Parenting in my shoes – My little girl has diabetes

Jenni is married to gadget and technology loving Aussie Andy (who goes by the affectionate and wholly original nickname Skippy in certain circles). Mum to drama and dance loving daughter Alana (7), and would-be astronaut son Zach (6), she loves coffee, spending time with her family and friends, travelling and watching her children play together happily.

Being a stay at home mum wasn’t something Jenni visualised for herself but as she says,  you never know what “curve-balls life will throw at us”.

Jenni’s curve-ball came in the shape of a diabetes diagnosis for her daughter at just two years old. She explains the reality of life with a child who has a chronic disease, and the significant restrictions involved.

Suspecting something was up…

My husband Andy and my sister also have Type 1 diabetes so I was somewhat aware of the symptoms. It all happened quite quickly over the period of about a week. Alana had been particularly grumpy and tired leading up to that week, which I had put down to the typical “terrible twos” stage and the fact that I’d just started a new job after a year off with my babies. As the week went on she started asking for more and more water and was going to the toilet more and more frequently. When she started waking at night crying for water alarm bells really started ringing. I remember lying awake at night googling symptoms and trying to convince myself she was ok – like I hadn’t noticed a big weight loss or sweet smelling urine.

I’ll never forget THE DAY. We spent the afternoon at Brittas Bay with friends, I confided my fears to a friend that same day but again convinced myself she was ok. Then after we got home we noticed that she went to the toilet 3 times within half an hour, so we used Andy’s glucometer to do a blood glucose test on her. The result just read “HIGH”. Our fears were confirmed and we rushed straight to A&E!

Getting tested…

Alana was sent straight to the triage nurse as soon as we arrived in A&E. The nurse did another blood test with a glucometer to check her blood glucose levels and again the result read “High”. Before treatment could begin we had to await the results of a further blood test to confirm certain antibodies were present. Type 1 diabetes is an autoimmune disease – Alana’s immune system was attacking the insulin producing beta cells in her pancreas. Without insulin glucose cannot be absorbed by your cells, so the body starts to break down fat for energy. This process causes a build up of acids in the blood called ketones, which will lead to a dangerous and life-threatening condition called “diabetic ketoacidosis (DKA)” if left untreated. Because my husband is a type 1 himself, we were fully aware of this danger so the formal diagnosis couldn’t come quick enough – we knew she needed insulin and she needed it fast!

Our feelings on diagnosis…

HEARTBROKEN – although we knew in our hearts she had Type 1 diabetes as we were racing to A&E, the formal diagnosis hit us both like a tonne of bricks.

I also felt really AFRAID – how were we going to manage a 2 year old with this condition? How would we constantly prick her little fingers to do blood tests and give her daily insulin injections? What damage had already been done to her little body? Would we ever sleep again for fear she’d slip into a diabetic coma overnight?

LONELY – we realised quite quickly who our real friends were and that some people would just never understand the impact (and potential danger) of this disease no matter how much we tried to educate or explain. We received a lot of “At least she doesn’t have xyz”, or “Sure that’s fine, isn’t Andy a Type 1 so it’ll be no bother” and the classic “Sure she’s so young she’ll know no different”

Then there was the GUILT – had we done something to cause this?

 

The misconceptions about Type 1 Diabetes..

The main misconception is that Type 1 and Type 2  are the same thing. While they are both characterised by having higher than normal blood sugar levels, they are caused by different things and treated in different ways.

There is a lot of media attention on Type 2 diabetes and how lifestyle choices (bad diet and lack of exercise) can increase your chances of developing Type 2 diabetes. Then the old diabetes jokes that if you eat 36 Mars Bars or whatever you’ll get diabetes.  I feel there is such a stigma attached to the disease, that it is your own fault for getting it and easy to control or prevent!

People (including professionals) don’t always differentiate between the 2 different types of diabetes or give all the facts. Type 2 although often associated with excess body weight, can occur in people who are of a healthy weight – it can develop as a result of the effect of other medications or just purely because of your genetics! You could be extremely unhealthy and never get it too. I don’t know much about the treatment but I believe losing weight (if needed) can postpone the development of type 2 or put it into remission, then there are tablets you can take and finally you may end up on insulin therapy.

The cause of Type 1 diabetes is unknown. A person does need to be predisposed to the condition but for a lot of families it seems to strike from no-where.  No-one had type 1 diabetes in either of our families before my sister or my husband were diagnosed. Something needs to trigger the autoimmune response that causes the beta-cells in the pancreas to be attacked. With Alana is is presumed to have been triggered by a virus. Nothing we did caused this monster to take over our child’s body!

Another misconception is that Type 1 can be controlled or “cured” with a special diet. There is no cure for Type 1 diabetes. It can only be managed with injections of insulin. You could of course limit the amount of insulin needed by eating less carbohydrate containing food but a child needs carbohydrates for growth and development. Also there are so many factors that affect insulin needs, not just food – the time of day, exercise, illness, growth spurts, stress, excitement, the weather to name some; I already dread the effects puberty will have on her blood glucose levels!

The symptoms of type 1 appear quite suddenly and worsen quickly. Watch out for increased thirst, frequent urination, extreme hunger, weight loss, irritability and fatigue. We have heard so many stories from other parents who have experienced GPs assuming these symptoms are just a virus, and are lucky that their child is still with them today! Please ask for a blood glucose test if you feel your child shows any typical symptoms. Type 2 has similar symptoms but in contrast often develops slowly over years. Type 1 although usually diagnosed in childhood or the early teenage years can also present in adults!

And most importantly – yes Alana is allowed to eat sweets and cake! No food is off limit as long as we counter-act the amount of carbohydrate in it with insulin. Just like any other child a healthy diet with treats in moderation is encouraged.

The immediate (and continued) impact…

Alana could not be discharged from hospital until her ketone levels were safe and Andy and I were trained and capable of caring for her, so we pretty much moved into the hospital for a few days.

It was very difficult trying to cope with the emotional side whilst also learning how to basically keep her alive. Information overload is an understatement. Although Andy is also Type 1, it is very different managing a child as you cannot feel how she feels.  She was also only 2 and understandably did not take too kindly to finger pricks and injections.

It did help though that it was not a completely foreign disease to us and I knew some of the basics already. She also didn’t like sugary foods or drinks – again she was only 2 so just hadn’t been introduced to them! Initially we lived in fear of her blood sugars going low as the treatment is to eat or drink fast acting sugar immediately.

The biggest change for me was taking the decision to resign from my job to care for Alana (and of course her little brother Zach). I’d only started a new contract role, which was a 50 minute commute and full-time.  We were lucky that we could just about afford to do this with some cut-backs.

The first few weeks were intense as we worked closely with the hospital team to adjust her insulin levels to suit her individual requirements. This involved recording everything she ate and how many units of insulin we gave her, regular blood glucose tests throughout the night as well as during the day, hospital visits, and daily phone calls to the nurse team.

I do believe I lost a part of myself when I stopped working. It definitely affected my confidence (and still does!). I would find it very hard now though after spending the past 5 years off work as a full-time mum to go back to a full-time role and it would be hard to find someone I’d trust enough to manage Alana during all the school holidays etc. Because I spend so much time with her it is easier for me to spot trends and make background insulin adjustments for example.

We do not have to juggle work to attend hospital appointments or if either kid is ill and I love being able to attend all their school shows etc. There are pros and cons but there is no doubt that you are just as busy (in a different way) when you are a stay-at-home mum!

We are very conscious that Zach does not feel left out but the reality is that Alana’s condition requires extra attention. Type 1 diabetes is a 24/7 role – you do not get a break from it but it does eventually just become part of your daily routine.

A typical day…

As soon as Alana awakes her blood glucose level is checked. Her breakfast is weighed and the amount of carbohydrate calculated and this combined with what her blood glucose level is determines how much insulin she requires.

Alana now wears an insulin pump which we programme to do a lot of the calculations for us, so for any food she eats throughout the day we enter the amount of carbohydrate in it and the pump delivers the required dose of insulin.  We have a notebook system with her school, so for her snack and lunch I write out the carbohydrate value and her SNA delivers the insulin via Alana’s insulin pump.

Throughout the day she would do at least 4 blood glucose tests – It can be more depending on what activities are happening on that day and how her blood glucose levels are running on that day. She does not go anywhere without her glucometer and treatment for hypoglycemia (low blood glucose levels). If her blood sugars go low she needs fast acting sugar immediately. In contrast if her blood glucose goes too high she needs more insulin.  It’s all a balancing act! I never go to bed until I know she will be ok overnight (or if needed I will set an alarm to wake and check on her).

I cannot leave her with anyone who is not aware of her medical condition and knows what to do if she goes hypoglycemic (for me that is my main concern). They also need to be aware that she cannot eat carbohydrate containing food unless she is first given insulin, so for parties, camps, playdates etc I will always be there at food times to deliver insulin.

Her insulin pump is attached to her by a cannula. Every second day the insulin reservoir is changed and the cannula removed and a new set inserted. She also wears a sensor which continuously monitors her blood glucose level. This is removed and a new one inserted every 6 days or as needed. We also monitor trends in high or low blood glucose levels and amend background insulin ratios and calculations as needs be.

Our support network…

My parents were invaluable as they minded Zach whilst we were being trained and snuck into our house to leave a meal now and then or to do some laundry. My mum is one of the few people I’m comfortable to leave Alana with for an extended period of time, but even that requires refresher training and planning.  Also my mother-in-law actually got the first possible flight from Australia to come and help us as soon as she heard of the diagnosis – you can’t ask for more than that! She encouraged me to get out of the house for a walk or to meet friends for coffee and just took over some of the housework.

When we picked up our first prescription from our local pharmacist, they took my number and passed it onto another mum in the area who’s boy is also a Type 1 diabetic. That mum rang me straight away and it was just so wonderful to talk to another mum in the same situation and to hear that everything would be ok!

We attend Crumlin Children’s hospital and have access to their diabetes team at any time if we have a question or need advice. Every quarter we have a hospital review with the nurses and Consultant where Alana’s HBA1C (measures Alana’s average blood glucose concentration over the past 3 months) is checked as well as her weight and height and we discuss how things are going and any needs to change her insulin doses etc. We also have access to a psychologist through the hospital who helps children and adolescents cope with the emotional impact of their diabetes. It is great to know Alana will have that access if she needs it in the future.

There are a couple of private facebook support groups for parents where you can ask advice, share tips or just rant to people that understand. Diabetes Ireland (link here) also have a kids club and they arrange outings and opportunities for Type 1 children to get together. Crumlin hospital also arrange some outings.

 I feel Type 1 diabetes is an invisible disease..from the outside Alana looks like a healthy child, but a lot is going on in the background to keep her that way.

The challenges for Alana…

So far I don’t feel it has created any difficulties for Alana really. As a mum I was worried she’s be excluded from playdates and parties but thankfully this is not the case (or if it is in some cases she hasn’t noticed). I’d seen some worrying posts via the facebook support group regarding lack of support in primary schools or about SNAs just not realising the seriousness of the condition or refusing to do parts of the necessary treatment but thankfully her school have always been extremely supportive and each year she has had access to a fantastic SNA that she builds lovely relationships with and who is more than capable to care for her. She hasn’t mentioned ever been teased about her diabetes yet either.

I expect challenges to arise as the teenage years approach.  We will always be there to support her but she will have to independently manage her diabetes herself. It will be important for her to have a supportive group of friends who don’t make her feel conscious or embarrassed by her conditions and that understand that if she acts “off” it could be because her blood glucose levels are too high or too low and how to manage that. We will need to watch out for “diabulimia” where people deliberately restrict insulin and run their blood glucose levels too high in order to lose weight and “diabetes burnout” when you have had enough and grow tired of managing diabetes 24/7 so you just sort of give up for a while! Not looking after your diabetes properly can result in all sorts of health complications.  Again a balancing act of stepping back so she can learn to manage herself but yet keeping an eye on things to ensure she is looking after herself and not putting her health in danger.

An additional factor…

She was diagnosed with coeliac disease last November. For about a year and a half before the diagnosis she’d been complaining of bad stomach pains and feeling yucky and her health and energy were deteriorating. She started having really bad mood swings and saying she felt sad and frustrated and didn’t know why! We suspected coeliac disease but blood tests weren’t picking it up, so were pushing from all sorts of angles to find out what was going on with her or was it just what people refer to as “growing pains”. She had a biospy last November and that confirmed the coeliac disease.

It has definitely added another level of care, it is yet another thing we have to plan for and work around.  I never realised that for someone with coeliac disease that something as simple as touching a piece of bread and then the gluten-free food can cause a reaction (and in her case it does!).  There are so many foods that you would think are gluten free and indeed are but because of manufacturing processes there can be a risk of cross contamination with gluten, so certain brands are not deemed safe for a person with coeliac disease. The Coeliac Society publish a Food List which at the moment is our bible! It is all worth all the effort and label reading and researching foods though as she is back to her old bubbly, energetic self already!

For the first few weeks that she went gluten free we’d to monitor her diabetes more closely as her body adjusted to the gluten free diet. Her insulin requirements needed tweaking and still do as she is still recovering from the damage the disease has caused to her gut. I have heard that once her gut is healed fully that her Type 1 diabetes may become more predictable and her HBA1C results might improve. Her hospital results are usually pretty good anyway so an improvement would be an extra bonus. We are lucky in that she doesn’t react to gluten by vomiting like some people with coeliac disease do as that would be very difficult to manage with Type 1 diabetes – if you can’t keep food down you are at risk of serious hypoglycemia.

How Alana copes…

Alana has an incredible attitude – I thank Andy for his relentless optimism that she seems to have inherited! She is actually quite proud of having both Type 1 diabetes and coeliac disease and feels somewhat special and enjoys the attention. It helps that her dad and aunt both have Type 1 as she greatly admires both of them!

When she started school we were amazed and so proud of how responsible she was in telling her SNA or teacher if she wasn’t feeling quite right – she is very in touch with her feelings!

I do notice moments of worry creeping in from time to time but they pass. She might be scared to go on a playdate (this has thankfully passed) or lately she has expressed a fear that her insulin pump will break or that she’ll be stuck somewhere with no sugar and go hypoglycemic. All we can do is re-assure her. It’s hard to get the balance right between making her feel just like everyone else but ensuring she is aware of her medical condition and what to do if she doesn’t feel right.

We want her to live as normal a life as possible and to never let Type 1 diabetes hold her back and so far she seems to be doing pretty well at that

Advice for other parents…

As hard as it seems at first it will get better – just take it day by day.  A nurse told us that we would go through a grieving process similar to if we had actually lost our child and that did indeed happen – we lost our “healthy” Alana. Knowing that those feelings were a normal reaction really helped me get through that period of time.

As soon as you can reach out to other parents of children with Type 1 diabetes, whether through facebook support groups or the Diabetes Association. The hospital you attend may also have support groups.
Jenni, Andy, Alana and Zach

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