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Diagnosis Stories

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

  1. wearingtaci

    wearingtaci Approved members

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    Sophie was diagnosed almost 2 months ago and looking at her now and then I can't believe we didn't know just how sick she was and how we had reasons for everything that was happening.
    When she started 4th grade in Sept the teacher encouraged all students to have water bottles in class and to drink plenty to stay hydrated. So when Sophie started drinking all the time we chalked it up to her talk g to hydration idea to the extreme. Of course she was peeing all the time because she was drinking all the time.In Oct my parents had her spend the night and my dad who is a type 2 diabetic asked if he could check her BG because she was drinking so much. I told him no,because there was no family history and I didn't want him to hurt her with a finger poke. I looked up the symptoms of diabetes and she wasn't revenous so I just assumed she was really really well hydrated. In the middle of Oct she started losing weight and was even thirstier,we thought it was because she was filling up on fluids at mealtime and started to limit her liquids at meals until after she had eaten. In early Nov she was complaining of bad tummyaches,wasn't eating much at all and would vomit about once a day after meals. I was getting worried that maybe she had an eating disorder.
    The night before Sophie was diagnosed she had a very violent vomiting episode and my husband called first thing in the morning to get her an appt with our family practice Dr. I took her to the appt and became really concerned when she was weighed and measured. Sophie weighted 48lbs and stood 4'5.The Dr did a normal physical exam and sent us for some blood work and would call us in a few days with the results. On the way ho,e we stopped at the grocery store where we walked up and down the aisles picking out food she liked and promised me she would eat. There was a lot of carbs in the cart when we left and I didn't know any better.
    In a bit of weirdness I had left my phone at work the morning Sophie was diagnosed and planned to pick it up the next day,since I wasn't expecting a call for a couple days. My husband had put her personal phone on silent when we got home that night. Little did we know Sophie's blood work had come back and she was in DKA. Finally the Dr got ahold of my parents who rushed to our house and told us to call the answering service immediately. Of course her BG was 662(fasting)and she was severely dehydrated,with ketone and her PH was bad. We were told to go straight to the nearest ER. In the ER we were told it was type 1 and that Sophie would be transferred to the children's hospital to be stabilized and for our diabetes teaching. We could ride with Sophie and had to follow the ambulance. Once we got there she was in the PICU getting her first if her poke among all the other things that come with a PICU stay.Luckily Sophie responded well to the insulin and we were able to quickly figure out I/c ratios and came home 3 days later.
    We have been really lucky that Sophie has taken to her new normal and has handled it all with a lot of maturity and grace.Now 2 months later she has BG that are within the normal range almost all the time and looks so healthy and happy. We are also so lucky that at school the secretary is an insulin dependent t2d who is great about helping Sophie while she is at school and watching out for her like I would if I were there.
     
  2. kirsteng

    kirsteng Approved members

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    Our youngest child, Grady, was just diagnosed with type 1 2 weeks ago. He was 3 1/2 at diagnosis.

    Grady was an incredibly healthy child his entire life. He'd never even had a round of antibiotics, had only had a handful of colds and a couple of flus. He did have a flu a couple of weeks before the diabetes symptoms started.

    Just after Halloween of 2012, Grady began drinking a lot of water. It was especially noticeable as it was cooler weather, so there was no good reason for it. Not long after, he began peeing more too. It started with the odd overnight accident (we started putting him back in pullups and put up a sticker chart for dry nights), but progressed quickly into even daytime accidents - which were very uncommon for him.

    One thing I know now was a big sign: out of the blue, he began peeing ALL OVER the toilet/wall/floor when he used the bathroom. I thought at the time that he was just not being careful, but in retrospect I know it was because his need to urinate was so urgent that he just barely made it to the toilet at all. I gave him heck a few times for his toilet messes. :( Around this time we had an appointment with his pediatrician for his sister, so while there we ran by him our concern about Grady's thirst, and asked if it could be Diabetes... we both knew these were the signs and had discussed it from the beginning. Our ped. just asked if he had been losing weight, and we replied that he hadn't, so he just said 'don't worry about it! Some kids are thirstier than others". If only we'd tested at the time...

    His energy was not noticeably different, although now that I look back, I can see that he was watching more tv than ever before... but I thought he'd just developed an 'octonauts' addiction. ;) I did notice that he was a bit slow and whiny though when we'd walk his older brother and sister to and from school. In september he walked there and back happily, by December I would piggy-back him part of the way. Again, I wrote this off to this being his first Canadian winter (we had lived in Chile for the past 2 years so he'd never experienced cold and snow).

    After the first 2 or 3 weeks of his increased thirst/peeing though, Grady caught a stomach bug which lasted a couple of days (I know it was one because the rest of the family had it at the time, too). After that, his symptoms disappeared for 2 weeks - he was completely back to normal. We thought the drinking must have been a lead-in to getting the flu.

    But then it started again out of the blue, around the beginning of December. Just the same thirst.. he'd drink 2 or 3 glasses of water before he even had his breakfast... and his appetite was great. We told ourselves not to worry about it, as his dr. had said it was nothing. But on the 23'rd we went to a family Christmas party. One of dh's cousins is a pediatric nurse. so I ran past her our concerns about Grady... meanwhile, he is running around the house like a lunatic with his cousins, looking none the worse for wear. Still, with the symptoms I mentioned, she said immediately that she'd have his blood sugar checked asap. One of Dh's aunts overheard, and told us that one of DH's great aunts was not t1 herself, but of her 11 children, 5 had been t1 diabetic. That was the first we'd heard of any family connection (very big and spread-out family).

    So after we got home, we talked it over and decided that DH would take Grady out to a walk in clinic to get a blood test. Grady had a snack of cheese and triscuits before he left. When they got there, the dr didn't want to check, said not to worry about it, just book an appt after Christmas with his ped. DH insisted, so the nurse came in and did a finger stick. She went running out to get the dr immediately - his blood sugar was 33 (about 600 on the US scale). They sent us immediately to children's hospital.

    Dh came and picked me up as well as Grady's older brother and sister, and we all went to emerg. They took us in immediately and it didn't take long to have an official diagnosis. They started an IV (incredibly, very easily.. the man who did it was AMAZING with kids, had them all laughing!) and waited for his blood work. Luckily, he came back only with slight ketones and his electolytes were good, so he was able to come home with us that night after his first shot of insulin.

    We went back the next morning (Christmas eve) for more insulin, but after that they set up a community nurse to come in and give his shots until after Christmas holidays, when we could be trained.

    Still in shock about it all.. and very sad, but at the same time we feel lucky that he wasn't really sick yet before we caught it.
     
  3. mysugababyjo

    mysugababyjo Approved members

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    March 2011 Joe's DX 9yrs old

    It was my first day off for maternity leave I was expecting our 3rd baby finally a baby girl, after two boys. Joe was 9years old and he had come home from school sick and vomitting. I had noticed frequent urination and thirst and thought of a friend of mine who had a child who was T1JD. I asked her to come over and check Joe for me. She checked and the meter just read Hi. My friend told me that I needed to call my Primary Dr asap because when a meter reads Hi like that it means that the BS is higher than anything they could read, and her meter went up to 500. I had no idea and as calm as could be I asked her if that was bad and what did that mean? She told me to just call. I called the Primary Dr and told them that I needed an appt asap to check his sugar with their meters to rule out any misreadings. The Drs office got me right in and checked his sugar. I looked at the nurse and smiled not knowing anything and asked for the reading she said 458. The Dr came in and said that he needed us to head over to children's hospital in Philly and pack our bags for a week. I said a week? why? he said that they would be teaching us all about diabetes. I told the Dr but Im 9mos pregnant he replied well you'll be in the best place to have a baby. Awe Geez! Low and behold the rest is history...The first time I realize that this was life changing is when I looked a the Dr and said, "Well okay now what do we do to get rid of this? How do fix this? What do we do?" and he looked at me and said, "You don't" :mad::confused::mad::(
     
  4. Arleigh9003

    Arleigh9003 Approved members

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    Juliens Story

    My son was 14 months at diagnoses .. Labor Day weekend last year. I wrote his story in my blog , if your interested take a look http://jellybean-dlife.blogspot.com/
    Thanks :)
     
  5. SandiT

    SandiT Approved members

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    About three months before my daughter's dx, she had a 'dizzy spell'. Her 'eyes were dizzy' and she felt dizzy. She was very lethargic. We took her to ER. I asked then for an A1C. I was told quite firmly "She doesn't need one."

    About a month later, she was lethargic again, and dizzy again. This time we took her in to the doc. The nurse practitioner again said she didn't need one. Again quite sharply.

    So I started to think I was nutso. Kira got hungrier and hungrier first. Every time I turned around, I was feeding her. She finally complained that "I'm so hungry, my tummy hurts bad" about 5 minutes after having eaten a huge bunch of food.

    I called the doctor and got the "well, it's normal for kids when they go through a growth spurt."

    A few weeks later, she got sooo thirsty. Every time I turned around she was begging for milk. I would make her drink water. "If you're thirsty, your body wants water," I would tell her over and over again.

    Her lips got chapped. She seemed dehydrated to me, but I thought, "Well, it's the onset of winter. The climate is dry. She's not drinking at school, no doubt... running around too much and far too busy."

    Then a month or so after that, she started getting stomach cramps so painful that she'd constantly say she needed to go potty, but couldn't. I did not know this was a possible sign of diabetes, as I was only familiar with type 2 and gestational (I had that while pregnant with her).

    I thought she was coming down with a stomach bug. It got better the next day. Went away the day after, just a couple minor episodes. Then it got worse again on Wednesday. I called and got an appointment set up for Friday. I figured that, you know what, I could give her tylenol to get her through the night (it had worked the second day, so it seemed logical).

    But there I was at the school picking her up on Thursday, and the teacher said, "By the way, I just wanted to let you know. Kira's drinking and awful lot at school."

    My heart just fell to the pit of my stomach. But still, I thought, "Nah. The doctors kept telling me she was fine! I'm being silly!" However, I still called the doc. I told them that I just wanted to let them know more of what was going on.

    Then I took my daughter to martial arts class. There, she kept leaving to run to the bathroom over and over and over again. My heart was just breaking. We left and I couldn't even get her to McDonald's to get her a Happy Meal (she begged for one, so I decided a treat while she was feeling so horrible... why not? It's one time...).

    We went in to the bathroom there, and she tried and tried to and couldn't. I pushed her to leave, even though she still thought she HAD TO GO so badly.

    On the way home, I got a call, "We have a 5:30 appt. and the doctor would really like you to have it if you can make it?" She wasn't even done speaking before I had turned the car towards their office. I begged them to wait because I was a bit far to make it quite that fast.

    When we got there, Kira went into the bathroom, and there she sat on the toilet and I LITERALLY had to DRAG her out (I pulled her pants up first, I swear). Then they wanted her to pee on a freaking stick. Are you kidding me? She just spent 10 minutes in the bathroom!

    Finally, finally... she peed on a stick. Her keytones were high, so they took a bg reading. It was 660. "We're walking you right over to the emergency room." It was across the street, thank god.

    To the ER we went. They weren't really set up for little children with diabetes, so they sent us to Boston. She and I rode in an ambulance while hubby went home. (By the way, thank god for insurance... total bill for that ambulance ride? $13,000!! Dear god).

    Boston Children's really does earn their reputation. It's no wonder they're second ranked in the US, they are really, really good. It wasn't a perfect stay, but I am grateful for the care we got.

    It truly is a nightmare, though. It feels so very, very, very wrong to hold your child down while they're tortured with needles. It just does. Your intellectual knowledge that it's for their own good doesn't make it FEEL any better. It's horrific and it really, really hurts.

    By the time I got home I was running on about 3 hours of sleep after a 4 day stay. But when I got home, it didn't get much better, because it takes me hours to get to sleep (and hours to get BACK to sleep if awakened).

    On the 2nd or 3rd day home from the hospital, I gave her 5 units when she was supposed to get 1 before bedtime. The nurses were quite nonchalant, but I was convinced that I had killed her. It was a genuinely terrifying and agonizing situation.

    It's better most of the time now, but at that time, I was convinced I would never ever make it. And she would never get better about needles or finger pokes.

    She did. Now she is, as she says, "an old pro" at it. I'm proud of her.
     
  6. mamattorney

    mamattorney Approved members

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    I'll share my daughter's story . . . she was diagnosed about 4 weeks ago on 3/11/13.

    Looking back with 20/20 hindsight, the signs were all there. We joked about how often she went to the bathroom and how she couldn't pass a water fountain without drinking. But at age 10, she got her own drinks and we weren't keeping track.

    In January, I noticed she looked like she had lost some weight. I actually accused her of taking someone else's jeans home from a sleepover because they were so loose. They were her jeans of course, but then I just thought she was growing up and not out - redistributing her weight not losing weight.

    In February, she told me she was having vision problems - she said the TV or computer would go blurry and then come back into focus. She also said she was sometimes seeing halos around lights at night. I went on the internet and just thought it was dry eyes when she was focusing on screens, so I bought eye drops (mother of the year). She complained again and so I made her an eye doctor appointment during Spring Break so I didn't have to pull her out of school (her appt. was about 2 weeks post diagnosis).

    Finally on the Saturday before her diagnosis we had a warm day and she wore a short sleeved shirt. Her arms looked skeletal. I probably hadn't actually seen her bare arms since November since it was winter and she was always in long sleeved shirts/pj's.

    I panicked, thinking she had either some kind of GI issue or an eating disorder (all the bathroom trips sent my mind toward bulimia, not diabetes, I didn't even know weight loss was a symptom of diabetes). I called the pediatrician, but they were closed for the day. I was thinking, this is serious, but not an ER issue (she either had Crohn's or she didn't was my theory) so I told my daughter that I would try to make an appointment for Monday or Wednesday and not to be surprised on Monday if they called her out of school.

    Meanwhile, I started googling unexplained weight loss in children and it led me to a WebMD quiz that resulted in diabetes as the likely problem (first time WebMD was ever right), so I stewed about it all weekend, but also had in the back of my mind that WebMD always seems to point to Death Disease, (when all I really have is a sprained ankle) and called the pediatrician and got a 10:30 appt for her on Monday. We talked to the doctor, he did a physical, tested a urine sample and told us it was diabetes and sent us to the local hospital. I was shocked. I thought they would have to do more tests - sort of a "give three vials of blood and we'll call you in a week" - not a, "go to the hospital RIGHT NOW" situation.

    Her numbers showed that even though she presented fine (alert, laughing and happy), she was in DKA, so they transferred her by ambulance from the local hospital (which had a satellite division of Lurie Childrens' Hospital) to the main Lurie Children's downtown where they have pediatric endo's there 24/7 and we went from there. Spent two nights at Lurie and then came home after dinner on Wednesday - she was taken out of school on Monday at 10:00a.m. and was back at school Friday of that same week. Seemed so surprising to me that such a huge change could take place in 4 days, but that she was back to school before anyone really even missed her.

    But, so far so good, we're taking it one finger prick/meal at a time.
     
  7. theMad_D_Dad

    theMad_D_Dad Approved members

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    I think every T1 parent has gone through this. My daughter was getting devastatingly sick every few days, but when she got sick , it didn't seem normal. She would do this thing? like being completely awake but kept feeling like she was falling, she would even shoot her arms out to catch herself. It was scary, we practically lived in the ER for a month straight. They kept telling us the same thing. "Stomach Bug" I'm no doctor by any stretch of the imagination but a parent knows when something isn't right with their child. During this time, we were also trying to care for my wife's grandmother who was also in and out of the hospital, then hospice, and then finally passed away. I remember at her funeral, I was a pall bearer so I had to sit up at the front, I could hear my daughter in the back absolutely pleading for something to drink, she would drink, drink, and then drink some more. I kid you not that kid finished off a case of bottles water by herself in a day. That night my estranged sister whom we had recently gotten back into contact with listed the symptoms that her daughter had experienced and they were dead on with everything we were going through. We loaded her up, took her to the ER and they still wanted to tell us it wasn't anything to worry about. My wife had to literally plead with them to check her blood sugar, it was so high the meter in the ER couldn't' read it. When they took blood, they told us she was 955, and admitted her right away.
     
  8. Sparrow

    Sparrow New Member

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    Jan 26, 2014
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    I wrote this for a blog I started on January 22nd, 2014. Friday December 27th, 2013, my husband took our 8 year old son to the pediatrician because my son had what I thought was strep throat. We got a prescription for amoxicillin they did the culture not the rapid strep test and when I came home from work and started amoxicillin he started throwing up. I took him to the ER early Saturday morning. They did a rapid strep test which was negative and a culture and decided that he had a stomach bug. They gave him Zofran at the hospital and it seemed to stop the vomiting. We went home and he seemed a little bit better. We gave him his next dose of Zofran in the afternoon and he threw it up immediately. We called the ER to see if we needed to give more they said no. He continued vomiting every hour after that. We called the ER again around dinnertime. They recommended we wait until his next dose at 8:30 to see how he did. We gave the dose at 8:30 and he only threw up once at 9:30. It seemed like it helped. At 10:30 or so he started this rapid breathing. I immediately was going to take him to the ER. My husband called the ER. They said to wait 10 minutes and see if it settled down. I didn't wait I took him in immediately. When we got to the ER they took him back right away. They started doing all kinds of tests and within 15 minutes they told me that he was diabetic and in something called diabetic ketoacidosis. We got moved to the ICU. We spent Saturday night and all day Sunday and Sunday night in the ICU. Monday evening we were moved to a regular room on the diabetes wing. We spent New Year's Eve in the hospital as he still was spilling ketones. we got to go home New Year's Day. He was diagnosed 25 days ago. Since then we've dealt with highs where we needed him to drink more water and exercise or like last night take more insulin. We've dealt with lows where he needed to eat immediately (even at 3 am). We test at 10, midnight, and 3am. We constantly check in to see how he's feeling. Is the irritability because of glucose levels or because he's upset with his brother. He's apologized for having diabetes. We've compared his insulin (INsillion) to Iron Man's arc reactor. We've read books. He travels with his life saving kit and my heart is broken. For his birthday on the 17th he got to have cake. I hate cake now. It is evil. It messes up glucose for a long time! And I'm a cake decorator for my profession. My friends and family have been pretty supportive. There are coworkers that don't understand and so many people think type 2 and type 1 are the same. Type 1 is a completely different beast that scares me. My husband has type 2. Sugar Bear calls the blood glucose readings we have to take 6 to 10 times or more a day BS. I agree. This is BS. No child should have to go through this. No family should have to figure out a "new normal" of needles and life and death decisions daily. I want a cure. Insulin (INsillion) is not a cure.
     
  9. scubanhooba

    scubanhooba New Member

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    I will remember this day for the rest of my life. April 14, 2014. I took my daughter to her second NHL game on April 12. We are hockey freaks and we were SO excited for her to get to her first Dallas Stars home game. The trip up to Dallas was a good 3-4 hour trip, exacerbated by an 8 yr old that needed to stop every 20 minutes to use the bathroom. This is something Ky has done in the past but was more annoying than usual. We got to the game a tad late but still had a blast, in between pee breaks. I knew she had to have a UTI. We stayed overnight in Dallas, and symptoms seemed to have improved. The next day, again, while traveling the pee breaks resumed, but less frequent. Unfortunately we had stopped at a store and she had picked up a bunch of sweets, which I completely regret. When we got home, we rested a bit then took a trip down to the Aquarium in town. Peeing again like crazy and of course, now too late to do urgent care. Alright, we will go in the a.m. During the night, I let her stay in my room, since my husband was away. She wet the bed. Now this was completely uncharacteristic of her. She hadn't drunk enough to do so, we were definitely facing a UTI.
    Fast forward about 12 hours to when we are at urgent care. We give the token urine sample. Nurse comes in and says, "Uh, is she diabetic?" My response is an emphatic, "No." Which she responds with a "Hmmmm.....well, we are going to do a fingerstick." I watched Kylie cringe on her first fingerstick of many more to come. The nurse's eyes said it all. She turned the meter to me and it read "359". The told us to follow up with her pediatrician in the morning. Since I have worked in clinic for years, I knew that was not the best case scenario. I literally did not let her out of my sight for the next day and called my pediatrician first thing in the a.m. and was given a 9 a.m. appt. We walk in to find that my pediatrician no longer takes our insurance. NICE! I looked at my husband and said, "I am NOT screwing around anymore." Off to Texas Childrens we went. We ended up admitted for 3 days and our life changed forever. I cannot talk more highly of the staff at that hospital. I love how they took care of her, treated her as a young adult, not a child, and educated us all. They were a beacon of support for us, who were emotionally drained. We have seen many of the endos, but Dr. Hicks took over our care when we were released. We love her. Again, she never treats Kylie like an baby, but a young adult who is empowered by her diagnosis, not condemned.

    Thanks for reading our starting story. I hope to one day present a happy ending when a cure is found.
     
  10. KHS22

    KHS22 Approved members

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    My little E was diagnosed a little over a year ago now, just after her 3rd birthday.

    Now, we knew she was high risk for diabetes. Her father has diabetes, as does about 5 other people in the family. I'm in health care, and highly involved in T1D work, so we decided to do TrialNet. They are first eligible at 1 year old. For those of you that don't know the trial, they screen family members of those with diabetes for the 5 antibodies associated with T1D. At 1 year old, they told us she had one antibody (GAD 65) - but that one is pretty non-specific. Okay, not too worried. Tested again a year later as part of the trial, and they say she now has MIAA - more specific. They asked to repeat it to see a titre. So we do that shortly after her second birthday, and that test not only comes back with a high titre, but in just the couple weeks since her last test, she has now developed 2 more of the antibodies (IAA, and ICA). These are not only highly specific for diabetes, but she has 4/5 antibodies associated with diabetes at this point.

    So then they asked us to meet with one of the Pediatric Endocrinologist. She's about 2.5 years old at this point. She explained that she expected my little E's risk to be over 80% in the next 5 years of developing diabetes. So for that reason, she wanted an A1C every 6 months to monitor for onset.

    She had an A1C then - 4.9%. 6 months later 5.2 %.

    Then right around when she turned 3, there were some subtle changes in her. More moody, crying more. I didn't think much of it at first. Then one weekend, she wet the bed ( i know this doesn't seem unusual for a 3 year old, but she potty trained through the night and day at 18 months, and never did this). Then, the next few days we watched her like a hawk, and did feel she was drinking more than usual. Not a crazy amount, but noticable when watching.

    So after two days of the drinking more, we tested her in her sleep one night and got a 10. 4 (180). Check again, same #. I knew right then she had diabetes. No one without diabetes should have a sugar in the 10's.

    Still, we decided not to panic, and watch things. We tested her a few more times over the weekend. Mostly around 8-10 the whole time. Still kind of able to keep myself from freaking out. Then on the third night, I got an 11.1, (200), which is diagnostic for diabetes. I felt my heart sink at that moment, and finally had to give into what, I really already knew was happening.

    I am so lucky to have the people I do in my life, including a friend who is a paediatric endocrinologist. I called him (it was 11pm) and asked if he was working the next day, said I needed to bring E in because I was pretty sure she had diabetes. He came right over. He checked her out, made sure she was alright, and spent some time chatting with us about what to expect and checking in on how we were doing.

    The next two days we spent in the day program of the peds unit. They checked her A1C again, 5.9%. Not shockingly high, but up from 4.9%, we knew what path she was on. So we met with the dietician, nurse etc and talked about the impending diagnosis. They didn't start her on insulin that day, as her sugar didn't go above 11, and really thats target for a kiddo her age. So, we were sent home to test 4-6 times a day and keep checking in.

    Truthfully, the next while was the hardest. I kept asking my peds endo friend - when will she need insulin??? will it be a slow decline, or will her sugars just sky rocket? He didn't have any answers, as he'd never had anyone diagnosed so early before.

    For about 2 weeks, she continued with her sugars in the 8-11 range. Then, for another couple weeks, they were even lower, not having a # above 8 (140) in a couple weeks. I started to settle into the fact that we couple be looking at months or even years before she was needing insulin. The team even had us cut back to only checking her once or twice a day, as her #'s were so good. This really messed with me mentally. I kept saying to my husband "does she have diabetes???". I knew she did, but it was horrible waiting, not knowing when she was going to get sick, knowing what was coming for her.

    And, just after I'd gotten used to this, about a month after it all started, one day we test her and she was 20 (360). I wasn't comfortable with her at that #, so I called my friend and we started some humalog that night. Before we went to the Santa Claus Parade.

    Both because she was little, and because we caught it so early, her insulin needs for the first 6 months or so were so small, it was a PAIN. She was on about 1.5 units TDD, diluted humalog, eyeballing 1/4 units of levemir. It was crazy! We tried just taking her off a few times - as some kids in 'honeymoon' can do, but she'd skyrocket over 20's. So she needed that little 'sniff' as my friend called it, of insulin.

    Anyways, thought I'd share, as my story is a bit different than most. I am SO grateful she didn't get too sick, that we didn't have to be admitted etc. I am so glad I kind of had the 'heads up' from trialnet that she was likely going to develop diabetes - I think that gave us a discerning eye to catch subtle symptoms early.
     
  11. Mama Salty

    Mama Salty Approved members

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    This is going to be long but I think I need to sort of rant and get the whole thing out of my system. Hope that’s okay…

    My daughter's diagnosis story started one year ago when she seven, at the very end of 2nd grade. We were shopping around for furniture and I noticed she had to use the bathroom a few times in each store. And she kept getting drinks of water from the complimentary water cooler, whereas she's not usually interested in water. At first I thought maybe she was just peeing because she was drinking more. I was aware of the symptoms of diabetes but there's no family history on my side or her dad's. The next day was worse. I had just recently broken up with my T1D bf and that night I jokingly asked my sister if he could have cursed my kid with diabetes as revenge. I also asked if her (somewhat older) kids had gone through any phases like this, but she couldn't remember. The next day wasn't any better. I didn't think she had a UTI because there was no burning or anything like that…but she didn't have any other diabetes symptoms like hunger or weight loss either.

    It was the Friday before Memorial Day weekend. My ex and I have the kids week on/week off and Friday is our day to switch. He said she'd seemed fine the week before - they'd gone on a long car trip and he would have noticed if she'd needed to stop and pee every ten minutes. I told him he'd need to make her a Dr. appt. He said, "UTI?" I said, "Well...it could be diabetes." I worried all weekend. The ex had to work on the holiday so he brought the kids to my place on Monday morning. My heart sank. My daughter looked awful. It looked like she'd lost 20 pounds over the last two days. She was gaunt.

    At that point, I guess I knew. Her doctor's appt was for Tues morning. I thought about taking her to ER, but I think part of me just wanted her to have one more day of normalcy. The ex had to work Tues so he dropped her off with me. I have a sort of "go" bag that I keep a lot of traveling stuff in and I put a few more things in it, just in case, but then I left it at home. I found her favorite stuffed animal, but left it at home. It was like I wanted to be prepared, but at the same time, I didn’t *want* to *need* to be prepared, if that makes any sense at all.

    At the clinic, the doc grimly told me she had ketones and a lot glucose in her urine. He told me that I didn't look surprised. I explained that I *was* surprised, but at the same time I already *knew* she had diabetes. I was trying hard not to start crying because I didn't want my daughter to get scared. They checked her blood glucose but it was too high for the meter.

    The doc told me take her to the ER and be prepared to be sent from there to the Bay Area, which is what I was expecting. We live in the middle of nowhere, CA, on the coast near the OR border. Any serious medical need and you get flown out of the area. Before we left for the ER, I texted the ex the news. At the ER, I tried calling him. His job at the time was out in the woods, and he had no service. And no way that I was aware to get in touch with him. I called my kids' school in case he had left them a work contact number. Nope. I told the school I was in the ER with my daughter and we were being sent to the Bay Area ASAP and I had no one to pick up my son from school (because I was "babysitting" my kids after school while ex was at job). I began frantically calling all my family members who live in the neighboring county, more than an hour and half away. (During the recent divorce, I had requested to move with the kids to this county because neither my ex nor I have any real connections, friends, or family where we live, whereas I do have family there. Nope.) I finally got through to my mom and she said she would leave work and drive up to take care of my son.

    Meanwhile, my daughter is absolutely miserable. They've put in an IV, they keep poking her, she's starving but she's not interested in the soggy sandwich they've brought her. I haven’t eaten either, but ick. And she doesn't understand what all this fuss is about when the only thing wrong is that she needs to pee a lot, and I have to try to explain to her, without scaring her, that she's actually really sick. At one point, the ER doctor finally came in and talked to me and said he'd see if he could send us home soon. Ummm....what? I don't think you're supposed to send us home. He called the pediatrician who sent us over from the clinic, then came back and talked to me again, this time on the ball with sending us to a children's hospital... Someone else came and asked if I wanted to go to UCSF or UCDavis. I said Davis because I'd been to the city of Davis and liked it (didn’t really know any other criteria to use off the top of my head), not realizing that UCDMC is actually in Sacramento. Ah well.

    My mom arrived in town just in time to get little brother from school and they came to visit for just a minute, then we got word the air ambulance should be there soon so I had to send them to get my "go" bag and daughter’s comfort toy from the house. Meanwhile I was still desperately calling and texting the ex, updating him on everything as it happened. My mom brought the stuff to us and then they left again to try to find the ex through the rangers where he worked.

    The air paramedics arrived and put all these medical doodads on my daughter and strapped her in to a stretcher. And then she had to pee… They unstrapped her and off we went to use the rest room again. The nurse who took care of us all day kindly offered us each an adult diaper for the plane. Yup, me too. Because I’d been running to the bathroom with diarrhea all day. Fun. We both decided against the diapers.

    Finally I get a text from the ex reading, "still at hospital" - wait, is he asking if we're still at the hospital? Is he telling me he's been at the hospital the whole time for some other reason? I immediately call and he tells me he's at the airport. Then I immediately get another text from him telling me he's in the hospital lobby. I'm utterly confused. A few minutes later, he walks in as the paramedics are re-securing our daughter and says, “Hazy out there,” to the paramedics, chit-chatting about the weather. Then he proceeds to tell them how to they should strap our daughter in to the stretcher... And then he tells me I did a poor job communicating with him about all this… I’m actually terrified of flying (plus was having the aforementioned bowel issues) and had thought about asking him to go instead of me if he got there in time, but I changed my mind after this exchange.

    The flight was quick and easy. About 90mins for what is about a 10 hour drive. I thought we’d be in the hospital for two or three days. They originally said we could leave on Friday, but when Friday came they said, oops - their diabetes “clinic” happens only on Monday morning and we need to stay for that. Apparently the person who said Friday thought we could just drive the 10hrs home and drive back again Monday morning… There seemed to be a lot of miscommunication going on. The first night, I finally managed to get some food for my daughter, who hadn’t eaten all day, and then a different nurse came on shift and *yelled* at us as she was about to start eating because we hadn’t counted carbs or given her insulin or anything. (At that point, no one had told us ANYTHING about anything, other than she has T1D.)

    The ex didn’t get to Sac til Wed night. He and little brother stayed at the Ronald McDonald House. He missed his appt with the nutrionist on Thurs because he had a migraine. They didn’t show up til the afternoon. Hanging out with the ex in a small hospital room for hours at a time was not exactly fun. On the other hand, when I think back on that time now, I really value having that time with my daughter, when dad and little brother weren’t there. Her little brother has always been a mama’s boy and doesn’t give me much chance to spend time with just her. So that part was nice.

    Probably the worst part was when we’d been there a few days and she asked me, “So, how many weeks do I have to do this (pokes and injections) for?” I had avoided telling her up til then that this was not an illness that was going to just get better like the flu. I failed to answer her without crying. Maybe the second worst was the presumably well-meaning nurse who told me that people with T1D "can live to be 50 nowadays"… And on the other hand, there’s nothing like being surrounded by babies with pneumonia and 10 year olds with leukemia to make you realize you don’t really have things that bad.

    On Monday, when we were supposed to be released, she got a migraine. She’s had migraines since she was 4, but this one lasted longer than any previous ones, probably due to all the craziness and blood sugar ups and downs. It lasted all dang day. She ate nothing. The nurses weren’t too happy about it. She finally started feeling better that night and we got to leave Tuesday afternoon. I rode the 10hrs back with my ex because it turns out those air ambulances will fly you there, but you're on your own finding a way home. Yikes…
     
  12. Betsy Ray

    Betsy Ray New Member

    Joined:
    Jul 23, 2015
    Messages:
    2
    DKA Mis-diagnosis

    Shortly before my third birthday I started wetting the bed in spite of being fully toilet trained, I was falling asleep everywhere I went, I was irritable (grouchy), and what finally alerted my mom that there was something really wrong was that she saw me sitting in the living room clutching my hair in my hands ... screaming and trying to pull my hair out... because I was in severe pain from toxic burden and swelling of the brain.
    After waking from 15 days in coma (DKA), brain stem damage and complete vascular collapse I was diagnosed with Type I childhood onset Diabetes. My mother was informed that my blood sugars were stabilized and that I was at risk of dying due to severe carbon dioxide poisoning as a result of an inability to breath out this toxic element while unconscious. My body was catabolizing my own tissues to try to get energy (sugar) to cells, and the waste product was killing me. I was the only patient ever to have test results announced over the PA system publicly at the Children's Hospital where I was being treated, as carbon dioxide levels were so high they were unable to determine them and my doctor required that he be informed the minute there was a readable result.

    As I recovered, it was revealed that my memories prior to diagnosis were erased and a new life became superimposed, becoming the new “normal". I was reborn into a future no child should ever face.

    My family was not aware of the symptoms of Diabetes and doctors had assumed that I was ill with a virus of unknown origin.
     
  13. iliisa

    iliisa Approved members

    Joined:
    Sep 29, 2015
    Messages:
    10
    Diabetes has been a part of my life since 1963 – my sister and brother both had type 1. It was MY turn in 1972 when I was diagnosed at the age of 11. From glass syringes, once daily insulin needles, and checking urine for sugar, through today’s advanced diabetes management tools, I have lived through many changes in the world of diabetes.

    I am a retired computer programmer turned marketing specialist who traveled for the majority of my career.

    I gave birth to a healthy baby boy in 1993 who, to this day, is diabetes-free!

    I have been pumping insulin since 2002, always using what my Endocrinologist recommended – the Medtronic insulin pump. I use the MiniMed 530G with Enlite sensor. I use the sensor 24/7 as I have become completely dependent on having its information available to me at all times. I find this ironic since I never wanted to even start using one in the first place!

    In addition to type 1, I was diagnosed with Celiac Disease in 2007 (after 10 years of suffering with misdiagnosis).

    I view diabetes as a lifestyle condition as opposed to a disease. Yes, it takes time, effort and commitment to manage this lifetime disorder, but given a choice of ailments that I had to live with, I’d choose diabetes in a heartbeat!

    I run a local support group in Naples FL for individuals living with Celiac Disease. It was remarkable to me how group members truly appreciate talking with others who have to deal with similar issues they struggle with. For this reason, I applied to become a Medtronic MiniMed Ambassador and was accepted in early 2015. I am also involved with the JDRF attending many local events.

    Thank you for allowing me to be part of this group. If I can reach out to just 1 family and help them learn about living with diabetes, my efforts are BEYOND well worth it!
     
  14. DanieD

    DanieD New Member

    Joined:
    Aug 19, 2016
    Messages:
    1
    So my daughter was diagnosed at the age of 5 on 6/3/2016 it will be 2 years this year.. so anywho when I think about it she use to say her head hurt a lot and get all grouchy I would give her some Tylenol cause that would be her only complaint and it wasn’t an everyday thing.. maybe a couple weeks later she kept waking up in the middle of the night a few times like an hour apart to use the bathroom and one time she called my name cause she didn’t make it to the bathroom and instead she wet the bed her dad said she may keep using the bathroom cause she kept drinking water and milk all day.. so I’m like ok still doesn’t sound right I said i wonder if it’s a UTI so I made an appointment at the Walgreen clinic so the next day I took her to the clinic she said she didn’t have a UTI but she asked when did she last eat I said oh she just ate a pb&j sandwich right before we came up here she said oh ok she has just a tiny bit of sugar in her urine which could’ve came from her just now eating (I had no clue what that meant at that time) so later that night after my daughter had been put to bed I walked past her door and seen her light on I opened her door her back was facing the door and she was squatting down urinating on the floor I said oh no something is really wrong so the next morning I called her ped and they squeezed her in my husband took her up there right away while I went to work he called me around 10:00am and said hey I’m going to put you on the speaker so you can hear the doctor my heart immediately dropped into my stomach the DR. Said well your daughter has sugar in her urine and her sugar is 273 it is a chance she has diabetes I immediately burst into tears I couldn’t believe what I was hearing no one in my immediately family has type 1 or type 2 he said you all need to go to the hospital to see a good friend of mine I have already called him to inform him of you all.. I left work went home to meet up with my husband and daughter we went to the hospital they hooked her to iv’s and such they came and confirmed that she did have diabetes and I cried hysterically saying but I don’t understand I don’t let her eat a lot of junk and she doesn’t even drink sodas so why is this happening(I was ignorant to diabetes at that time) they then said oh this is not your fault she has type 1 diabetes and explained it to me I was still upset they said I needed to do her shot I was so afraid as they handed me the syringe my daughter was screaming and kicking her legs saying please mommy I’m sorry, I’ll be good, don’t be mad at me mommy please don’t give me that shot!! My heart broke into pieces cause she thought she was being punished! I cried hysterically while my hand shook the nurse took the syringe from me and hugged me and said don’t worry she will be alright you have to do this cause she needs this insulin to stay alive which was the motivation I needed I did her shot and it was all over they talked me through bg checks they discharged us from the hospital and that Monday we started training classes... I felt like 6/3/16 was the worst day of my life it was right before she started kindergarten but she is fine and we are fine! We struggle sometimes but we make it through each day so Thank God!
     

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