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Diagnosis Stories

Discussion in 'Introductions' started by Jeff, Feb 18, 2009.

  1. Merry

    Merry New Member

    Jul 30, 2011
    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!
  2. cgbphp

    cgbphp Approved members

    Sep 21, 2011
    I felt like I should have known

    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.
  3. MamaLibby

    MamaLibby Approved members

    Oct 30, 2011
    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 :eek: 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.
  4. TayW94

    TayW94 New Member

    Nov 18, 2011
    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.
  5. Amy C.

    Amy C. Approved members

    Oct 22, 2005
    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.
  6. Arctic Stamp Queen

    Arctic Stamp Queen Approved members

    Jan 18, 2012
  7. Connor's Mom

    Connor's Mom Approved members

    Nov 10, 2011
    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.
  8. ciarak

    ciarak Approved members

    Jan 8, 2012
    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 :confused:
    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
  9. jllitten

    jllitten New Member

    Jan 30, 2012
    Diagnosis Story

    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.
  10. blufickle

    blufickle Approved members

    Oct 4, 2011
    My Diagnosis Story

    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!
  11. MommytoCsquared

    MommytoCsquared Approved members

    Mar 1, 2012
    It's just the heat; I mean, really, it can't be diabetes

    Even though it had probably been happening slowly over time, I can pin point the exact moment the world tilted on its axis. In August 2011 we were in Spokane running errands and visiting family. Connor, my then 2 year old, started begging for water. This was coming from a little boy who never asked for anything but juice. He drank 2 bottles of water within 45 minutes. I just figured it was due to the 105 degree weather. That night he refused to eat, but drank enough water and milk to make himself throw up.

    Over the next three, he would seem worse then better, then in between and back again. He seemed to be losing weight and was lethargic then super hyperactive. The most obvious problem was the amount of drinking and urine; he was wetting through diapers at night 2-3 times. My parents kept asking me to make an appointment; I kept promising, but I just kept putting it off because today he might seem better and it was just the heat. Wow...I really wish I could go back and make an appointment earlier.

    On September 8, he asked for cereal as a treat. My husband fixed him a bowl of fruity pebbles, and knowing now what we know it almost makes me cry realizing how much sugar we let him eat. But in many ways it was good, because it was a huge wakeup call. About 30 min after he ate, he started holding his head and crying because his head hurt. It was so scary and suspicious. I had an old meter and strips (I had gestational diabetes) with Connor). I tested him and the meter read HI. What does that mean?! We looked it up online, and it meant he was over 600. If I knew what I know now, we would have gone to the hospital right that second, but my husband and I didn't understand the severity of that number. We figured he had been like this for a few weeks now, and one more night wouldn't matter. We figured a rush to Spokane (about an hour from our town) at night to wait in the ER would be worse than waiting through the night and seeing our PED.

    The next morning we spent about 10 minutes at the drs office; after a urine test we were sent directly to the ER. We spent 5 days at the hospital, learning how to manage the big D. For the most part, Connor was a trooper. My predominant image of him is with all 10 fingers covered in bandaids. He handled the pokes fine, but he couldn't take seeing the blood. Once he had some control, like choosing which finger was poked or where the shot went, he was much better. Diabetes in some ways can feel like it takes so many choices away. Any decision that he can make makes him feel like he, and we, have more control.

    Looking back I would say to parents worried and wondering, "Trust yourself and your knowledge of your child. It is better to know earlier than later."
    Last edited: Mar 10, 2012
  12. thehaysgang

    thehaysgang New Member

    Mar 20, 2012
    Avrie's Story - Chapter 1

    Our whirlwind started last Wednesday afternoon (3/14/12) when I thought I was taking my two year old daughter, Avrie, to the doctor for a bladder infection. Five minutes into our appointment after giving a urine sample, I was told it wasn't a bladder infection, but very possibly type 1 diabetes. I needed to get to the ER as soon as possible. After a short time at the ER, we were told her blood sugar was 776, and we would be transfered to Cardinal Glennon Children's Hospital in St. Louis.

    Arriving in STL after midnight, we were told that Avrie does have Juvenile Diabtes. She was diagnosed early and the onset was probably a mixture of a genetic predisposition and the weakening of her pancreas by a virus she had a couple weeks ago. We were told we would be at the hospital for three days, so they could treat our little girl and teach us as much as they could about JD.

    Looking back I can see some of the symptoms - asking for water, peeing, peeing, peeing, a sweet odor from her mouth. But really, I would have NEVER guessed that my daughter had diabetes. I am so thankful that we found it early - as she NEVER acted sick or uncomfortable at any point.

    I am trying not to think too much about the future at this point - I just want to get through each meal, each injection, each day.

    My daughter amazes me beyond words, taking each finger prick and shot with grace. I have found the hardest thing is not letting her eat the things she wants to eat, when she wants to eat them. Two year olds like their snacks, and I feel horrible denying her things she used to eat all the time.

    Many people have told me that it is a blessing that she was diagnosed so young - she won't remember not being diabetic. I guess it's true, but it is hard for me to see this as a blessing right now.

    Thanks for reading - I've learned a lot from reading other posts, maybe this post will help someone else.
  13. Mrs. Russman

    Mrs. Russman Approved members

    Apr 20, 2007
    5 years ago tonight....

    I posted this title as a status update on facebook earlier this evening.
    A friend replied
    It'll b 14 yrs this 7/5
    For some reason this undid me and I'm sitting here sobbing. She gets it because she has it too.

    And I feel the need to tell our story.
    It actually started in 2001 when one of our closest friends was diagnosed type 1 at the age of 26. She almost died despite several dr visits and ER visits. No one ever thought to check her blood sugar. I learned a lot that year.

    Jan 2007, pregnant with my 5th child, glucose tolerance test comes back, gestational diabetes. Checking blood sugars and counting carbs and welcome to insurance who doesn't want to pay for test strips....

    March 11, 2007 my beautiful baby girl is born and I'm done poking my finger!

    March 21, 2007 My in-laws are returning Ben and other brother who had been visiting them since their baby sister's birth. Mother-in-law is concerned about Ben, he had to stop and go to the bathroom several times during the 4 hr drive home. He hadn't felt well the whole time he was with them. He starts throwing up.

    March 22, 2007 I'm sure Ben just has a virus, and usually I just let them run their course, offering plenty of fluid and comfort. Mother-in-law insists he should go to the Dr. The PA can see him around noon. Diagnosed Strep throat and stomach virus. I am surprised that he has lost over 10lbs since last visit. That afternoon he drinks over a gallon of water, throws up, drinks more, throws up...starts antibiotic and anti-emitic prescribed, but still throws up. That evening he still feels awful and wants to take a bath. I help my 11 year old son into the bath tub and I am shocked he looks like a holocaust survivor. He is skin and bones. This isn't normal even with the stomach virus. And then I notice the labored breathing. With a new baby, I can't go to ER, so Dad and Ben head off. I remember putting a cup with a little water in the cup holder for Ben. Dad not wanting him to have anything to throw up. but Ben insisting he is thirsty. Ben not wanting to go because he doesn't want a shot. Me telling him he may need a shot of antibiotic so he can start getting better. Diabetes wasn't on my radar yet. I don't notice the fruity smell
    Dad calls not long after.
    "Preliminary diagnosis, type 1 diabetes, His blood sugar is 1100"
    I reply "He is in DKA."
    I knew what it was and what it meant...
    mr. russman later tells me he had to carry Ben into ER at Cook Children's. He walked up to triage and they didn't waste a second. He gave Ben's name and An EMT took Ben and they said "come on Dad." They could smell the ketones and knew immediately what was going on. His blood sugar was 1100. Mr Russman says he remembers standing at his head playing with his hair and him slipping away. He just knew we had lost him.
    Ben spent almost 24hrs in PICU.
    I call our friend diagnosed in 2001, She lets me cry and reassures me we will get through this and will be able to manage it. We relive her story.
    It is the hardest thing for me to choose between my children, I want to be with Ben, but I can't leave my newborn. I visit for short periods between feedings. Once he is moved to a room out of PICU I take her up there and stay with him. Now I have to poke my boy's finger. And it wasn't just one shot of antibiotic its insulin daily for the rest of his life.
    We bring my mother-in-law up and sit her down with CDE to explain to her that she in no way caused or contributed to this.
    We survive, we adapt, and we grow. Sometimes we still struggle.
  14. maciasfamily

    maciasfamily Approved members

    Feb 15, 2012
    Caleb was dx'd about 2 months ago at 2 yrs old. He had been sick off and on for a few weeks. It would always seems to happen on the weekend. He would not want to eat, drinking a lot, and peeing through his diapers through the night, and even during the day with regular changing. He threw up twice one weekend, but only a little bit of liquid. I assumed he had a bug. He got better Sunday night, and was fine the next week. On the following Sat, he again didn't want to eat, drank and pee'd a lot. Sunday morning he looked terrible. Our urgent care didn't open until noon, so I figured we'd wait instead of going to ER (still seemed like he had a bug of some sort). While we were waiting at home, he seemed to almost pass out for a moment, but then came to again.

    I rushed him to the ER at this point. Once we described his symptoms the dr immediately said diabetes. I was like whatever (not believing this could happen to my kid!)...they tested his blood on the meter and it came back HI. They then took his blood, hooked him up to IV, took his urine, etc. I was still not quite following along. His BG came back at almost 700...and that's when I realized the truth of it. He had diabetes.

    I called my DH who was at home with the other 2 kids and broke down crying. I was in shock, and couldn't imagine dealing with needles/injections forever!

    Caleb was transported by ambulance to the Children's Hospital where we stayed for 2 days.

    I look back now, and I see certain things. Like he always, always would drink his drink before eating his food. I had to take his cup away from him, and only give him a little bit at a time so he would eat his food first. Now he never does this. He eats and drinks like we should normally do...and actually having some drink left over and his food is finished!
    He also wasn't talking very much at almost 3 yrs old. He wouldn't string 2 words together, only one word. He would be so lazy sometimes, not acting like a normal toddler running all over the place all the time.

    NOW, it's like night and day. He is talking so much now more than ever! He sings, repeats sentences, runs all over, is a little stinker 3 yrs old now! :) And we LOVE every minute of it.

    It's only been such a short amount of time, but we've settled into our role and are doing so good. :D
  15. GlendainGA

    GlendainGA New Member

    Apr 9, 2012
    Our Diagnosis Story

    Looking back before my son was diagnosed, he displayed many of the signs of diabetes. Almost every meal he either didn't want to eat or would complain of stomachaches immediately afterward. Of course, we thought it was just his way of not having to eat foods he didn't like. I even brought it up to the doctor at every visit and he too poopooed the complaints.

    Eventually, in the summer of 2010, we noticed a dramatic weight loss, constant thirst, and frequent trips to the bathroom. Finally, when he gave up a fishing trip because he didn't feel well, I made the phone call and got him into the doctor's office.

    At that visit, we learned that Luke had lost 15 pounds since April; this was July. After a urine test, the doctor informed us that he was spilling sugar...of course, next was the fingerstick glucose, which came back at a whopping 506! After I regained my composure, having felt like I'd been hit by a freight train, I began to grasp the fact that my son had diabetes. My husband immediately removed Luke from the exam room while the doctor, nurse, and I discussed the situation. It's funny now, but at that time the only thing Luke was concerned with was the fact he may not be able to eat waffles anymore!

    We were informed to immediately take him to the children's hospital across town. No, we couldn't go home and get items for a hospital stay, no we couldn't wait, we had to go now! By the grace of God, Luke did not go into DKA. Thankfully he didn't need ICU cares or an insulin drip. It looked like we had caught it fairly early before severe complications set in.

    That day was the end of our lives as we knew them and the beginning of a whole new journey. I say several times a week that "I hate diabetes!" and I do. Luke, however, never utters those words. His attitude is that this is his way of life now and he deals with it much better than I do.

    I'd say that we've adjusted, but that's not always possible with T1D. It won't let us get too comfortable. Our doctor describes diabetes as "not letting the cow out of the barn...then you don't have to chase it around the barnyard." Our cow escapes sometimes and we have to go chase it down, but for the most part she stays put!

    To any newly diagnosed families (because it is the whole family who "has" this disorder) don't give up hope! It's devastating; it's frustrating beyond measure at some points; it's impossible to control it perfectly so don't even try. It is rewarding when you have great numbers for days, but inevitibly those numbers will go back up (at least this has been our experience). We don't look at diabetes as forever...it's merely a chapter in our lives we must live until there is a cure. I have to believe there will be a cure in my son's lifetime; some days that hope is all that keeps me going!
  16. Pooh's Mom

    Pooh's Mom Approved members

    Apr 4, 2012

    On March 8th I took her in for an ear infection. She hadn't had one for a year due to tubes in her ears. The ENT said that her tubes are clogged so I had to watch her. About a day or two after starting her antibiotics her she began to drink and pee, a lot. I just chalked it up to the antibiotic and said that if she was still like that after she was done then we would go to the doctor about. The thirst was so bad that she would wake at 2 am crying and want to drink. She was also soaked to the point we had to change her and the bedding, at 2 am. She finished her antibiotic on the 18th and I planned on taking her in on the following Monday when I didn't have to work.
    I got a call from my mom, who watches her, on March 22 that Whitney's temp was 101.4 and I need to take her to the doctor. I took her later that day and her fever was a temp of 102.6. The strep culture came up as positive and then when I told the doctor about the drinking and peeing Whitney's BG was tested. At the doctor around 4pm was 492. By the time we got to the ER for Children's Hospital her BG, 5pm, was 514. We spent the next four days in the hospital.
  17. kfhkcb

    kfhkcb Approved members

    Sep 3, 2012
    Not the average diabetes family

    I don't have an ER visit, and enormous shock, but rather a different type of emergent diabetes story. My grandfather was an insulin dependent diabetic well into his late 70s, my father was diabetic (and chose to not treat and died at age 56 with intake BGS of over 800 and a massive coronary). I have always known diabetes, and I knew that when I got married (without a father to walk me down the aisle) and had children, I would take better care of myself and not follow his path.

    I was in the military and had regular blood sugar checks at physicals and things were good. I had my first child at 35 and very early asked for a GDM test so that I could be safe given my increased risk, low and behold, GD @ 19w. I was insulin dependent throughout my pregnancy and off meds with delivery. At my 6w, my sugars were slightly elevated, but not out of control, so nothing, until I was pregnant again and tested very high from that point on and was insulin dependent by about 17w. From that point they labeled me as Type 2. I have had 2 more children and gotten in fabulous shape and control my sugars with diet and intense exercise. I will run my 4th half marathon next week. My A1C is now in the "normal" range (middle 5s).

    My first son, H was born in Maine and there was a study being done on C reactive protein and heart disease in adult males, so his CRP was drawn shortly after birth, and was elevated. Abx brought it down and he was fine.

    A year and change later, daughter K was born, healthy and 'normal.' At her kindergarten physical she was spilling protein, so they re-drew her blood and was found in the higher end of normal.

    Son C was born in 2008, and from about age 2, has been constantly thirsty and I thought quirky about wanting to use every.single.bathroom we pass by. He has a little bit of OCD, so I though it was kind of just that.

    Daughter B is now 2, born in 2010. I haven't had the heart to test her sugars although it is coming, in the morning and a full blood draw has been ordered for her this week as well.

    A few weeks back, it felt like C was just always thirsty, waking in the middle of the night for water and because he was soaked. So I tested his sugars in the morning. His fasting sugar was in the 130s. So on a lark, I tested his older siblings, and K was 82, but H was in the 140s. Next two mornings I tested again and they were all in the 130-152 range each day. C needed his preschool physical anyway, so I got them in and asked if we could run an A1C, which we did.

    The boys were each 6.3 and K was 6.2. We were referred to 3 different endocrinologists, that I consolidated to one, and met with. She listened to our history and introduced me to MODY. It fit so many of our symptoms and reading through the information I found later, some of it read like a memoir of our lives.

    We are all considered Type 2 "for the moment" and will begin regular fasting finger tests this week or next, when I get my head around all of it. We are being tested for MODY this week as well, including the baby, but won't get answers about that for at least a month. In the mean time, a diet change and regular test results will help with treatment determinations when the time comes. Hoping to find something conclusive so we can work to treat as needed. I will stay on top of this, somehow and it will get better.
  18. Noah'sMama

    Noah'sMama Approved members

    Sep 6, 2012
    My husband is in the Army and we were stationed at Camp Casey, South Korea. The medical care there (only 12 miles from the DMZ!) was very basic. We only had a troop medical clinic staffed with Combat Medics and part time MD's who commuted from Seoul, which was more than 2 hours away by car. Noah was 8 at the time. It all started with his teacher, who noticed that he was falling asleep in class and requesting bathroom trips too often. We had scheduled a parent teacher conference on February 12, 2010.

    The night before the parent teacher conference, I noticed during a family movie that Noah was getting up every 20 minutes or so to go to the bathroom, and he was drinking water like a fish. I looked up his symptoms, suspicious...and realized that they were all pointing to Diabetes.

    The next day, we attended the parent teacher conference. I noticed under the bright flourescent lights of the classroom that Noah was VERY thin and ill looking. As his teacher talked to me, I couldn't stop looking at him. He just sat there, dazed and staring...dark circles under his eyes and swaying. I finally put a stop to the conference. I told his teacher that I thought he had diabetes, not a behavior problem, and that he needed to go to the hospital right then and there.

    I took him to the TMC (troop medical clinic). I told the medic at the desk that he needed a blood glucose check. He asked me why. I said, "I think he's diabetic!" He actually rolled his eyes at another medic behind the desk as if to say, "moms...reading symptoms on Google again!" They put us in a room and brought in a glucose meter. They checked him, then he said..."I think this meter is broken. Let me get another and check again." He brought in another meter, tested him again, and this time he said that we needed to go to the lab and have blood drawn. So off we went to the tiny little lab. They drew blood and ran it through their big computers. The Korean lab tech came back with a panicked look on her face, and asked me where the doctor was. How should I know? She said she needed to draw blood again. So she stuck him again. The whole time he just sat there, staring at a blank wall.

    Finally, they told me that his glucose was too high for any of their machines to read. All they could get was >700. They had no insulin in the clinic. I was there with two other children, alone...my husband was on a long field exercise more than 2 hours away. He was so far out that his cell phone had no reception, and I couldn't reach him. I started frantically calling everyone I knew, I called his Lt. Colonel's wife, I called everyone.

    Meanwhile the clinic was making preparations to medevac Noah from Dongducheon to Seoul. They called the Army hospital at Yongsan (Brian Allgood Army Medical Center) and were promptly told to NOT take Noah there, they weren't equipped to care for him there. They started calling Korean Hospitals all over the Seoul area, trying to find one that was qualified to care for him, and started an IV of plain saline on Noah. He fell asleep on the gurney.

    I was still trying to reach my husband. His Lt Col's wife called her husband, who tracked down my husband through his Chain of Command, and he finally called me back. I was sobbing on the phone, he was trying to get the story out of me, and all I could do was sob, "get here now. No, I don't know if he's ok. They're taking him to Seoul in the helicopter. No, I don't know which hospital he's going to. Just get here!" A friend came to the clinic to take my kids, my husband finally arrived, and he flew to Seoul with Noah in the helicopter.

    Then it was time to get myself to Seoul. I had no idea where I was going. Nobody would help me, they barely knew anything themselves. My friend drove me in her car, and we wandered aimlessly around one of the largest cities in the world looking for this hospital, calling phone numbers and begging for information. FINALLY, we found him. They were still in the ER. My husband told me that they had tried to put Noah in a bed that still had blood on it from the previous patient. We were in an enormous room filled with crying, puking, moaning patients. It was horrible and it still feels like a dream.

    Shortly after that they moved him to the PICU. He was so sick, but I think the true gravity of the situation was a little lost on me due to the language barrier. I had no idea what they were saying to me. Time at this point kind of blended together, and events aren't very clear for me. My friend stayed with us the entire two weeks he was in the hospital. My diabetes education consisted of a 300 page photocopied textbook poorly translated to English from Korean, and a Korean medical school professor with 12 students poking at a Powerpoint presentation that made absolutely ZERO sense to me in my sleep deprived, stressed out state. We left the hospital not knowing much more about diabetes than when we went in. They told me that he was to take 5 units of Novolog with every meal. So that's what we did...no carb counting at all. We had several incidents of extreme hypoglycemia. One memorable incident happened on the subway. He was 28 and nearly comatose. I was very much out of my element and had no help.

    We ended up getting a compassionate reassignment back to the states because of the substandard care that was available to us there. I had to make a 3 hour journey to Seoul and pay hundreds of dollars out of pocket just to get his insulin. 3 months after his diagnosis, we moved back to the States. We were supposed to go to Fort Carson Colorado (in Colorado Springs) but because they don't have a pediatric endo at the military hospital, they cancelled our orders and sent us to Joint Base Lewis-McChord, WA, which is where we still are.

    Now my husband is about to deploy for the first time to Afghanistan, and I'm facing 9 months alone with all 5 of my children, lol. Noah is getting a pump in the next couple of weeks (can't wait!!) and I have learned so much more about diabetes now that I'm in the states, lol.

    Thank you for this excellent forum! I look forward to getting to know all of you and learning so much more!
  19. T-bird

    T-bird Approved members

    Aug 24, 2012
    Looking back I can see symptoms as far as a year or a year and a half back.
    When they started becoming pretty noticeable it was mid-February. I suddenly had this unquenchable thirst. All-consuming really... I would wake up with my mouth so dry that my tongue would stick to the roof of my mouth. I had to pee all the time.
    By the beginning of May I was sleeping 10 hours at night and 2 or 3 hours in the afternoon. I started doing my homework at school 10 minutes before it was due because only the fear of being caught could motivate me to do it. I drank a bottle of my own water and then my friend's water bottle and was still parched. I was also starving. After school I would walk home with my friend and we would split a chocolate muffin then I would eat lunch, have 3 snacks within the next hour and a half and then go out and buy a snack with my friends. I noticed that I could see all my ribs and the bones beneath my eyes. In the 3 months before I was diagnosed I lost about 20 pounds. By the time they weighed me in the hospital I was 66 pounds even though I was five feet tall.
    By June I was very tired and skinny. I got sick one day which is very strange for me (even when I have a really bad stomach virus I never get sick). I remember not wanting to worry my parents. The last straw was when I went to a slumber party with 2 of my friends. I couldn't stay awake during the film, I got up to pee and drink water at least 4 times. I hadn't been able to got to the bathroom for almost a week. When we went to play baseball I had to sit down.
    The next day, the 18th of June, my parents took me to the emergency room where they took my bg and my a1c. Both were unreadable (over 500 and over 14 is all it says on those papers) on their relatively simple tools so they transferred me my ambulance to a much bigger, very advanced hospital with a diabetes wing. By the time I got there my tongue was so dry I couldn't say my name.
    I was in full DKA.

    Honestly I wasn't upset then, I was just ready to stop feeling miserable. And I am still extremely grateful to those amazing doctor and nurses.
    Last edited: Dec 23, 2012
  20. natallia

    natallia Approved members

    Jan 17, 2012
    It's been almost exactly one year since our little boy got diagnosed with t1. Life before diabetes moved in with us seems so free and careless. I will of course never forget that day. We all came down with a flu and a strep throat last Christmas. I remember a couple of trips to ER to pick up our antibiotics for the strep infection. We got over it pretty fast, all of us except our littlest one - then 9 months old Sammy. Over a couple of days we noticed how thirsty he became, wetting huge amount of diapers and being inconsolable and cranky at bed time. I thought it was antibiotics which made him so miserable. So I took him to our family physician to see if he can put us on a different antibiotic. I told him all the symptoms and like many other parents mention here about their first talk with a doctor, he completely brushed us off saying it was probably just the flu that made his like that. It takes literally 5 seconds to check bg for sugar and yet 99% of the doctors fail to do it on the first appointment. Also, type1 diabetes is now number one chronic condition among kids in North America, shouldn't it part of the yearly routine check up at this point? Anyway, that night Sammy was incredibly cranky, tired and hungry. We haven't slept at all. Early in the morning I was looking thru our med cabinet to see what else I can give him when I found my mom's bg monitor kit which she forgot at our house on her last trip. She is not diabetic, just a very health- conscious person who loves to test her sugar, blood pressure and god knows what else! :) And that's when it hit me. Thirst, weight loss (Sammy lost over 5 lbs in just a couple of months, which is a lot for a baby), diaper rush which didn't go away. Working in the pharmacy for years I should have known this. I still can't understand how could I have missed it for so long. I checked my bg first, then my other kids then Sammy. 27 (486) popped up on the screen. And that's when my old life ended. Two hours later he was hooked to iv and we could see right away he was getting better. My poor little boy was only 9 months old. The diagnosis was heartbreaking for us and I constantly have to remind myself to take one. Day. At the time. Little steps.

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