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I was right....

Discussion in 'Introductions' started by rehabnurse, Mar 15, 2015.

  1. rehabnurse

    rehabnurse New Member

    Joined:
    Mar 15, 2015
    Messages:
    4
    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. :)
     
  2. njswede

    njswede Approved members

    Joined:
    Feb 9, 2015
    Messages:
    385
    Welcome to the "club"!

    It sounds like Jacob already had more than his fair share of crap in his life and I'm so sorry to hear about the T1D on top of all of that. :( Our otherwise healthy boy was diagnosed about two months ago, and although things have been going remarkably well, it's a grind and a pain in the neck for sure. I can't imagine what it must be like when he gets it on top of another potentially life threatening condition.

    I've found this place to be very supportive and helpful. People pick you up when you're down, cheer with you when you do well and nudge you in the right direction ever so slightly when you're going down the wrong path. Lots of empathy to be found here!
     
  3. mamattorney

    mamattorney Approved members

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    Apr 9, 2013
    Messages:
    1,076
    Welcome. I'm so sorry to hear about your son's diagnosis. What a trooper. I know you have a lot of experience with diabetes, but this site is a great place to ask for help and for personal experiences with things like school and other kid specific stuff that your dad may not be familiar with.
     
  4. BarbDwyer

    BarbDwyer Approved members

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    Jul 8, 2014
    Messages:
    181
    Welcome. I'm so sorry to hear about his diagnosis and the SJS and continued recovery. That sounds so serious and painful - so sorry he had to go through that.

    We are fairly new here too - diagnosed in June of '14 so not quite a year. We still dose after meals - makes it much less stressful for my son and and as long as his A1C stays OK we are sticking with it. He'll change when he has to I suppose.

    It is a big job being a single parent. I feel so lost sometimes with no one to process with and the supportive forums have really been helpful.
     
  5. rehabnurse

    rehabnurse New Member

    Joined:
    Mar 15, 2015
    Messages:
    4
    Thanks to everybody who welcomed me. Although I have a lot of experience with diabetics, I by no means consider myself an expert! I know there are all sorts of things I don't know. Truly, although my suspicious were confirmed at the hospital, my mind was overwhelmed. Still is. We are only on day 4 here at home, and Jacob is miserable (he's constipated...and he'd probably NOT be happy that I shared that!). His readings are still good.

    His biggest complaint so far is the burning of the Lantus. He *hates* that Lantus shot at night. Between that and the constipation, he is just not his normal happy self. I have to fax over his readings for the last week to the office tomorrow. We were "supposed" to get into the office within a week but they are booked solid for a month. I am going to talk to the nurse tomorrow about his constipation because he is miserable and his usual stuff is not working. I do NOT want him back in the hospital with that issue!

    All I see is numbers everywhere I go. Their complicated way of figuring coverage and meals is finally sinking in, but all I really do when I look anywhere is see math.

    On a good note, we did get a Genteel today from a family friend. It was recommended to us when they realized just how sensitive Jacob's skin is post-SJS. I am hoping he can try it tomorrow. His sister and I have tried it numerous times without pain. I hope that helps him get through the checks easier. Now to go on and find some solution to that Lantus....

    Again thank you for your welcome! I have been reading so much here over the past week and I really like this place already! :)
     
  6. BarbDwyer

    BarbDwyer Approved members

    Joined:
    Jul 8, 2014
    Messages:
    181
    My son complained of the lantus burn too and they switched him to levemir - which he says doesn't burn at all. It might be worth speaking to your doctor about.

    I counted calories before Luke's diagnosis so the transition to counting his carbs wasn't as hard as it might have been. We also had a cheat sheet for things that didn't have calorie counts and I still go off that a lot. I stopped counting calories and gained 50lbs though - ha! :sigh:
     
  7. Mommy For Life

    Mommy For Life Approved members

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    Aug 29, 2011
    Messages:
    548
    I am so glad you found CWD. You will learn so much here and get a ton of support along the way. Both your kids sound amazing. What brave boy you have! I love that his sister is so supportive. You guys will do great. Take it day by day or minute by minute. Try your best not to future trip. I did way too much of that when my DD was diagnosed. I actually asked the Dr in the PICU, when she was in DKA, if my future grand babies would get t1d! I mean she was 8 and there I was worrying about an a future grandchild. Whew! It is so much to take in and process, even if you have medical and family experience with diabetes. The CWD members here are AMAZING! Ask any questions you have...no question is dumb. We are all learning how manage the t1d beast. Hang in there!
     

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