Parents Talking Type 1: Emily Nebben

Name: Emily Nebben, mother of Carter, age 16, diagnosed at age 15

Location: Victoria, Minn.

The summer of 2011 will forever be etched in our family’s memory. We began noticing changes in our 15-year-old son, Carter, in April. He seemed distracted, tired, agitated at times and was having strange health symptoms. His grades began to decline, but he couldn’t seem to explain why.

By June, we noticed he was losing weight and thought he might be going through a growth spurt because he was sleeping, eating and drinking more than usual. During football camp in early July, he told us he couldn’t do it anymore—the weight training and cardio workouts were just too much. This was not like him, but we agreed he needed to take a break from training until he got over this “bug.”

It wasn’t until later, on a family trip in July to The Black Hills in South Dakota, that we realized how sick he was. He drank about 12 bottles of water within hours of our drive west. We had to stop every thirty minutes so he could use the bathroom.

When we hiked down to see Mount Rushmore, he could not climb back up the stone staircase—he had to sit on the steps and gasp for breath. When we went swimming at a local lake in Custer State Park we could see his heart beating through his ribcage. We knew we had to get him in to the doctor as soon as we got home.

We arrived home on a Thursday and got an appointment for the following Monday. We didn’t make it that far. By Sunday, July 24, Carter couldn’t get off the couch, so I decided to take him to the emergency room. After giving the nurse his list of symptoms, she said, “Have you considered diabetes?” Actually, we had. Over that weekend we had been searching his symptoms on the Internet and diabetes popped up right away.

He was diagnosed within 15 minutes with a simple blood test showing his blood glucose level at 955. We were told to go immediately to the Children’s Hospital in St. Paul.

We had an immense amount of guilt those first few days, but the doctors and nurses told us to focus on the road ahead. We quickly learned how to count carbohydrates and convert them into insulin units. We have never looked at carbohydrates the same way again.

The first few months were rough on all of us. The amount of medicine, needles, test strips and time spent monitoring Carter’s blood glucose was overwhelming.

Our four-year-old daughter and five-year-old son were fascinated by all the medical supplies and wondered why Carter had to get shots all the time. His brother John would regularly check his blood glucose, too, to make him feel better.

The hardest part for Carter was mourning the end of his childhood and what had been normal to him for 15 years. He would make comments like, “I just want to be a normal kid.”

Six weeks after his diagnosis, he started his sophomore year. It was a whole new ballgame adding diabetes management to his heavy high school academic schedule. He was unable to play football, as it took many months to gain back the weight and muscle he lost.

Now that he is 16 months past his diagnosis, things are under better control, though Carter is still learning every day. Just when he thinks he has a good blood glucose level, he drops low or goes unusually high. We always record his carbohydrate intake and look for patterns, but sometimes diabetes has a mind of its own.

Through it all, though, Carter does a great job keeping a positive attitude. He is about to begin his second year on the high school swim team and is able to manage this and diabetes quite well by making sure he has accessible carbohydrates close to the pool.

Diabetes never sleeps. As a parent, that is one of the hardest parts of the disease to come to terms with. You want to free your child of that burden and give them back their carefree life. However, that is not possible, so we choose to fight for, and work toward, a cure.

We hold on strong to the hope that Carter will one day say to his children and grandchildren, “I used to have diabetes.”

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17 Responses to Parents Talking Type 1: Emily Nebben

  1. Kylee Robinson says:

    I feel like I just read our own story. Thanks for putting my words to paper. My now 14 yr old was diagnosed last summer also!

  2. Maureen Teramo says:

    We can totally relate. My son was diagnosed at age 10 in July 2010 and it is heartbreaking as a parent to watch him struggle at times with this condition. Several times he has told us he just wants to be normal again. It is heartbreaking to hear that coming from your child. He went on the omnipod pump and it has been wonderful. It is much easier to manage for him and for my husband and I. We have done the JDRF walk every year since he was diagnosed. It makes my son feel better to be able to raise some money towards the cure. Hopefully during his lifetime they will come up with a cure for this condition. Best of luck to you and your son.

  3. Jamie says:

    I was diagnosed with type 1 diabetes when I was 7. I am now 54 and am living a fantastic life. I am married with 2 beautiful healthy children. I say this to you because hard work and constant check-ups have led to a very normal life. I too would like to say to my grand children “I used to have diabetes.” Good luck and work hard at taking care of yourself. It is so worth it.

    Jamie

  4. Loretta Merchant says:

    My daughter was 17 when we found out that she was dieabtic. She was drinking a lot and very irritable. We took her to urgent care and they told us that she was having an allergic reaction to a antibotic she was taken. The next morning we had her to the er and her blood sugar was over 1000. They said 30 more minutes she would have been dead or in a coma. Thankfully we got her there in time. She did good the first year, the second year she has been in the icu 4 times. Her sugar stays high all the time. She has no health insurace at this time and is having to go see a nurse practiener. She has to take 4 shots a day and takes her sugar 7 times a day. I feel for you because I know excatly how you are feeling. She also lost so much weight during her time in the hospital that it took 6 months for her period to come back. She is only 5 4 and weighted in at 125.

    • Janice Doyle says:

      Loretta, I have somewhat of a similar story. My Son is 18 years old, and was just diagnosed with Type 1 diabetes. His blood sugar level was at 2000.00, the doctor said; that they have never seen anyone’s blood sugar level that high. I almost lost my son, he went into a diabetes coma. He stayed in ICU for 4 days. He lost so much weight, he only weighted 88lbs. I am currently unemployed, and I do not have any insurance. He has a twin sister, who could possible get diabetes too, so she will have to be check for it too. He has to check his blood sugar 6 times a day, sometimes more, he has to inject insulin 4 times a day. This has been a up hill battle for us. He is so afraid, that he can’t sleep at night, because he’s afraid that his sugar level will get to low. This is a very stressful time for all. I am a single mom, they lost their father in 2008, he died in his sleep, they said it was natural causes. I am so afraid, I try to not think about my son dying like his father. I am trying so hard to remain positive through this. But it is really hard. Unless, I find a job, I am afraid I will not be able to afford his insulin. I am trying to get him on medicaid. Please pray for us! Thank you.

      • Beth Thompson says:

        I will pray for you and your children. My daughter was just diagnosed (at age 21) in early October while 2 1/2 hours away at college. There is nothing easy about any of this and health care costs should NOT be part of your stress!

  5. stacey says:

    Emily,

    Our stories are so similar, my son was 11 and his sport of choice is baseball… However our boys were diagnosed just weeks apart. Joe, like Carter, struggles with the desire to just be ‘normal’. He is blessed to use a CGM and an insulin pump, which have given him some freedom. 16 months into Joe’s new life we continue to have wonderful medical support and are meeting other T1D’s… and praying for a cure!

    Stacey C.

  6. Lori says:

    Great write up. My 19 year old daughter was diagnosed 12.2.10, during her senior year of high school. She was #1 seed on her tennis team-I can only imagine how hard each match was for her that fall! She was in band, taking 2 AP courses and applying to colleges. It was a tough year-I’m sad to say that her AP Calculas teacher cut her NO slack-We had discussed that someone was wrong with her that fall-the teacher complained that she just was not helping her classmates with group projects and seemed very disinterestsed. . . . . I still hold bad feelings for that teacher-she has NO IDEA how Rena’s life changed with the moment the ER Dr walked in the room and said “I guess you know you are now diabetic”……we have came a long way. Rena is a sophmore in college with straight As-working toward a degree in nutrition to become a Registered Dietician, then ultimately a CDE! I am so proud of her. We knew this would be “her” disease and she had to learn to manage quickly as within 8 months she would be off to college (talk about scary for a mom!). We were able to get her an insulin pump a week before she left for college-that was a Godsend for her. Like you, I have comitted to working toward a cure. I have been trained and have taught “Living Healthy with Diabetes” workshops. I have coordinated our own little fundraisers for JDRF-small, but I am pleased that I am bringing awareness of T1D. As the parent of a T1D-I get it! I also hope that one day Rena will say to her children and grandchildren, “I used to have diabetes”….I DO believe there will be a cure if their lifetime-I really do!!! Best wishes to you and Carter!

  7. Margie Greene says:

    Carter and family
    I am a 45 yr old mother of two. I was diagnosed at the young age of 14. The summer before high school started. I can so relate to everything you are going through. I lost so much weight that I was a 70lb 9th grader. I was in the hospital for 9 days learning how to give myself shots. Back then it was two a day and we didn’t count carbs. We calculated our fats, starches, vegetables, fruits, etc. We had to account for everything down to a slab of margarine. We took the same amount of insulin everyday, no sliding scales. It was terrible. I became very rebellious and decided that I was not going to be a diabetic, I wasn’t going to do all the things the Drs. told me to do. I let it go in one ear and out the other. Back then there wasn’t novolog, humolg, or any of the insulins that are out here now. They were all made from pigs and weren’t as good as they are now. There were no insulin pumps or sensors to help with better control. I hated myself for having this disease. I was in DENIAL!!! I did not take very good care of myself for many, many years. When I got pregnant with my first child, which I miscarried, my A1c was a 13. UNBELIEVABLE!! At that point I decide it was time to get it together. I wanted children. Healthy children. The Drs. had decided by then, in order to have better control, you needed 4 shots a day. three were fast acting insulin and the fourth, at bedtime, was slow acting. I agreed to do it all. I wanted to be able to live to see my children grow up, go to college, get married, and have grandchildren. Today I have to say that neither one of my boys, ages 22 and 19, have ever had any symptoms of diabetes. For that I am so very thankful! I am one of the few fortunate diabetics that can say I have never had any problems with my eyes, kidneys, feet, or any of the other health issues that come along with this disease. My doctor is amazed at my cholesterol and other lab results. He says that no one would know that I was diabetic if I didn’t tell them. Science, research, and clinical studies have brought us a long way. If you do not have an insulin pump, I highly recommend it. The best thing that was ever created. Much, much better control. Now they have sensors which go along with the pump and send signals to the pump so that you have readings constantly. You still have to do finger pricks, but there is so much more freedom. I finally, after many years, have come to terms with this disease. My A1c usually runs about 6.0 to 6.5. I tell myself and others, that if I had to chose a disease to have then I guess it would be diabetes. At least I can have a fairly normal life. I can do any and everything that I chose to do. I just have to count carbs, do finger pricks, and eat right. Life could be much worse, I could have so many health problems that are more debilitating then what I have. I am so very thankful to the Lord above that I am as healthy as I am, considering what I have put my body through. If I can offer you any advice…Take care of yourself, listen to your body, do what your Drs. recommend and you will live a long healthy life. Research and science is advancing everyday and there is light at the end of the tunnel. Hopefully, you will be one of the fortunate ones to see that light. Don’t be angry with yourself or anyone else. God chose you because he knows that you are strong and can endure this I always tell my boys that “If God brought you to it, He will get you through it”. He doesn’t let people endure things that they can not handle. You know what you need to do. Go out there and enjoy life, but also take care of you, you only get one chance. Be and do whatever it is that you chose to do. Get an education and educate others. Look forward to a future, without diabetes. But with grandchildren, that’s what I’m looking forward to, after college of course. :)

    Good Luck and Best wishes,
    mcgreene

  8. Kathy says:

    Thanks you for sharing Carter’s story. I’m sure it will give hope and comfort to many other families.

  9. Laurie Entwistle says:

    I am glad I found this information to read, it gives me some comfort. My ex-husband was diagnosed at age 27 with what they called at the time “Adult onset of Juvenile Diabetes”, now I think it is just called type 1 diabetes. He had been loosing weight like crazy and was drinking water and going to the bathroom all the time and finally he was sitting right next to me and started to cry and said he couldn’t see me. I said go to the Dr. That day he called the Dr. and they said not eat anything and to come in the morning and get his blood sugar checked and when he did it was over 1000. They said he should have been dead or in a coma. He was hospitalized for two weeks while they got his blood sugar under control and taught him how to start to take care of himself. He never really could adjust his lifestyle to having diabetes and we divorced in 1990 and in 1994 he died from diabetic ketoacidocis with recent us of cocaine. I think he was tired and depressed and just traded in his insulin for cocaine. We had three daughters together and for a while after he passed away, my girls were involved in a study they were doing at The Barbara Davis Center in Denver, Colorado for people who had parent with type 1 diabetes. I think a coulple of them had one of the antibodies that possible precede getting type 1 diabetes but they decided after while they didn’t want to participate anymore and I didn’t make them. Honestly, even thought I knew that the statistics said that their chance of getting type 1 diabetes because their father had it were 1 in 17 I really never believed they would get it. My oldest daughter was relieved when she had her 28th birthday, thinking she was home free and would not get diabetes like her dad and at 30 she was diagnosed with type 1 diabetes. That was in March of 2012 and in October my 28 year old daughter from my first marrage was also diagnosed with type 1. Two adult kids in 8 months. So much for believing it would never happen to my kids. I have another daughter that is 26 and is going to deliver her first baby any day now. Thanks goodness she got tested for gestational diabetes a coulple of months ago and she does not have it. I feel bad for my daughters and I wish there was something I could do to change what is, but I can’t. I am going to reach out for some local support and encourage them to do the same. Maybe once we begin to move on from the shock and grieving we can begin to see some light at the end of the tunnel or as we say at home let’s look at the donut and not at the hole. Thanks for being out there even though I with your kids didn’t have this disease either.

  10. Jeff says:

    As a former All-State soccer player who played on a top 10 nationally ranked collegiate program I never was very good at testing my blood sugar and found it a pain in the ***. Others around me, family, friends, and teammates would enable me by allowing me to just respond to them by saying things such as, “I am fine” or “my numbers are good”. I would tell them a made up number just to get them off my back and I truly did not know exactly what my blood sugar was at. It took several black-outs and a severe car accident (thankfully it was in a parking lot and no one else was involved or hurt) to get me to realize that I needed to take personal responsibility. As a person who has had Type 1 Diabetes for over 20 years (my story is very similar to Carters) and the events above transformed me and my ability to take action. As Margie stated there are medical devices such as the pump and sensors. In fact, the best thing that has helped me is when I got a continuous blood glucose monitor (Medtronic). Even though it is not 100% accurate it really helps monitor my levels, requires me to test (to calibrate) at a minumum 2-3 times daily, and notifies me if I am trending high, low, or maintaining a healthy blood sugar level. I still have to inject and count carbs (but so do many other people). My past history has been getting lows at night when I am sleeping or at the end of my work day. My sensor is able to let me know if this happens, or if I am trending low/high. While this may be an inconvienence for me at times or to turn off the vibration upon notification, it helps remind me to check sugar levels, and to monitor my levels. I test 6-8 times and have learned what triggers cause highs/lows and can correct much quicker through the use of finger sitcks as well as the continuous monitor/sensor. While there is not a cure yet…working hard at checking levels, eating better, and working to control a healthy range, myself, my wife, my 5 year old, and my friends know that I am safe, have numbers that are in a good range (for me 80-150), and I will not have levels that drop too low or go too high. While a cure would be the ultimate gift, striving to be healthy and checking blood sugar levels is the best cure currently. On the horizon is cures/treatments such as Islet cell transplant (which I believe is the cure that we type 1 diabetics are hoping for) and spreading the word for donors to help us achieve euglycemia which is necessary for successful transplants. I for one, will continue to test, test, test, and make myself as healthy as possible so that when there is a cure, my body will at a healthy level that will sustain islet transplantation.

  11. WILSON ARCINIEGAS BENITEZ says:

    Mi familia sufrimos por esta enfermedad que le detectaron a mi hijo Jeanpaul que en ese entonces tenia 1O años de edad en la actualidad tiene i3,me siento tan impotente al no poder hacer algo por mi hijo le pido a mi DIOS todo poderoso les de la curacion a cada una de las personas que se encuentran con esta enfermedad AYUDENME a dirigirme por el camino apropiado y salvar a mi hijo se los suplico en el nombre de JESUS

  12. Lynne says:

    Did your son also complain of headaches and dizziness? There have been a few other things going on with him that makes me think diabetes but for him its been headaches and dizzy spells that are really sending up red flags.

    • Mom of Two Type 1 Boys says:

      Over a 6 week period, our 11 yr old lost 7 lbs, was extremely thirsty and DID have headaches. Not sure if your boy has Type 1 but all I can say is get him tested ASAP, just in case. We thought our son had the flu or even an eating disorder and waited too long. He ended up hospitalized for 5 days w/ketoacidosis and was traumatized by the whole “welcome to type 1 diabetes” awakening. We could’ve eased his transition into finger pricking, test strips, and counting carbs if we would’ve gotten him to the doc sooner. So if in doubt, definitely take your son in for a check-up. :)

    • Emily Nebben says:

      Lynne, he DID complain of headaches and dizziness. It’s as simple as a blood test and takes 5 minutes at the clinic or anyone that has a blood glucose monitor. Please check. We waited too long and could’ve been very sorry.

  13. donna burnam says:

    Me and my brothers and sister lost our father in 03,do to having diabetes it was very scary to me because i found out my dad was in the hospital and a week latter he pass away. And my mother and sister have type 1 diabetes, so i just keep on getting as much information about this disease as possible. Please understand this disease is know joke, it can shut your immune system down.

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