Families with a T1D child have to face several medical adversities for the T1D child, including common illnesses that children pick up from school, as well as other conditions due to their diabetes. We must clearly understand that any infection can cause the sugar to go up or down and it becomes very difficult to control the sugar and help the child hop back to health quickly. Fevers involve frequent finger pricking and insulin injections, a reason why it is important for our country to bring in needle free diabetes care comprising mainly of the latest gadgets for sugar monitoring and insulin infusion systems that can be managed digitally. It is important for the parents to be in touch with the child’s diabetic doctor and follow certain steps to help the child get better.

Fevers can cause blood sugar levels to rise because infection causes the body to fight the illness, and that requires more energy. The body goes into stress too which can elevate sugar levels. In conditions when the child has a loss of appetite, nausea, vomiting or diarrhea, which will result in poor food intake, it causes the sugar levels to go low. It is a tight rope walking for the parents to get the sick T1D child to manage consistent sugar levels. It would also mean that they should check ketone levels in the urine and report to the doctor, especially if the child has nausea and vomiting, which may also be indications of high levels of ketones due to continuous high sugar levels. During fevers it is important to prevent dehydration and so the child must be given frequent liquids that can be retained.

With Niky, we did have a few fever episodes as she was prone to coughs and colds. But hypoglycemia was something we were never prepared, because you never get to know when the child will go into hypoglycemic episodes. Hypoglycemia or low sugar levels happen in a T1D child when there is more insulin   in the body than is required. This happens if the child has not eaten properly to match the insulin injected, or has been involved in a sport, not accounting for the extra expenditure of energy or in the case of adolescent girls,   due to hormonal fluctuations during their periods. In people without diabetes, the body shuts off insulin production automatically if the sugar levels in the body go low and increases insulin production if you have high carb foods. However, since there is no insulin production in T1D children, which is given externally, it is important to balance the sugar levels, which is a constant and diligent exercise.

With Niky, management was a little too tedious for her because she had a habit of writing late into the night, even while at school. She used to feel hungry and eat snacks, which used to increase her sugar levels. If she took a shot to account for this, her sugar levels would go low because she usually got up late and would not have eaten. Also, her sugar levels would go dangerously low during early mornings when she was asleep , on the fourth day of her periods , which on a few occasions resulted in her getting up following nightmares and screaming continuously and loudly, then crashing down unconscious!  We did give her sugar immediately but we had to admit her in hospitals on a few such occasions to bring back the sugar balance. Her little sister Chinky was adept and fast in packing a bag for her and me while I tried to arrange with hospital admission during early mornings. Those were tense nights and as a family we used to be drained of all energy during such episodes.

While Niky was in the final year of school, we had to attend a wedding in Coonoor and we left her and Chinky with my mother for a couple of days.  After the wedding we returned at night and were planning to pick up the children next morning. But we received a call from our children saying that Niky had chronic stomach ache. During the middle of the night we drove to my mother’s home which was about 10 kms away. We found her in deep distress and decided to take her to a hospital which was near our home. The doctors diagnosed inflamed appendix and wanted to operate her immediately.  Niky underwent the operation early morning the next day and had to stay there for a few days.  Those were days of anxiety for the entire family. For me, as a mother, it was very difficult to see her child suffer in pain all the time because she was on drips, multiple injections and arm pricking for drawing blood frequently for checking her blood for all parameters. Following the surgery, it took some time for her to hop back to normal.

For parents, letting go off the T1D child is a huge source of tension. While she was in London, studying for her masters, I was always on the alert mode and kept checking on her through calls, FB messenger calls ( there was not WhatsApp then)  to ensure things were fine with her. Thankfully, while at London, she was mostly in the company of friends who took immediate care when she showed signs of disorientation or appeared to lose consciousness, which was rare. In one instance when one of her classmates took her to the local guardian’s house with hypoglycemia, they thought that she was drunk! That is how hypoglycemic T1Ds appear when their sugar goes low- totally disoriented and unstable.

In another instance, when she was working and living as a paying guest in Mumbai, I remember that I called her in the morning. It was a Sunday and it was 8 30 am and she did not pick up the call. I got panicky and called the house owner, Mrs. Merchant, who lived in the same flat where Niky had a room to herself. I explained the situation to her, but she did not understand. I told her to give her some tea with a lot of sugar in it, which she dutifully placed in Niky’s room. After a few more calls, I told her that she had to force feed her, which she did and finally Niky became conscious! These are times, when as a parent you wonder if it is wise to leave your T1D child to live on their own. While many such persons are indeed living alone in western countries, given our close family culture, as parents, sometimes, we are just not able to entrust the responsibility of complete independence to our T1D child. Despite these apprehensions, we did indeed send Niky to go to London to study and live on her own when she was just eighteen though our friends had strongly discouraged us.

In a few months, I went to meet Niky in Mumbai. I stayed with her for some days and we spent a memorable time together, visiting places in Mumbai and going for shopping during weekends. Around this time Mrs. Merchant was having her flat renovated and had asked Niky to move out for two months. This time she was staying with another working woman. I used to prepare food for her. I had always been in the habit of including a lot of carb free ingredients in the food I prepared for her so I made food with a lot of vegetables. Niky had not accounted for this reduction in carbs and took the usual insulin injections.  This led to a very severe hypoglycemic episode and she went into convulsions early in the morning. I was alone in the flat as her roommate had gone to meet her husband.  I had to run down from the third floor flat, which had a very narrow stairway and hailed a taxi. I also requested the taxi driver to come up to the flat and help me carry Niky to the taxi. She was hospitalized for a day and was kept in observation. That was very frightening for me and Niky also learned that whenever there is a change in her lifestyle, she had to monitor her sugar levels closely. To prevent life-threatening hypoglycemic episodes in T1D children, I strongly advocate bringing sensors and insulin pumps to our country and supply all medicines including insulin and medical devices free to T1 children in India.

By now Niky was beginning to miss our family badly and had also started feeling lonely.  We understood that it was time we started looking for a good companion for her with whom she could grow together.

Note:  In this series, I will be putting down facts and events that have happened to me as a matter of fact. Anything I say in these articles is based on my own understanding and experiences and not on any scientific research.  I would also like to mention here that I would be drawing upon  those experiences of my eventful life, which I believe are relevant to the discussion of the emergence of autoimmune conditions in my child, who we think is  different from many other children. I will be trying to make it as relevant to parents of T1D children as possible, but with a plea not to infer anything, compare or follow any of the practices we as a family followed. Simply because, every family is different, every child is different and so are circumstances. The takeaway should be confined to the existence of various possibilities, opportunities and a positive approach toward creating a fulfilling life for your child.