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Toddler son just diagnosed with diabetes

Hi there

I am new to this site.

Last night I was at the casualty section of Wilgeheuwel Hospital in Joburg because my 2 year-8-month year old son has been very listless and vomited and I thought he probably had gastro.

He was diagnosed about 2 hours ago with Type 1 Diabetes and was taken straight to ICU to be stabilised and to have tests done.

This was an overwhelming, terrifying moment for me — I know very little about Type 1 Diabetes and my OCD thinking went into a tailspin about “what if he is in a situation one day where there is no insulin available and and and…”.

Forgive me for sounding so panicked, but I am utterly at sea and trying to come to grips with the news. I am writing in the hope that someone can tell me everything’s going to be ok – that the ‘episodes’ or emergency situations will be able to be handled with confidence and success, and that (bar all the huge adaptations we’ll make to our lives), HE WILL BE OK.

I’d really appreciate any comfort anyone can give to this totally inexperienced, upset mom.

Thank you!
– Hayley

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8 Comments

  1. Hi Hayley,
    I am so sorry to hear of your child’s diagnosis, I know just how confusing and frightening it can be at first – when I was diagnosed with Type 1 diabetes, I thought my life was over.

    Luckily, I have nothing but good news! While it is a huge adjustment at first and the poor little thing is going to have to get used to injections, diabetes can become just a part of everyday life. There is absolutely nothing it’s stopped me from doing – I’ve travelled all over the world, I scuba dive, I run a successful business and I’m totally healthy. I just had my annual blood tests done and, in short, in 6 years of having diabetes, I am just as healthy as if I didn’t have it – bar living with a chronic condition every day.

    I think that’s the hardest part to get used to – that it’s a chronic condition and won’t ever go away. The odds of you being in a situation without insulin are very slim, you’ll always have extra at home (medical aid will be sure of that) and even if you ran out, it’s available from every hospital, clinic or pharmacy. You do need to be more prepared and make sure you always have snacks on you in case his blood sugar goes low, and the first couple of months or a year will feel like a non-stop learning curve as you start understanding the condition more. But the advancements in technology are amazing and it’s getting easier to live with every day.

    I can also tell you that you may not have emergency situations. I was diagnosed very late, rushed straight to ICU and 3 days away from a coma. But in the 6 years since I haven’t been anywhere near an emergency room. While it’s obviously more difficult with a child and adolescent, there is an enormous amount of support available, and so many of us who know what it’s like to live with diabetes.

    The other good news is that, while there will be huge adaptations, diet is not as scary as it used to be. Everything in moderation is the rule of thumb these days, and going to see a dietician will help you figure it out much easier – there’s something called carb counting that takes a lot of the mystery out of how to dose insulin.

    So! What can you do now?
    1. Find an endocrinologist (diabetes specialist) you can trust.
    2. Find a dietician who can explain food to you in a diabetic context – ask your endocrinologist who they recommend.
    3. Join our Facebook page, Diabetic South Africans, so you can ask questions every day (I’ll post your request on our website too) – http://www.facebook.com/diabeticsouthafricans
    4. Join Kids Powered By Insulin on Facebook – it’s specifically for parents of kids with Type 1 diabetes, and is very helpful.
    5. Take a look at where to get your free copy of Sweet Life magazine – http://sweetlife.org.za/magazine-2/

    I promise that although it seems horribly frightening, you will adjust. You’re not alone in this.

    It will be okay!
    Chat soon,
    Bridget

  2. Rachel Rachel

    Hi Hayley

    My son is also a diabetic. He was diagnosed at age 12 nearly 6 years ago. I just wanted to say, hang in there. Your child will be ok. He will one day be able to cope with this all. Just remember that this is not your fault. Nothing could have prevent this. Yes do join our group on facebook, Kids powered by insulin. This group has helped me through some tough times. My diabetic being a teen and all.

    Remember there is light at the end of the tunnel. Keep the faith. It will get better, that I promise.

  3. Lynn Hitchcock Lynn Hitchcock

    Oh my, I know the feeling of absolute devastation I was diagnosed with Tupe 2 diabetic three years at an oldish age, and I live alone, and thought the world had come to an end, but as Bridget says, adjusting and self-control is the answer. Obviously for such a little one is very difficult. I’m very aware of what I eat. Also just had my annual test and my cholesterol is excellent, but I need to watch what I eat more. Living with diabetes is difficult, but doable.

  4. Richard Richard

    Hi Hayley

    Don’t sweat it! Your child is one of a growing number of kids with the condition these days. You will have to adjust, for sure, but diabetes is one of the best caterered for ilnesses in the world. The strides that have been taken in treatment techniques are nothing short of miraculous, even in the space of a generation.

    When I was diagnosed with Type 1 five years ago at age 24, I spoke to a life-long type 1 diabetic who said that when he was diagnosed in the 70’s, there were no “sugar free” products, blood tests were expensive and painfull, and injecting was done via a glass syringe that had to be sterilised over a flame!

    Now, to be honest, the only real difficulty is having to think ahead (dont’ leave home without a bar one!), and of course having self restraint (which can only really be a good thing in the long run).

    I would go so far as to say that if my future kids are diagnose with Type 1, I wouldn’t stress at all about it – but that is at risk of undermining how frightened and upset you must be feeling. So what I can say is – don’t sweat it. Ask questions as often as you like and keep your chin up 🙂

  5. Randy Chengladevar Randy Chengladevar

    Hi hayley,
    All will be ok as long as you take care of it and treat it accordingly.
    Keep monitoring it and it will be fine!

  6. Hayley Hayley

    I want to thank Rachel, Lynn, Richard, Randy and Bridget SO SO SO SO MUCH for your comforting words. I can’t tell you how grateful I am.

    I was so terrified in the beginning, because I thought I'[d have to weigh David’s food, work out carb counts, subract, divide, add, times by the power of 10, and so on, to understand how much insulin to give him.

    Thankfully (and miraculously), the paed who happened to be on night duty at Wilgeheuwel when I took my son in happens to be the resident diabetics expert. Also miraculously, although he was retiring soon and therefore not taking on any new patients, he made an exception for us.

    He was very matter of fact and took the practical approach, which we are emulating at home.
    He also recommended David continue eating kiddie food as long as it’s wholesome, and that we base the insulin amount after each meal on his blood test result before the meal. We are very honest with our son, and while we don’t make a big sentimental scene about the injections etc, we also don’t dismiss his nervousness. It seems to be working.

    My only worry at the moment is that, becuse his poor little body was starved of energy before and now he’s insanely hungry, all he wants to eat is brown toast and “but-tah!” – The first meal back at home he ate 4 slices of toast and butter and 2 mini yoghurts. It’s all carbs carbs carbs, and the doc said we must do balanced meals.

    So I’m hoping I’m not doing the wrong thing by allowing him to feed his fat needs for now. I do make a point of shredding smoked chicken over the toast first and then covering it with the now famous butter, but am still worried that all this fat/carb intake is going to play havoc with his BS.

    Anyway, I know we will get it right, and I am so hugely relieved that this is indeed such a well researched and well understood condition.

    Thank you all so much. I will certainly join the FACEBOOK page.

    • Such a pleasure! You are so lucky to have found a great specialist so soon – what a blessing!
      I would say that as long as you’re giving him protein with the carb (i.e. the smoked chicken, as you say, or cheese or nuts or something) then it’s fine to let him eat what he wants – you can always adjust his diet later, once you’ve all had a chance to understand the condition a bit better…
      We’re all here for you – you’re not alone!

  7. Steven Steven

    Dear Hayley

    I was diagnosed with Type 1 6 months ago at age 27! It was a huge shock and devastated both me and my partner, but within just a few months I felt completely normal and got my blood sugar beautifully under control.

    While I can’t help you with coming to terms with the news, I can provide words of encouragement and a little advise for those “experimental” weeks of insulin adjustment. I live a normal life with diabetes. I have three normal meals per day, and in between meals I have a non-carbohydrate snack. I can gym and hike safely – although I check my blood sugar hourly when doing strenuous activity – and have around 2 very mild hypoglycemic events per week which are easy to deal with. No ER visits yet!

    Assuming your son will be going on intensive insulin therapy (multiple daily injections), I would advise you to under-administer rather than overadminister insulin, even if his sugars remain a little high the first few weeks. Most likely, he will enter a “honeymoon” period after a few weeks where he might need hardly any insulin at all, which may last a few weeks or months. The slow-release insulin in particular should not be too high – rather use rapid acting insulin to bring down blood sugar after meals. When I started out, I was having frequent hypoglycemias because my slow-release dose was too high, and I was constantly snacking to keep my sugars normal. Hypoglycemia (low blood sugar) feels terrible – sweating, shaking, depression, weakness, anxiety – and you’ll want to avoid those a far as possible. Don’t let his sugar fall below 4 mmol/L.

    The first few months will be a trying time. It will be difficult trying to understand how your son’s blood sugar responds to meals and treatments, and it varies from week to week during the honeymoon phase, as well as at different times of the day. I am far more insulin sensitive in the morning compared to the evening, for example, and so my carbohydrate-to-insulin ratio changes through the day.

    I hope you have a smooth ride. Don’t be despondent, your son will still have a happy and healthy life! Moreover, he has been born into a time of remarkable medical advances, and I expect that within his lifetime there will be an effective cure.

    All the best!

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