The Diagnosis (Blog 2)

After weeks of the GP assuming Beren had the same rare type of diabetes as his older brother Viggo (diabetes insipidus*); Beren was thought to have type 1 diabetes after finally testing his urine it contained glucose. The GP had given me a letter to rush Beren through A & E for immediate attention. At the hospital we waited for the awful confirmation of Beren having type 1 diabetes but the next part was worse, it was unbearable. The hospital wanted blood from Beren. My ex-husband who had arrived at the hospital had to pin Beren down as the doctor and nurse struggled to find a vein. He was hysterical and fighting them off. It was heart breaking hearing him beg me for help over and over as they were stabbing Beren repeatedly. It went on forever until they had to give up only to try again an hour later.

I rarely cry and even more so in front of anyone but I couldn’t help it. I had to leave the room because even though my ex-husband and I are amicable (mostly) he was the last person I wanted to see me upset and go through all this with.

I later found out the reasons it was so difficult to get blood from Beren was he was only three years old, so dehydrated his veins had sunk and blood pressure dropped. Also his blood sugar was so high making his blood thick and flow slowly. They couldn’t get enough so we still had to go to a clinic at a later date.

Blood glucose levels are measured in millimoles per litre of blood (mmol/L). A normal blood sugar is between 4mmol-7mmol and at the time of diagnosis Beren was 41mmol which is 10 times what is should have been!

Children left undiagnosed would eventually go into DKA (diabetic ketoacidosis) coma and then die if untreated. It isn't uncommon for a child to be in a coma or near to that state (vomiting, stomach pain, shortness of breath, rapid heartbeat, drowsiness) before they are diagnosed. DKA happens when a severe lack of insulin means the body cannot use glucose for energy, and the body starts to break down other body tissue as an alternative energy source. Ketones are the by-product of this process. Ketones are poisonous chemicals which build up and will cause the body to become acidic.

As mentioned in my last blog the early symptoms (thirst, frequent urinating) were similar to his brothers and dads Diabetes Insipidus. It should’ve been caught by the doctors at that point but it wasn’t which is scary. To make things worse he had his brother’s medication as agreed with the GP.

His brother’s medication is for retaining water, so this was making it extremely difficult for Beren to flush out excess sugar making the likelihood of entering DKA happen sooner. The doctor at the hospital was horrified and this also affected the results for diagnosis. I still feel sick when I think about how dangerous this was.

The 1st thing I thought after diagnosis was I’d caused it giving Beren sweets. This is an annoyingly common misconception which I’d like to clear up:

• Type 1 diabetes occurs when the cells in your pancreas that make insulin are destroyed by your body's immune system. This is called an autoimmune reaction. It’s still not clear yet what triggers your body’s immune system to attack these cells.

• Type 2 diabetes is related to diet and being overweight.

I was bombarded with a lot of information I didn’t understand or take in at the time. We watched Beren get his first finger prick test and insulin shot (he was very brave). It looked so complicated and I remember thinking I can’t do this and I didn’t realise then that wasn’t even half of what we would need to do!

Beren had to stay in hospital, I wanted him to come home with me so badly but I could not stay at the hospital so I left him with his dad and went home to his brother. The guilt was overwhelming.

I went back to the hospital first thing the next morning. I can’t even remember most of what we learned. I spoke to a nutritionist as Beren was starting on mixed insulin. Mixed insulin is a slow release long lasting combined with fast acting insulin to cover carbohydrates. A healthy pancreas trickles in insulin constantly and then the right amount to cover the carbs we eat.

I was told he was to have two injections a day and a minimum of four finger prick blood tests a day. Set meal and snack times and we were to stick to a certain amount of carbs. Over the next four days we had visits from the nurse giving us more information each day. I realise they had done this so we weren’t overwhelmed with all the complex information. Luckily on the morning we learnt more about hypo’s (hypoglycaemic attacks) and how to treat them he had one that day with his dad whilst I was in work (my first day back).

A diabetic can’t survive without insulin but it has the power to take life away. It has even been used to commit suicide.

A hypoglycaemic attack often shortened to hypo is triggered when blood sugar levels fall under 4 mmol/L. Too much insulin, too little food and doing exercise are some of the things that can cause a hypo. To treat a hypo you need 15 grams of fast acting carbs such as jelly babies or glucose tablets. You would then need to wait 15 minutes after the initial hypo treatment to check whether the sugar levels have recovered to normal levels. If levels are still too low, below 5.6 mmol/l you have to repeat the hypo treatment. If that fails emergency medical attention would be needed. In children there are usually no warning signs so you wouldn’t know they were ‘low’ without testing their blood.

Hypo’s happen a few times or more a week. Food traces on the fingers can be an issue even after washing the reading can still be wrong. If unable to safely eat or drink sugars as they are drowsy or disorientated we have glucose gel that can be rubbed inside Beren’s cheek, but this can’t be given if they aren’t able to safely swallow without the risk of choking.

We were told to phone 999 in this situation. Panicked I started to read information about diabetes online. I read about a glucagon injection kit which is a large needle used to fill with glucose at the time of the emergency. If the diabetic is unconscious or you are unable to get glucose in them orally, this is then injected into a muscle. Ringing my nurse at the time she said we didn't need one as it made the children ill afterwards. I was told we were better waiting for an ambulance as they had a better type of injection to give!

We eventually sold our house so we had to move and change hospitals. I immediately was given a prescription for the emergency glucagon injection kit. We may not have time to wait for an ambulance and every diabetic needs one! It saves lives!

*Diabetes Insipidus is a missing hormone affecting water retention. Viggo Beren's older brother and father take medicine that helps them keep hydrated. It can become dangerous for example Viggo has been hospitalised becoming severely hydrated caused by a simple stomach bug.