and she wasn't ready.

What the hell do they know?

So, you know what I did?

I shut up.

And then, I went to a JDRF picnic.  And I told the other Type 1 D mommies about my experience.  You know what they advised me?  They advised me to shut up.

You know what my husband suggested?

He suggested I shut up.

Eleanor and Kenneth at the park
And that's sad.  It's sad because they could have been a great resource.  They could have been a trusted; safe; home-base for me when I needed it most.  They could have won me over, but instead they shoved me away with both hands and reached for something they could never have.


So now.  I don't tell them anything.  I fax in the logs.  I ask terse simple questions without adjectives.  I get straight to the point.  I don't feel safe.  I don't trust them.  They have become adversaries instead of advocates for my daughter.

I've tried to find another avenue for seeking her diabetes care, but I really truly do not have any choice.  I even asked the reps from the pump manufacturers if they could suggest another location for her diabetes care.  I got the same answer everywhere I went.

That's terribly sad, because, while I have the resources and the drive to figure out Eleanor's treatment for myself, not every parent does, and they are treated condescendingly and not given credit, and they may just take whatever is dished out, never realizing their child isn't getting the best diabetes care available.  Have you ever been sufficiently dissatisfied with health care that you sought another physician or team?  Have you ever been in a situation where you only had one choice of teams and found yourself trapped there?

The system at Dallas Children's is broken.  I'm not the only one who thinks so.  Plenty of parents on local groups agree.  They've witnessed and experienced similar exchanges.   I was zealously encouraged to call the feedback line and let 'em know what I really think.  And I will…

But what a tragic loss of opportunity for all of us.


  1. I posted this earlier, but it didn't come through. My baby was diagnosed March 9th so I'm right there with you. Wish you lived here. Our center is awesome and our endo is encouraging us to get a pump as soon as she's on enough insulin to support one. Sounds to me like you're doing everything right. Keep fighting mama bear!

    1. Wow! Our diagnosis days are just a day apart! I wish we were closer too, but! We can be virtually as close as we like!

  2. You are your child's only advocate. Not only is it right for you to speak up for her but it is through you that she will one day learn to speak up for herself. It's unfortunate that your clinic doesn't see that. Keep fighting for the care you feel she needs.

    1. Thanks Shannon. I know I'm her voice right now, and I know no one cares about her more than I do, or has her interest more at heart. I appreciate your kind encouragement. :)

  3. I'm so sorry they made you feel anything other than supported. What a shame. On both the doctors and the other families. It is scary. You did exactly what you needed to do. We're here, we're listening. We care.

  4. Good for you for supporting your daughter!

    1. Thank you, Donna! I will always stick up for her. It's funny what I'm willing to do on my kids' behalf that I might be too shy to do for myself.

  5. It makes me so sad to hear of this experience. I hope the Diabetes Online Community can be that safe and trusted place where you can share absolutely everything and hear "I get it. I feel that way too." in return.

    1. It is terribly sad! I am very pleased to have been warmly welcomed into the DOC. Eleanor has found several pen pals with whom she is exchanging emails. I am thrilled that our friends and family collected money for her to help her get her own Jerry The Bear all these things have made her feel that there is a silver lining. I think the most frustrating thing is the idea of standing policy at the linac down there. I've gotten terribly frustrated with the answer, "That's not how we usually do things." Usually should have no bearing on the personal care I'm seeking for my daughter!

  6. I too distrust doctors and the very people who claim to be experts at diabetes treatment. My endocrinologist only wants to see me once a year. After having a severe low that landed me in the ER last year my nurse had to fight to get me an appointment to see him. He didn't want to since it hadn't been a year yet. I'm not impressed with him at all and haven't made another appointment yet. He makes his nurse do all his work. I love her. Love love love her! So I would rather see her, a person willing to work with me and withhold judgment than an arrogant doctor who refuses to see his patients more than once a year.

    Don't ever shut up! Keep fighting! Your daughter needs to see you do that.

    1. Thank you for your comment! When I speak of "shutting up" what I really mean is saying no more than is necessary to get her the most efficient care possible. It's unfortunate because these professionals are really in a position to be a great support network to encourage good care in their patients.

      It's a little bit like the person who avoids the dentist because every time he shows up, they grouse at him for not flossing… it's NOT the logical way to get compliance from your patience to scold them.

      As far as not trusting doctors. I'm right there with you on that one. That's another entire blog post, but my babies were born at home. I home school them… I'm clearly not big on buying into the mainstream institution. That means a situation like a big city hospital where we become just a stamped out cookie cutter number is especially trying for us.

  7. Relationships suck don't they? And that's what you have with a care management team, a relationship. Sometimes it's beautiful and they empower you without making you feel guilty, they listen to you and to your daughter and figure out how her very individual disease works. I would encourage you to keep researching on your own and keep looking for that team with which you can have a great relationship. As a diabetic that hated doctors for the first six years of my diagnosis, I completely understand the wariness and my heart breaks. I currently receive my treatment from Barbara Davis Center for Childhood Diabetes in Denver, CO (I'm kind of an "old" juvenile diabetic, but they haven't kicked me out yet!) And I love them. The majority of the staff are diabetics and they are so intentional about working with parents and their children on how to best handle their unique disease. They are also huge supporters or pumps and CGMs. And they LOVE children :) It might be a drive, but they have patients drive in from all over.
    I hope the info helps. Be encouraged!

  8. This is your daughter. You are her advocate. Do NOT shut up!
    I've only (!) had diabetes for 8 years. I was dx'd as an adult - an "older" adult. I'm on my fourth endo. (And I fully intend to stick with this one.)
    Have you been to the "Children with Diabetes" site, yet? You might be able to find some suggestions there (remember, I am not a d-parent).
    I hope you find someone you respect.

  9. I don't know if your daughter is ready for a pump yet. I don't mean that in a condescending way at all, it's just that I know very little about either of you and I'm far from qualified to judge. For me, I resisted a pump until year #26 of my 32-year (so far) run with T1D.

    But that's me. If you are considering it, the doctors and other so-called advisers owe it to you to at least investigate the possibility. Learn what they can about you and Eleanor and find out if it's a good route to take. Don't just take a blanket approach and say "no", or even worse, "shut up." That's not right. One size does not fit all, and having another T1 in the family should already put you ahead of the curve.

    I'm really surprised that the pump manufacturers themselves didn't help. Usually they will jump through all the hoops - dealing with your doctors AND your insurance company - to sell their product.

    I sure hope you find what you're looking for. There is such a variety of mindsets out there, there's sure to be a doctor who shares the beliefs that you do.

  10. Hey Scott,

    Thanks for your response. The Pump Manufacturers have been great! And as of this writing, we DO have a pump Rx for Eleanor. Now we are waiting for the insurance to approve or deny. I'm told this will take 3 weeks? (That confused me, because the pump rep actually already gave me the information about our coverage and I already know what our share will be, so why the extra three weeks? I don't know insurance can be very mysterious)

    I also want to emphasize that the issues I was having really weren't with Eleanor's endocrinologist, but rather the policies at the clinic. The out patient endocrinology clinic at Dallas Children's is quite large. They have a "system" that they want to put every patient through, and it doesn't take individual differences very much into account.

    I have learned to begin most conversations with, "Are you aware that my husband also has type 1 (or actually, he has LADA, but I usually say type 1) and that we've been managing his diabetes for 14 years?) I say this because then at least they know we have some experience. The practice is so enormous that I don't feel like anyone has gotten to know us personally, and vice versa. I liked her endocrinologist, but I rarely speak with her. 90% of the time we are dealing directly with a team of CDEs. It's never the same one twice.

    Some of them have been incredibly sympathetic and understanding. Karen, who taught the "Taking Charge" class, apologized to use profusely. She said again and again how sorry she was that we'd been made to sit through a class on using ratios, when clearly we already thoroughly understood them, and in fact were accustomed to using them. I reassured her that it was quite alright, given that we'd come into the class understanding that taking it was one of the required steps for getting a pump for Eleanor. I had no problem with the teacher. I don't think we really needed to take the class, and it's frustrating that we have to jump through the hoops because the hoops are there, and not because anyone gave any individual consideration to our case.

    They have told me again and again and again about how the "usually" do things. I have said, as politely as possible while still being assertive, "It's really irrelevant to me how you "usually" do things. I have one daughter, and she is one patient, and what you "usually" do doesn't matter to me. I want my daughter to have the care that's right for her, and I don't care what treatment plan you do with any other patient."

    So, as I said, the issue is not the doctor, it's the clinic and the standardized treatment plan that the clinic seems to use. And furthermore, there don't seem to be any pediatric endocrinologists in the area who ARE not affiliated with this hospital and this clinic. I even asked the pump manufacturer's rep and he was not able to give me the name of a pediatric endo who does not practice out of Dallas Children's.

    There is one other, but she is not taking new T1D patients. (probably because she's been overrun with refugees from the hospital)

    Thanks again for your comment!

  11. I was diagnosed at 13 months. (Currently in my 30s.) My parents also fought with our insurance providers for the best care and eventually went outside our coverage/hospital. So every six months, we'd travel an hour each way and pay the full co-pay, and I'd have my endo care. Prescriptions were a bit of a challenge, but my pediatrician was pretty forward thinking as well. It wasn't ideal... but we just did it because we had to. But it ended up being the best for us.

    Also - insurance companies can be slow on the upswing for new patients/Rx. I spent about a month trying to get a re-order of supplies that I had used for the last 3 years because my insurance changed.

  12. Hey! I'm a bit behind replying to this, but thank you for the comment. I've really benefitted from reading posts from adult T1Ds who where dx as children. Since my husband was dx at 34, he doesn't have that childhood experience that all of you have. Hearing what you have to say is a bit like looking into the future. Or, at least future possibilities.

    It's not that I'm doing what I do so she'll show gratitude someday, but it it's good to know many of you do. I will do what I can. There is another hospital, but it's in Ft. Worth, and I'm not sure I am willing to drive that far. I have two other children, and I homeschool them, so I do have to consider all the costs to everyone.

    In the meantime, we seem to be nearing the end of our initiation period at the clinic. Once Eleanor is established on the pump, we'll move into a more maintenance phase, and I bet I'll be less frustrated because there will be less occasion to be. Thanks ago for your comment.


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