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Finding out my son is a type 1 diabetic!

My son was 7 yrs old and very sick. We didn't know what was wrong. He was getting up a lot during the night to pee, extremely thirsty and hungry, but losing weight also. "Shouldn't he be gaining weight, with how much he is eating", I thought. I knew something more was wrong so I made a doctors appointment for him. When we arrived, they checked his urine for Keytones, suspecting diabetes. Keytones were present and within 30 minutes we were at our local children's hospital (A. I. DuPont). He was in ICU for 4 days with a 855 blood sugar and in DKA. He remained in the hospital for another week while my husband and I went through extensive training and education classes so that we could care for him. His diagnosis changed our world forever. I frequently share T1D symtoms and signs on my Facebook page in list form because I believe if I was aware sooner, I could of got him to the doctors before he got so sick. He is a thriving 9 yr old boy now and is doing great. He plays flag football and baseball. He is on a CGM (continuous glucose monitor) and next will be an insulin pump. This is our "new" normal life. Some days are tough and some days we get things right. His diagnosis has made us closer as a family and forced us to eat healthier. I try to keep in mind that he is still a kid and can have treats and snacks like any other kids, he just needs to take insulin for those snacks and treats. We created a fundraising team, Nix Type One Nation, and last year we raised over $7000.00 for the JDRF one walk. We hope to double that amount this year. We simply want to do anything we can to raise money for research and eventually find a cure in his lifetime. I truly believe that will happen.

my best advice, Know the signs/symptoms of type 1 diabetes.

helene
west chester, PA

Clinton Cole

My son Clint was diagnosed at age 2 with Juvenile Rheumatoid Arthritis so we were used to medical issues. He had frequent flares through out childhood and early teen years. So it wasn't a shock when he woke one morning with a terrible stomach ache and joint pain. He described it as the worst pain he ever felt in his life. We rushed him to the emergency room. It was late August and a week from starting his junior year of high school. He had emergency surgery to

remove his appendix but the doctors were concerned because they found large amounts of sugar spilled in his urine. They checked his blood and found and elevated A1C. However, at that point they believed it was attributed to the trauma. This because cortisol is produced when the body is under stress. So, we were told not to worry about it. However, Clinton was never right after the surgery. He became angry easily, slept constantly, suffered from constipation and headaches and frequently urinated. The amount of water he drank was ridiculous. The pediatrician said he was probably in a flare and didn't seem concerned. Then on Christmas Day we were at my mothers. He hadn't eaten much and he suddenly started yelling at all of us. He was pale and didn't seem himself. My husband and my father are both type 2 diabetics so we tested his sugar. It was almost 300 without food. We came home that night and I planned to take him to the doctor in the am. In the morning he was 430. I was told to take him to the children's hospital two hours away immediately. He was diagnosed on December 26th and spent the next 6 days in the hospital. We were lucky because we got him there early, before any serious issues could arise. Yes he is now on life sustaining insulin but he refuses to be known as a diabetic. He's Clint with diabetes. It's just a part of his life.

Jill
Milford, DE

Story Of Shyheem

Hello Everyone I Remember It Just Like It Was Yesterday. My Son Was Diagnosed With Type 1 Diabetes At The Age Of 8. I Was Coming From A Trip My Mom Called Said Shyheem Was Not Feeling Good She Said He Was Not Hungry But Very Thirsty Which Was Unusual Because He Loved To Eat. When I Got Home I Noticed That He Had Lost Some Weight In Just A Day His Bones I Could See And He Was Urinating Alot. I Took Him To The Hospital They Didn't Do Much They Diagnosed Him With Bronchitis And Prescribed Him Some Medicine And Said Give Him Plenty Of Orange Juice I Did Just That The Next Morning He Was Worse He Couldn't Walk And He Was Skinnier I Took Him To His Primary Doctor That When She Found Out He Had Diabetes She Sent Him To The ER His Sugar Was To High To Tell When We Found Out It Was 1055 He Was Air Lifted He Was Bad Off Diabetic Keaton Acidosis They Airlift Him To Vidant They Worked On Him And Thank God They Got Him Back Right....His Life Now Is Full Of Challenges But Were Making It Keeping Up With Appointments And Controlling Blood Sugars....

Juanita Mercer
Wilson, NC

Justin's story

My son was born with Down's Syndrome, and miraculously survived open heart surgery at 8 mos old. It was also a miracle that he survived his first 8 months. He did very well in spite of other diagnoses thru the years, but at 10 years old was diagnosed with an autoimmune thyroid. He was able to complain and tell me his legs hurt, and I had also noticed through several weeks that he was thinner than the norm for him, thinking this was just his hereditary genes. However with dark circles under his big brown eyes, I became more concerned. So off to the doctor we go. Roughly a year later at 11 years old, and while getting ready for church one Sunday, Justin helped himself to 8 donuts setting on the table. This was not like him, but I thought he must have been extra hungry. Still through the day, I noticed something was off with him and decided to take him to the doctor on Monday. It didn't dawn on me until we were on our way that he possibly had diabetes as he had an unquenchable thirst. Having given him milk, juice, and water, before leaving the house, and he guzzled down on our way. A red light went off, and I felt so dumb at that moment. I did think he was coming down with strep as I also noticed a medicine type smell from his breath...then a rash was forming in and around his mouth. This was from ketoacidosis onset. We were immediately sent to a children's hospital where diabetes was comfirmed with a blood glucose level of around 600. He is now 26 years old and doing very well. It may be a bit easier for me in that I am the one that monitors his diet and insulin levels very tightly. Mostly, I just feel this special young man has a very special guardian angel. He has never had one seizure, and didn't go into one when diagnosed.

Anonymous
Gurnee, IL

Christopher's Story

At age 8, Chris was having on and off stomach aches. We got a note from school to have his eyes checked because he wasn't seeing right. To no avail the eye doctor said his eyesight was fine. Then about right before his 9th Birthday he started showing signs of more frequent stomach aches, and frequent urination. His thirst was insatiable , but as soon as he drank he had to urinate again. He was very tired also. His symptoms seemed to abate a bit. On his 9th Birthday I called his pediatrician and told him of his symptoms and he told me to bring him in immediately. The doctor said it could only be one thing, and a simple urine sample in the office would confirm the diagnosis. His urine tested positive for sugar. He was directed to the endocrinologist down the hallway immediately. As we had prior diabetic training with his Grandmother he did not have to be hospitalized, but he had a blood sugar that day of over 1000. It was a world wind day for all of us. We attended diabetes training classes at Helwig Diabetes Center in The lehigh Valley Hospital. We thank God for their support and Chris is now on a insulin pump and a healthy 24 year old, with no signs of diabetic damage to his eyes, feet or body systems. In retrospect the signs were there, just not all the time at one time.

Shelly Kilpatrick
Coopersburg, PA

Nuerotic

I thought for a month that my five year old son had diabetes, he had just started school, began to lose weight and was very tired, I took him to my GP on numerous occasions each time being given a different diagnosis, oh he's tired because he's just started school!! I had old my GP about his weight loss and tremendous thirst! And other tests I had done myself one of which was tasting his urine one night after I found him drinking from the tap in the bathroom. Oh well ! All children get thirsty I mentioned the other signs he didn't take any notice of my concern. Until one day I received a phone call from his school saying he wasn't feeling well, I picked him up from school and made an appointment for him to be seen straight away by my GP. I took him to our surgery and when my GP saw me there again with him he said I was a Nuerotic mother!! I told him to test my sons urine and blood, which he did, he was shocked at the results in front of him and told me to take him home he was going to call an ambulance, yes he did have diabetes and there the nightmare began.

My sons life and our life was turned upside down, he was the youngest diabetic the hospital had seen.

My son is 35 now and there have been many many times in his life that I have wondered how he carries on due mostly to his bad control of his condition, diabetes has taken away his confidence he is afraid to move on because of this condition 30 years my son has had diabetes yet in all that time there hasn't been any advancement in the treatment of this cruel condition.

Bernadette Gonzalez
Cheshire, United Kingdom

My diagnosis

November 21, 1985 my mom knew that at 10 years old I was a bit extra sassy, was not sleeping at night, was losing weight and was drinking more- this was not normal for me. She would not let the doctor ignore my 7 days of symptoms and that day they tested for mono and diabetes. At around 4:30 we got the call that I would be admitted in the morning to the hospital to start my journey. My glucose level was barely 200 but diabetes was the answer. My glucometer was not covered by insurance back then and cost my parents $600- I needed a huge drop of blood on the strip, the blotting and the lancing device looked like a torture machine to a child! They discharged me with instructions to my parents to weigh and measure my food and I was on a nearly 2000 calorie diet at 10 years old and only 100 pounds! I can't believe that when I know how we do it now. As a nurse, my passion is teaching others how to manage their disease and not to let their disease defeat them.....this is a challenge, a puzzle. And every single one of us responds just a little differently to our therapy making the stories even more intriguing.

Theresa Woolever
Clinton, WI

My Hero

My son, Justin, nine years old and in third grade told me he had to get up many time in the night to go pee. I thought he had a urinery infection, as I knew nothing about Type 1 diabetes. I scheduled him an appointment with the doctor later that week, but then received a call from his school nurse telling me that he was showing symptoms of Type 1 diabetes. Thank God for her call. I got him right into the doctor and his blood sugar was over 900. Next day we were at the wonderful Barbara Davis Clinic in Denver, CO learning all about diabetes and how to care for our little boy. Justin is now 18 and I am so thankful he is still with us... He truly is my hero!

Renee
Cheyenne, WY

Kendalls Story at age 6

This is about my Granddaughter Kendall, She and her mom live with us. When she was 6 years old, We were confused by a sudden weight gain and loss of 20 pounds up and down in one month. Then the whites of her eyes were yellow one morning. We didn't know what to think of that so we took her to the ER where they rushed her into ICU after a finger stick. She had had frequent urination and her feet going numb for at least a year before that but her Doctor shrugged that off with no tests when we told him. At the hospital they found she was in Ketoacidosis. After 10 days in ICU she was released but that was before they could regulate her BS levels .. Her levels remained unstable for 2 yrs up and down between 50 and 500 Seeing endo after endo. until the Joslin Clinic in Boston Massachusetts agreed to see her even though they did not take her NH health insurance, Then the clinic even took her on as a patient at no cost so they could help her and also to study her rare condition of insulin resistant type 1 diabetes. She was given a pump and within a year they managed to keep her levels hovering around 200, which is as good as it gets for her. We do carb counting and the pump does the rest. She is 16 now and has managed to stay healthy. She does a finger stick every 2 hrs and always before food or exercise and her mom checks her in the middle of the night. She wakes with panic attacks often when her levels are low. She worries that she just wont wake some day. We worry about that too.

Leona
Titusville, FL

Jeffy- et al

In the fall of 2000, Jeff began vomiting for no apparent reason after eating- and then be okay. FFWD to Feb 2001, a double ear infection was treated and soon after the out-of-nowhere bed wetting began. Unable to go 30 minutes without a bathroom, I took him to the dr and we narrowly and surprisingly avoided DKA with a BG topping 850. He's 21 and finally out of the horrific puberty trials T1D parents share.

In July, my boyfriend's 10 year old was admitted in DKA because an urgent care clinic doctor failed to grant a request to check her BG two weeks prior (at my urging to her parents), and sent her home with a yeast infection that he seemed to find unremarkable.

Now- my youngest is showing extremely early signs. I've been fortunate to have access to BG meters and have caught BG's that bounce in and out of range and I took him to his doc. His A1C is approaching out of range. It's nearly a forgone conclusion he will develop T1D in a couple of years. It was a whim that made me catch him with a BG near 50. One of 28, and one in 150's.

My point is this: well child checks should include a harmless and quick A1C. Parents can know the symptoms but typically only do when a family member has suffered. Doctors, on the other hand, have access to means of checking at all routine appointments and physicals. Further, if a pharmacy can give a flu shot, maybe they can offer a finger stick too. This disease is quite easy to catch. There is no need for a misdiagnosis or missed diagnosis to land a kid into critical care.

God Bless them. God bless all of ya.

Becky
SLC, UT
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