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Addisons and Diabetes

Discussion in 'General Discussion' started by sugarmonkey, Jan 14, 2016.

  1. sugarmonkey

    sugarmonkey Approved members

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    Is there anyone here who's child also has Addisons disease. My son was diagnosed with this today after an emergency admission to hospital with what we thought was a stomach bug.
     
  2. BrendaK

    BrendaK Neonatal Diabetes Registry

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    Yes my son Carson was diagnosed a year ago with Addisons. He had the antibodies for years and had yearly Bloodwork done to check adrenal function. All was normal until a year ago. His endo fortunately caught it before a crisis. It has been a big adjustment to get used to and a bit scary. He takes prednisone 2x daily and florinef in the evenings. He always carries solu Cortef.

    We have a big 504 meeting at school today to add addisons in the plan. Basically for Illinois there are liability laws to cover a non medical person to be trained on diabetes care but liability laws say only a nurse can administer solu Cortef. Also paramedics don't carry solu Cortef. I've been successful in getting all of the paramedics in our county trained on administering Carson's emergency solucortef if needed. If he goes on away from school trips the school will be hiring a nurse to go.

    How is your son doing? Carson has never had an adrenal crisis and it's scary to even think about. Our instructors are that if he even vomits one time no matter the cause we are to inject solucortef and call 911. Carson and my husband are going on an 4 day school trip tomorrow (school is footing the bill for dad. Cheaper than a nurse and easier since we don't have a 504 in place yet). I've packed about 3 months of supplies for 4 days!

    The thing we struggled with right away is remembering to take the dang pills, especially when he is away from home at night. They are not attached like his pump is!!

    Please let us know how your son is!!
     
    Last edited: Jan 14, 2016
  3. BrendaK

    BrendaK Neonatal Diabetes Registry

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    I wanted to add that Carson is a super happy and healthy kid. One time he forgot his morning prednisone until 1pm and felt awful but normally he feels great and super healthy.
     
  4. sugarmonkey

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    Phillip is also super healthy, Brenda. Apart from injuries and diabetes check ups he's only been to the doctor a handful of times. Once diabetes diagnosis, twice for a recurrent eye infection (that now may be linked to the Addisons) and once when he got the Addisons diagnosis.

    He was in adrenal crisis when we got to the ER. At the time I thought it was DKA from a tummy bug. They now say he never had a tummy bug at all.

    Addisons explains a lot of things that were happening in the past year. His blood sugars had been really tricky to manage and he started having a lot of lows where he was unable to treat himself. He'd never had that before. And some of the numbers weren't all that low (3s usually). He had had periods of unexplained vomiting off an on for a while. And his motion sickness had got worse. He's always got carsick on long journeys, but he couldn't even handle driving to my Mums, just over 1 km away.

    I've made Phillip set alarms on his phone for the pills. Hopefully we can remember. As he's never been sick he's not used to taking meds except insulin. It's quite strange for him.

    They haven't given us the injection at this stage. We live less than 5 minutes drive from the hospital (can see it from my window as I type this). He has an appointment with his endo in a couple of weeks (maybe sooner) and they've told us we'll talk more about Addisons then.

    Phillips on hydrocortisone three times a day, and something starting with F once a day at the moment. That's until some blood tests come back. He may stay on that or change to another depending if it's pituatary or adrenal. But the doctor was fairly certain it was whichever one needs the pills he's on.

    This sounds easier to manage than diabetes, but a lot scarier.
     
  5. BrendaK

    BrendaK Neonatal Diabetes Registry

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    I'm glad he's ok!! The adrenal crisis is so scary. Carson is on prednisone instead of hydrocortisone. I can't remember the reason. And I'm sure your son is on florinef. It helps with salt retention.

    We found insulin needs went up initially due to the steroids but leveled off within a couple of weeks. The dr said the increased insulin is what he would need had his adrenal glands worked properly. Blood sugar has been pretty easy to control.

    That's interesting you mentioned motion sickness. I wonder if that's what Carson's car sickness was related to. I never thought of that. I wonder if your son will look back and in hindsight be able to recognize more symptoms. One issue Carson had was passing out after a blood test from low blood pressure. The dr and clinic insists its not Addisons related but he stopped passing out after starting meds.

    We didn't get the emergency injection until our follow up appointment. One tip we've learned is to have LOTS of emergency stashes of pills. Just in case you are out and far from home and forget to bring them. Carson has some at school, some in his backpack and I always carry a few days worth in my purse.
     
  6. sugarmonkey

    sugarmonkey Approved members

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    There's already things we look back at and can relate to Addisons (a bit like we had with D too). Phillip would get light headed when standing up from sitting or lying down. We had been told originally it was because he was growing so fast. That went away within a few hours of his first dose of hydrocortisone.

    The thing that tipped one of the doctors off was his skin colour. We're both very pale red heads, but Phillips skin had a brown tinge to it. In the last month or so I had been constantly telling him to wash his hands as I thought they were dirty. Turns out it was hyperpigmentation caused by Addisons.

    Phillip's finished school now, so that's not an issue anymore. Not sure how work will go. He works evenings, sometimes till midnight so the doctor has told him to take his last dose around 6.30ish so he doesn't crash too early. We got one of those 7 day pill organisers and put his daily doses in there. In the morning he takes the breakfast dose then puts the plastic tray thing in his bag, in case we're not home. I'll put some extras in a bottle in there too.

    I'm hoping the blood sugars will get easier. He'd had some really scary lows in the last 12 months, and the doctors are fairly sure that was due to Addisons.

    I ordered a new medical bracelet last night. We had been meaning to do this for a while, so I'm glad we procrastinated on it.
     

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