Stories of diagnosis

Valerie - posted on 11/10/2008 ( 73 moms have responded )

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I would love to know how all of you found out your child had diabetes. My baby started throwing up about two days before diagnoses. The doctor thought it was a virus and told me to give her juice and pedialite to make sure that she didn't dehydrate. Two days later, she was like a rag doll. I took her to the doctor. She was do dehydrated anyway that they couldn't get an IV in or anything. They managed to get a little blood from her which would later determine that she had diabetes. They stuck a feeding tube down her to get fluid in her. Her pediatrician was off that day, but heard what was going on and came in and stayed with us until we left that night. I love her! They had just put some pedialite on the IV when she came running in and them to take it off and told us that she had Juvenille Diabetes. Her sugar was 1500. We stayed there for the next few hours waiting on a helicopter to come and get her to take her somewhere that they could treat her. She left on a helicopter without me, which literally killed me. 2 hours later we arrived at the hospital where she was at. She had about 5 tubes going out of her. We stayed in intensive care for a day and a half, then were transferred to a room where we were educated for the next two days tirelessly on everything from giving shots to what we were giving her to how to feed her. It seems like yesterday when all of this happened. I am thankful for everyday that I have her because I know how close she was to slipping out of this life. Two weeks after this happened we literally CELEBRATED her one year birthday. It was a very emotional time, as you can imagine.

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Robin - posted on 06/02/2010

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My son Andrew is 13, and was diagnosed just 2 months ago. Andrew has Asbergers Syndrome, and in November began having behaviour problems at school. It just seemed to be getting worse and worse as the months progressed, and we ended up placing him in a day treatment program to help him. Now in hind sight, all the behaviour issues were being driven by blood sugar levels going way out of control. At the same time, he was taking an anti-anxiety medication that we were informed was being discontinued in liquid form. Since he can not swallow pills, we were advised to ween him off his medication (it has bad withdraw effects) and to start taking a different medication. We noticed right away that he was becoming lethargic (side effect of new medication) and had a dry mouth, that he solved by drinking all the time (another side effect of the new meds), He then started to wet the bed (the new med side effect said loss of bladder control) I call dr. and when I did, the psychiatrist said bladder control meant during the day, at night it just meant he was getting a deep sleep on the meds. Then started the withdrawl symptoms, shakiness, loss of appetite, looking pale, gaunt and sunken eyes,and heavy breathing. This continued for a few days, and a few calls to the Dr., assuring me this was withdrawl. He even saw the psychiatrist at the day treatment program that morning, who gave me a prescription to help with the withdrawl symptoms. I gave Andrew 2 doses of that, and he just kept getting worse, breathing like a steam engine, and then became delerious. I took him to the ER, and had to carry my 13 yr old in because he couldn't walk. I explained to them that he was withdrawing from anti-anxiety meds, but I was lucky that a wise old nurse helped me put him on the bed, and said right away that he smelled fruity. She tested his BG right away, and it wouldn't register on the monitor, it was too high. The ER Dr. came in then and told me that Andrew was a diabetic and in critical condition, and needed to be transported to Childrens Hospital as soon as they could get him stable enough for transport. That was the scariest moment in my life. Andrew spent 2 days in the ICU at Children's in DKA, and then was moved to the regular unit. It took a full 24hrs before Andrew could talk, but once he got going, he was great. His A1C was 12, so this was obviously happening for longer than the month we were dealing with the med changes, the new medication just jumped it into high gear. I still kind of feel like we are in shock, but he is slowly begining to handle all the changes that this disease has brought upon all our lives. It is amazing to listen to all his siblings talk about carbs and shots very casually, even his 3 yr old sister.

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Christopher was diagnosed 6/30/08 when he was 10 years old. The first clue was his weight loss. But it took me a little while to catch on because he'd had two bad flu's and was going through a growth spurt. Finally, he just wasn't looking well and I took him to our family doc. He saw him and said, how quickly can you get him up to Children's Hospital? Needless to say I made the two hour trip that night and being as late as it was I stayed with family and took him to the ER the next morning. I knew what was coming and dreaded it horribly. See, Chris is also on the high end of the autism spectrum with PDD-NOS and needles were always his worst nightmare. It took 4 of us to hold him down after he'd been tied down just to administer the blood test. I will NEVER FORGET how he screamed for help and cried thinking he was being tortured. I don't know how I kept it together.The worst blow of course was when they told him that whenever he ate again, he'd have to have an injection. It took a good 36 hours before he wouldn't cry, scream, and fight us with each injection & blood monitor. Interestingly, as I look back in retrospect, about two months earlier I now believe he went into DKA and I had no clue. We were at a hotel of all places and he began throwing up like nothing I'd ever seen and started drinking juice like crazy. When I think about it now, I can kick myself for not taking him to the ER but as we'd been out to eat that night, I just figured something didn't agree with his stomach. And going back even further...about 3-4 years before the diagnosis, I started noticing that he was developing skin patches, or loss of pigmentation, especially around his eyes. After taking him to his ped. a few times and nothing working, he referred me to a dermatologist who could give me no better answer as to what it was! His paternal grandfather also had this same discoloration so I just figured it was a family trait. Little did I know exactly what it was until his Endo told me - Vitiligo. So the Vitiligo actually preceeded the Diabetes.



But through all of this, despite all the "rain", there have been some really silver linings to come through. This experience has really helped Chris to grow as a person. Not only did he learn to conquor his worst fear of needles, he also conqured another fear - toilet training. While he was partially toilet trainied prior, he had a great fear of doing BM's in the toilet. Once he realized he could overcome a fear, then he was willing to try it again, and was successful! Now, at the one year follow-up, he took another huge step and told his doctor that he was ready for the Omnipod Insulin Pump. The idea of this too, he fought for a long time but just the other night he told me, "Mom, I LOVE my Omnipod!" It was music to my ears!

Tamra - posted on 02/25/2009

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Our son, Joel, is 5 1/2.  He has had bedwetting issues since he potty trained at age 2, and recently had begun soaking the bed.  We recognized the change right away, and he was drinking much more. I looked at the symptoms of diabetes, and didn't feel he was exhibiting the other symptoms listed.



One night, he had soaked the bed, and while I changed the bed, my husband started a bath for him.  When I came into the bathroom, Joel was crouched, naked, by the tub, crying.  I was shocked to see every bone in his back.  He's always been a bit roly-poly.  His clothes had become loose lately, but he had grown 2 inches.  I knew there was something seriously wrong.



I made an appt. at the pediatrician's clinic the next morning which was Saturday; if they hadn't been able to get him in, I was taking him to the ER.  I explained to the nurse practitioner what had been going on.  He had lost 7 lbs in the 2 months since his last visit.  She sent him to the lab; when the tech tested his BG, the meter only read "HI".  I heard her in the other room calling the nurse practitioner on the speaker phone.  The NP said she'd catch the doctor on call before he left.  Joel and I were sent back down to the exam room.



The doctor came in and told me Joel's BG was higher than their meter could read; he wanted us to go to WVU Hospital in Morgantown (1 1/2 hrs away), but the hospital did not want me to drive him by car.  Our local ER thought it would be ok for me to take him to the local ER by car.  That's when I panicked inside, but I did not want to scare Joel.  He told me the diagnosis was Type 1 Diabetes, and my heart just sank.



Joel was at the local ER for 8 hours while they tried to bring his BG level down slowly.  He was taken by ambulance to WVUH, where he spent a day in the PICU.  They said the first hospital had brought him down too quickly.  The next afternoon, he was transferred to a regular room.  By Monday he was doing great.  We were hoping he could come home the next day. 



But he woke up with a fever of 104.8 - he tested positive for Influenza A - he caught it in the hospital's playroom.  (Not the stomach virus "flu"; the Influenza that children die from.)  One time while we were there, Joel saw me cry.  He put his sweet little hand on my cheek and told me not to cry.  That everything was ok.  I on the other hand, spent the week preparing him that we would be continuing checking BG and getting shots when we got home.  So we were at the hospital until Friday afternoon when his fever finally subsided.  My husband at home was feeling it come on, and a couple days after we were home, my 2 year old daughter came down with it.



The first time I had to give him his insulin, he looked at me like I was not reasonable.  "I don't want any more shots, Mommy."  I just KNEW that would happen.  Thankfully, he's better about it, but he still gets worked up a bit.  He told me the other night he wishes he could eat like he used to (w/out counting carbs) and he's tired of having Diabetes.  He really is so sweet about it; it just breaks my heart. 

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Kim - posted on 02/12/2013

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My son was diagnosed in May, 2008. He had just turned 6. I started noticing he was losing weight and had dark circles under his eyes. My husband, my mom, and I were all sitting at the kitchen table talking. This particular day I noticed he was constantly going to the bathroom and "sneaking" water to drink after I told him to stop. I called his pediatrician the next morning and sure enough, it was confirmed. We were sent to the hospital and 4 days later sent home. The doctor said we had caught it within about 3 months. I felt horrible because I thought I should have put all of the signs together sooner. My son had a virus about 3 months prior to getting diagnosed. They said that it was most likely the cause.

Stacey - posted on 01/22/2013

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We moved to NH from SC in the winter of 2010. My daughter was 11 at the time and NOT happy about the move. Her attitude got worse and worse. By the time we hit the winter in 2011 I didn't know what to do. She layed in bed most of the time, didn't want to do anything. This was not like her at all, she had always been very active and outgoing. She got her period in Nov. of 2011 and I though,"AH HA!" That's why she has been SO moody! About a month after that she started wetting the bed, while she had her period. Now she was really flipping out on me. Bed wetting runs in our family and she had just stopped wetting the bed when she was 9 so I wasn't super concerned. She also ate a lot, I mean A LOT! She was always starving and always eating, if she wasn't laying in bed or on the couch. She started complaining that her stomach hurt, her legs hurt, her arms hurt, she had a constant head ache! Geez, I thought she was being a drama queen and blowing things out of proportion. I thought the leg and arm pain was from growing so fast, the stomach pain was cramps from her period, the moodiness was because she was a pre teen. Boy was I wrong. I finally made and appt to see our pediatrician.
The day we went to see him my daughter weighed herself while she was hanging out in the bathroom with me doing my hair and make up. I asked her how much she weighed now and her answer made my heart sink. "74 pounds" she responded. I KNEW that she was over 80lbs at her last physical! I finished getting ready and then went straight to google. By the time we saw the doctor a few hours later I knew she had type1. I asked the doc to check her sugar and he didn't want to. He was all like,"it's not a diagnostic tool, go up to the lab in the next town over in the next few days at your convenience and bring in this lab slip." I said I would if he would just finger stick her before we left. He did and it didn't register. This is the day I learned that most glucometers don't read anything over 500. We went to the lab, she came back at 890 but not DKA. She never spent any time in the hospital, they just gave us an 8hr session of info and a bunch of hand outs and sent us home. We will hit our one year mark with diabetes in March of 2013 and it already feels like this monster has been with us for a life time!

Jacquelyn - posted on 01/21/2013

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My son 11 just diagnosed had showed symptoms for months.... Looking back- he had been eating a ton! He would eat large meals and then say he was starving!!! I was getting frustrated because he would start stashing food in his room and book bag. I actually called his Dr concerned he had an eating disorder and because he was soaking his bed every night I thought there was some anxiety issues going on. On a wed I realized he looked thin to me but thought maybe he was going through a growth spurt. He walked in the foot from school and my heart dropped. He looked so incredibly skinny! All I saw was bones. I had him lift up his shirt and I gasped at how skinny he was!!! I immediately called his dr for an appt first thing in the morning. Every hour that went by - I was more and more sacred as he looked way too thin and sickly . Finally I took him to the ER where they immediately pricked his finger and found that his sugar was high and the lab reported levels if 900!!! I felt incredibly guilty that I hadn't seen the signs. The education we recieved was fantastic and I honestly think my son is relieved to know that he has a diagnosis and finally feels normal . He does not want to feel crappy again! I just hope he continues with his good aditude and willingness to follow the plan. I consider myself so lucky and I tell everyone that says they feel sorry for us- he is not sick.... His body just doesn't make insulin and we need to give it to him:)

Natalia - posted on 11/16/2012

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My son was diagnosed at his pediatrician's office at age 18. He was having the weight loss, the thirst, the lethargy and so on. But I wonder if he was not showing symptonms before: a bedwetter, diagnosed with ADHD, unpredictable fierce rages during the previous years. Any similar experiences?

Penny - posted on 02/09/2011

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In May and June of 2006 my 7yr old daughter had strep twice, in August I had her at the Dr. because I thought she had lost some weight. He thought she was just growing and very active but still tested for diabetes which came back neg. . At Thanksgiving we were visiting my sister's in Texas ans I was helping my daughter out of the bath when I almost fainted. She looked like a skeleton with the skin stretched over it.I weighed her and she was down to 53lbs when she had been 70 less then 2 months before. We drove home to Ar. and I made an appt with her ped. Dr. for the next Monday. On Thursday morning she started throwing up so I thought she had the flu and when she complained that her side hurt I was worried about appendicitis so decided to take her to the hospital. I had been researching her symptoms and had it down to Diabetes or Hyperthyroid problems. We got to the ER and I couldn't get her to set up in the chair, she just kept sliding down as if she had no bones. The guy was checking her vitals and he immediately took her back to a room calling for a nurse and a Dr. stat. I think that was when I really started to get scared! She couldn't answer any questions, she was slipping into a coma. I was told later that she wouldn't have made to the Dr. appt on Monday! My husband who worked at the hospital came to be with us and I remember him looking as scared as I felt. They put Zoe in ICU for 24hrs then on the peds floor for 2 more days. We had to go to Tulsa(2hrs away) for training 3 days in a row. It has been 4yrs now and sometimes I still fell like a newbi. At the time of diagnosis we were homeschooling which was very helpful. Later we tried school but they sent her home almost everyday due to high blood sugars so we decided to homeschool again. She is on the pump now and doing better. Zoe told me that she is glad that she has friends that help look after her, reminding her to ck. her sugar or to bolus. From the beginning I told her that the people around her had to know about her diabetes in case something ever happened.
I was reading in the previous posts about siblings becoming diabetic, there is a family with 8 kids and 5 are diabetic !

Karen - posted on 08/12/2010

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wow I have never heard of a bg being that high......
I also had a hard time with my doc. I kept calling and saying he is not feeling well. I told them that he has been drinking and peeing a lot. They told me he is probly just getting over the flu and to keep him hydrated. A week later i called and TOLD them i am bringing him. He didnt want to move at all he just laid their. When I took him to the doctor and he just laid on the table I questioned the doc "is this really normal for having the flu?' He said "I am sure he will be fine but will do some blood tests to be sure" they drew his blood and sent us home. We were home 10 min. When they called and said to get him to the ER cause his bg was 860.

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My daughter was 4 yrs old and wasn't eating much but she was fine, she had gone thru this b4. Anyway by Sat morning we saw her ribs. We decided 1st thing Mon morning we would take her to the clinic. Well by Sunday all her bones in her upper body was showing but she was still running around and playing normally. By evening she was throwing up and couldn't hold anything down. I put her in the tub to bath her and she stuck her head in the water trying to drink it but then she threw it up again. We though ok a few more hours and the clinic will be open. But by 1 am she was throwing up so badly we took her to the Klinkum (German hospital) They made us wait 3 hours before being seen cause they said there one and only Dr on that floor was busy with another kid. Then they said she was so dehydrated her blood was like sludge. Told us it would be 3 hours before we knew the results. She then went into a Coma. They rushed her labs and discovered she had juvenile diabetes. She was in ICU for two days and had all kinds of tubes in her. Her sugar levels were nearly 800. I couldn't stop crying as i felt awful that i didn't see something wrong sooner but as NO ONE in either side of our family has juvenile diabetes we didn't know the signs. She had to stay in the klinikum for 3 weeks before she could come home and everyday of those 3 weeks my husband and I were drilled on her care and foods and all that so we could bring her home. The Germans have a different way of treating diabetes than the Americans so when we returned to the States this past Dec 2009 we had to go thru classes all day long to learn the American way. Turns out the Germans were giving her too much Novarapid so now she has less shots.

Beth - posted on 05/31/2010

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We found out Serena was diabetic on Christmas Day 2006, she was 6 years old. She was sick the day before, couldn't keep anything down, was dehydrated but couldn't even keep water in her! We sat at home on Christmas Eve, then she turned VERY pale the next morning, so that her lips looked purple. When we took her to the ER, they had thought it might be a virus or the flu...and then tested her blood and said they believed it was diabetes. Her blood sugar was VERY high. She spent the night in the ICU with an insulin drip...and was her old self the next morning. Our holiday may not have been what we'd waited for all year, but our lil girl was getting back on her feet. Three days later, we went home with everything we needed to know and to get started with our new daily routines. Rini took control then, learning to do her own tests, pointing out where she wanted her shots to go. Now, she can do both on her own (with supervision), and she's never once let her diabetes keep her down. I admire my lil girl for being so strong. She's one of my heroes. ^_^

Melanie - posted on 05/28/2010

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My son was diagnosed 6 years ago, when he was 4 years old. We were lucky because he was in good condition when we arrived at the hospital. I had consulted our familly doctor that morning because I thought he had a bladder infection. She ordered a blood and urine sample. As soon as she got the results she asked us to go directly to the hospital that a doctor would be waiting for us. His was admitted on the spot, luckly his blood sugar was extremely high but he wasn't dehydrated. The doctors even let him leave the hospital from 10-6 to sleep at home because he wasn't on IV. I think that our experience was still difficult but the stress level was very minimum therfore alot less traumatic for everyone.

Tiffany - posted on 05/22/2010

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Well my husband is home with her during the evenings as I was working nights. He was in the military and his dad has type 2 diabetes so he knows signs to look for. My daughter was wetting the bed, was always thirsty and just couldn't stop going to the bathroom. We had her urine and blood tested and there were sugars in both so we were told to go to the ER. They checked her sugar it was close to 500. Their concern was that she wasn't acidonic and they said they wanted to keep her there to be sure she had type 1. Well she does, her A1c was 9, in March when she was diagnosed and it was down to 7 last month.

Arrynne - posted on 04/08/2010

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I am actually a step mom in this situation. SD was diagnosed November of 2007 when she was 13 mopnths old. We have joint 50% custody. We got her from her mother with a runny nose, puking with excessive thirst. BM said she brought her to the walk in clinic and they apparantly said to give her lots of orange juice and peanut butter. We brought SD to emergency every single day for 5 days knowing that it was not a common cold. Each time the doctor said it was just the flu and sent her home. As the days went by she starting throwing up more, we went through a box of diapers within 4 days because of the increased urination, this was mentioned to the doctor 3 of the 5 emergency visits. Throwing up did not subsude and she became very lethargic. Finally on Saturday the doctor took us seriously and ran a blood test, her blood sugar was 49.5 mmol and she was almost in a diabetic coma

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my son jacob peter is 2 yrs 6m and was diagnosed 6 days ago (end of march 2010) he'd become dramtically unwell over 3 weeks and i knew he was presenting classic diabetic symptoms of weeing and drinking non stop. (i even had to stop using washable/eco nappies and reluctantly change to pampers and even they weren't holding his wee unless i changed him every hour)

not sure how i knew as no-one in family has it and i don't know anyone else with it - but my childcare qualification 15yrs ago served me well - i must have learnt it there!!

a blood test done at gp's at 8.30am revealed very high blood sugar levels and we were sent to a&e. by 10am he was officially diagnosed with it and DKA and on a drip.

that evening we were transferred to hgh dependancy unit for 24 hours.

then down to a ward for 3 days.

its all very new to us so we pleased to find this forum.
rachel - manchester uk

Aimee - posted on 02/18/2010

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My Son was nearly 3 when we found out. He was drinking a lot and when i was at the Dr I asked him about how much he was drinking and he said i didnt need to worry, it was nothing. About a week later he was wetting through nappies in a matter of an hour and drinking so much. So i took him to another dr on the sunday and she said we would do blood tests on monday but it was probably nothing. So on the monday morning we went for the tests and within 2 hours she had rung us back and said he had diabetes and to go straight to the hospital. From there they transferred us through to Christchurch paediatrics by ambulance and we spent 4 days in hospital learning everything!

Jennifer - posted on 02/17/2010

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Hey Valerie, our situation wasn't near as scary as yours, but they're all heart breaking just the same.Our son, Clay was 12 yrs. old when we notice something was wrong with him. He was eating all the time and losing weight. We took him to his regular doctor and he did an exam and all the necessary blood work. We got a phone call the next day from the nurse telling us that Clay's BG/A1C levels were high and that Clay might be pre-diabetic and needed to go see an Endocrinologist. An appointment was made a month or so later, but by that time, Clay's diabetes was going through the honeymoon phase and the Endocrinologist said that he did not have diabetes. 6mos. later, Clay ended up in the hospital with full-blown Juvenile Diabetes . That was 5 yrs. ago. He's been using an insulin pump for 3 1/2 yrs. now and he does pretty good managing his diabetes, but there's always room for improvement. Having a child or children with diabetes will always be an emotional roller coaster ride. Educate yourself and your child all you can about diabetes, so that they will be able to take care of themselves and live a healthy and as close to normal life as possible.

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Ladies, I could cry just reading some of your accounts! Diabetes is certainly life-altering.

My daughter was diagnosed 9/19/2003, 4 weeks before her 5th birthday. Like many of you, I can see symptoms much sooner than that in retrospect but didn't recognize them at the time. I'm a teacher and had had a child with diabetes in my kindergarten class a few years before, but still knew very little about it.

Cristina had been dry at night and began wetting the bed every night. Even if we limited her fluid intake in the evening and got her up to go the bathroom before we went to bed, she still wet the bed for 2 weeks straight. Like many of you, I thought she had a urinary tract infection or something of the sort. I called her pediatrician and was surprised when they said to bring her right in, but still didn't think much of it. I just figured they had an opening right away. Cristina attended the same child care center where I worked, so I told the teacher I left in charge that we were going to the doctor to pee in a cup and we'd be right back. Ha! Little did I know Cristina's life, and therefore mine, would never be the same!

At the doctor's office they took a urine sample (I don't remember if they did a finger prick) and put us in a room where we waited . . . and waited . . . and waited. The longer we waited the more anxious I grew. I knew this long of a wait was not normal and meant something was wrong. Finally, a doctor who was not a member of our pediatric practice came into the room and explained that our doctor was away at a conference and he was standing in. Then he started asking questions. Had she been thirsty a lot? Peeing a lot? Lethargic? I recognized the list of symptoms and thought to myself, "but she doesn't have diabetes." Then he went on and gave me the diagnosis: they thought Cristina had diabetes. I can still hear the ringing in my ears, and the feeling that I was watching someone else's life!

He apologized for having kept us waiting so long. He had been trying to determine where to send us. We live in southern New Hampshire, so he sent us to Boston's Children's Hospital. He told us to go home and collect our stuff and drive her down -- about 45 minutes away. I asked if we could take some time to eat dinner since it was now around 5:00. He said that was OK, but not to take too long. I called my husband from the exam room when the doctor stepped out for a few minutes, to tell him that they thought she might have diabetes and they wanted us to go to Children's Hospital.

I returned to work to collect our belongings and to tell the teacher in charge that she would be closing. I still remember telling her they thought Cristina had diabetes. She gave me a big hug and it was all I could do to keep from bawling, but I didn't want to scare Cristina. Once at home I collected things for Cristina and me to spend the night. My mother came over to stay with our other 3 children, all older than Cristina, and we took off for the hospital. I honestly don't remember what the rest of the kids did about dinner. Cristina, my husband and I went through the Burger King drive through and ate on the way. Looking back I realize that probably wasn't a great idea, but I knew so little about diabetes! Also, there was no way I was going to eat in front of my little girl and not feed her, and I knew it was going to be a long night. Little did I know how long!

They were expecting us when we arrived at the emergency department at Children's. They did a finger prick in triage. I praise God that her blood sugar was actually only in the 300's if I remember correctly and no DKA. Once they had put us in an ER room they asked for a urine sample, too. And after what seemed like a long time they came in with a shot of insulin to bring down her blood sugar. We waited forever in this tiny little ER room for a bed to open up on the floor. At 2:00 AM we were finally taken to a room and put Cristina to bed. There was no way I was leaving my baby in the hospital. I expected my husband to stay, also, but he went home to get some sleep and came back early the next morning.

I slept in the bed with Cristina. The nurses came in every so often to check her blood sugar, temperature, etc. At one point when they came to do that, I realized Cristina had peed the bed and I was wet too. I had only brought one change of clothes, but the nurses were so nice. They brought me scrubs to wear for the rest of the night.

Cristina was in the hospital from Friday night to Monday evening, while they got her blood sugar under control and taught us how to manage the disease. The worst crash course I EVER hope to take! Every time they gave her a shot, Cristina cried. On Monday they made me give her the shot. I was so nervous! I sat on the bed with her to give her the shot, and when she cried after I pulled her into my lap and cried right along with her as I held her. It still brings tears to my eyes to think about it. After a few minutes, my sweet sensitive little girl turned and looked up at me confused and said, "Mami, why are YOU crying?" Her innocence made me smile. I told her I was crying because I didn't want to hurt her and didn't want her to be sad. That wouldn't be the only time I cried with her about her shots.

She is such a responsible girl. She learned very young to count carbs, and even when very young would always ask before eating anything. Even now she seldom forgets to ask how many carbs in the food she's been served, though she is quite capable of counting carbs pretty independently.

Cristina is now 11 1/2 and has been on the Medtronic Minimed pump for over 3/12 years. It is such a great tool to help control diabetes. She is very active and is one of those kids who's blood sugar is very difficult to control, but even so she has not been hospitalized since her initial diagnosis and we have never had to use her glucagon. That doesn't mean she hasn't given us scares. I will never forget the look on my husband's face when he asked me how low the glucose meter would go. He looked like he'd seen a ghost. Of course, I answered something along the line of, "I don't know. 40 maybe? Why?" Then he said, "Because it says 'LOW'." Since then we've seen LOW and HI more times than I can count, but I praise God for amazing care at the Boston Joslin Diabetes Center, Boston Children's Hospital and at her pediatrician's office. I read the horror stories of some of you where your pediatricians ignored the signs and I'm appalled. How can professionals be so incompetent?

Children's had us call in every evening that first week she was home and we would go over her numbers with the endocrinologist on call. Once Cristina was seen at Joslin, we called there every few days, and then weekly, until we felt more confident with what we were doing. We have talked to the doctor on call in the middle of the night, Sundays, and whenever needed due to illness or other emergency issues.

I just recently found out from our insurance company that they will cover the continuous glucose monitor as long as the doctor determines it is medically necessary. We've already been talking about this with her team, and I'm looking forward to sharing this information when we see her diabetes educator./nurse practitioner in a couple of weeks. I'm hoping it will shed light on her unexplained highs and lows and help gain better control of her blood glucose. Her A1C has rarely been under 8, which makes me concerned about long term damage to her body.

Jessica - posted on 01/10/2010

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Riley started to lose weight between August and October. She is 9 and has started puberty so I thought it was just her body changing. I am not big on weighing her but finally did and my scale said she lost 10 lbs. Ok she got picky with foods and she had gotten sick a few times. Between Oct and Nov we really started to think she was lactose intolerant. I decided I was going to bring her to the docs after the holidays. Fast forward to Dec 14 she was pretty sick and we were not sure what was going on. I asked my hubby to stay home and go with me to the urgent care. She was breathing really funny so we rushed her over there right away. They gave her a breathing treatment and did a strep test even tho she had not been running a fever. They said it was positive and gave us liquid antibiotics. She had lost 22 lbs according to them. I almost died when they told me that and made a appointment with her regular doc for the next week to find out why. She had hardly eaten anything that day or the next. I could hardly get her to wake up. When my hubby came home for lunch on Dec 15 I told him we are going to the ER. We got there and they took back right away poked her finger and said she is diabetic her blood sugar is 500 something I didnt hear past the 5. She was DKA and at the time I had no idea what that was. They said she needed to be life lighted to a different hospital about a hour north of here. I couldnt go with her. My hubby dropped me off at my sister in laws who drove me to her. She only made it into the room about 10 min before we got there. She stayed in the Picu until friday. They had a hard time getting all her levels stable. She was on the IV until late Thursday. They told me she was one of their longest on the drips. We got the crash course on how to care for her and here we are almost a month later looking for a endo.

Laurie - posted on 01/08/2010

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I agree that pediatricians need to be more proactive in diabetic testing. My son was diagnosed with diabetes in April of 2008. But he'd displayed symptoms since he was a toddler. He never had a dry night his entire life before being diagnosed. He often even wet himself during the day - even at the age of 9. I would always bring this to his doctor's attention during checkups and they always blew it off as something a lot of boys go through and will eventually grow out of....I even had the doctor tell me that it's not uncommon for teenage boys to continue to wet the bed. My son was always a drinker - you couldn't ever give him enough to drink. I knew enough about diabetes that excessive thirst was a sign, but the doctors would always blow that off as well. He has asthma and had been hospitalized several times with asthma, and one of the times that he was hospitalized for that he came back with sugar in his urine. Even then, the doctors discounted it because he was on steroids which can elevate the blood sugars. They had him come in a week after he was discharged for another urine check to make sure it was normal....which it was. They never bothered to do a finger prick. However, my son was never a big eater....in fact he rarely ate at all, and if he did, it was only small bites. He was always small for his age and rarely gained any weight. You would think all of these signs together would have clued his pediatrician in to do a simple finger prick. Nope.



It wasn't until he came in for a completely unrelated urine check that came back with very high sugar content that the doctor thought to do a finger prick. His blood sugar was in the high 400's. The doctor advised me to immediately take him to children's hospital, where he was admitted for one week to get his blood sugar under control and for our family to be educated in diabetes management. He was also at the same time diagnosed with hashimoto's thyroiditis, which is another auto-immune disorder that affects the thyroid.



I think it was only due to the fact that my son was a very light eater and extremely active that he never got incredibly sick from the diabetes....I'm very thankful that he didn't have to go through some of the horrors that I've heard about in diagnosis. A year and a half later and he's doing great. He still doesn't eat very well, but he has finally started growing - his last appointment he had grown 2 1/2 inches in 3 months - and his weight is improving as well. He gives all of his own shots, and we're in the research phase of going to a pump.

Rebecca - posted on 01/07/2010

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My 7 was about to turn 7 years old. He was always asking for drinks and of course needing to go pee. On this birthday he was vomiting alot, but over all seemed fine. I knew something was up because my grandmother had type 1 diabetes and I knew the signs. We took him to our family Dr right away and asked for blood tests to confirm. Of course it was positive and we've been dealing with it for the last 9 years. It was a slight adjustment when he was younger but I've got to tell you the teen years have been hell. Going through puberty and now at 16 him trying ti be independent is really stressing me out. He has been in and out of the with 1 low that I had to give glycogon(sp) for and 4 or so times with DKA. where is has had to spend nights in the ICU.

It seems the more stressed I get and the more busy and stressed my work life gets, it really seems to mess him up. I'd love to hear what other Mom's of 16 years old coup with the teen years!

Brandy - posted on 12/12/2009

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My son Layton was 2 when he was diagnosed on Nov 8, 2009...i had noticed for about 10 days that he was wanting to drink more, more wet diapers, losing weight fast, so I called the pediatrician a few times and they told me not to bring him in unless he started running a fever. On Sunday, Nov 8, we were at my other son's 5th birthday party and Layton was laying in the floor at the bowling alley and I knew something was bad wrong, so I grabbed him up and took him to our local hospital. They immediatly started test and did blood work and his blood sugar was 667...they sent us by ambulance to our Childrens hospital in Birmingham, AL where we were admitted to the Specail Care Unit and put on an insulin drip. Thank God we carried him when we did....by early the next morning his sugar had came down to 200 and his chemical panals were back to normal and we were off the drip and moved to a room and my husband and I began our diabetes education classes. This has been so emotional for my entire family, but we are getting used to everything and Layton is doing great...he doesnt mind getting his sugar checked or getting his shots, and he's put on about 7lbs in a month...they are still trying to get his insulin\carbs ratios regulated but were getting close. I just wish I would have been more educated on what to look for. I also think that every pediatricians office should check kids at every visit whether it be a sick or well visit. I feel like we could have caught this earlier had his doctor been a little more concerned.

Carolann - posted on 10/17/2009

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Catie was 8 and it was just this past summer. The last week of school she got another bad cold with a cough and I took her to the pediatrician and she weighed 70 pounds. The following week she had her dance recital and she was just tired and wasn't getting over the cold as fast as usual. Then she said her new glasses weren't working any more and she kept drinking and drinking. I weighed her one day, 67, the next 64, the next day she threw up with the babysitter and her mouth was so dry. I knew the symptoms and my dh said no way it was diabetes. That Friday afternoon after she threw up I called the doctor and said please test her sugar, it was 503, He said we caught it early before she got worse. She weighed 61 pounds that night, She had lost 9 pounds in two weeks. We spent the weekend in the hospital and the two days after that with the diabetes educator. She's currently in a honeymoon phase but tests her sugar herself and does her own shots. It's going ok at school.I'm so afraid of the swine flu hitting her and what happens when this hooneymoon ends. She doesn't qualify for any clinical trials, so when the honeymoon is pver we'll get a pump and try that. Good luck to everyone.

Tina - posted on 10/06/2009

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My son Quinten is a tall and thin guy. He really is just like his dad. Everything was really status quo other then his always being hungry. He has always had a high metabolism as well though. I went to my mother's to show off our new baby boy and when I came back two days later and Quinten's face looked different. We had picture scheduled and we noticed it in the pictures as well. The day we did the pictures was the first day I had seen him since getting back and otherwise he seemed normal. I thought maybe puberty was starting. The next morning he seemed tired and he talked about being thirsty and not seeming to get enough to drink. I had to take my 2 daughters to see their dad (my ex) and left Quinn at home with Dad and his brother. He asked to go with me but he just seemed tired so I told him to rest. He wanted to do something so he went to my brother's house (a few blocks away) on his bike. While he was there my husband called and said that Quinn told him he lost 15 pounds in the last 2-4 weeks. We talked about taking him in to see the doctor the next day. Not long after that conversation, my brother called me. He was scared for Quinn. He said that Quinn just sat in a chair and didn't move when he was over and even though he rode his bike, they had to give him a ride home since he was so tired. My brother said he was scared because the way Quinn looked reminded him of how our father looked when they found out he had cancer. I called my husband and said that it sounds like Quinn is getting worse thoughout the day and he should take him to the ER. After they got to the ER, they had many tests done but ultimately checked his bloodsugar. They didn't even tell my husband what it was. They hooked him up to electrolights and insulin for a while and then made him go by ambulance to the Children's Hospital. They actually told my husband they didn't feel comfortable caring for him with as sick as he was. Once at children's his blood sugar was over 700. This all started for us the day I came back from my mom's. This last Saturday, Oct 3rd. Talk about a whirlwind.

Christine - posted on 09/25/2009

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As I sit here reading all your stories I remember the day my son was diagnosed02/02/02

seems like yesterday and yes i still cry for my baby...(he is 15 now)yes it does get easier with the help of good endo, diabetic educators, nutritionists, , if you dont have a good support team you need to change doctors till you get one.........my son was in constant DKA until I got a good doctor for him....and now that he feels better he is more than willing to count carbs, check BG and take care of himself cause he doesn;t want tp feel like crap anymore..........my poor boy was 7 when we learned of his diabetes wetting the bed all the time and losing 25 lbs in a few weeks I thought I was losing him....after a week in the hospital and tons of training we started our journey, never a dull moment, lots of laughs, tears my sone has a great sense of humor. We have been on the pump for almost 2 years and it has made a big difference in our lifes

Melinda - posted on 04/17/2009

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Our day was on Super bowl Sunday, February 2007. Our daughter was 3 then, she is now 6 and getting on the pump next week. Well anyway, she was not talking at that time due to a speech and developmental delay she has, so she could not tell me that she was not feeling well. Well anyway, she was really wanting to drink water for about three weeks, so obviously to me what went in had to come out. She she went to the bathroom alot. She was potty training at the time and eventually potty trained her self because she was so tired of changing her pull up. Well, my mother in law who has type 2, told me that thirst and urination was two signs of diabetes. I blew it off ( now i wish i didn't). Well Friday before her diagnosis, she was not hungry at all, she wanted nothing to do with food, so I called her doctor and made an appointment for Monday. Well on Saturday she slept the whole day, we went out to dinner, and she did not want to eat or drink anything. So we went home and she went right to bed. Well Sunday morning comes and she meets me and my husband in out bedroom and vomits. She had this scared look on her face as did I since she was not eating anything since Thursday. So I hurried up and got my younger daughter who was 1 at the time and Mackenzie in the car. My husband and I took my younger one to my sisters house, who lived up the street from the hospital, we got to the emergency room, and told the check in nurse what the symptoms were and the nurse jumped up told the other people she would be back, she took my daughter and literally ran to the room. The yelled at the doctor and more nursed whom all came into our room and started poking and proding my daughter. They ended up moving her to a trauma room, and got her sugar number. It was over 600 and her kietones were at 12.4 (which is suppose to be at 0.0 to be healthy) we got the news and all I could do was cry. I had a coworker who in December of 08 lose his brother in law to complications of Type 1 diabetes. And all I could think about was that. I know I shouldn't have but your mind plays games on you in situations like this. Well, needless to say within 2 hours an ambulance was there to take her to a childrens hospital. The hospital is luckily only 45 min away. So we followed. we were in the picu for 3 days, and a regular "Education Room" for another 3 days. Now she is 6 and getting a pump and she is really excited, as am I to finally get her numbers under control. Since that day, she has also been diagnosed with epilepsy. WHich I am not sure is because of the diabetes but is kind of coincidental that it happened after the diabetes diagnosis.

Veronica - posted on 04/17/2009

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My son Matthew was just 9 months old when he was diagnosed. He is now 3 1/2 yr old and it still makes me tear up just thinking about that days that lead up to diagnoses. He was diagnosed on July 3rd, 2006. Looking back at the symptoms I believe it could have been few months prior that the problems started. He never had an appetite for baby food or cereal from about 4 1/2 months on. He would not swollow it and always wanted just his bottle. I pumped breastmilk for him and I was ALWAYS changed him in the middle of the night so that never seemed abnormal for us. 2 days before he was diagnosed (we were in the process of moving my husband is military) he spiked a fever and was refusing to eat anything, he was sleeping for hrs on end, I took him to the children's hospital and they said that he was fine just had an ear infection. I have 3 other kids and I knew better but went home anyway. My husband and I were going out of town and left the other kids with my parents but took Matthew with us as we knew it wouldn't be right to leave him. He began vomiting severely and became semi unconcious. We rushed him to the hospital and there they came and told me that his blood sugar was 747. They had us take an ambulance to a children's hospital 2 hr away (the helicopter wasn't available). I was able to go with him and my husband met us there. After 2 days in the picu and 1 day in a regular room we sent home. He is now on a pump and doing very well! I just pray that some day they will find a cure for this HORRIBLE disease. Matthew is so strong but has started to question why he has to have a pump and why no one else in our family has to. It seems to help to introduce him to other children (or adults) with type 1. God bless all of you!

Angelia - posted on 04/17/2009

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Rana is she on a long lasting insulin at night? After my son was first diagnosed he was only taking Lantus in the morning and like your child he was going too high in the middle of the night. Our ped put him on a dose at night as well and fixed that prob. I was really scared in the beginning because I would rather his BS be a lil high at night than possibly bottom out during the night. I soon got over my fears as I seen that he was happier and well rested after we got him in a normal range during the night(no bathroom runs). Good luck and God Bless

Jodi - posted on 03/21/2009

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My son Anthony was 17 and a half when he was diagnosed with IDDM. He had never carried around much extra weight, but when he lost about 20 pounds in a matter of 6 weeks or so, I didn't think much of it. He was a teenager, he was working out and lifting weights. Teenage boys can drop weight any time, right? Of course, being a teenager with a car and a job, I really didn't see much of him to actually see his drinking habits. What really clued me in was he would go to bed at night and within an hour he'd be right back out to go to the bathroom. I thought, "why doesn't he just go right before he goes to bed?" Next thing you know, he's wetting the bed. Now that is weird! I'm a nurse, so all of a sudden the pieces started to come together for me. I asked him if he was thirsty all the time. He told me he had to have a bottle of water with him all the time. I asked him how often he went to the bathroom. He told me all the time. Ding, ding, the lightbulb went on. I took him to the doctor the next day. They drew some blood and we went on with our day. Anthony was at work when the nurse called me and told me his blood sugar was over 500. For some reason, the doctor wanted us to come back the next day. (In retrospect, I know I should have insisted he be seen and hospitalized that night.) The next day we went in (after breakfast) and he had an ultrasound of his pancreas and more blood work. This time his blood sugar was over 900. He said he didn't feel sick, maybe a little tired. We live in a small town, so the doctor had me take him to a large university hospital for treatment. This was three years ago next month. Unfortunately, he hasn't yet quite come to grips with having diabetes. His hgl A1C is still 12.9. This is scarier for me than his diagnosis was.

Joyce - posted on 03/21/2009

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my son collin was 12 when I realized he was diabetic. We went to the Thanksgiving day parade and three times my husband had to fight his way through the crowd to take him to the bathroom ( he wasnt even drinking anything). Over the weekend I noticed he was always thirsty and urinating an awful lot. We have a very busy houshold, but that weekend we were home. I also relaized he seemed extra thin. He is a very tall and thin child anyway. I had him weigh himself and saw he had lost 7lbs since his check up in Sept. I knew right away even though we have no diabetes in either family I took him to the Dr that monday and was right. Luckily his bs was not extremely high. The dr just told me to call the childrens hospital the next day to set up an out patient appt.(not to smart on his part) When I called the next day. They told me to get him right in. He was there for three days and we were educated about insulin. It has been a 11/2 years. He handles it all pretty well. Does all his own injections.I am trying to get him to go to a pen. He is reluctant. Does not even want to hear about a pump. Life goes on

Toni - posted on 03/20/2009

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our story is no where near as scary.  We were very lucky that Taylor was 6 1/2 before he was diagnosed although I didn't think that at the time.  We noticed that Taylor was waking every night needing to go to the toilet and then would walk to the sink and drink heaps of water.  When I tried to stop him from drinking he would just ignore me and drink heaps.  I though maybe he had a urine infection and took him to the doctor.  When they told me he had diabetes and that I needed to take him to the hospital, I didn't understand what diabetes was.  I just thought it was something they could fix.  The next few days were very scary but we are managing fine now.  There was another little boy that was in the hospital at the same time, he was brought into the hospital unconscious and I have always been thankful we found out the easy way without any scary symptoms.  I did feel really upset with myself that I hadn't noticed he was losing so much weight!  Things are now going really well, Taylor participates in heaps of different sports (martial arts, basketball (representative level, touch (representative level), rugby, swimming, athletics (representative level).  He is also in the top groups at school for maths and english - diabetes does not hold him back at all!  It just means we have to be organised and careful with food and insulin.  

Nicole - posted on 01/30/2009

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So the Medtronic rep just left a bit ago, and once again I'm getting teary-eyed. He spent quite a bit of time explaining to us exactly where pumps are going in the future, and the latest technology that will be coming out in the next couple of years. It is exciting and encouraging to hear these things. I just bought Mikayla a sweatshirt online a couple days ago that says, "One day I would love to say that I USED to have diabetes." Of course, that is our final prayer, but until then we are excited that so many people are working tirelessly every day to make diabetics lives easier and more manageable.



I'm a little confused on "Sugar alcohols" right now.....any answers?

Lara - posted on 01/30/2009

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Our daughter was diagnosed on April 1, 2007, at four and a half. She had a bad case of strep throat and we got that cleared up. The next week she started wetting the bed, almost every night. I tell people that it was like Noah's Ark and the Great Flood. At the time, I just thought "she's a little girl, she's having accidents". That weekend my husband and boys went out of town and she and I stayed home. We went out to eat that Saturday night with some friends and before we even got our food, she had drank a large sprite!On Sunday night, I got on WebMD, and put in her symptoms: frequent thirst, and frequent urination. Results: Type 1 diabetes. I called my husband (who was on his way home) and told him what I had found. While I was pretty sure that was what we were dealing with, he was not convinced. The next morning when our doctor's office opened, I called and left a message with the nurse. By 11:00 (and 13 glasses of drink for Josie later) I called and scheduled an appointment. When we got to the pediatrician, they took a urine specimen, and then pricked her finger. The nurse went out, then came back in and got more blood. Then, the doctor came in and told me that they were trying to check her blood sugar, but their monitor did not read that high. I remember asking: What does that mean? The doctor said that meant that she had diabetes. She told us to go home, pack a suitcase, and wait for her to call us. I then had to call my husband to tell him to come home. That was the hardest call I have ever made. When we got to Children's and Women's, they were waiting for us in the ER. Her sugar was 780. We spent 4 days in the hospital, and it was insane. I was never able to cry while we were there, and I am not sure why. I do cry often now. Josie started on a pump in November, and while it has been a Godsend, it does make her feel different. I often cry when I see her running around after her bath, and seeing that tubing and knowing that machine is her life line hurts me deeply. The biggest thing that I try to remember, and encourage others to remember is this: Diabetes does NOT have to be a death sentence. While there is no cure at this time, we CAN controle diabetes, it does not control us!!

Valerie - posted on 01/30/2009

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That is so true. I went looking for sugar free cookies one time, and they had the exact kind of regular. It turned out that there were more carbs in the sugar free than in the regular. I think those cookies are more for people with Type 2 because if you look at it, the actual sugar content is zero or at least really low. They don't do too much with actual carbs. I guess you can take the sugar out of something and replace it with an artificial sweetener, but you can't do without the flour and other ingredients that have actual carbs in them.

Rana - posted on 01/29/2009

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I so hate to say this..be very careful of the pre-bought sugar free items..so many of them are higher in carbs then the real thing, more carbs, more fats..Natalie was spending the night at my moms and my called saying she didn't understand why if she was letting Natalie eat all these sugar free cookies her blood sugars were through the roof..that is when I had her read the carb count on them. It is better to have some of the real and give insulin then the sugar free!



but its a great thing that everyone is on board! I think it makes all the diffrence in the world!

Jane - posted on 01/29/2009

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I was real lucky that Josh had no symptoms of diabetes before he was diagnosised at 12. He was in the diabetes prevention trial since I have diabetes also. We had to monitor his blood sugar every month for a day, when I noticed his fasting creeping up. He was do for the next test in the trial so he was diagnosised with an oral glucose tolerance test on Friday 12/13, and we went back in on Monday for education and starting the insulin. He is now an 18 year old college student.

Nicole - posted on 01/29/2009

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I am so thankful that my family is so supportive of Mikayla w/ her diabetes. My mom used to be the same way....every time the grandkids would come over, she would always have donuts and sweet treats waiting for them. She no longer does that, and the last time Mikayla went over there, her and my mom made sugar cookies made w/ Splenda together....Mikayla took some with us to our family Christmas party, and she was so excited for everyone to try her own special cookies. Luckily, Mikayla has never been a huge "sweets" girl, and doesn't seem to miss candy and such too awful much. Also, when my sister has her over to spend the night she always has this sugar free cake that she buys at Kroger waiting there for Mikayla. That's like her special "Aunt Carole" treat. When she was diagnosed I actually had a talk w/ some family members and discussed w/ them that this was a huge life change for her, and that she needs them now more than ever to stand behind her and help her in the fight. They have been great....and we are so thankful for that.

Rana - posted on 01/29/2009

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eventually it goes away, then comes back again. :) I cry everytime we go to my aunt and uncles for a family gathering, they have a special drawer in their kitchen for their grandkids and my kids the "CANDY DRAWER" and it is always stocked full of full size candy bars and bags of candy, just knowing all of the other kids are allowed to eat out of it without asking and she looks at it..it just kills me! I know if I give her more insulin and count the carbs she can have some..but not to the extent the rest of them eat. I always bring cut up starwberries and coolwhip and healty snacks, but I just see it in her face. The first year I think it the hardest to get through, I think it helped Natalie that my 1/2 brother has type 1 and has had it since he was 11 so she has always seen him giving himself shots and checking and counting carbs.



what part of Michigan..upper or the part above Indiana? We pick the best strawberries every year in Niles. My husbands family used to have a family summer cottage off of a lake there. Now we go and stay in a hotel and do the flea market and berries, ughh then drive home with 100 pounds of berries for jam and freezing.



wtg for your Mom, I had gestinal diabetes with my son ( he is 2) and had to take insulin, after I had him I gained some weight ( I only gained 7 pounds with him). After a year and when Nat was diagnosed and I knew that I was at risk for type 2 I lost 40 pounds in 3 months, kept it off for a year now I need to work on more.



If you ever need to talk I am around!!!

Valerie - posted on 01/29/2009

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We are from Mississippi. It's been almost a year since Emily got diagnosed, and I still find myself crying about it, especially when I am giving her shots and she is upset about it. I wish that I could go back to the days where a meal was just a meal and bedtime was just bedtime...no necessary snacks and no shots whenever a meal comes around. No blood tests, or extra doctor visits. Just normal life, like my other kids. But, this has become her normal. She won't ever remember what our normal was like before diabetes entered our house. She was too young.

Nicole - posted on 01/29/2009

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My Mikayla was 9 when she was diagnosed last Augus12, 2008. We will never forget the date of her diagnosis, becuase it is my mother's (Mikayla's grandma) birthday. My mother has type 2 diabetes, but takes no pills or shots, she just checks her sugar everyday. She is very overweight, and her doctor says that if she lost weight, her diabetes would go away. We have no other diabetics in mine or my husband's families. Mikayla always says that grandma is lucky cause she can just lose weight and be cured......which is maybe the reason why my mom has lost nearly 50 pounds in the last few months. Just typing this, I start to cry. I still have a hard time talking to people about it without tearing up......I got online the other day to order Mikayla an "I have diabetes" bracelet, and started sobbing......will this eventually go away? BTW, we are from Michigan.

Valerie - posted on 01/29/2009

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yes, i remember the sobbing, and the times when i couldn't even cry. i remember staring at my cell phone the entire way to the children's hospital just waiting for it to ring and the doctors on the helicopter to tell me something had gone wrong. my life was blank and empty for that hour while my little baby was up in the air without me. still haunts me to this day that she could have left the hospital in mississippi and something could have happened to her on the way to alabama and i wouldn't have ever seen her alive again.

Rana - posted on 01/29/2009

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I am with you on the sobbing part. waiting in her peds office while he was on the phone with the local er and the other Childrens hospital she would be transferred to, that is all I could do in his office then athe 90 min drive to the childrens hospital.



How old was she when this happened??

Nicole - posted on 01/28/2009

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I still get goose bumps when I think of the day my daughter was diagnosed. I am so thankful that this time, "daddy knew best."  Mikayla was getting ready to leave on a 3 day vacation with her grandparents, aunt, and cousin. I work full time, and my husband is in nursing school, so right now our vacations are few and far between. My parents had offered to take Mikayla and her sister out of town for a few days for some fun. The night before she was supposed to leave, I was at work, and my husband noticed that Mikayla was going to the bathroom way more than usual. The next morning, with bags packed, my husband mentioned to me that Mikayla was peeing an awful lot, and that she probably needed to go the pediatrician before she left. I kept arguing with him that she was fine, and that we could take her in when she got home from vacation. Being in nursing school, he knew that there were only a few things that would make her urinate that much, and none of them were good. I finally told him to take her to the doctor while I went to work, and to call me at work when the appointment was over. Shortly after I got to work, I got a text from him saying "get to the emergency room ASAP." Within 30 minutes I was sitting with Mikayla and my husband in the ER, having no clue what was going on. I asked my husband what was wrong, and he just said, "She might have diabetes." Since her sugar was 830, they got us right up onto the PICU. I couldn't believe what was happening since she was otherwise perfectly fine. She appeared to be perfectly healthy, but just peeing a lot. When we got to the PICU, a nurse came in and said that since it was so late in the evening, they would wait until the next day to start training us on managing Mikayla's diabetes.....and then she was gone. I crawled into the bed with Mikayla and we just sobbed together. She sobbed because she was scared and didn't know what was going to happen to her. I sobbed because I knew the severity of diabetes, and I couldn't handle the reality of it. I also sobbed because I realized that my husband may have saved his daughter's life that day. If she would have gone out of town with my parents, anything could have happened, and they wouldn't have known what to do. She could have slipped into a coma while she was sleeping, or even worse. Mikayla is 10 years old, and doing great......and yes, her daddy is her hero.

Valerie - posted on 01/28/2009

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Emily has thyroid disease too. I think hers is an underactive thyroid, but I may be wrong. I guess that is terrible. I know it is hypothyroidism. I just give her the medicine for it and watch the numbers come down.

Rana - posted on 01/28/2009

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She was released from the hospital on a Thursday and we left for vacation to Disney and Universal Studios on Fri morning, by the end of the week even though most of her spunk returned and she was having fun most of her clothes were tight, within 2 weeks she was back to being tired by week 3 none of her clothes fit and her face didn't even resemble herself anymore it was so chunky. 4 weeks we went back for her first checkup and I mentioned it to her Edno and he noticed a few other things, her hair had become dry and corser, her skin was flaky. First thing he did was check her neck and felt a goiter, she had gained 11 pounds in a month. It was Hoshimoto's, underactive thyroid. The diabetes was winning the war in weight, losing it before she was diagnosed, now with her getting insulin the affects from Hoshimotos was visiable. It is so much more easuly treatable, one pill a day and thats it. The only issue is that the synthroid for that and insulin do not work so well together, their is a warning on both meds about interactions in taking them. She is supposed to not eat an hour within taking it for optimun absorbation, but if she is low when waking there is no choice there but to eat first!



Neither myself or my husband have any autoimmune problems, nor do the other kids. However in his family..autoimmune problems run amuck. From Graves to hoshimitos to pcos and chrons and MS.



She was been checked for a few other ones such as coeliac and everything thus far has been negative!



Her new Endo was saying rarely in females do they just show up in ones! So anyone with little girls just keep a watch for others too

Valerie - posted on 01/27/2009

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It's true, but our doctor has pretty much put me in charge of all changes that are made. I only fax in blood sugars to him once a month, and I don't even have to do that. From having to do this, one thing I have realized is that you just have to accept that everything is not always going to be perfect. Sometimes things will happen that you cannot explain. When it does, you just back up and punt. I have had to really work with myself and not get upset about every low or high that she has because if I did that...well I really don't know what I would do. Emily's blood sugars stay pretty steady right now thanks to her doctor and me working well together, and of course the help of the good Lord. Just take it one day at a time.

Jessica - posted on 01/27/2009

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My son is the same way. He could be perfect @ bedtime, and then in the morning it's high. It gets so frustrating because you do everything they tell you, and sometimes it just feels like nothing works.

Kimberly - posted on 01/27/2009

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Rana,



Hi!  Thanks for sharing your story.  How did you know that Natalie had more than one disorder?  Was she still tired after diagnosis?  What were her continued symptoms?

Rana - posted on 01/27/2009

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she cycles, the closer to the weekend we get the worse her numbers get, then all weekend we giving corrective doses and checking ketones and we get it great by bedtime, then by morning she spikes again, by Monday morning its all good and by Wed or Thursday it starts again. So this weekend she is wearing the cgm system until Tuesday and all the blood work, her endo really thinks it is being caused be early onset puberty. Her 11 year old sister was wearing a bra by 9 and started her period before her 11th birthday. God I really don't know if I can handle 2 preteens and the hormones!



we do make changes when things jump out of the norm I call her Dr and she changes her lantus or her novolog nubmers around, sometimes we go back down when she has a good few days, then back up again by the end of the week. All I have to say is thank God I have a dr who is there 24/7 and a staff that is too!

Valerie - posted on 01/27/2009

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hmmm...i have just learned that stuff like that happens sometimes...how often has she been high in the morning? sometimes there can be a fluke perfect blood sugar right in the middle of all the highs or lows. do you make the changes in insulin intakes?

Rana - posted on 01/27/2009

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I would..but yesterday morning she was perfect at 91... this is why are doing more tests, between maybe early onset of puberty or could be her adrenal gland is crapping out too..one more day until blood work!!!

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