Diagnosis Stories

[Heather-Nate's Mom]

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

[5kids4me]

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

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

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

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

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

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

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

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

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

Robbie

[angle]

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

[Kaylee's Mom]

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

I guess it is all history from there.

Crystal

[Jessica L]

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

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

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

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

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

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

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

[obtainedmist]

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

[Joretta]

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

[Mellie]

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

Here is Ali's story from my perspective:

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

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

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

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

[zoomom456]

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

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

[Lisa P.]

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

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

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

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