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My daughter was 11 months old. For the preceding 3 months she had lost a lot of weight, so much so that the health visitor at the community centre (in Brighton, UK) where I took her for weighing once a month recommended that she be seen by a doctor. But when I took her to our doctor, she just said ‘Let’s keep an eye on it’.

In addition to losing weight, my daughter started drinking loads of water, wetting her nappy unusually frequently and instead of being her usual little sweetheart self she became ratty and miserable and she cried a lot.

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My daughter around the time of diagnosis

My husband and I started to think something was wrong when it got to the point that she would finish a beaker of water in one sitting and her nappies were completely saturated one hour after she had gone to bed. One evening my husband and I discussed what the cause of the drinking and peeing was: The heat wave that we were experiencing? Salt in the food that we didn’t know was there? And then it hit me.

I remembered that at secondary school during a health education lesson the teacher had talked about Type 1 diabetes. I somehow recalled that the symptoms listed were excessive drinking and peeing.

So, I booked an appointment for her to see the doctor the following day.

At the doctor’s surgery I voiced my concerns about Type 1 diabetes. The GP didn’t take it seriously and asked us to come back in three days time if my daughter was still feeling ‘poorly’.

But having Googled Type 1 diabetes before the appointment, I was prepared. More specifically, I had collected a urine sample from my daughter beforehand and I asked the doctor to dip the urine to check whether there was sugar in it (indicating diabetes).

The doctor dipped it, re-dipped it, and turned to me to ask if there was any chance that the Tupperware box I brought the urine sample in was contaminated with sugar. In-between tears all I could was whisper: ‘No.’

The doctor rang the hospital, where they urged us to drive over immediately. But before we left for that hospital visit that confirmed that my daughter was indeed Type 1 diabetic the GP said:

‘Lucky you had the urine sample with you’.

Yes. My daughter was lucky. She was ‘lucky’ because a teacher in Finland had spent 5 minutes talking about Type 1 diabetes and I vaguely remembered what the symptoms were. Whereas, shockingly, the doctor in the UK didn’t recognise the typical symptoms of Type 1 diabetes that my daughter was displaying: weight loss, excessive thirst, excessive peeing and tiredness, even when these were specifically spelled out to her.

Worse still, I don’t think this GP was a one-off case. Most people in the UK, including many GPs, seem to be oblivious to these symptoms, even though the UK has the fifth highest number of Type 1 diabetics in the world per capita (approx. 32,000 Type 1 diabetic children under the age of 14 years) and has about 2000 people diagnosed with Type 1 diabetes annually (ref.). Instead, it seems that GPs, the press, and thus also the general population in the UK are more aware of the symptoms of Type 2 diabetes (a less dangerous condition, that often affects people over the age of 40).

Had I not remembered that health education session from my Finnish high school, the chances are that, similarly to 1 in 4 Type 1 diabetic children in the UK whose diabetes is not diagnosed in time, my daughter would have collapsed, convulsed and needed serious and urgent hospital care. After all, when we got to the hospital my daughter’s blood sugar level was so high that the hospital’s blood sugar meter could not read it (> 42 mmol/L). Such high blood glucose level indicates that she had a huge insulin deficiency and as a consequence she was likely to start developing something called diabetic ketoacidosis, an extremely dangerous complication of Type 1 diabetes which, if left untreated, will lead to coma, organ failure or even death in a matter of hours. The thought of us following the GP’s suggestion to go back home for another three days is a thought I don’t really want to think about.

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My daughter after diagnosis (what you can see sticking ou under her top is a tube that connects her insulin pump to a cannula on her leg, she has been wearing it 24-7-365 for the past 4 years).

We were lucky, but many parents whose child is diagnosed with Type 1 diabetes go through the frightening experience of diabetic ketoacidosis, and even worse, some parents lose their child because of it. These medical emergencies could be relatively easily avoided by educating people (and GPs) about Type 1 diabetes.

So, to contribute to many Type 1 diabetics’ and/or their parents’ attempts to educate people, below I have written a short description of Type 1 diabetes and added a picture of the four most common symptoms of Type 1 diabetes (taken from diabetes.co.uk).  If your high school health education syllabus did not include Type 1 diabetes, I would recommend you familiarise yourself with the symptoms and make your friends aware of them as well.

 

Type 1 diabetes in a nutshell

Type 1 diabetes is not the same as Type 2 diabetes, the latter of these being the one that most of us have heard about in the news, and is most commonly associated with lifestyle choices. Type 1 diabetes is an autoimmune illness whose onset is usually in childhood, puberty or early adulthood, but people of any age can develop it. Importantly, the amount of sugar/fat in one’s diet or the patient’s weight or activity level is not related to the onset of Type 1 diabetes.

In Type 1 diabetes, like in other autoimmune deceases, for some reason white cells attack the person’s other cells. In the case of Type 1 diabetes, the cells that have been attacked and destroyed are the Beta cells in the pancreas that produce insulin, a vital hormone that enables glucose (sugar, carbs) being transferred from blood stream to the cells as energy. Without insulin a person will die in a matter of days. Thus, Type 1 diabetics need to inject insulin every day (in fact many times a day). No diet or herbal remedy will take away the need of insulin in these patients.

Type 1 diabetes – Typical symptoms pre diagnosis

diabetes-symptoms

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You can read more about our life as a family with a young diabetic child here, here and here.

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My daughter

16 thoughts on “The education that saved my daughter’s life

  1. My late husband was diagnosed at 35 with Type 1, an autoimmune response to Dengue Fever several years before. I didn’t know very much about it, but learned very quickly, and was shocked at how little many medical professionals in Australia knew about the disease and appropriate treatments.
    Your daughter is so cute!!!!

    • Hi,

      I’m sorry for not having replied to your comments sooner. I had major problems with my internet connection. Sorry.

      Yes, it is shocking how little doctors, nurses or the general public know about Type 1. I went to the hospital with my daughter in England once (for persistent high blood sugar levels created by the flu that she had), where a nurse asked how I controlled my daughter’s Type 1: with diet or pills. Sigh.
      And most nurses and doctors in the UK are genuinely shocked to find that my daughter hadn’t developed DKA at diagnosis given that that seems to way to diagnose Type 1 in the UK.

      On a positive note, even though most nurses/doctors know very little about Type1, the diabetes team at the Royal Alexandra Children’s Hospital in Brighton (under whose care my daughter is) is amazing. ❤

    • Yes, Finland is the country that has the highest number of Type 1 patients per capita. If I remember correctly, Sweden is number 2 and Norway number 4 on that list (but Australia, USA and UK are also all in the top 10).

      There seems to be genetic predisposition (in some Nordic countries), but research is suggesting that something in the environment triggers Type 1. Some of the suggested environmental factors are: vitamin D deficiency (due to little sunlight during the long winter months), consumption of milk and/or wheat (intolerance to these creates an autoimmune reaction), Rotavirus, and ‘hygiene’ ( lack of exposure to germs in childhood is suggested to cause autoimmune deceases).

  2. I’m the mum of a child with Type 1 and I think your child’s diagnosis stays with you for such a long time. I’m Scottish, living in Australia and had an emergency doctor’s appointment with a doctor who spoke very little English. I had a strong suspicion it was T1 as I’m a teacher and knew the symptoms. It could almost have been funny but it was terribly terribly sad! Three years on! All is good! Your blog is great and it’s always lovely to see other children thriving with Type1.

    • Hi,

      I’m so sorry I didn’t reply to your comment sooner. I had some problems with my internet connection.

      I’m glad to hear that your child is also coping well with T1. It would be nice to hear what happened when you took your child to the doctors? Did you tell them you thought it was Type1? Did they take you seriously, or did s/he not just understand what you were saying?

      x

      • I had a strong idea that it was T1 but I didn’t want to freak my son out. I was trying to be subtle with the doctor who had English as a second(or possibly 5th) language and he had clearly never spoken to someone with a strong Scottish accent. I gave up on subtlety quite quickly and told him I thought he needed to test his urine and blood for diabetes. He got that and off we went. Pretty soon after we were in the hospital and that day we met our amazing diabetes educator who has been our guardian angel ever since.
        If you want to help me, I am now trying to give back to my local community and I am collecting Letters of Hope to give to families of newly diagnosed children in my rural area of Australia. I’ve just written about it in my blog and if you would like to contribute a letter, that would be lovely. No pressure if you can’t! Maureen

  3. This is truly terrifying. Thank you for passing on your education. I can only imagine how difficult your daughter’s disease is for you and your family, but I marvel at how well she’s doing and at your determination and devotion. Stay strong!

  4. Wish you all the luck in the fight against type 1 diabetes of your daughter.
    I myself is a 22-year old, being diabetic for the past 6 years. It gets tough sometimes but I am living with it.
    How many times does your daughter need to be injected with insulin?

    • Thanks for your comment. It’s great to hear that you have coped well with T1 even through your teenage-young adult years. Even though I’m sure my daughter will manage her T1 well, I find the thought of my daughter going off to university and me/my husband not being there to make sure she’s ok really scary. I don’t know what your situation is but if you nolonger live with your parents, I’d love to hear how did you (and they) find you moving out?

      When my was first diagnosed she was on injections but because it was very difficult to administer such miniscule amounts of insulin to correspond to a 1 year old’s carb intake (e.g. 3 grapes or 8g of carbs in porridge 😀 ) and because it was impossible to maintain regular meal regime (sometimes she didn’t want to eat when she needed to and sometimes she was just grazing all day) we very quickly changed over to a pump. So, currently she just gets a pump cannula change every 1-3 days and a continuous glucose monitor cannula change every 1-3 weeks, and injections only if there is a pump malfunction.

      • well, when my college started, I was prepared to stay away from my mother and also mentally, I had to convince myself about some tough days ahead.
        But luckily I attended college which was some 30 minutes away from my home and so I stayed on in my home and graduated from engineering.
        Now, presently, I still live in my home and because my mom constantly inquires about my food habits and make all the necessary food arrangements at home, I am not finding any difficulties. But lets see, what’s in store for me in the future!

  5. What a heartbreaking story. I’m so happy that you were educated with the symptoms and were able to convince the doctor to run a few tests. Great job, Mom!!

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