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Writing Book, need info

Discussion in 'Books, Videos, Movies, and other Projects' started by writer mom, Mar 25, 2008.

  1. writer mom

    writer mom Approved members

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    Hi all! I am a type 1 diabetic and a mom ( but not a mom to a type 1 diabetic). I am writing a novel in which a child goes into a coma before she is diagnosed and I'd like some actual experiences to draw on. Specifically, how quickly it comes on and how would an emergency worker know to test for blood sugars if the child is not previously diagnosed. How long does it take to recover, and what is the process of recovery (insulin? IV hydration? Anything else?)

    While I am certainly not hoping anyone here has dealt with that awful experience with one of their children, I was hoping if anyone had, they would be willing to share it with me. It is important that I get all the facts as realistic as possible.

    Anything else you'd like to share about your own fears as a parent for your child, insurance crisis, how your family handled the diagnosis, are also appreciated. I know all about what it is like to live with diabetes. I just don't know how parents deal with it, and since my novel is from the mom's point of view, anything to make it real would be terrific.

    Thank you!
     
  2. Lee

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    Unfortunately, this forum has a rule about posting to such inquires used for research, however, these topics are touched upon in numerous threads - so feel free to browse!

    Also, here is the proper forum to post to:

    http://forums.childrenwithdiabetes.com/forumdisplay.php?f=26

    Hope I am not stepping on any others parents toes hear, but we jsut recently had this discussion!
     
  3. kirish

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    No coma but here's our story...

    My son was 11 1/2 when he was diagnosed. I didn't realize some of his initial symptoms were due to his diabetes coming on. He actually presented symptoms of depression. He was logy, laying around a lot, rather than playing, very grumpy all of the time when normally he was funny and happy; he cried over everything, and he had started wetting the bed. Also, his grades in school began to slide.
    About 3 months into this I notice - literally in one week - that he looked thinner. It was like overnight he had lost weight. I asked him to weigh himself and he had lost 9 pounds! That afternoon he seemed really thirsty - complaining of it even. Still - I didn't clue in that anything was wrong. The next morning I went to check on my kids and he was sleeping on the couch. I asked him why and he said "because I wet the bed again. And mom - could you get me a drink I am soooo thirsty." Some light bulb went off in my head and I called the doctor.
    We brought him in and his blood sugar was 345 and he had moderate ketones.
    Hope this helps you with the early symptoms. We caught it early - they told us that we were probably 1-3 days from DKA. Lucky huh?
    Good luck with your novel.
     
  4. writer mom

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    Becky - I'm really sorry if I stepped on toes. I did read the FAQs for this forum and didn't think I was out of line. I am not promoting any product (there is no product to promote!). I'm not advertising. I'm not even researching for medical facts (I live with diabetes every day... I know the medical facts). I am just asking for personal experiences to help me understand from a parent's point of view, and get a broader range of experiences to draw from.

    I do apologize if I misunderstood. I have read through the posts exhaustively and love the openness of this community. I have found great personal stories here; just not the answer to my question about comas.

    Kris - thank you so much for your reply. Every story of diagnosis I hear gives me a rounder picture. Best wishes for a healthy future to your family!
     
  5. Thoover

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    My daughter Brittney was daignosed 1-19-08. She collapsed on the floor in my house and I rushed her to the hospital. what started out as the flu turned into her diagnosis.

    Right into the ER they hooked her up to the IV and began checking her BG levels. Each meter read TOO HIGH.. Until they reached the 950 meter and it said 950 was her BG reading. She was in DKA and if I had waited 30 more min to get her to the ER she would have been in a diabetic acoma. Below is our story. (this is our letter that went out to support her JDRF walk) You can get the feeling of what happened.

    For those who may not be aware and those that are; January 19, 2007 my daughter, Brittney 9 years old, and our lives changed dramatically. After what we thought was nothing more than a typical cold took a turn for the worse in the early morning hours. My daughter could not move. While I am in DC attending a meeting my wife rushed her to the emergency room.

    Howard County General Hospital took a blood glucose reading of over 950 mg. A normal reading is between 80 and 120. My wife, by herself until my mother showed up, had specific instructions from the hospital to keep our daughter awake at all cost as she could slip into a diabetic coma at any moment (pretty scary stuff). The hospital was lining up a helicopter or ambulance (which ever could get there first) to transport her to John Hopkins in Baltimore. This is when we received the news that Brittney is a Type 1 diabetic or also known as Juvenile Diabetes.

    Type 1 diabetics are insulin dependent. This means they need insulin to survive because their pancreas has failed to produce insulin needed to break down sugars in your blood. If left uncontrolled the excess build up of sugars will destroy the kidney and Limbs ultimately causing death.

    My daughter is and has dealt with this disease better than I probably could. After our crash course on diabetes at John Hopkins, my daughter was taking 6 injections of insulin via a needle a day. Not to mention pricking her finger 8 to 10 times a day to check her blood sugar levels. We have to monitor everything she consumes and keep track of the Total Carbohydrates in the food to make sure we administer the correct dosage of insulin. With the help of new technology and our insurance company we know have Brittney on an insulin pump which gives her insulin through an infusion that has to be changed every 3 days.

    Too much insulin, being sick or growing can and will have an adverse effect. We had one night were she was going through a growing spurt and she went into insulin shock (blacked out) in the middle of the night, her glucose reading was 21. Lucky her body responded by screaming although she doesn't remember. We were able to get some sugar in her system and bring her back. (Pretty scary stuff again)
     
  6. Jeff

    Jeff Founder, CWD

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    I moved the thread to the Books and Other Projects area, which seemed a more appropriate home.

    The post is fine with me.
     
    Last edited: Mar 25, 2008
  7. writer mom

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    Tracy -

    Thank you! This is EXACTLY what I needed confirmation of! I'm so glad you were able to get help for Brittney in time. As a mom I can't think of much more scary than this, and what you live with every day.
     
  8. Thoover

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    You are welcome. Its only been a little over a year with her diagnosis, but it seems like such a long long time ago that it happened. The seazure just feels like yesterday but that was in the summer time of 2007.
     
  9. writer mom

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    Jeff - Thanks! I hadn't seen the Books and Projects forum.
     
  10. Lee

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    Thanks Jeff!

    I didn't mean to offend anybody...
     
  11. writer mom

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    Becky -

    No offense taken! I didn't know if I maybe read the rules wrong...
     
  12. Anja821

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    Our story - REALLY REALLY REALLY long

    Our son, Evan, was diagnosed when he was 2 1/2 and I was 8 1/2 months pregnant with our daughter. My brother was diagnosed as Type 1 while I was pregnant with Evan, so when he started drinking everything in sight and peeing through diapers every 20 minutes, I knew he had developed diabetes, too.

    The pediatrician was on vacation for 2 days so I took that time to record everything Evan was drinking. He was downing 96 ozs a day! When we got into see him, the ped gave us some pee sticks so we could go home to check his urine for sugar and ketones. Sounded easy enough, except we had a child on our hands who (a) wasn't potty trained and (b) was TERRIFIED of the elimination process in general. So, that failed and the ped ordered a fasting glucose test for the following morning. We found out 2 days later (Saturday) that his BG was 87. (On a side note, DS was eventually diagnosed with Asperger's Syndrome, hence the intensity of his fear when it came to toiletting).

    I wanted to take him to the ER but my DH, sister, MIL all kept telling me my son was fine. I confided in my brother and he suspected diabetes, too.

    Two days after getting the test results, we took him back to the pediatrician. He again asked us to get a urine sample and told us to go to the ER if any other symptoms presented. It took FOREVER but I finally got the pee and ran it to the lab. That night at dinner, he started shaking and vomitted. That convinced my husband so off to the ER we went.

    When I told the ER doc that I suspected diabetes, but the glucose test was 87, he did a chest X-ray and a CT scan of his head to look for a tumor which would have indicated diabetes insipidous (water diabetes). When both tests were negative, he reordered the blood test and that's when he found the BG was 957.

    He point blank told us that we had a very sick child on our hands and that he needed to be transferred to another hospital with a PICU. The ambulance arrived around midnight. When he got admitted to the PICU, the nurse kept trying to get an IV in him but every vein broke. There was my child, sick, tired, and screaming/crying because the witch kept sticking him and torturing him. I finally told her to stop. He was just too dehydrated. The ER nurse was able to get the IV in for fluids. This nurse was trying to get a needle in for blood access for the frequent BG checks.

    During all of this, I'm trying to keep myself together because I was 7 days away from having my baby (scheduled to be induced). Is my son going to die while I'm giving birth to his sister? I didn't want to give birth. My ILs got a crash course in diabetes care from 2 people (us) who barely understood it ourselves.

    We all made it through just fine. I asked to be discharged from the hospital early because I couldn't stand to be away from Evan. I tend to favor Evan now that Lohra is out of the overly-dependent infancy age. Is that terrible to admit?

    From a mom's perspective, I'd gladly take diabetes away from him and give it to myself. It hurts me that I can't leave my son with my mother because she doesn't believe in diabetes. She told him after he was diagnosed that she would teach him to believe he doesn't need insulin. :eek: It hurts me to think that if my brother was diagnosed as a child (instead of at 26) he would dead because my mom wouldn't have cared for him properly because of that attitude.:eek: It hurts me when a preschool refuses my son because they "can't" care for him.

    I could go on and on. Having Asperger's on top of the diabetes diagnosis can be a nightmare, but that's a longer story. I'm sure y'all are tired of reading this already (if you even made it this far LOL)

    Thanks for indulging me. I've wanted to get this off my chest for 3 years!
     
  13. bgallini

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    Fortunately I haven't experienced this. Is that what happened with you when you were diagnosed?

    I do, however, have a nightmare/daydream/fear that something like this will happen to my younger son who is not diabetic. The details of my 'daydream' could make a novel in and of themselves. I try to keep my mind on other things so I don't think about it.

    Barbie
     
  14. writer mom

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    Barbie, No, I didn't go into a coma. I actually was old enough to drive myself to the doctor. I'd lost ten pounds in about three weeks, and I was drinking water constantly, which was completely not like me. I knew there was a problem when I had to take water into church with me because I couldn't sit for an hour without drinking, and then had to make an excuse to get up and leave to go to the bathroom and refill it. Also, my eyesight went bad very quickly. I felt like my contact lenses were fogged up all the time. My blood sugar when they tested it was 445, which I think was a fasting test because I didn't have any breakfast that day.

    I sympathize with the nightmares you have for your younger son. I have the same for my own children, even though none of them have shown signs. Both my sister and I are type 1. Genetically speaking, I fear the odds for my own kids are not good.

    But, I am thankful that because I have it and I know all the signs, that I would be able to recognize it well before it got to the DKA stage. You would too, I'm sure! If it weren't diabetes, it would be something else I'd worry about, I suppose. Having kids I think it is like that.
     
  15. Mymeagan

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    Meagan threw up Wed. morning, so she stayed home sick. Matt and I had, had the crud Sun. and she woke up Mon. with a stomach ache, so, we thought she had the crud too. Wed. when she threw up, it confirmed it. but boy was she lethargic and down, not her normal m.o. for being sick, she was in and out of what I thought sleep, now I think consciousness all day and breathing heavy. But the breathing was not respitory, so I thought it was from discomfort (tummy ache). I had been with her in the morning, and Matt in the afternoon. When I got home and she was still breathing, I started to worry, called a nurse. AS I was on the phone, she threw up again, but didn't stir, literally saw dark brown lines on the sides of her mouth (looked like blood). This is when I started to freak. I got her up and told her she was going to the doctor, she yelled and said she was hungry. So, I thought we would get something in her, and she was so out of it trying to eat a gogurt, then she peed her pants stood up, took a few steps and collapsed, went unconcscious/unresponsive. I got her dressed and we rushed her to the hospital in 30 mph winds an blowing snow. Within the hour our Nome hospital had her on an insulin drip, as her blood sugar was 750, and normal is between 80 and 120. She had what's called Diabetic Ketone acidosis. It's when your body isn't making enough insulin to turn your food into energy, so it starts eating your body fat, it's starving to death. She had lost 5 lbs, was hypothermic. We were transported to Anchorage at midnight by Bering Air, the lifeguard flight wouldn't come because conditions were too bad. The local airline flew us in a Casa. We got to Anchorage at 2:00 am and she was in PICU for the next two days, she was on a very slow insulin drip, she was out of it with tubes, monitors, oxygen for two days. Matt's sister spent the night for us the first two days, so we could get some sleep. On Fri. she started to come back to herself, very tired and weak and wobbly legs. Once she was low enough blood sugar wise and was up enough energy wise, she was taken off the IV and the insulin shots began. She's diagnosed as a type 1 diabetic and has to test blood sugar 4 times a day and take insulin 3 times a day. She was back to herself in about two weeks. Actually better than she had been since before Christmas. I could say now, her symptoms began around that time, not as peppy. Peed the bed twice. Had a week where she was routinely hitting other kids, really unusual for her. Waking up every night to go to the bathroom and drinking lots of water. Behavior really became obstinate and
    " bratty" Had excuses for everything, she's four, it's extremely dry here in the winter, she had an emotional change where her best friend wasn't going to daycare anymore, ect...

    Good luck and let us know what your novel is called! Colleen
     
  16. writer mom

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    Colleen, Thank you so much for taking the time to tell your story. I am so glad that Meagan was diagnosed in time.... it happens so fast for little ones!

    The working title of the book is Some Kind of Normal. It is still in the early phases. Every story that people give me lends more detail and more factual basis. Meagan's story is actually very similar to the main character, Ashley. Your details about her treatment are especially helpful at this point to me. I couldn't do this well without the help of people like you who take time to write to me.

    My biggest hope is that this will someday be published and read by someone who needs to know the symptoms, that it might save a life, and give hope to a family who needs to know that you can live a very full and long life with diabetes.

    Best wishes for you and your family as you travel this journey, also!
     
  17. writer mom

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    Thank you all for this information!

    The book is done and has been picked up for publication this winter. It's titled Some Kind of Normal, and many of your experiences were used.

    For everyone that emailed me personally, I will try to contact you when the book is offered for sale.

    Thanks again! What a great, sad, amazing learning experience this has been!
     

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