So, a couple days ago I was checking my own blood glucose (I'm a type 2). My kids, Alex (14) and Jacob (12) just randomly decided they would like to know their own numbers. So, first up was Alex: 101. Perfect! Jacob was next. He was 374. I asked him to go grab my Dad's meter. He was over 300 (can't remember the exact reading). I grabbed my Mom's meter. Same. High. Okay, here's the scoop. Jacob is a SURVIVOR. He developed a rare disease called Stevens-Johnson Syndrome in 2013. SJS is basically an immune reaction to something (most commonly a drug, but can be other things), and you burn from the inside out. You lose all your skin, hair, nails, and all your mucous membranes slough off, harden, and bleed. You can end up blind due to the extensive eye damage, but thankfully his eyes are only moderately affected. He spent a long while in the Children's hospital and nearly died. He developed SJS from pneumonia caused by Mycoplasma. Which is what I had just 3 weeks prior. Jacob was in such misery, and even though I have been a nurse for nearly 20 years, I felt utterly helpless sitting at my child's bedside. He was diagnosed with pneumonia on his 11th birthday in 2013. Three visits to Urgent Care later, I knew something else was very, very, very wrong. He couldn't take fluids. I sat with him in the ER and watched the spots form all over his body, his eyes turn red and full of yellow mucus, and his lips slough off in just an hour. They told me that they suspected SJS, and while I knew vaguely what it was from nursing school, I had never had a patient with it. We are literally always told, "You have to know what it is, but you will probably never see it in your career". How ironic that my "patient" would be my own son. I am a single mom, and being away from my daughter for all that time really strained our family. So, here is is about 18 months or so later. Jaocb never recovered fully from SJS. He is not the same boy. He is so tired. No endurance. He is weak. Gone is the energetic boy who could run around outside and never tired. Now he is just as tired as me (who has a laundry list of my own problems that stemmed from cancer and several serious autoimmune conditions). Since SJS is so uncommon, or "rare", no doc really knows what to expect afterwards. We know other survivors, and have their anecdotal information, but really, every time he's at a doctor, they just say "well he will eventually get better", or "maybe he needs vitamins", or something else. After I got this high blood sugar, I had him into the doctor's the next day. His urine had over 500 glucose, but only trace ketones. They say we caught it early. He really has no sudden symptoms that I can point to and say "Ah ha!". He urinates only a few times per day. He isn't thirsty (in fact I have to pester him to drink). But, he IS hungry. However, that isn't all that unusual for a boy just hitting puberty. He didn't have a high sugar at his physical a few months ago, so we are lucky to have caught this super early. We were sent down to the hospital right away and admitted. We spent two days in the hospital. Not too bad, because my whole immediate family is diabetic and being a nurse, I knew everything already. I grew up giving my dad (our only Type 1) injections starting at 7 years old! That is why i became a nurse, actually. I wanted to be a doctor, but I could never afford our university so I went to a local community college first. The endocrinologists are all very nice, and they depending on his antibody panels (which apparently take about 10 days to receive back), they are considering testing him for other more uncommon types of diabetes. One step at a time, I said. My son is taking this all better than I could have hoped. After his SJS hospitalization, he became incredibly anxious about doctors and hospitals. When I saw that first blood sugar at 374, my heart sank. He knows enough to realize that was high, and that something was not right. He can rattle off the causes of diabetes, the symptoms of hyper/hypo-glycemia, etc. He loves science and like I said, has grown up around a family full of diabetics. He was so scared to go to the hospital. He kept asking "Mom, if I just promise to never drink pop or eat sugar again, can my sugars go back to normal? Can I stop taking insulin and just eat right?". In the hospital they were poking him every couple hours, and that was rough. Especially at first when they insisted on using their lancets. I finally said no way, you are going to use my lancets because he is much more comfortable using them. I showed them that I placed a new drum and the doctor said it was okay. Those hospital lancets are SO rough on his already very sensitive skin (his nerves are so sensitive from losing his skin). Right now we are just checking sugars before meals, at bedtime and 2 am. Getting Humalog for meals, depending on blood sugar and carb count f his meal. Lantus at night (down to 4 units from 7). Such tiny doses now. We started out giving him half units of Humalog! I think the highest he's needed is 3.5 units. He's done well so far. This is all so overwhelming, even for me. I can't even imagine what it would be like for a parent with a younger child who may not understand what's going on, and who may not have ever heard of diabetes. I am overwhelmed, and I know a lot. I think back to all the times I would give diabetic teaching to a new patient, and I wonder "Did I overwhelm them they way the nurses did to us?". I hope not, but I do not consider myself an expert, by any means. The way they calculate the insulin doses is really complicated to me. I think it could be made SO much easier but oh well. I am thankful that there is no diet restrictions for him. Obviously they don't want you to gorge out on Cokes and cake for lunch, but gone are the days of teaching (like I learned!) no sugar, no nothing remotely sweet. He is not a big sweet eater anyway (although he likes soda). Wow I wrote a novel. This is the first time I have actually wrote down what happened (besides my little notebook I kept in the hospital). I just had to reach out and get all this off my chest. The night I checked his sugar I came here and started reading. I knew what was happening and I was scared to death. So far the scariest situation was when the nurses on his first full day in the hospital came and made him take his Humalog before he ate. Um, let me say this nicely....my son is a bit of a picky eater. LOL He eats great, but he likes MY food. He hates hospital food (who really LIKES hospital food?!). The docs were wanting to wait until we actually KNEW what and how much he was going to eat before calculating his dose based on the carbs. The kitchen makes you put all this stuff on the tray that I know he wouldn't eat. Well, of course he ended up not eating the whole meal. I was out of the room and they came in and dosed him with insulin. I was very upset. That was the only nurse I didn't like. She was very gruff. So, the dietician comes in and is talking to us (I worked with her, I was so happy to see her again!). She herself is a diabetic since age 5. Well Jacob started to look sweaty. I knew right away what was going on. The dietician got him some soda to drink and got him a sandwich he would actually eat. That is my BIGGEST complaint about hospitals: everyone does their own thing, their way. The doctors had written it down to make sure he ate before they go doing the insulin. Even though ideally, it would be given right before, they do NOT want to be chasing a low blood sugar. They know how crappy it makes you feel, and it just makes things so much worse. I can attest to that, I had my own episode that evening. Yuck. It is hard being the only one at the hospital. I really got upset that the nurse went in and did that. The doctors weren't happy with her either. Other than that, we did okay and are still trying to find a happy routine at home. I know it will take time and I am glad he is coming around to accepting things. He hates the way the insulin makes him feel (it hurst his stomach right after he takes it for a while). His sister is helping out so much and I am glad we didn't have to be separated so much from her either. IN fact, she stayed with us that first night in the hospital. She wants to be a doctor so she wanted to stick around and protect her brother and keep his spirits up. Well I think I've written a long enough novel for now. Sorry to babble on for so long. I just had to come and write all this down somewhere where other people understand. No one I know really can relate to all this. Thank you to anyone who actually reads all the way through this! Looking forward to getting to know you all better and learning everything I can.