The aim of this website is to educate and help parents and carers who are responsible for a child with type 1 diabetes, through my own personal experiences and research without baffling you with medical jargon.
Hopefully I will help to answer most of the pressing questions and concerns that parents and carers have about type 1 diabetes, helping with the day to day management of type 1 diabetes, whilst offering support to those that feel overwhelmed or isolated.
I am a Holistic Therapist and Hairdresser and live in Bournemouth with my husband, two sons and two dogs. I have had type 1 diabetes for several years but was mortified when my youngest son was diagnosed with type 1 diabetes at the age of 2.
Once I had accepted that my son had type 1 diabetes and was in more control, I decided to help other parents and set up a face book support group. The next step was my blog which paved the way for my book...
Learning your child has diabetes is, without doubt, a traumatic event for any family. When Eddie was first diagnosed, we went through the classic stages of grief: anger - why MY child?; denial - no, this isn't real, how can my child have diabetes; depression - I feel so isolated, I can't cope and finally acceptance.
The early days after diagnosis are the worst, even 14 years on I can still remember how us the parents felt. Suddenly we had to face up significant responsibilities and emotional, mental and physical pressures. I shed many a tear, it felt like my child had a dreaded curse put on him. Having a child with type 1 can cause extreme stress between couples, as both of you may lack confidence in your ability to cope and your knowledge may be limited.
At this stage, you will need support from your diabetes clinic, family and friends. Don't be afraid to ask? You can also seek out local support groups....
Your child has just been diagnosed with type 1 diabetes and you leave the hospital armed with copious amounts of medication, leaflets and a heap of information you simply can't comprehend. You think you are covered even though you are potentially in the dark!
The Doctors and Diabetic Specialist Nurses omitted to tell you a few things that will affect you.
Sleep deprivation. You will never sleep properly again! Well that's not totally true but setting an alarm at 3am to test your child's blood sugar is disruptive to say the least. Sorry to tell you this can last for a few years especially if your child is on MDI. Just invest in a good concealer and mascara....
I am always mentioning Diabetes and I guess people it doesn’t affect are fed up with it - sorry! Some people I know don’t think it’s that big a deal. Ok then try living with it for a day, I hand the whole responsibility of it to you for one day, could you cope?
I have type 1 and know what I am doing, should do by now have had plenty of practice! What I am proposing is you for you to take care of my son for 24 hours.
Eddie was diagnosed when he was only 2 years of age. He has been injecting for 10 years 4 times a day. He has tested his blood 6 - 8 times a day, he has to, it is his life....
Is your teenage child’s HbA1c creeping up at each diabetes clinic appointment. Have they become complacent about their diabetes. Are they not testing enough, not carb counting or are their hormones playing havoc? Whatever the reason this problem has to be nipped in the bud, Now!
As our children approach adolescent years they are entering a new chapter to their lives. There are new horizons stretching out before them. They will probably be going out with friends more and experiencing different pastimes. Difficult times for all parents but if your teenager has type 1 diabetes then it becomes more complicated. To your teen diabetes will seem like a lingering hindrance which consequently just gets kicked to one side. Unfortunately this can’t be allowed to happen.
Whatever your teenagers life is like, whatever they do, diabetes is going to be constantly by their side. It’s their life long buddy and has to tag along for the ride.
Talking and reasoning with a teen can be difficult at the best of times but communication is the key. Yes teenagers want to be independent and because of their bravado us parents suddenly drop a lot of the diabetes management (at last we think), and wonder why everything has gone pear shaped. Guess what? Your child still needs your help.
I found this out with my 16 year old son Eddie. I thought he was coping, he wasn’t!
We explained that this ‘black sheep’ (diabetes) was a permanent shadow, whether he liked it or not. I suggested that he consciously try and think that his ‘black sheep’ was just a tiny inconvenience and not as big as he was conjuring up. I said with this in mind, his tiny inconvenience could be tucked in his pocket, so to speak. I explained that he could get on with his life, his new friend ‘diabetes’ wasn’t in his face but silently nudging him to keep him sweet (excuse the pun).
I continued by stressing that to keep diabetes calm he was going to have to give him a little bit of attention. Just enough not to dampen Eddie’s ego or affect his street credibility. I told him he could still go to parties with friends, play sports, go bungee jumping, skydiving, rock climbing – he could do whatever his heart’s desired.
Diabetes doesn’t need to stop your teens life, so talk to them, give them support.
Management plus routine = control.
Simple ways to get your teenager into the momentum of routine is
1. Try and get your child to test blood sugars regularly, especially before meals, before sport, before dancing, before driving, after drinking alcohol and before bed.
2. Your teen must count their carbs and give relevant insulin doses whether by MDI or via an insulin pump.
3. Encourage your teen to give correction doses.
4. Ensure they carry dextrose tablets/sweets/Lucozade with them at all times, for hypos plus a small snack and obviously their meter for testing blood sugars!
Unfortunately dealing with teenagers isn’t easy. More children at this vulnerable time have to see a psychologist.
Diabetes is life changing but to a teenager it is a real problem. They have enough to deal with in their lives without diabetes butting in!
Eating huge amounts of food is normal – especially when it comes to boys due to the rise in hormones.
Be careful your teenagers aren’t bingeing on unhealthy snacks eg. Cakes, crisps, biscuits and fizzy drinks. You won’t be able to totally stop them, after all all children like junk food, just be aware of how much they are consuming.
Try to include regular meals (slow acting carbs, eg. Pasta and rice).
Fueling up properly at set meal times seems to help to a degree. Eddie is always hungry and has often gorged on crisps, swallowed down by gallons of diet coke. I don’t know if it is true but I read that fizzy drinks increases the appetite! Eddie is only allowed fizzy drinks at the weekend and already the bingeing has stopped.
To help your son or daughter be vigilant about what you buy. The hunger pangs are not related to diabetes but to puberty. Another reason why our teenagers are consuming vasts amount of food is because a special appetite control chemical is missing from type 1 diabetics. Basically they don’t have the hormone telling them they are full!
Above all don’t nag or preach – it simply doesn’t work. Try to include their diabetes care in a conversation. Ask how they are coping. Ask if they need help. Above all show you care without overwhelming or suffocating them. Agree to discuss levels once a week.
Management of diabetes is crucial but doesn’t have to take over your teenagers life. If you are struggling please consult your DSN. Above all be there for support, age is irrelevant.
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Are you ignoring you? Are you so engrossed in your child’s care that you have lost your spark your va va voom? It’s not surprising, after all your child has a chronic relentless disease and you are responsible for managing it. When your child is diagnosed it is overwhelming. The responsibilities alone cause emotional stress to the whole family. The focus on a diabetic child can cause sibling jealousy. You can’t help attending to your diabetic child’s every need, you can’t leave them with anyone else, it’s all up to YOU.
All this puts pressure on your psychological and emotional self. YOU have to learn so much in a short space of time. YOU fear you won’t cope, YOU worry for your child’s future. Will there ever be a let up?
Your once ‘normal’ world has turned upside down and everything changes. Old friends seem to suddenly back off. It’s almost like they don’t want to hang around with YOU. Perhaps it’s the medical implications or that YOU constantly go on about diabetes.
Or have YOU changed? Of course YOU have! Your life revolves around diabetes, it never stops – diabetes does not sleep.
YOU wake up at alien hours of the morning to test your child’s blood sugars. YOU go through the day in a fog from disrupted sleep. YOU have constant dark circles under your eyes – concealer sales must have rocketed!
No one asks how YOU are, or how YOU are coping.
Sometimes YOU don’t cope. The burden of type 1 diabetes lays heavy on your shoulders. You wish your precious child would be free of this curse. YOU beat yourself up when YOU get it wrong. YOU cry at the injustice of it all. YOU feel isolated, scared. YOU worry about possible future complications. YOU worry when your child is out of sight, at school, when they are asleep, when they are playing with friends, when they are ill – the worry goes on.
But do YOU realise, all of YOU are Super Mums, with a capital ‘S’. But you must not forget YOU. Try and confide in a friend who you can share diabetes care with so that YOU can have some quality time for yourself.
After all it’s YOU that counts
I remember when diabetes was just a word, when I could give you whatever you wanted to eat without thinking about carb counting and sugar content.
I remember that carefree smile you used to have, the spontaneous play you used to enjoy without having to test your blood to check if your levels are high enough To enjoy it or so low you have to sit and watch while you have something to eat!
I remember days out and holidays when we could just pile into the car and go , not have to make sure you have your insulin , testing kit and enough snacks and hypo food!...
My son Eddie was diagnosed 14 years ago at the tender age of 2. Back then there were no support groups and I felt very isolated and battled daily with a relentless disease that filled our lives 24/7. I eventually came to terms with it and in order for me to give my son the best quality of life I realised knowledge was essential and I consequently searched on the internet for all the relevant information.
Facebook then started and I started a help page for mums like myself. ( 'What Mums and Dads need to know to help children with type 1 diabetes'.) Please see useful links page for more information. I couldn't believe how many children were being diagnosed and how ignorant people were of the disease. It was at this point I decided to raise awareness of type 1 diabetes in children.
I am not a medical expert but being type 1 myself and having a child with it I know I can give advice on experience alone, but I have to add I am always learning something new, every day.
I know only too well how scary it all is in the beginning, how your emotions are brought to the fore, how relationships can become strained due to the stress of it all. Yes it is hard, yes it is relentless but you can live with diabetes, you can walk alongside it rather than cower in it's shadow.
I want to help in whatever way I can.
Understanding diabetes can be confusing, complicated and with all the medical references - a total maze. You can feel daunted as diabetes is all consuming, it's relentless. I am hoping I can help you to take care of your child and to try and incorporate diabetes into your daily life without you feeling totally out of your depth and over whelming you.Diabetes CAN NOT be ignored, you have to LEARN, to have to become ORGANISED and above all you will have to have a ROUTINE.
You will have to incorporate different foods into your child's diet, you will need to be good at basic maths (I personally hate maths and have been known to use a calculator)! to work out how many carbs you are using, working out ratios, yes it is never ending. It does get easier - you are in charge, in control and you can do it.
You also have to be prepared for 'sick days' and know what to do with different exercise. These
will be covered on seperate pages.
Eddie has had endless hypos in the last fourteen years. Some of them have been extremely worrying, but none have been as severe as the one we experienced the beginning of the year in 2014.
I went in to wake him up, in the morning and he was totally unresponsive. We had missed his hypo and it rendered Eddie unconscious. Therefore, he was physically unable to eat or drink a source of rapid glucose. Suddenly I wasn’t in control, and my son was in a bad place.
I rang 999 in a total panic. I was scared, and extremely frightened of Eddie’s outcome. I just couldn’t watch my son and do nothing and I had no idea how the long the paramedics were going to be. I decided that I had to use the glucagon injection that had sat in my fridge for a while. (If you have one, check the use-by-date regularly). I had never used it, never even opened the orange box to look inside. This injection basically tells the liver to release glycogen, which is converted into glucose, into the bloodstream and raise the blood glucose level again. It can be a lifesaving treatment.
Believe me, I was scared. The needle was huge. With trepidation I injected Eddie’s bottom and expected him to yelp, but he never felt a thing. Thankfully, the ambulance arrived, and the paramedics commended me on my quick thinking.
After treatment with several tubes of Glucogel and forty five minutes later, Eddie finally came round. Afterwards, he felt very sick due to the glucagon injection, but this is a normal reaction.
Please do not use glucagon if your child is allergic to it.
Tips: If your child is unconscious and you suspect he/she has had a low blood sugar, don’t waste time checking the blood sugar, as the longer you wait to treat a severe hypo the greater the chance of serious side effects ie. A seizure.
If you haven’t got a Glucagon Injection ask your GP to add to your prescription as it is a potential lifesaver.
Diagnosed 19th November 2010....Age 11 ..... told by Linda Miller
Looking back on the 2 wks prior to dx, I can see some signs . But then, I didn't see those signs. I guess having a usually happy healthy active fit daughter didn't give me great cause for concern and with no Diabetes T1 in the family, it was something I never considered... Anyway, 6 wks prior to diagnosis, Heather entered herself into a cycle to school and back competition, everyday for the chance to win a new bike... Heather wanted to win this bike for her friend who didn't have one . Even though her bike wasn't an up to date one, she's just that type of person. Anyway, the weather over those 6 wks was awful. It started in October and went on till 19th November . Constant driving rain almost everyday with a heavy backpack. My girl was soaked almost everyday but has gritty determination... Also for the last 3 Fridays before diagnosis Heather went to the dry ski slope in Glasgow with the school.. So at 6 o'clock I would walk over to the school and meet her so she could cycle home and still be in the Competition. Just over 1.5 miles each way ...
On the 19th November Heather was told that the competition was over and if she wanted she could leave her bike in school because of the ski ing.. This suited me great because my son Lewis, then 8, had to be at boys brigade for 7. I went to school a bit early and seen the kids all waiting at reception. Heather came out at 5.55pm with a bowed head, slurred speech and had a stagger when she walked.. I asked her if she was ok, she said yes... I said, you obviously are not ok, have you banged your head??? No she said, I'm just really tired... We got in car immediately and came home.. I got her into my bed and took her temp, all normal, but she looked like she was on drugs, strong drugs.. I examined her head for bumps or cuts and quickly scanned around her body, but all seemed fine.. It was 6.05 or 6.10 by now... I knew something wasn't right... I called nhs 24 and explained what was wrong... They asked me how long she had been like this... I said to them please don't think I'm a neurotic mother but only 10 mins or so but I know something's not right.. They asked to speak to Heather and I had to tell her to sit up and try to speak very clearly... So they spoke with her for a few minutes...then they asked for me. They asked me to go to another room... They said they weren't happy with her symptoms and how she sounded so she had to be seen by a doctor and the quickest way was to send an ambulance...
My husband, Callum, was at work and Lewis was watching tv. You kind of go into automatic then, because I started thinking ok, I need Lewis to be gone before ambulance arrives so whilst on phone waiting to organise ambulance I got the other phone and called my friend who lives beside me and asked her to come over.. She said is 20 mins ok, I said no, I need you now, you need to take Lewis and then I mumbled in about Heather, the hospital and an ambulance ... She was in my house before I out the phone down...
Anyway, Lewis gone and in the safe hands of my friend , the paramedics arrived first in a car... Heather had kind of perked up and was now downstairs with a housecoat and cosy slippers on looking not bad.. I thought , omg what have I done. She seems fine.. Paramedics spoke to her and ambulance arrived, they checked her blood and they said she's 28.2 ... I said, oh ok... I had no clue what that meant... She walked out to the ambulance and up to hospital we went... I called Callum and he arrived at hospital at same time as us...
We were put in a cubicle and they took blood tests and urine tests... Heather and dad were laughing and joking and talking about when we left hospital we would get some takeaway food, go collect Lewis and rent a movie... I was annoyed at their laughing telling them that people were dick heads and it wasn't appropriate to be laughing.. They thought this was also funny because I was stressed and telling dad off too...then a doctor appeared and pulled the curtain behind him...
He then went into a speel and all I heard was t1 diabetes, insulin dependant for life and transferred to a paediatric hospital.. Callum stopped him and said, hold on a wee minute .. Can you start again and firstly, tell us who you are and talk slowly to help us understand ....I think we were all in shock by then...they transferred Heather to another cubicle but bigger and hooked her up to a bag of something which then I didn't know and put a canula in her arm... She got heart monitors on her and wasn't allowed even water.. They told us she was getting transferred to the paediatric hospital about 30 mins and that would be in about an hr..
So Callum went home to collect some nightware, etc for Heather... He had only left 10 mins and the ambulance appeared for her.. I said we can't go my husband had just gone for Heather's things ... They said, the other hospital want Heather now because her ketones are very high also.. I didn't understand this either, they tried to explain but all I took in was the word urine. I had no bag money or phone to call Callum but somehow they contacted him and he met us at the other hospital. We went in a blue light. Heather started to take a dip again when we got to Wishaw hospital, so we got sent straight to a ward and again Heather was hooked up to a number of machines, drips etc for about 2 days.. Different doctors , nurses, dieticians, etc came to talk to us... It wasn't all at the one time, they were drip feeding heather, Callum and I the information about diabetes. We knew nothing..we knew basically what t1 was but honestly, we knew very very little...
We stayed there for another 3 days. Every toilet trip heather had, had to be tested.. We went to toilet after day 2 with the drip and had to bring leave the urine in toilet for nurses to test.. She was taken off all monitors and drips and then they showed us the pen and how to inject.. Heather did that first one... The pain of watching your baby stick a needle into themselves is something I will never forget but now I know that tiny needle prick keeps her alive..
We left the hospital after 5 days with no ketones and laden with a library of information . We got just to the end of the hospital entrance and I broke down telling Callum to take us back, that I couldn't do this... He waited till I had composed myself and we came home... We have been back to the hospital but only to attend the support group and go to a carb counting course.. They have opened a diabetic clinic for kids at our local hospital so it's good. Heather hasn't had too many episodes since being diagnosed, although I have had to call hospital once for advice as she was over 30...but all in all, in the 15 months since being diagnosed she is growing into the beautiful daughter she always was ....
Looking back to pre diagnosis, I had Heather at local gp because she didn't feel well... She could not put her finger on it she said... She had a sore throat ish , sore tummy ish, sore head ish but nothing definate.. Gp, who was a locum, said it was viral and gave us a prescription for carpol and neurofen.... Leaving the surgery that day, I knew deep down that she didn't need calpol and neurofen .. Infact, I never got that script filled...also the night before she was diagnosed she drank 3 , 500ml bottles of water and woke up the next day ( dx day ) saying she felt like her throat was closing over... I said, we will take you to doctor.. No she said, this is my last day of the cycle to school challenge and I so want to go ski ing, if I'm not well I will call you... And off she went to school on that day the 19th November 2010...and she didn't win the cycle competition but was runner up....diabetes is not in our family so it never entered my head ...
My nearly 3 yr old had been ill for a few days with a temperature and was generally unwell. Took her to see out Gp told him she was back in nappies after being dry for 6 mths and that she’s was drinking 15+ 400ml bottles of squash a day, her breathing was heavy and she just seemed to be lacking energy. He said that it was a virus at first then said that he would give her antibiotics for a water infection!Four days later she hadn’t picked up at all and she was refusing to walk saying that her legs were hurting. By this point her breathing was terrible. The Gp looked her over and said that she believed that she had a ear, throat and lung infection and gave her stronger antibiotics, she said to take her back in four days.The following day my daughter was unresponsive and wouldn’t drink or eat and was clearly having serious trouble with her breathing. We rushed her to A&E and she was rushed straight to resuscitation room!!I was told that she was Type 1 diabetic and in a semi diabetic coma with Diabetic Ketoacidosis and that she will be insulin dependant for the rest of her life!!I was questioned as to how long she had been poorly and if I had taken her to see a Doctor. I explained that she had seen two Gps and they were gob smacked that both had misdiagnosed her in a week when a nurse in A&E took one look at her and knew she had type 1 diabetes!