Diagnosis Stories

[Merry]

Hi Kim!

It is so nice to find others dealing with the same issues! Thanks for letting me know as there is no one in our area who has the dual diagnosis. Lets keep in contact!

[cgbphp]

My son is two years old and he was diagnosed in June. I have seen other nurses on here that feel the same way I do.....I mean I am a nurse I feel like I should have noticed the signs and symptoms.
It was a typical day with my kids. I had picked up an extra shift at work so my mom was going to babysit for me. I got the kids awake and dressed and made breakfast. Hayden wouldn't eat he maybe had a half of slice of toast. This isn't unusal for my children if the don't feel well with both of them if the don't feel well they won't eat. He layed around watched cartoons. I assumed he just had an upset stomach since he had no other symtoms. I left for work at 1pm and at 5pm my mom was calling me at work saying that Hayden couldn't keep anything down and all he wanted to do was drink. I told her to take him to the E.R. Those symptoms still weren't signaling the nurse in me. If that would have happened at work I would have done a B.G.L right away. I don't know if it was just the fact it was my child that it wasn't clicking with me. I was still thinking it was a virus and I couldn't get anyone to cover my shift so I stayed at work my mom called me with an update and told me that they checked his blood sugar and it was high. Then it hit me I knew I asked how high and she wasn't sure, because the glucometer had read high and they had drawn blood and it wasn't back yet. I got off the phone called my boss and told her I was leaving! I waited for the next nurse to come releive me and while waiting for her to arrive my mom calls me again and tells me haydens blood sugar was 1071!!!! I rushed to the hospital where the E.R doctor had been in contact with our Childrens hospital and he informed me that Hayden was being transferred via squad to childrens. We arrived at the Childrens hospital and were directly admitted to ICU. We were in the hospital for 4 days. We are now almost three months in and Hayden is getting ready to go on a pump. Its been a uphill battle but we are getting through it and Hayden has adapted very well. Looking back on it there were more symptoms leading up to it and I just didn't connect the dots. A few days prior to dx. he had just stood and cried and didn't want anyone to touch him at all. Also he was wetting through his diapers at night again.

[MamaLibby]

Ella was born in June of 2001, and was a happy-go-lucky, calm, outgoing, bright, sunshine-y little girl. She was a great baby and a sweet toddler. I got pregnant with her brother Caleb shortly after she turned two.
I guess her symptoms really became noticeable about 3 or 4 weeks before, when she was 29 months. I was pregnant and we went to a friend's for dinner. Ella drank, and drank, and drank, and ate nearly as much as my friend--a large man in his mid-20s! We changed her diaper at least three times while we were there, and she was soaked through. I was mortified we'd gotten my friend's couch wet! That'd never happened before. Ella also began having tantrums, was constantly tired and asking to be held. That went on for about 2 weeks, and I thought it was a uti, or a growth spurt, or her being jealous of the baby. or a combination.
My husband and I went out for our anniversary the night before, and left her with a friend. Ella was sound asleep when we got home, but our friend said she'd never seen Ella that way--she was grumpy, thirsty, whiney, clingy. I thanked her, gave her an extra $5 and decided to have a heart to heart with Ella the next day.
The next day came with her screaming in pain--her head hurt, her legs hurt, her arms hurt, her eyes hurt--and vomiting from 4 am. At first I thought her behavior was just from getting sick-she probably had the flu, and some Mommy TLC would take care of it. She didn't keep anything down all day, barely even water. i tried to nurse and she threw it up. I tried everything to get her to eat, and it just wasn't working. She threw up everything we tried to give her. She also had many more very wet diapers. By noon, I looked into those sad, sunken hazel eyes and I knew something wasn't right. Ella fell asleep (passed out?) in my arms two hours earlier than her usual nap, while my husband got on the phone with the pedi. He said to pack a bag for the hospital. That's when my heart started to pound. Issac carried her to the car and I started to cry. I started to wonder what was wrong, and please, please someone save my baby.
Her BG was 575, large ketones and dehydrated. She was in DKA. She'd lost 7 pounds since her well-baby visit 2 or 3 months before.We were in the hospital for a week, in the ICU for 3 days. I cried every single one of them.
The stress of the dx was so much it put me into preterm labor and I had my son just 3 and a half weeks later when he was 35 weeks. He had no problems past the first day and went home the day after, but oh my gosh...that year scared the living hell out of me.
Thanks for listening.

[TayW94]

I'm new on here, so I guess this is the best place to start out. I'm 17 years old, a senior in high school and getting ready to leave for college in a few months. As far as my diagnosis goes, I can still remember every part even though it was 9 years ago.
It was a day before my 8th birthday, I was really thirsty. I remember thinking that there was no possible way I could ever stop being thirsty. My legs were cramping very badly and I told my mom, who thought it wasn't anything at first. I went out with my dad for my birthday dinner and to get my birthday present. When I got home, I threw up. The drive to the hospital was scary, and my mom kept telling me it was probably just the flu. When they checked my blood sugar, it was in the 900's. I was sent off to a special children's hospital in Detroit. That's where I spent my birthday. Not great, but the nurses made me a sign and I got a teddy bear, and my best friends came and visited me for the day. I was in third grade at the time, and my whole class made me cards. That's my story. I have to admit, it feels pretty good to tell it to people who can actually understand.

[Amy C.]

Welcome, Taylor. Thanks for telling your story -- what a way to spend your 8th birthday.

My son doesn't come to this site, but he is a 17 year old senior working hard to get into a college. He doesn't remember much about his diagnosis as he was only 3.

[Arctic Stamp Queen]

I've been working on documenting this for our extended family so they can more fully understand. I posted his diagnosis story on a blog that I have created and then just found this and wanted to post it here as well to introduce ourselves:

Part 1

http://pancreasfail.blogspot.com/201...ous-minds.html

Part 2

http://pancreasfail.blogspot.com/201...diagnosis.html

[Connor's Mom]

February 9, 2009 was the day Connor was diagnosed. Things started much earlier though. When he was 2 all he wanted to do was drink and it didn't matter what it was. His pediatrician said it was fine, he was gaining weight and developing normally. Then when he was 5 or 6 we noticed it again he was urinating a lot! They did a urine test and said I was just being paranoid because my nephew had been diagnosed. Then when he was 7, around Christmas, I noticed after we would eat dinner he would scrounge around on everyone's plates for anything leftover. He would never ask for more but, if he saw it he would grab it and eat like he was starving. Stupid me, I would catch him and tell him to have a glass of water if he was still hungry because he had eaten plenty for a little boy. We had a water cooler at the time and he would drink enough to have me changing a 5 gallon bottle every other day by the end of January. He was also getting very tired after meals and would lay on the couch and not want to play. He was very pale and his face looked swollen. The flu was going throughout he school so, I thought it was the flu. Then I thought it might be related to the dexamethosone shot I had while I was pregnant with him. I starred adding up all the things I had noticed over the years and had convinced myself it was Diabetes Insipidus. I called and made an appointment with his pediatrician. After being taking the first appointment available I was transferred to a nurse. The receptionist said she
needed to see if this appointment would need extra time. The nurse said things would be fine and I was probably over reacting. The receptionist never clicked confirm on the appointment. The weekend passed and I watched my little boy appear to get puffier and more tired. I assured him I would make
everything better when we saw the doctor. We arrived only to be told to leave because no one confirmed the appointment and we could probably wait until next week when the next available opening fir our doctor was. I flipped! I pointed to my so very sick boy laying on the couch I. The waiting room and asked "DOES HE LOOK LIKE HE CAN WAIT! NO!!! I WILL GO BACK THER AND OPEN EVERY ROOM UNTIL I FIND DOCTOR "B" AND HE WILL SEE HIM TODAY!". She poopooed me and called the head nurse, who remembered my call. They called us right back. They did a urine test and the doctor came in and said, "Ok, I think you know why you're here. He's Type 1 diabetic and we need you to decide which hospital you want to go to right now.". I just stared at him...He said, "You seem surprised? It seemed like you expected this.". I said that I had prepared my self for Insipidus and for a possible surgery not Type 1. We chose our hospital and I went home to wait for a sitter for my other 2 boys and texted my husband who was traveling and my daughter that was expecting me at her basketball game. Then I drove 3 hours to the hospital. No one said how bad it was or that we should not wait and that I should take everyone with me and that the sitter should drive down to the hospital and collect the boys from there. He was over 600 when we arrived. He was given a shot of insulin and he went to sleep...sort of. I was taught through out the night how to test his BG. The next day we learned how to calculate his dose and how to count carbs and give his shots. The following day we reviewed everything and were sent home with prescriptions, phone numbers, a binder filled with what we had "learned" and the Pink Panther book. We were to read it when we had a chance. The swelling in his face went away while we were at the hospital. His kidneys had been shutting down and we didn't know it. They were being over worked with the undiagnosed diabetes. When he wasn't swollen, I saw for the first time how skinny he had become. None of his clothes fit and I cried.

He stayed home from school for 2 weeks because it was hard to regulate him. After a month on injections his doses dropped dramatically and he ended up off all insulin. I thought everything had been a mistake. Our Nurse Practitioner assured me he was diabetic Nd this was just a really strong honeymoon. After 8 months, his need for insulin crept back up but, was still very minimal. I was still sure it was a mistake I could control this with cutting his carbs and increasing the water he drank. I could beat this! He needed more insulin still and I couldn't cut the carbs any farther he was down to 20 carbs a day. I had to accept that he needed this or he was going to be very sick. It was like being diagnosed all over again. We started regular injections in September of 2010. Still very low doses, still honeymooning we were told. By Christmas his needs had exceeded what was considered honeymooning, more that 10 units a day. That is when it was official...he is diabetic.

[ciarak]

i had been sick for quite a few months before I was diagnosed but me and my family put it down to stress over my exams but after a while they became suspicious by my excessive thirst and tiredness that it could be diabetes so made an app. with my doctor for a few weeks after I was diagnosed. In April we were taking a day trip away and at the start I felt ok but quickly got really sick. i found walking really hard and couldn't eat anything. i remember feeling really tired and wondering what was wrong with me
My parents got really worried so they drove back down to my aunt house, i dont remember much of the drive, to test my blood sugar (she's a type 2) and it just read high, both my parents and aunt didnt know what to do so they just brought me to the hospital where i got admitted straight away :/ My blood was 43 when i got there and they kept me there for a week until i got used to my insulin shots and got my sugars under 20
Now it's been 9 months, blood sugars are ok still go up and down a bit, and am on Novo-rapid and Lantus

[jllitten]

Alex was diagnosed on January 23, 2012 at age 3, but had only been having symptoms one week prior. Unfortunately the week he was wetting out of diapers and getting more and more grumpy, we had a huge snow storm and the power went out for 36 hours at our house. We as parents knew there was something wrong, but my family can be fatalists sometimes and immediately went to diabetes. I couldn't quite go there. We decided to wait until the following Monday to make a doctors' appointment. Once there we managed to get him to pee in a cup (shocking since he is still not potty trained) and get poked. He did have ketones in the urine and the b.s. reader read HHH. The doctor said, "Alright, I think he does have diabetes. Pack your bags, your going to Seattle Children's for three days to get him started on regulation and training for you." Okay.
This is the start of the new chapter in our lives, but I am glad that this will be all he knows. Hope this helps others.
Jody

[blufickle]

I don't remember a lot about it since it happened SO long ago, I just remember what my parents told me about it.

It is September 1965 and I had just begun kindergarten. I was drinking a lot. My parents first wondered if it was because of my tonsils and adenoids surgery from June. I then began to wet the bed because I was drinking so much. One evening, I told my mother if she didn't give me another glass of water, I was going to give her a black eye. She told my father something was wrong with me.

So they collected a urine sample, my father was a pharmacist and brought it to my doctor. The doctor asked my dad if he'd used a clean bottle. My father was rather insulted by this and told the doctor so. My doctor said, he was just wondering because of the high sugar content. He then said I needed to have a fasting blood sugar. I had one done and it was 1150. The next day my parents took me to a bigger city put into the hospital. On September 17, 1965 I was diagnosed with Sugar Diabetes, Juvenile onset Diabetes, Type 1 Diabetes. I was in the hospital for a week. My parents were taught about diabetes and how to give injections to me. They were taught by injecting water into an orange!