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Diagnosis Stories

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

  1. Heather-Nate's Mom

    Heather-Nate's Mom Approved members

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    Our Story

    First off, I'll tell you that my brother was diagnosed at age 12, about 23 years ago? His diabetes was very difficult to manage, we now think he may have had Brittle diabetes. After being treated for years, they found that his pancreas was randomly secreting insulin, making it impossible to adequately manage his blood sugars. He never accepted the disease and was very angry, and with his sugars being so hard to control, I think he just gave up. He did not follow doctor's orders and would drink Mt Dew when he was low and give insulin when he was high. He went severely low on many occasions and each one of us in the family were in the position of trying to save his life on many occasions while he was having horrible, scary seizures. This poor management of his blood sugars took a toll on his body, causing bowel problems, vision problems and ultimately causing plaque to build up in his arteries. He was on high blood pressure medications. On Dec. 29th 2004, he passed away suddenly alone at home alone. Leaving his wife of only 1 and 1/2 years without a husband, his parents without a son, and my sister and I without our beloved brother. Autopsy showed that one of his arteries was 97% blocked and a few others were also quite blocked. Cause of death: Atherosclerosis. Five years later... my son(age 11)was becoming very thirsty. They was barely a moment of the day he wasn't drinking something and said if he wasn't drinking he would get a funny feeling in his stomach. I had in previous month's told him that he needed to drink more water because his urine was very dark and at first thought he was going overboard trying to keep his urine clear. One day he came home from school and took a 3-hour nap, which he never does. The next day he went to his Dad's for the weekend(Halloween weekend). He called me when his Dad picked him up from school and told me his vision had been blurry at school. He came home Sunday and told me had drank his Dad out of house and home. I had Gestational diabetes during my pregnancy with my daughter I had had just three month's prior, so I tested his blood sugar. My meter just read HI(which meant over 600 mg/dl). I wondered if all the candy he had eaten over Halloween could do that. Since he seemed fine, I sent him to bed and checked him again in the morning. It was at 450. I called the doc in the morning, telling them I think he has diabetes and they thought I was right. I went in for confirmation and they sent us to a Hospital 1 1/2 hours away since our small hospital doesn't handle juveniles with diabetes. I was devastated. I never thought after what we had been through with my brother, that I would ever have to deal with this ugly disease again. And after seeing all the scary seizures with my brother. I was terrified. My knowledge of the disease, however made the transition much easier and the technological advances have made caring for the disease much simpler. My son has much more freedom with what he can eat using the insulin carb/ratios versus the strict diets my brother was asked to follow. And the Omnipod insulin pump is the best thing ever! We are getting along well. The only good thing that came from my brothers passing is that my son knows what will happen to him if he doesn't care for his diabetes properly as he has seen firsthand the consequences. We miss my brother sooo much and if he were still here, maybe my son could have inspired him to take better care of himself. My son's first 3 month A1c was 6.7 and at 6 months was 6.0! I am so proud of him! He has taken all the lifestyle adjustments like a champ! He has a great attitude. We are battling some higher blood sugars lately though as he enters puberty but are working on getting them under control. As you all know, it is a constant battle. But we are going to beat this disease! Who knows? Maybe they'll find a cure in his lifetime!
     
  2. 5kids4me

    5kids4me Approved members

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    I am coping this from an email I wrote to a friend because I don't think I can write it all again. I hope it copies/pastes correctly

    On the 13th of April, I knew something wasn't right. That morning Josh got up and immediately threw up-not completely unusual for him because he has a notoriously weak stomach. But it set off a little alarm because he complained of being dizzy also. I kept him home from school and noticed he was drinking more than usual. He told me that he thought it was because he had thrown up and I assumed he was dehydrated. Later in the day, he felt fine. I chalked it up as being a 24 hr bug..but still had that little nagging feeling inside. Later that same week (April 16th), my husband and I went out of town. Our two oldest sons were in a state competition down in San Antonio... So my mom and dad came to keep Josh and our 4 year old daughter, Emily. Before I left, I confided in my mom that Josh wasn't feeling "right" and asked for her to watch him closely, especially if he was drinking more than normal. We were gone for 3 nights and when we got home, my mom said that he was drinking quite a bit but not acting sick and "eating really well". At the time I didn't know that excessive hunger was another symptom. So Monday April 19th, I
    called our family dr and tried to get an appointment for a well check for Josh. They couldn't get him in until the 28th since he wasn't sick...So I got off the
    phone and felt like I had made a huge mistake. I had a knot in my stomach and just KNEW something wasn't right. I hate to admit it, but I just buried
    that feeling and tried to ignore it. I convinced myself that I was overreacting and that he was just fine. To be honest, I think I was just trying to hide the
    truth from myself. There were several times that I would think "I have read that this is a symptom of something serious..." but I would distract myself and
    not think about it anymore..at least for a little while. Well, by the morning of
    the 22nd. I couldn't ignore it anymore. I had laid awake most of the night before listening to Josh upstairs, going to the bathroom or coming down to get
    glass after glass of water. He was happy and seemed "ok" but he had lost 4 lbs in a month and his skin was so dry-even though I force him to slather
    himself in lotion daily. Also, he was complaining of stomach pain that came and went. That morning (22nd) he was having a fun day at school and begged
    to go, so I caved and let him go. When I got home from taking the kids to school and running errands, I called the dr's office and confided in the
    receptionist that I thought Josh might have type 1 diabetes. It had come to
    me the night before when I realized just how much he was going to the restroom-and the thirst. She squeezed him in at 2:30 that afternoon. At lunch
    the school nurse called and said josh was complaining of stomach pain and a headache. I rushed to school picked him up and called my husband (who
    thought we were jumping the gun and that he probably had a virus). My husband met me at the dr office and kept our two younger kids while I took
    Josh in. They checked for urine and ketones (large) and did a finger prick. 778. The dr came in and put his arm around me and said that I needed to go
    home and pack myself and Josh a bag. He had called Cook Children's hospital in Ft Worth (about 20 miles away from me) and they were waiting for us in
    ER. I just looked at him. I had no idea that we would be going to the hospital. I thought they would do blood work and we would go back in a week or so to
    the dr. I tried to hold myself together and we got out to the car before I started crying. Josh was already in tears because he didn't want to go to the
    hospital... My husband was in shock when I told him that we had to get home, I would pack, he needed to go check out our two oldest boys from school. And
    that is what we did. I called my mom (she lives 7.5 hrs away) and asked that they get here as soon as they could because we were leaving Jonathan (14)
    Jared (12) and Emily (4) at home by themselves. We have one neighbor that we are friendly with, but she was out of town. So I had to leave my kids to
    make dinner for themselves, get Emily to bed and go to bed without any
    supervision. I felt like the worlds worst mom. My husband was afraid to let me drive in to the hospital because I was a wreck-and I'm breastfeeding our infant son and needed to bring him so he could nurse.

    At ER, they took our names and took us right back even though there were 50 families in front of us. That scared me...Josh's blood sugar was 511 in the ER and we spent about 4 hrs in an ER room with dr's coming and going, blood work, an IV (thankfully, they numbed his hand before putting in the iv) before someone came in and explained the A1c and that his was 11.5 and that he did have type 1 diabetes. They moved him up to a room and we were there for a
    little more than 48 hrs. Once they started giving him insulin and his numbers started falling, he became violently ill. He couldn't keep anything down and
    would have projectile vomiting that he had no control over. It was horrible. They were checking his ketones and sugar every 2 hrs around the clock. Since
    he couldn't keep anything down, the ketones were still large even at discharge. He felt terrible...didn't want to watch tv, or talk. I have never seen any of my
    children THAT sick. It was absolutely the scariest time of my life.

    We had a crash course in the hospital and I so know what you all mean about being afraid to bring your child home and have to care for them with this disease. I was so scared I would make him sick-or get busy with the other kids and forget to check his blood before he ate or let him get too low and lose consciousness.

    Those few days home are a blur. I was calling in his numbers daily and the diabetic nurses were making changes. Josh spent a lot of time crying and then going to school and having to tell his friends and me leaving him in the hands of the school nurses and teachers. I had such a hard time leaving him-I was
    so scared they wouldn't know how to treat him. Josh told his class and explained what was going on...most of the kids were good to him. One kids
    told him that "diabetes means you are gonna DIE!" that scared him.

    Josh is doing really well, doing his own finger pricks and checking his blood. We use the novolog flex pen for shots and he puts it all together and dials ou
    t the right number of units-he isn't ready to give his own shots yet. I've told him that when he wants to try, all he has to do is tell me and I will just watch
    and make sure he doesn't have any problems. I think it has helped to involve him in his care instead of doing it all for him. I know he feels brave when his
    brothers and sister tell him that they could never do what he does.

    We have no family history of type 1. My father has type 2 but has it under
    control with diet and never needed insulin.

    They asked me if Josh had been sick recently. The only major illness he had was back in the fall. He had H1N1 (we all did) and he was on tamiflu. They
    think it might have triggered this.

    I have so much guilt..I wonder what I could have done differently..I read an article that stated babies who are exclusively breastfed for 6 months and then continued breastfeeding for at least 12 months without any cow milk protein can reduce the risk. I weaned Josh at 7 months because I was tired of doing it..... I know he might have ended up with it anyway, but it makes me wonder.

    Robbie
     
  3. angle

    angle New Member

    Joined:
    Oct 14, 2010
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    i was diaginosed when i was 18 years old

    at the age of 18 i was run over by a car and teaken to the hospital where they
    did the bg test my bg was 220 but other then that i was showing no symptoms
    of diabetes today im 23 recentl taken of the drug metformen. :)
     
  4. Kaylee's Mom

    Kaylee's Mom Approved members

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    Kaylee had started going pee all the time and was of course thirsty. I finally called our ped. and said I felt silly calling but she was going to the bathroom ALL the time and maybe she had a UTI. While at the office the dr. was wondering if she was just having fun potty training .. no I said since she was 3 and had been trained for awhile. She was really easy. Anyway, in the 45 minutes we were at the office Kaylee peed 3x. She tested her urine and it came back no sugar ... so our dr. being cautious still wanted her blood drawn since she knew something wasn't right. We were told with no sugar in her urine it was NOT diabetes. She was so good during her blood draw we went to Burger King .. her choice. I was told her get her gatorade since they did not want her to dehydrate. We live on and island so it is an hour ferry ride home ... as soon as I got off the boat and to my mother's house to pick up my other two children the Dr. called her house (It was listed for an emergency) to get to the hospital ASAP that Kaylee had diabetes. I could not find my husband .. he was working .. took an hour to find him ... an hour boat ride and 2 hour ride to the hospital. Her blood was still 500 without having anything for over 7 hours. We were taught how to count carbs, give a shot and sent home.

    I guess it is all history from there.

    Crystal
     
  5. Jessica L

    Jessica L Approved members

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    June 2009
    We had family from out of town and had pizza one night. Riley not to be out done by her brothers (over double her size) or male cousins ate 8 or so slices. She ended up vomiting and I believe this was the start.

    October 2009
    Seemed like every time Ri had to much dairy she would vomit. I thought she was becoming lactose intolerant. I made adjustments to our diet to see if it would make a change. I also noticed she was starting puberty around this time.

    November 2009
    Riley had lost tons of weight. I got her on the scale and it said she was down 10 lbs. A little worried but after reading up on puberty and body changes I thought it was due to that. Her teacher mentioned her increased trips to the bathroom and drinking more. Chalked it up to being thirsty and drinking more means peeing more.

    Dec 2009
    Still watching her no more weight dropped but she is looking sickly. I figured I would take her into the docs after the holidays to figure out if something was going on or if all these little things were separate events or connected. Still thinking she is lactose intolerant which isnt that big of a deal.

    Dec 14th 2009 (sunday)
    Riley is really sick says her throat hurts and she cant breath. I gave her a small breathing treatment (hubby has asthma) and she says it helped some. A little while later she is breathing weird again off to urgent care. They give her a breathing treatment and do a rapid strep test. They say its positive and write her a rx for liquid sugar filled antibiotics. Said she was down 22lbs from April. Gulps my scale still showed 10. A appointment was made for the next week to figure out why. From that first dose she didnt do much else but sleep. I bought her orange chicken and yeah rice. Every so often I woke her up and spoon fed her a tiny amount and she would go back to sleep. She slept on the couch and I slept on the floor next to her. She was up and down all night long, for just a few minutes at a time.

    Dec 15th 2009 (Monday)
    I can hardly get her to wake up at all. I had to carry through the school to drop her brothers off. I get her home and am trying to get her to eat. She cant stay awake for it. I toss her in the shower and she isnt staying awake for that. Hubby comes home at 11 a.m. for lunch as I am getting her dressed and I tell him this is not strep I am taking her to the ER. We get right in and they poke her finger. They say she is diabetic her blood sugar is 5?? my hearing and brain stopped working neither my hubby or I heard her exact number. They give her a tiny amount of insulin and say she needs to be at a hospital that can take care of her better. We want to life lift her to either the springs or Denver both good hospitals your choice. SO we go with the springs its closer we are a week away from payday and the account is empty. I am freaking out I ask if I can fly with her they say no. I am freaking out more but actually relived some to because me and the air dont get a long but I didnt want her to wake up without me there and be scared. Didnt have a choice tho. SO hubby goes and makes a few phone calls. My sister in law is going to drive me up to the springs and hubby is going to get the boys drop them off with my sister law as soon as she gets back meet up with his dad so her can fill our gas tank. Problem is the tank is empty and his dad wants to meet him half hour away!! They take Riley and we go to leave. Over and over in my head I am saying we need money I said it at least 100 times walking from the er to the car. As I get to the passenger side of my car there is a 10 dollar bill sitting right there on the ground right by my door I about pooped my pants as i picked it up and showed hubby. He thought I found it in my purse until much later that day. He drops me at my sister laws house who is around the corner from the hospital and I watch the helicopter take off with my daughter. I am dieing inside at this point. Wanting so badly for her to wake up but not while in there she would freak out badly.

    We are 5-10 minutes from the hospital and one of the staff from the helicopter calls my cell to tell me she is ok and never woke up but isnt any worse than when she left. I get into the hospital and they are still hooking her up to things. They tell me I have one very sick little girl but she should be back to herself in 24 hours. 24 hours comes and goes and she isnt back to her old self. They tell me not to worry she will get there but she is sicker than they first thought and its taking a little longer to get all her body function levels back up to where they needed to be. A little before 48 hours she starts to really wake up and wants water in a bad way they tell her no she cries and goes back to sleep. :( By that evening on the second day they let her have tiny spoons of water. That night a jello cup. She take a few bites but her saliva is so thick she ends up gagging on it and spitting it out. On the third day she wakes up and is much more herself. She is talking back in a smart alacky way and then I knew for sure she was going to be ok. They still wont let her have food until noon. She orders stuff and the chaos of learning begins. Holy moly does it ever. We get slammed with info over the next 24 hours. She is still hooked up to the drips her potassium levels are still not where they should be. They had a hard time getting them there and said she was their first patient on drips for that long. Finally Friday morning they take her off the drips and send us home friday evening.
     
  6. obtainedmist

    obtainedmist Approved members

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    Molly was a Junior in high school and was spending the spring semester in Italy on an exchange program. She had a horrible host family and had to switch after two months...lost of stress! Finally was placed in a better family, but not great. We skyped a lot and she casually mentioned that "I'm turning into you, mom...I have to pee all the time!" We didn't think anything of it. She told us that she vomitted twice in the middle of the night after eating the same thing...and we all thought the new food just didn't agree with her. She started losing weight after around three months there...mentioned that her chest seemed to be getting smaller. Still, we didn't worry because we thought it was just accumulated stress. We just urged her to take good care of herself and eat a lot. I saw a picture of her on Facebook taken in June (she was due back the first week of July) and she looked really thin! Skype was totally distorting how much weight she had lost. We started worrying that she might have an eating disorder. When she walked off the plane Friday night, she looked like a concentration camp survivor...it was so shocking for all of us. We were walking on eggshells asking about the possibility that she had an eating disorder (which she adamantly denied!) The first day home, we were feeding her constantly and encouraging her to drink juice (cringe!) instead of water to regain some weight. I called the pediatrician who told me not to worry as long as she was eating well (???) and to bring her into the office on Monday. The next day she started having trouble breathing and I had to beg the pediatrician to let us take her to the ER (she thought it was adjusting from sea level to 5280 feet???).
    Spent 3 days in the ICU on IV drip. Thank goodness for the fabulous care at Children's in Denver and the Barbara Davis Center.
     
  7. Joretta

    Joretta Approved members

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    Okay I am at a loss right this moment. My daughter was diagnosed 10/23/09 as type two now today she was told opps no your really are type 1. I have mixed emotions. It was hard to hear and live this last year with her being type 2 but I was the one who just knew she couldn't be type 2 with all the things that kept popping up - lows out of no where only to see highs when she ate right. I hate this disease like everyone else and I am not sure where we are headed except they said she needs to start bolusing for meals with a carb ratio. I am lucky though as she is older and is a great trouper. The first thing I guess is to get use to night checks. Ugh, I am so not a night person. So I guess our diagnoses story is I knew something was not right as she was wetting the bed, gaining weight like no tomorrow no matter what I feed her. So I took her to be tested and they said she was type 2 so I had to watch close what she ate and limit every bite. I sat through a year of being told I need to be more diligent with her diet as a high would only happen if she was not eating right and exercising regularly. Only to argue at every appointment that she was doing it all right and that I thought she might be a 1.5. So at the September appointment they relented and agreed to test her for antibodies for the first time more to shut me up and prove their point. Well 12/16/10 I guess I could say is her rebirth as she changed teams and is a type 1. I am grateful though as during the year of being type 2 I read a lot of research and read a lot on here as she was also put on insulin at her type 2 diagnoses. I am just not sure tonight about the future!
     
  8. Mellie

    Mellie Approved members

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    Alison's dx story from Mommies point of view

    Thanx to all fo you who posted your dx stories--they made me feel like I had brothers/sisters in arms against D.

    Here is Ali's story from my perspective:

    Summers get very, very hot and sticky in Ottawa. I was 5 months into a very difficult 2nd pregnancy and my mother had just been dx with terminal Cancer. I was down 20lbs and exhausted all the time! I guess that we attributed our then 2.5 year olds gaunt appearence and increased thirst to the heat. The bed wetting, to us, seemed a logical outome given all the water Ali was drinking.

    On July 3 and 4, my usually independant DD only wanted to cuddle all day long, which was really offputting. On the 5th, I went to work only to get a call from my DH as soon as I got to my desk. Alison was lethargic and had been vommiting since getting up that AM. DH was really concerned that something was up. By the time we got to the ped's office, DD's breathing was very laboured. Ped sent us to CHEO (Children's Hospital of Eastern Ontario) to try to figure out what might be going on. She told us that D was a possibility, but it was not a dx we were ready to accpt without confirmation. We realized that our level of concern was valid when they took no chances and saw Ali right away. She was in DKA and it killed me to see my baby girl so listless and distant. We were so well taken care of at CHEO. The nurses and drs in the PICU loved Ali -- she was such a trooper and is such an outgoing girl. The overnight nurse sent me to the parent's room for a nap at one point, promising that she'd stay with Ali. When Alison woke up during one of her hourly BG tests, she asked for me. The nurse said that Mommy was taking a nap, but that she'd get me if Ali needed. My little hero said that mommy had a baby in her tummy and needed to rest! What insight and selflessness!

    I can say that my DH and Alison dealt with the whole ordeal better than I did. I was dx with high blood pressure and gestational D at the end of July/early August. My mom passed on August 18. I spent most of September and October in hospital because my blood pressure became risky for me and the baby I was carrying.

    Fast forward 7 months and here I am ready to do what ever I can to understand D and to help my DD live the best life possible. We are not letting th dx interfere with her life! She is a terrific big sister to Riley (now 4 months old), active and happy.
     
  9. zoomom456

    zoomom456 Approved members

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    Since I have been posting and lurking, I thought I should share our story.

    My son was tested at birth for the genetics to predispose him for Type 1 diabetes. Since his genetic tests showed he had the genes, he qualified for a study called TEDDY. Every 3 months we went in for appointments and testing. At 3 months - no antibodies, at 6 months - no antibodies, at 9 months - 2 antibodies, at 12 months -3 antibodies and his A1C, while normal, was rising. Then shortly about a month after his first birthday, he began to have trouble sleeping at night. We had just returned from vacation and William was also teething so we didn't think much of it. We gave him Tylenol and he seemed better. After a week of taking an hour to fall asleep at night, I remembered the nurse from the TEDDY study. Michelle, the nurse, said if anything seemed off test William with the glucometer they had given us. So, on Sunday July 6, 2009 I tested my son and his BG came back 250. Thinking this had to be wrong, I washed his hands, made sure to dry well, and tested again. His BG came back 231. We were provided ketodiastix by TEDDY and I tested his urine. No glucose/ no ketones. So I called the on call endo at the center for the TEDDY study. She asked every question related to Type 1 symptoms and DKA, none of which William had. She instructed us to call the Barbara Davis Center as soon as possible in the morning. Not only did I call BDC, I also called the TEDDY study nurse. The nurse got us in with an endo that day. We ended up testing his numbers for a week because he would only go high before bedtime. His A1C was still in normal range. After 1 week he was diagnosed with Type 1 because he started having high fasting numbers and high bedtime numbers. We were very lucky. He was diagnosed before any symptoms appeared.
     
  10. Lisa P.

    Lisa P. Approved members

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    At about a year we began weaning Selah from nursing. Not long after, she began to demand to nurse more often and more insistently. Over the course of about five months this progressed until she was feeding every hour -- including every hour at night. Obviously, in hindsight, this was because she was very hungry and very thirsty. I think reversing course from weaning kept her hydrated while if we'd gone to straight baby food, which is very high in carbohydrates, we'd have seen trouble sooner. She was right about needing to nurse.

    During this time, I kept bringing her in to the pediatrician because she was sleeping so poorly, very cranky and miserable behavior all the time. I was exhausted. They let me keep bringing her in, never sent me home, but no one ever thought it was anything serious. They looked for an ear infection, put her on antibiotics in case she had a sinus infection. After diagnosis, our pediatrician looked at the records and smiled sadly and apologized for suggesting it might be teething. We got the idea from many that the problem was one of parenting, that we were coddling her, we got advise on how to let her cry it out at night so she wouldn't wake us up. I thank God we never did that. They finally tested her for a UTI and found sugar in the urine, she was 300 something by the meter, in the hospital she was 400.

    I'm grateful that our pediatrician's office kept taking new looks until they figured it out, and that Selah was not in DKA at diagnosis.

    I have a strong memory of that time of standing in the hallway crying, saying that I know there's something wrong with my baby and no one will believe me.
     
  11. Kazee6

    Kazee6 Approved members

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    In June of 2005 we moved from Georgia to Virginia and shortly after noticed that Wyatt has begun wetting himself on occassion. At first we chalked it up to the fact that we were moving away from the only home/family he had ever known and was just haivng a difficult time adjusting. Over the next few months this became more of a problem. In early November we were traveling back from visiting family and the trip was about 4hrs long. During that 4 hours he wet through three pull ups...we had put him in pull ups because of the frequent bathroom stops. The next day I called his ped and we went in for an appointment. Luckily we had a ped at the time who didn't think I was crazy for bringing a toddler in for wetting his pants. Within an hour of that initial appointment we were contacted and told that he would need further testing by an endo and that we had the option of taking him in immediately that night or waiting until the next morning to take him. We waited because I wanted him to have one more night of "normal". We were lucky that he never got sick, no DKA, no symptoms other than wetting his pants and frequent thirst. He was diagnosed the next day and here we are today.

    Lucas was diagnosed in Nov of 2009. His story is a little harder for me becuase I was not with him when he was diagnosed. I was stationed over seas in 2009 at a location where I could not take my family. Lucas, Wyatt and Cole were living with my parents and Lucas started asking for water and being very thirsty all the time. My mother is a worrier, so she took him in to see the ped they had there without talking to me. She said later she did not want me to worry if it turned out to be nothing. Within two hours of his appointment he was in the hospital and diagnosed. My poor Mom had to call me to tell me that I now had two D children. I'm not sure I've ever been so upset and ready to quit my job as I was at that moment. There is nothing worse than being thousands of miles away from your children when they are sick/hurting and you can't do anything or get to them. Luckily, they had a great team to work with and they kept me updated via email after each of his appointments.

    Luckily we caught both of them before they went into DKA, which I am thankful for every day!
     
  12. Cookie Monster

    Cookie Monster Approved members

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    I've been lurking around here for a couple of years now so should probably do this. Reading all these stories is tough as you've all been through some tough times at diagnosis.

    Our son has an unusual type of diabetes so our story is a little different. I've written up his diagnosis story in a blog so I'll link it here, cos I'm too lazy/tired to write it all up again (hey, I've got a child with diabetes. It's not like I've got loads of spare time!!!). Also a cheeky way to get more traffic through my blog!

    Anyway, I've split it into three parts. You can navigate through the links on the right of the page.
    http://twoorgansshort.blogspot.com/2011/02/diagnosis-part-1.html
     
  13. cm4kelly

    cm4kelly Approved members

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    Diagnosis of my 2 1/2 year old

    I wrote this not long after my son was diagnosed - and thought I would share it. That was a year and a half ago.

    "Not My Kid"

    The first signal that something was wrong was when I found my two and a half year old son Parker standing on a stool in the bathroom after his bedtime. His plain white plastic Dixie cup was poised under the sink as he was trying to get water. Like any mom, I told him to go back to bed and that he had already had milk. He began to cry, so I gave in, put some water in his little Dixie cup and put him back to bed. Parker was usually good about going to bed at his 8 pm bedtime and rarely argued about it. Later that evening, when I heard noise upstairs the second time, Parker was in our master bath with the same Dixie cup trying to get water. At this point, I became the mean mom and put him back to bed with nothing and told him NOT to get out of bed. The third time in one night that I found him at the sink with a cup was just unbelievable. What was getting into him? It was way past his bedtime, and this better not be the beginning of a bad pattern. He finally fell asleep, but the whole situation just seemed strange. Call it mom's intuition if you wish. It was enough for me to tell his babysitter about it the next day and to tell her to look for anything unusual, if he was drinking more than normal.

    I guess it comes from living with a type one diabetic husband for 15 years. Always watching the signs of high blood sugar, low blood sugar. The pediatrician said neither of my children, Marley (7) or Parker (2), had much more of a chance than any other child of developing type 1 diabetes. Being ever vigilant, each year at my daughter's yearly check-up, I had them draw blood and run a glucose test. Always negative. So when my son came along, I wasn't quite as vigilant.

    After work the following day, the babysitter said Parker drank a lot, but he always drinks a lot. So she didn't notice anything out of the ordinary. I picked him and my daughter up from school, dropped her off at her weekly karate lesson, and came home to make dinner. While I was making dinner, I fixed Parker a sippie cup of sugar free koolaid while he played in the playroom. He came down for a second cup and I gave him a refill. The third time he came downstairs a wanted more drink, I told him no. He got upset and cried, repeatedly asking for more drink. Everything began to click. I knew there had to be an extra blood sugar meter around the house somewhere (my husband had his own meter with him at work). Maybe I could just check his blood sugar and rule out the condition my mind was drawing me too. I went upstairs trying to remember how to work the machine. I pricked his finger and he cried, but I got enough blood on the strip. I waited for the result. "HI" said the machine. Hi, I thought. What does that mean? I know enough about diabetes to know ?good numbers? and ?bad numbers.? Does this mean the machine needs to be coded, or it isn't working? I just don't know and don't want to panic my husband with the phone call. So I tried it again - more blood - same result - HI. Maybe the machine isn't working. So I prick my own non-diabetic finger. 94. Now that number I know ? it is within the normal range. Let?s give it one more try. Parker becomes angry by now, but I am going to finish what I started. One more test - got it. HI. What the heck does this mean? So I get on the internet- every answer I find says that HI means the patient's blood sugar is higher than the meter can register - probably in the 600s at the lowest.

    Now I am starting to panic. I make the dreaded phone call to my husband, trying to speak carefully so he won?t panic. Just wait until I get home, and let's use my meter he says. He gets home with my daughter and we try to sit down to dinner and check him after dinner, but I just can?t wait any longer. We use the TRUE meter - 680. That number changed our lives.
    A phone call to the doctor's office, and we went ahead and packed a suitcase for the hospital. My husband slammed his fist in the wall and blamed himself. "You just don't know what's ahead," he said. We called both sets of grandparents and told them where we were headed.
     
  14. Victoria!

    Victoria! Approved members

    Joined:
    May 31, 2011
    Messages:
    28
    Ours was a bit different from what I am reading here, so here goes...

    Let me begin with a bit of background. We moved from sea-level (southern Ca) to the Denver area 2.5 years ago. My 4 daughters have all always been robust, healthy kids and we have rarely needed anything more than cough syrup with the exception of Lexie who if she gets a bad cold, still gets croup at 14 which is normally treated with a blisterpack of prednisone to open the windpipe and albuterol inhaler until it is over. That has happened 3 times since moving here in Oct of 08.

    Our DX Starts with a virus, simple cold and Lexie telling me her throat hurts and her telling me she feels unwell. ( In the past 6 months we have had several of these non-specific either tummy or cold episodes which usually resolved in 1-2 days. Even so, last time it happened I had her tested for mono as I though it was unusual for it to be happening so often. Test was negative.)

    So this was on a Friday, she took it easy that night, and the following day, Saturday.

    Sunday; We went to our local pool to start conditioning for the swim team we had just signed the girls up for (a first for us). Lex swam a lap and a half, and said she was getting out of breath, so I gave her a kickboard and moved her to the slow lane at the edge of the pool. 5 minutes later she was out of the water and resting.

    Monday; She went to school, came home and attended her first practice. Was in tears because she couldn't keep up and had to use a kickboard again.

    Tuesday; School as usual and did much better at practice, all smiles as she could feel her improvement.

    Wednesday; Came home from school saying she didn't feel well again, at practice she spent most of the time out of the water saying she felt winded.

    Thursday; Called from school, saying she couldn't catch her breath. Called family Dr. and got her right in. Dr listened to her chest, did vitals and said she sounded clear, but wanted a chest x-ray just in case. Dr. called in a RX for prednisone and wanted her to start it immediately. She also wrote a RX for a Z-pack in case the symptoms got worse over the weekend. No blood or urine taken. Got the x-ray and picked up the RX only to find it wasn't our normal blister pack, but instead higher dose tablets. Questioned the Pharmasist who said it was a bit different than what we normally got as it has a bit more in the way of side effects (jitters etc) but that the dose was appropriate. Started the RX there in the store.

    That night was her continuation ceremony from Jr High. She was still having difficulty breathing (breathing was heavier than before with any exertion it seemed) and was very pale. After the ceremony was a dinner dance, which she declined as she said she was exhausted and didn't think she could make it through. We went out for a family dinner at her favorite restaurant where she ate heartily.

    Friday; Woke saying she STILL was not feeling better, still winded but did not want to miss yearbook signing and her last day of school, so off she went. While at school, I got results from the chest x-ray;negative. Questioned the nurse on the prednisone as it didn't seem to be working and was told it is a "burst dose" and we should start seeing improvement soon. Came home looking worse. Lexies breath was "labored" with each breath a FULL inhalation and exhalation-nothing we had seen before. I filled the Z-pack rx that evening and started her on it.

    That night around 10 I took her into our local ER, as she was seemingly going down hill, and now complaining of chest pains. ER Dr. diagnosed her as having GERD and a pulled muscle in her chest from swimming. While we were there they did an EKG (normal) and had her use a nebulizer (which she told the Dr. was doing nothing for her) and gave a "GI cocktail" of Maalox and lidocaine. No blood or urine taken. Sent us home with her still hardly being able to breathe and an RX for prilosec.

    Saturday; I stayed up most of the night watching her, feeling things just were not "right". I noticed that even during sleep, she was doing the full breath in and out each breath. Started timing them, she was running 12-14 breaths a minute. While she slept, I kept googling to see if maybe they were missing something....trying to figure out what would make her do this.

    When she woke up, I got her into the shower thinking the steam might help. It didn't. At this point walking 10 feet to the bathroom required her to sit and "recover" for a few minutes. Now I am really starting to panic and am wracking my brain for what can be causing this. On an instinct, I went over to her and asked her to let me smell her breath... it was sweet but not the "jucyfruit" sweet my mom had during ketoacidosis, but still concerned me. I had her lay down and let me feel her abdomin, my logic being that lungs were clear, heart prooved ok, so maybe something was enlarged and "pressing" (neither of the Dr's thus far had checked abdomin so I figured what the heck). When I got to her flank on both sides she said it hurt. Sweet breath and kidney pain...we are going in.

    Arrived at the ER and she asked me for a wheelchair. got taken back immediatley and waited...and waited. Pediatrician came in and I told her what was going on and how additionally she had tenderness in her flanks. She examined Lex then sat back down.

    Dr: "Well, I'm not sure what else I can do that hasn't been done already".
    At this point, I'm getting a ticked.
    Me:"Well, I'm thinking it's time for some bloodwork as this is obviously not asthma or a simple upper respiratory infection"
    Dr. " Well, I can run some random bloodwork and see what comes back and do another chest x-ray"
    Me: "Great. Another thing that is worrying me is her blood gases since she has had this labored breathing" (remember I have been googling all night)
    Dr: Rolls eyes, "Well I can tell you they are going to be off because she is hyperventilating"
    Me: "No she isn't, she was breathing this way even when asleep"
    Dr.: "Let's get these started and we will go from there"

    Ex-ray is done and we get back to the room, and wait....finally tech comes in and draws blood. By this time Lex is barely coherant. Half hour later nurse comes RACING in wanting to get more blood. I ask whats going on, he says "just a sec, I have to get this now!" I ask what is it, he replies that they are drawing for blood gasses. (Let me just add here that I really want to play poker with this guy as he has NO poker face, he had this "deer in the headlights look) My heart sank. "Did her bloodwork come back with anything?" His reply was "Yes, apparently her bloodsugar was 394"... it clicked in my brain and I asked him ..."So you're thinking ketoacidosis?" He replied that the Dr would be in to talk to me in a minute and raced off.

    I go to the room door, and am standing there as the Dr., now visibly concerned comes racing over. "I am SO sorry, I am SO SORRY". She then proceeds to tell me Lex is diabetic and in severe ketoacidosis ...We said the last word together and she looked shocked. She asked me how I knew and I told her my mom is diabetic and I had smelled some sweetness on her breath. She asks me ..."why didn't you tell me?" to which I replied I tried to, when I asked you for blood gasses but you didn't seem concerned...again, she apologised and informed me and they can't treat her there (it is a satellite ER). She explains that they are trying to figure how to transfer her...who can get there first air or ambulance.

    Ambulance arrived probably 2 minutes later. I had followed in my car as I seriously needed to "loose it" and didn't want to scare Lex any more than she already was. When I got to the PICU they informed me that during the ride over she had become "non-responsive" and explained the significance of it to me. I remember being right in Lexies face telling her.."Find your voice , I need you to find your voice Lexie...say anything PLEASE.She was looking at me with a frightened stare (I will NEVER forget that face) and I could see her lips moving slightly yet nothing was coming out. As they were about to wheel her away to CT, she finally said "Hi" and my heart jumped with joy. They took her off for a CT scan which came back normal...Thank God.

    She spent the following 2 1/2 days in the PICU, which was impressive care to say the least. Hourly neuro testing improved over the next several hours and finally at about noon the following day she was "back".

    In retrospect the symptoms were all there, but attributed to other things.

    Weight loss...about 20lbs over the past year had been attributed to being 14 and loosing her baby fat and she had been a bit on the chubby side (my eldest daughter and I both shed it at this age)

    Thirst/urine output...the entire family has been thirsty since we moved to high altitude from sea level.

    Sleepiness... What teenager doesn't love to sleep?

    A week later and she is doing great. It's been a tough week, but we have survived to tell the tale. :)
     
  15. yelley

    yelley Approved members

    Joined:
    Apr 9, 2010
    Messages:
    74
    Rationalizing the signs of Diabetes.....

    Very long, enjoy if you read

    February 2010 my daughter started her softball season. The practices were many and games twice a week.

    March 2010, a month into it, of course my daughter was very thirsty. She began to have small "accidents" but this is from a child who has had over 20 documented UTI's since the age of 2. Ok, is she getting another UTI?? Let's keep an eye on things....

    The thirst continued and I was getting to the point where I thought it was just ridiculous and she was trying to get attention because dad is such a worry wart... He says to me "I had a friend when I was younger that was always thirsty and they ended up finding out he had Diabetes". I couldn't believe that he would even think such a thing. I mean nothing bad ever happens to my kids. He got an idea to go into Target and buy one those meter things for people with Diabetes, I pacified the idea and off we went. Once in Target staring at all these meters and trying to read the boxes to figure out what the heck they were, we figured even if we bought one of these things we would have no idea what the numbers meant. I mean what good is a meter if you don't know what you are looking for? (talk about ignoring the signs...)

    Friday March 26th 2010, that same week, my daughter had a softball tournament. In the first game she was being her slow sluggish self and really started to get me upset. I kept telling her to hustle on and off the field. She was drinking a lot and of course had to keep using the restroom. At one point when she was out on the field she even squatted to try and "hold it" but didn't quite make it. Because of her attitude which I took as "not wanting to be there" because she was so out of it, we actually pulled her from the game.

    Saturday March 27th 2010, two softball games today. Of course it is warm out and she is drinking a lot, that's what the girls are supposed to do when playing tournaments.

    Sunday March 28th 2010, last game of the tournament, she went home and rested afterwards.

    Monday March 29th 2010, off to school. No change, just monitoring her.

    Tuesday March 30th 2010, after school I had a Dr. appointment so I picked the kids up and took them with me. They waited in the lobby where my daughter falls asleep in the chair. I wake her to leave, we get home and she falls asleep again. Wake her for dinner and look at her eyes and start to get a little nervous. They are so glassy, she looked like she was on drugs. My husband even questions her to see if someone put something in her drink at school or gave her something (6th grade, who knows nowadays). Her tongue was covered with a thick white layer. It looked like thrush that babies get. I told him maybe she is just not getting enough good sleep in the middle of the night because she kept getting up to get something to drink. I had her sleep with me that night to see how often she was getting up.

    Wednesday March 31st 2010. When we woke up in the morning she looked just as bad as she did the day before. She was craving canned pears and felt like she was going to throw up. We decided we would take her over to our family doctor as soon as he opened up at 9:00am. We know him very well and once my husband got there the doctor went out to the car to see her and prick her finger. He immediately told my husband to get her to the ER. The doctor called in ahead so he did not have to wait.

    I had gone into work in the morning before he took her and I was searching the internet for a relation between thrush and diabetes. What I found was DKA. I called my husband and he told me they were on their way to the ER. I left work just balling and made my way to the ER very shaken.

    When I got there nurses and doctors everywhere. They were trying to insert an IV into this very dehydrated little girl and all she did was just lay there with her eyes closed barely talking to anyone. Every now and then you would here her say "it?s ok" to the nurse who had poked her 6-8 times trying to get the IV going. The nursed commented on how they had heard about people with DKA having a fruity breath but had never smelled it before until then. I was told in the beginning that she would probably be admitted and sent to a room upstairs. We were at Mission Hospital in Orange that has a CHOC division in it. We were later told she would have to be transported to CHOC of Orange County because of how severe her DKA was. BG 542, large keytones, A1C 13.8.

    When the transport team there were 5 of them and of course they had to try and start another IV, well you know how that goes. She was basically falling in and out of consciousness. Once we arrived to the PICU they started the insulin and other fluids. As they tried to bring her BG down with insulin her potassium was dropping to dangerously low levels. She was now at risk for cardiac arrest. They slowed the insulin and had to start a straight potassium drip. This is very painful and even though she did not complain the tears just rolled down her face as she said "I know I need it". That had to be one of the saddest things to see.

    After 2 days in PICU we were transferred to a regular room where we still could not get her BG below 300. After another 2 days, we begged to be released because the next day was Easter.

    Luckily for us it was Spring Break so we had a week to adjust.
    Talk about seeing the signs, ignoring them and feeling incredibly guilty for the way that this all happened. I mean we pulled her out of a game and I thought she was just trying to get attention, urgh.. I hate myself for that.

    The best part of this whole mess is that me and my daughter have become so close. Sometimes I would think was this gods way of bringing us closer together, who knows.....

    The other good thing, she doesn't remember any of it :cwds:
     
    Last edited: Jul 7, 2011
  16. RacerWife7

    RacerWife7 Approved members

    Joined:
    Apr 7, 2011
    Messages:
    108
    Textbook perfect diagnosis - we all should be so lucky

    Tyler had just turned 6. I had him scheduled for his annual physical about 2 weeks after his birthday. We went in to his appointment. They did the usual stuff; asked the usual questions; checked the usual things. We were done, had paid our co-pay and were out the door and in the car when the receptionist called us back in, telling us that the nurse wanted to speak to me. I've known the nurse for a long time and we have some common interests. So, I thought maybe she just wanted to tell me something personal. Well, I was wrong. She called us back in because she had just done the urinalysis as we left. He had sugar in his urine. She wanted to do a blood glucose test. She sat him down and stuck his finger and got a reading of 409.

    I had NO idea what this was all about. We have no family history of diabetes on either side of the family. And we had no warning that we knew of at the time. Needless to say, we got sent directly to the hospital for a 2.5 day stay and intensive training on how to care for him. Poor Tyler had NO idea what was going on or why people kept poking him with needles. He was kind of in shock over the whole thing, I think. But, as most kids do, he adapted very quickly and he's been fine ever since. Obviously, having T1 isn't a great thing. But, he's done great considering what he's gone through.

    As we looked back, there had been a few signs here and there. But, there wasn't anything we would have been able to pinpoint as diabetes. It was just too early for that. His A1C came back 8.3. He had only been diabetic for 6-8 weeks. When I think about the sweets he ate 2 weeks before at his birthday party, I CRINGE! ACK!

    So... here we are. Right now I'm waiting to hear from Medtronic. We have spent the past 3 months with Tyler on insulin pens (Humalog & Levemir). But, starting in August, he'll be on a MiniMed. We already have it. We're just waiting to make a training appointment and then we'll be all set.

    As the title suggests, our experience was lucky and has to be a best case scenario, considering the alternatives. I consider us very lucky that things transpired the way they did.

    Updating to add: As of 8/5/11, Tyler will be on the MiniMed, though with saline. On 8/10/11 he'll be fully on the pump. :)
     
    Last edited: Jul 11, 2011
  17. Merry

    Merry New Member

    Joined:
    Jul 30, 2011
    Messages:
    4
    Mom of 2 kids w/type 1, from Maine!

    Hi, I'm the mom of 2 children with type 1 diabetes, a daughter diagnosed in April 2000 at age 20 (now 31) and a son diagnosed in December 2005 at age 9 (now 14) who also has high functioning autism. I have been a member of some forums for autism but never for diabetes. Wish I had known there was one sooner. Great to be here!
     
  18. obtainedmist

    obtainedmist Approved members

    Joined:
    Aug 3, 2010
    Messages:
    1,537
    Welcome to this forum. I've learned so much here! My daughter was diagnosed a year ago and will be going off to college (in Lewiston, ME;)) in a month! I know there are other families here who's kids are dealing with both Autism and Type 1.
     
  19. Merry

    Merry New Member

    Joined:
    Jul 30, 2011
    Messages:
    4
    Hi Molly's Mom!
    She must be attending Bates College? Wonderful school! Are you nervous about her going so far away? Thanks for welcoming me. Merry
     
  20. kimmcannally

    kimmcannally Approved members

    Joined:
    Feb 28, 2010
    Messages:
    1,356
    :D:D I love you! :D:D
    J was dx with Type 1 at 12 and he is also Autistic, high functioning. Very, very nice to meet you!
     

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