Wednesday, November 16, 2011

Having a Child with Type-1 Diabetes, and alert dogs.

Back in July 2008 I wrote the following as part of blog (here is the whole post)
And one of the saddest things I've been doing is researching diabetes. I'm reading a fantastic book called 'Cheating Destiny' by James Hirsch. Well written, informative and emotive. I have to admit to being in the dumb majority who assume diabetes is almost cured with insulin whereas now I realize it is only managed. I hadn't even realized type-1 was an autoimmune disease until I read this book. The book outlines research advances and frustrations, gives insights into the medical industry, looks at scientists as individuals, and outlines where funding policies gets in the way of doing actual research. It also talks about people living with the disease--adults and children--and their strengths and personal demons. I can't imagine what parents go through when they first learn about the disease, to take on all the information in one big swallow, while dealing with the reality of glucose monitoring and insulin injections (and whose kid likes needles?) and calculating every little thing their child eats, and weighing it against how active the kids are being and trying to balance that with the changing needs of a growing body. Throw in childhood illness, school, puberty. The pressures must be enormous.

Just thought I'd mention it.

The rates of diabetes (1 & 2) are skyrocketing. Information and support and high-fives for a job well done should be the norm. Don't contribute to the myth that the patients themselves are to blame for getting the disease. Type-2 has contributing factors, but again, information, support and encouragement are needed to help people control this disease. And let's work for a cure.
This knowledge has always stuck with me and that's why I'm donating 15% of my royalties from the sale of EDGE OF SURVIVAL to diabetes research. I thought I'd invite a few people onto my blog this month who live with this devastating disease. Capri Smith is a mystery writer and her daughter was six when she was diagnosed with Type-1 diabetes. I asked her some questions about how this changed her life.
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1) Five years ago your 6-year-old daughter was diagnosed with type-1 diabetes. Can you describe the emotions you went through during that first month? Did you have any idea how hard it was going to be?
The only contact I had with diabetes was type 2. In all of my studying, even getting an MS from the Medical College of Virginia, I never read about type 1. They are two very different diseases. I wish they would stop calling it Type 1 and start calling in Pancreatic Autoimmune Disease. I knew there was something wrong. I woke up one day and knew Kitty was going to die. That maternal instinct saved her life. I remember standing at the nurses desk. They wanted our pediatrician to give us the diagnosis. I was on the phone speaking with her and my body wanted to collapse. A nurse stood next to me. Not touching me but I felt that she was giving me support, mentally holding me up, holding me together. Bless her.
There was an insane amount of information. I had to learn to give shots and I (used to) faint at the sight of a needle.
The hospital did everything wrong and to save Kitty, we ended up taking her home and trying to get her stable there. It was a nightmare.
Kitty didn't respond properly to the insulin and at one point the doctor thought I might be causing the problems (munchausen by proxy??). They sent a nurse to our house to observe my care giving. She said I did everything to the letter and STILL Kitty was having these horrible seizures. They were terrifying.


2) Most of us struggle to raise children. Parenthood isn't easy and we (or is it just me?) don't always handle it the way we should. We make mistakes. Figure it out as we go and hope we get another chance to deal with the situation better. How much harder is it when one of your children develops a life threatening condition?
Triage. I had to put my efforts into life saving. I had two teens - it was their drama time, and here Kitty was usurping their stage. That was hard. I tried to put us all in therapy, and it made everything worse. Until we got Teddy Bear, I'm sorry but I didn't have the energy for boyfriend problems. All of my focus was on keeping my daughter alive. Everything else was secondary. Though I will say that I burned myself almost completely out trying to maintain "normal" and be there equally for all of my family. Friends had to go by the wayside. I had no more energy.


3) Can you describe the impact this has had on your other kids?
Emotionally too hard for me to answer. So I'll pass.
4) I know from reading your blog that your daughter has been close to death several times. How do you cope with the emotional mincer that must put you through?
Well, I shook myself down to a size 0. Though I don't think this is a beneficial diet plan. I kept my focus on making things better. I measured success in very small increments. Again life before Teddy Bear and after are night and day. Before Teddy Bear, I honestly didn't know how I would get through a day. It felt like I was swimming in the ocean towards safety, but there was no visible land. For all I knew I could be swimming in the wrong direction. My family was depending on me, and I just kept kicking my legs and struggling forward.  


5) Sleep is very important to me--I need 7 hours a night to function. Can you describe your sleep patterns?
When Kitty's blood is doing well I sleep from 11-8 and wake up to go check her every 2-3 hours. Once I'm up and dealing with blood issues - doing math to calculate an insulin dosage or getting her juice for a low - I can't go back to sleep. I have to wait to make sure her blood sugar came up and is staying up, or her blood sugar came down properly and doesn't go too low. This is about an hour and a half process. So once there's an issue, I can pretty much kiss that night's sleep good-bye. That's the majority of nights. If Kitty is sick, I need to check her every hour. If I fall asleep, Teddy usually gets me up. 
There are times when I just can't leave the house because I am too sleep deprived to drive anywhere. It can make me cranky and sickly. It's seriously impacting my health.
6) I did a little research into medical alert dogs for my heroine in EDGE OF SURVIVAL and she discusses getting one with the hero after she has a hypoglycemic episode.  Can you tell us about the impact your dog has had on your life? I'm curious how this works. Does he spend all his time with Kitty? Does he slump around the house like an average pooch and spring to attention when her sugar levels get out of whack? I assume he sleeps with her? I see you talk about a certain line of labs from the UK (Wild Rose) being renowned for their blood sugar nose. Are there other strains or is it just this line of dogs? Is their a breeding program because it seems to me the demand would far outweigh the availability.
Our dog, Teddy bear, changed our life radically. Kitty went from have 2 or 3 seizures  a week to having NONE in 3 1/2 years. Since Teddy, Kitty has not had ketones (causing ketoacidosis a life-threatening occurance caused by high blood sugars) and has not been hospitalized. Amazing. Life is more complicated using a dog. We attract a lot of attention - some friendly some not so much. Some welcome some not so much. Disney was a night-mare. No, I don't want to explain my dog to EVERYONE. We've had police called on us, and so forth. It's like having a three year old with you all the time. Kitty has always home schooled - like her brother and two sisters. So Teddy doesn't go to a school with her. He does go to everything else. He sleeps in her bed and "calls" us at night if he senses a problem.
Other breeds of hunting dogs work. I prefer our British lab because he comes from a clean healthy line of intentional selective breeding. We want our dog to have a long healthy life with few psychological issues. These dogs have fabulous noses, great drive, are small enough for public access, soft mouths, excellent temperaments... there's a lot that goes into having a useful service dog.
Demand far outways availability. Diabetes Alert Dogs are pretty new. We are considered pioneers. Wild Rose developed their program after they heard what these dogs could do. They are a fabulous organization. And they are overwhelmed with applications.  
Thank you SO much, Capri, for sharing your story with us. You are a real inspiration. Read more about Capri's incredible journey and the amazing impact her diabetes alert dog has had on her family's life (on her blog).

17 comments:

  1. Toni:
    Thanks for posting a very informative story. Don't think I've ever heard of a diabetes service dog. Diabetes is a terrible disease with awful complications-kidney failure, heart disease, strokes, circulatory and nerve issues. My husband's kidneys failed and he was on dialysis for two years before he passed away.

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  2. Hugs to all who have to deal with this damned disease. I have a granddaughter who also suffers. She has a pump now making life somewhat easier. There were times before the pump she was in the emergency room and hospitalized. Toni is right it is only managed and that with many challenges.

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  3. What an awesome post Toni! Thanks for sharing and Thanks to your Guest blogger for letting us in to her life!

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  4. Ruby--I have another post up on Friday from a friend who is a researcher with some terrifying facts and figures about diabetes. I am so sorry for your loss.

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  5. Rita--I'm so sorry. I didn't know about your granddaughter :( Here's hoping for a cure.

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  6. Doris, Capri was very generous with her answers. Check out the blog post I mentioned if you want to cry your eyes out.

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  7. Toni what at thought-provoking and insightful look into such a debilitating illness. As a type 2 diabetic myself, all I can say is thank you for getting this information out there. It's so important for people to understand the reasons, causes, and things that should and should not be done.

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  8. Toni, Thank you for posting. I didn't know the difference between Type I and Type II diabetes either. Both my grandparents developed Type II later in life.

    And Capri, I can't imagine how you do all that you do, but you've been an inspiration. Thank you for your willingness to share.

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  9. You're welcome Shawna. I am glad to answer anyone's questions about Type 1 or diabetic alert dogs. As I type this, Teddy Bear showed up with an alert - time to check blood. Rita we have used an Omnipod pump from the point of Kitty's coma - a month into diagnosis, what does your grandaughter use?

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  10. Ahh! Coma been there once briefly. They live on the left coast and I’m on the right coast. I’m not up on the details such as the pump name. The one she has now is the third different kind she’s had. Or many one change was to upgrad one. A few years ago I suggested they look into an alert dog. But they decided against it.

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  11. What an amazing, informative and touching post! Thanks for sharing, Capri. Wishing you, Kitty, Teddy, and your family the best!

    Toni, your donation is too generous for words. What a woman! : )

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  12. Hi Capri! Good to "see" you again!

    Everyone, go read Capri's blog, especially the post about life before and after Teddy Bear. My husband has diabetes, but I had no idea how bad it could get in children.

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  13. What a fascinating and informative post. Thanks for posting, Toni, and thank you, Capri, for being willing to share. Wishing you, Kitty and the family all the very best for the future.

    (My word verification is "pawless")

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  14. Hi Leah! - how is it that I did not know your husband was diabetic?

    Shirley - "Pawless" that's too funny. We certainly don't go pawless here!

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  15. Capri, I can't thank you enough for being here and sharing your story. I only hope things get better for you and Kitty and your family.
    Leah is chatting to us next week and I have a good friend who's a researcher and wrote up some brief facts about diabetes (I think that's for tomorrow). My donation isn't much, it isn't enough but I'm trying to help raise awareness.

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  16. Toni - Thank you so much for this opportunity! I think awareness is key. Everyone tries to play down the effects of diabetes and act as if a little shot of insulin, a little self management with food and exercise and life goes on as
    normal. It is far from normal. It is an every day, every hour, every minute calculation to try to stay safe. Having wonderful, caring people like you allowing us to tell the real story - diabetes is HARD - is so improtant. Thank you for the generosity of your time, your attention, and your monitary support for research...you're a diabetic hero!

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  17. I'm not a hero, Capri. You are. Taking care of what matters most--your child.

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