Back to Parents' Voices Susan Jones

I don't imagine that getting diagnosed a diabetic would be much different in Australia. Nicholas was 4 and a bit years old and his baby sister (Cherie) was around 18 months old. We were visiting Nicholas's Grandmother (my husband's mother), her name is Mollie, in a small Hospital in the Blue Mountains, near Sydney. She was very sick (she has had diabeties since she was nine years old) and had to stay there for two months.

It was in the middle of Summer (January) and we were all drinking lots so I didn't notice Nicholas drinking more than usual. He had been toilet trained for some months, so when he was at home I didn't notice him going to the toilet since he went by himself. It was when we went to visit my mother-in-law in the hospital that I started to notice that he was always wanting to go to the toilet. We visited once or twice a week. At first he would go every 45 minutes, usually soon after we got there. I thought it was just a little game--you know--a toilet fascination. Then it became every half hour. I would try to tell Nicholas that he did not need to go to the toilet so often but he was so insistent so I would let him go. By now he knew where to go so I didn't go with him. My mother-in-law said that it might be possible that my children could get diabeties and to watch out for the symptoms. I brushed her implication off by saying that Nicholas was just bored or liked to go and look at the hospital toilet or walk up the hallway by himself, never really believing the it would happen to my children.

When the frequency of these visits to the toilet became every twenty minutes we really became concerned. My mother-in-law suggested that I take him to the Doctor, "It might be just a bladder problem--requiring antibiotics." So off we went. Nicholas went to the toilet as soon as we got there. The Doctor asked for a urine sample--Nicholas had no trouble providing one only ten minutes later! Well of course it showed that Nicholas had a high amount of glucose in his urine. Yes he could have Diabeties, in which case he should go straight to hospital, do not pass go! I was shocked. Was this really happening? But I still had no idea of the implication of the diagnosis! And how it would change our lives. I was a bit annoyed with the doctor because I wasn't prepared to go to the hospital. I wanted to go home and get some clothes for Nicholas and a bottle for my baby. The doctor told me, "No, I had to go straight to the hospital." After some minutes arguing, the doctor convinced me that the Hospital would be able to fix up everything.

It seemed to take them hours to get all the forms filled out as Nicholas had never been to that hospital before. They told me I had better ring my husband at work and tell him what was happening. They took some blood from Nicholas's arm, much to his dislike. He had to be held down, and I got so upset that they sent me out of the room. I could still hear his piercing screams. A totally awful time. They told me the blood test would take a while--would we please wait in the waiting room. After much heated discussion a nurse got me some milk in a bottle for Nicholas's baby sister, Cherie.

Of course, the result is history. Nicholas's blood sugars were very high. By the method we use in Australia it was 60 mml, or 1,080 mg/dL. They gave him his first injection that night. Every time he had to do his injection--twice a day--they had to hold him down and he cried and screamed so loud. It was excruciating to watch--I cried too. Over the next two weeks I had to see all the professionals, the educator, the dietition, the doctor. I was inundated with stuff to read. Then they would quiz you on it later. What pressure! I didn't want to have to give him his injections but they told me that if I didn't he wouldn't be able to go home. The hardest thing I've ever had to do is give him an injection. They even had to show me how to hold him so he couldn't move. I had to give him his injections in the bottom.

We struggled for about twelve months with the injections until finally Nicholas resigned himself to the fact that things were going to be the same for a very long time. After that he didn't fight me so much while we did his injections. When he was six, my mother in law, Mollie, asked him to do her injection for her in her tummy! I was so shocked that he did it and then to my surprise she suggested that he do his own injections! And he DID!!! I've never had to do his injections since!!! What a difference that made to me! I no longer felt so awful--forcing him to lie down and holding on to him, trying to keep him still while I did this horrible thing to him. It was a great weight off my shoulders and I am forever greatfull to Mollie.

Things went O.K. for a while. He started school. I was always up there at the school. They should have put a bed in there so I could have slept there!! I was even on the canteen committee trying to get a healthy canteen and some diet drinks and more fruit and dried fruit snacks available. It was fraught with problems and there was some opposition. In the end the canteen committee was abandoned and the canteen became a school run one. So I had no say in the end. I had many problems with the teachers. They expected Nicholas to remember everything--to take his blood glucose meter and his biscuits with him when ever he did sport, to know when to eat biscuits, to eat all his lunch and snacks, to recognise when he was feeling low. Nicholas had a lot of trouble with the last thing.

The day before he started his third year at school he was watching T.V. It was morning tea time but I never got to give it to him. He fell off the lounge and went into unconsiousness with a seizure. It was horrible. The neighbour's children witnessed it and came and told me. When I got there he was still having the seizure and there was froth coming out of his mouth. I panicked--not really knowing what to do--shaking, I called the ambulance. Then I did his blood sugar level. It was 2.3 mml (41 mg/dL). For those of you overseas we use a different measure--normal being between 4 and 10. I wonder if the meter was accurate. We recently bought a new meter and conducted numerous simultanous tests to see the difference and discovered that the old meter was reading about 4 mml higher than the new one. It might pay to get your meter checked by the factory occasionally, if that's possible. We did the usual control solution tests regularly--they were always within range. Anyhow I suspect that his blood sugar might have been lower.

When the ambulance came a few minutes later they said they had to take him to hospital for observation. By that stage he had come round but was very disoriented and upset. Up at the hospital he seemed to recover slowly until he suddenly started vomiting. They put him on a drip eventually as he was starting to dehydrate. He recovered the next day and was able to go home. He didn't like the hospital after that because they had taken his B.S.L. every hour and given him more injections of rapid acting insulin, and taken blood out of his arm for pathology tests several times. The food tasted awful and they nearly always sent too little food, or the wrong sort--not diabetic. I had to be there for every meal or snack to make sure he got the right amount of carbohydrate. The nurses did not have any idea about how to count carbohydrates. This was at our local hospital two years ago and they are still in the dark. I was still breast feeding my baby, Rebecca, who was three months old and the hospital wouldn't let me stay overnight with my baby so I was thankful when they let Nicholas come home the next day.

After that dreadful experience at the hospital, I didn't want to go through that again. Neither did Nicholas. We tried to give him all sorts of things to stop him vomiting so he didn't have to go to hospital, oral syrups to settle the tummy, pain killers, motion sickness pills and injections to stop the vomiting by relaxing the stomach muscles, but to no avail.

It was the first of many seizures. Eighteen to date!! When they first started happening they were fairly infrequent, but over the next two years they became more and more often. For a while we tried to keep him out of hospital. I became a little more proficient at giving the Glucagon needle. Every time he went too low and I was unable to recognise any symptoms, he would have a seizure, followed by vomiting. Not just one vomit but several times--every three-quarters of an hour--you could almost set the clock. He had these events (as the doctor said to call them) at all times of the day or night. Sometimes I could pinpoint why he had them, i.e., related to exercise or a missed snack, sometimes it remained a mystery. We would do about eight to ten blood glucose tests every day so I could be sure he wasn't going low. The doctor sent him for a brain scan, but it was inconclusive as his couldn't go to sleep (2pm). The doctor didn't think it was necessary to do further tests as it only happened when he went low. So he told me to make a big effort to stop his blood glucose levels going too low. That's easier said than done.

I found it extremely stressful trying to decide if I should stop him exerciseing to give him a few biscuits or not. I found that when I did he would stop exercising anyway, then his numbers would go too high--up into the twentys (remember normal is between 4 and 10). I was very frustrated and sometimes I got angry with him, especially when he had done some exercise and I didn't know that he'd been doing it. It's very hard even for Nicholas to know when he's going to do a lot of exercise.

I noticed that he had a delayed reaction to the exercise many hours later while he was asleep, as well as the immediate effect. I found it hard to judge how much extra food he would require at supper (bed time). As a result, I came to wake up many times during the night worrying about what his blood sugar levels were. So I would have to get up and do his BSL so I could go back to sleep. I caught him quite a few times dangerously low. A few times I was too late. Once he had a seizure just seconds after I had done his BSL. I felt SO guilty. Why didn't I get up a bit earlier? If only I had dragged myself out of bed half an hour before when I had first woken. I was going out of my mind.

I tried to talk to other parents of diabetic children to see if I could find one who had similar problems but all of their children were able to tell when they were not feeling well and they had never had any unconsious episodes, let alone seizures. I really felt so alone. I asked the doctors how common was this sort of thing, and they always said, "It's not uncommon." But they would never elaborate even when I pushed for a further explaination.

During the last year or so we always ended up in hospital because the vomiting wouldn't stop. One time he vomited so much--over 24 hours. By the time we took him to the doctor he was getting dehydrated and then by the time they saw him at the hospital two hours later he was VERY dehydrated. They couldn't find a vein to put a drip in as they had all collapsed in his hands. It took another doctor quite some time to get one on the inside of his elbow. The nurses and the paediatrition told me NEVER leave it so long again. Blood tests taken when he was admitted that time, revealed that his blood had gone very acidic. I was told this is very dangerous. So after that, every time Nicholas had low BSL's, seizures and vomiting, we only waited four hours before taking him to hospital. This meant that we started to frequent the hospital more and more.

When it started happening every two weeks, I even started setting the alarm, much to my husbands annoyance (he even started waking up worring about Nicholas too). I think I was near a nervous breakdown.

I decided to change doctors. I went to the top! Dr Kidson is very well known in the diabetic world in Sydney. I thought if anybody knows anything, HE would. It meant travelling an hour to get to his rooms and an hour back again.

For three weeks I rang this doctor daily with Nicholas's BSL's. We saw him twice at his rooms duing this time. But still Nicholas had two seizures. On hearing of this second seizure and seeing how upset I was, the registrar at the hospital rang Dr Kidson and discussed our case in depth. As a result Nicholas was transferred to Prince of Wales Hospital at Randwick (opposite Dr Kidson's rooms). During the first week he was there, the hospital staff could see that his BSL's were very erratic despite their best efforts. The care at this larger hospital was MUCH better. I was so relieved to know that it wasn't just me doing the wrong thing and I guess the doctors needed to know that too as they didn't know me very well.

After that they changed everything. He was put onto four injections a day instead of three. They changed the brand and the type of insulin. He is now on three injections of rapid acting insulin at the main meal times and an injection of Isotard--a long acting insulin--before bed (nine thirty). They even changed his diet a bit. Dr Kidson advised to give milk and a piece of bread spread with cottage cheese for supper, as the protein helps to make the carbohydrate last longer. Well! You wouldn't think he's the same boy. I can proudly say that his diabeties is quite well managed now thanks to Dr Kidson!


I pray that this will be the case. Surely it couldn't get any worse. Praise be to God for giving me the strength to get through it.

Susan Jones
e-mail jones.1[@]

P.S. Would love to hear from anybody!

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