Diabetes, Health, Parenting, T1D, Uncategorized

4 Mothers, 4 Questions (Part 3)

4 Mothers, 4 Questions (Part 3)

hands-63743_1920Summer 2017 is nearing an end and it is time to put pen to paper once more. Today we meet Eline Baumgart-van Buuren, mother of 5, (yes, FIVE :-)) children. The youngest, two beautiful twin daughters, both have coeliac disease and one of them is Diabetic Type 1. Eline shares her story with us today. [Nederlandse versie onderaan]

What is your child’s diagnosis story?

My daughter is an identical twin. She is a happy and exuberant girl. At birth, she was the larger, stronger of the two. Everything went perfectly well until her second year when her appetite reduced tremendously. At that time she also suffered from two ear infections, for which antibiotics were prescribed.

In the mornings, she would eat well and lunch was usually OK too, but by the evening dinner, she had lost all interest. Trying to encourage her with something I knew she liked to eat also didn’t work, it went untouched. Then she began to drink a lot more and to pee so much it overflowed the diaper. She would often ask for more fluids during the night too. She became listless and lacked energy. Despite describing all these symptoms to our health carer, while at the same time watching her weight and growth curve become very slow, we were not given any advice.

One Friday night, borne from our own intuition, we decided to visit the out of hours doctor. They listened to our story and drew blood from our daughter. The results showed an excessive level of glucose and we were referred straight to hospital with a diagnosis of Diabetes Type 1. When our twin daughters turned four, they were also both diagnosed with Coeliac disease.

How did you feel when you heard the diagnosis ‘Type 1 Diabetes’?

When the doctor told me that my daughter had Diabetes Type 1, I didn’t really know anything about it. As my daughter fell asleep hooked up to an intravenous line, I scoured the internet for more information about her diagnosis.

The first thing I read was that there is no cure – that wasn’t a great moment for me: a self-proclaimed control-freak. When I realized that I couldn’t protect my child from this chronic disease I found it very difficult to accept. But even then, I had no idea the impact this disease would have on our lifestyle and activities.

We were quickly buried deep in a mountain of instructions and advice and our entire family life was thrown upside down. There really isn’t any time to assess and deal with your own personal emotions at this time, you just have to focus on being there for your child. That all comes later.

In your opinion, how could improvements be made to the diagnosis process in the future?

In retrospect, I believe the health carer should and could have been more alert to all the signals and symptoms that led us to the diagnosis. If there were any doubts, the health carer should have referred us because they are dealing with very small infants. I also think that taking a quick blood glucose or urine test when these symptoms are described should be standard in health care centers and GP surgeries. I did go back to the health care center after my daughter’s diagnosis, sadly, I was met with a rather lukewarm response. But simple, non-invasive tests like these can not only save time, they can save lives.

I am not sure about the impact of awareness campaigns but I do believe that tackling the issue at the point of contact with the health care system makes sense to ensure faster diagnosis and improved intervention.

If you could share one piece of advice to other (non-T1D) parents around the world, what would it be?

I am a firm believer in parental instinct. A parent knows their own child! If your child shows “abnormal” behavior; is constantly tired; has a symptom that lasts much longer than a “childhood phase”; or even if you suspect something is wrong but you don’t quite know how to put your finger on it then go to your GP straight away. Read up about your concerns and don’t let the symptoms continue too long before seeking professional advice. Often the symptoms will be nothing or very quickly and easily resolved. Too many of us are afraid to ‘waste our GP’s time’ – but I say it is better to waste 5 minutes then discover the diagnosis when your child is in a coma. Be smart and follow your feelings, we were just in time.

Any final words?

My husband and I, we are people who like to read and discover things, but not everyone is. I think it would be really helpful if the Diabetes Nurses were aware of and able to point parents in the direction of support groups, either on Facebook or in the local area. A diagnosis like this can easily become overwhelming for many parents and this is where the Diabetes Nurse can quickly step in and support these parents by connecting them to others in the same situation. At the end of the day, the child’s health is the central point here but building a strong support network around the child is critical and it starts with the parents.

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En nu, in het Nederlands 🙂

What is your child’s diagnosis story?

Mijn dochter is er eentje van een eeneiige tweeling. Ze is een vrolijke en uitbundige meid. Ze was bij de geboorte de vollere, sterkere baby. Alles ging prima maar in haar tweede levensjaar nam haar eetlust sterk af. Ze kreeg in die tijd ook tweemaal achter elkaar een oorontsteking waarvoor zij een antibioticakuur kreeg.

Ze at smorgens goed, bij de lunch ook wel oke, maar liet het avondeten standaard staan, ook al kreeg ze iets lekkers voorgeschoteld. Ze begon meer te drinken en te plassen totdat ze haar luiers steeds voller plastte en ze snachts ook om drinken ging vragen. Ze kon niet lang achter elkaar lopen of zich inspannen. Ondanks dat we deze klachten aangaven bij ons bezoek aan het consultatiebureau en ze daar in de groeicurve een flinke daling in haar gewicht zagen, kregen we geen advies.

Op een vrijdagavond zijn we vanwege het gevoel dat er echt iets mis was bij de dokterspost beland. Daar werd haar bloed geprikt en konden we in het ziekenhuis blijven vanwege een veel te hoge bloedglucose.

(vanaf haar vierde jaar werd ook de diagnose coeliakie bij haar gesteld)

How did you feel when you heard the diagnosis ‘Type 1 Diabetes’?

Toen de arts me vertelde dat mijn dochter diabetes type 1 had wist ik nog vrijwel niets over deze ziekte. Terwijl mijn dochter aan het infuus in slaap was gevallen, zocht ik de diagnose op op internet.

Het eerste wat ik las was dat het nooit meer over zou gaan, daar schrok ik flink van!
Zelf ben ik een controlfreak en het besef dat je je kind niet kunt behoeden voor deze levenslange ziekte is dan niet te accepteren. Toen wist ik nog niet wat voor leefstijl en handelingen deze ziekte met zich mee zou brengen….

We kwamen in de molen van instructies terecht en ons (gezins)leven stond op zijn kop. Er is nauwelijks tijd/ruimte om met je emoties bezig te zijn, je moet er zijn voor je kind.

In your opinion, how could improvements be made to the diagnosis process in the future?

Achteraf gezien ben ik van mening dat er scherper had moeten worden gehandeld vanuit het consultatiebureau met zoveel signalen en bij twijfel moet een kind doorverwezen worden, omdat het gevaarlijk is om een beslissing op basis van signalen alleen bij de ouders te laten liggen. Ook denk ik dat het meten van de bloedglucose bij deze signalen een standaard handeling zou moeten zijn. Ik heb na de diagnose nog contact gezocht met het consultatiebureau en ze geinformeerd, er werd helaas wat lauw gereageerd.

Ook bij de huisarts zal het meten van de bloedglucose bij signalen een standaard handeling moeten zijn.

Het lijkt me niet zinvol om door middel van campagnes en dergelijke bewustzijn over de ziekte te creeeren bij de gehele bevolking, maar zeker wel binnen de gezondheidszorg, zodat er veel eerder correct kan worden gehandeld en ingegrepen!

If you could share one piece of advice to other (non T1D) parents around the world, what would it be?

Ik geloof in een ouderinstinct. Een ouder kent zijn of haar kind!

Indien je kind “afwijkend” gedrag vertoont, constant moe is, iets heeft wat veel langer aanhoudt dan een “fase” periode, ongelukkig is enz of jij vermoed als ouder dat er iets niet klopt, ga ermee naar de huisarts en lees erover. Laat je niet een tweede keer wegsturen als de signalen aanhouden.

Vaak is het oplosbaar of gaat het weer over. Wij zijn nuchter, hebben alles een tijdje aangekeken en waren in ons geval ook net op tijd. Volg je gevoel!

Any final words?

Wij zijn mensen die dingen gaan lezen, uitzoeken, achterhalen, echter is niet iedereen daar toe in staat.

Ik denk dat het heel zinvol zou zijn als ouders bij de diabetesverpleegkundige ook worden gewezen op het bestaan van groepen waarin veel informatie wordt gedeeld zoals facebookgroepen voor diabetes en groepen over voeding.

Als de diabetesverpleegkundige merkt dat de betreffende ouders hulp kunnen gebruiken omdat de materie ze boven de pet stijgt, dan moet daar doeltreffend op worden gereageerd in het belang van het kind. Immers ligt de gezondheid van het kind op de lange termijn eerst in de handen van de ouders.

Diabetes, Education, Health, Parenting, T1D

4 Mothers, 4 Questions (Part 2)

4 Mothers, 4 Questions (Part 2)

Continuing this 4 part series, today we meet Jenni Cipriani, a full-time mother (a.k.a. Superhero Jack of all Trades) from Thornbury, near Bristol in the UK. She shares the story of when her son, Bradley, was diagnosed with Diabetes mellitus Type 1 at just 14 months old and what we can do to improve the current diagnosis process.

Jenni&Bradley
Jenni and Bradley

What is your child’s diagnosis story?

It was 18th September 2010, when Bradley was diagnosed with Type 1 Diabetes. He was just 14 months old. Leading up to that day, I had noticed that Bradley was losing weight, sleeping in longer in the mornings and suddenly napping during the day for hours (when he wouldn’t normally nap at all). He was raiding the cupboards for food straight after I had fed him but he wasn’t gaining any weight at all, he was also very constipated. Looking back, I know now that the most obvious sign was how much he was drinking, he would gulp down beakers and beakers of water. In the mornings he would wake up absolutely drenched in his own urine; his nappy full to the brim and his pyjamas soaking wet. At the time, it was very easy to find an explanation for everything: he’s tired because he has just learnt to walk, he’s hungry and thirsty because he is more active and that must be why he is losing weight, his nappies are wet through because of his increased thirst etc.

But on the morning of 18th September 2010, Bradley’s health deteriorated. His breathing had become very laboured, he was drifting in and out of consciousness and he had a sweet smell to his breath. My Dad and I couldn’t wait any longer for the call back from our GP so we took Bradley directly to our local A&E department at the hospital. There we explained his symptoms and sat down to wait, but within 5 minutes someone came to get us. Bradley was ushered into a room where they tested his blood glucose levels straight away. The results came back: 29 mmol/L (a non-diabetic person is between 4.0 to 6.0 mmol/L), and that was when they told us he was a Type 1 Diabetic. Subsequent testing discovered that his ketone level test was around 7 mmol/L, whereas a normal person will be under 0.6 mmol/L (above 3.0 mmol/L is ‘a dangerous level of ketones which will require immediate medical care’). At which point we were rushed to Bristol Children’s Hospital in an ambulance where we stayed for 4 nights.

Bradley_diagnosis (1) copy

How did you feel when you heard the diagnosis ‘type 1 diabetes’?

I am embarrassed to say that I was relieved upon hearing he had T1D. Not because it was a good thing, but because I had no idea what it entailed and I was just relieved I had an answer as to why he was so poorly. I remember a couple of children (back when I was in school myself) who were T1D but all I really saw was that they carried extra food like biscuits. I also knew they had injections but to what extent, I was clueless. Once we got to Bristol Children’s Hospital and the doctors and nurses started talking to me in detail about Diabetes mellitus Type 1 (T1D) it was then that it really hit home, and it hit me very hard. I could not believe that this was going to be my son’s life from now on. I struggled to accept he would need 4 or more injections a day, bi-hourly blood glucose testing or an emergency box kit in our fridge door containing glucagon just in case he fell unconscious from a hypo. All I wanted to do was wake up from this nightmare, but that couldn’t happen, this was our new reality, this was his life now. Instead, I put my fears aside and tried to take it all in; I listened in great detail to everything the doctors and the diabetes specialist nurses told me. When they asked if I wanted to try and do the first injection I said ‘yes’ and just got on with it for the sake of my son, I knew I needed to be strong for him.

In your opinion, how could improvements be made to the diagnosis process in future?

Whilst some parents end up visiting a GP before the symptoms deteriorate, many don’t. This is largely because the symptoms come and go over a fairly long period of time, and they don’t all present themselves together until right at the critical point. So, like many other parents, I did not have any contact with a GP about Bradley or my concerns until the day we ended up in A&E. That means the actual diagnosis process for us was very quick. That said, the A&E nurse knew to take a blood glucose test immediately and I do think that more routine tests in GP’s when children present with at least one of the ‘4 T Symptoms’ (tired, toilet, thirst and thinner) would be an ideal way to stop misdiagnosis and catch it earlier and thus not once the person is in Diabetic Ketoacidosis (DKA).

Bradley
Bradley (2017)

If you could share one piece of advice to other parents around the world, what would it be?

Make yourself aware of the symptoms of TD1, the 4 T’s (tired, toilet, thirst and thinner). If I had known these then I would have taken Bradley to the doctors a lot sooner. He had slowly been losing weight over a period of about 2 months and he would not have been as poorly as he was at diagnosis. It was heart breaking for me to see him so ill and if I could have prevented that by knowing the symptoms then I would have. Nowadays, it’s something that I try and make people aware of in my network.

#weneedacure