Anjana Tripathi was shocked to find her daughter diagnosed with type 1 diabetes at an early age of 14. Their world underwent a sea change trying to adjust to the needs of the condition. She shares here all the challenges that they as a family navigated. Anjana has even encapsulated her experiences in a rather well researched book.
Please tell us about your daughter’s condition. When was she diagnosed? How old was she?
My daughter deals on a daily basis with the chronic autoimmune disorder known as Type 1 Diabetes Mellitus (earlier known as Juvenile Diabetes). She was diagnosed in May 2014 when she was 15.
What were the early symptoms? Did you attend to the symptoms immediately? What was your reaction and how did you all accept the diagnosis?
She had just written her 10th board exams and was enjoying her summer break when we noticed that she had lost some weight. We wrongly presumed that it was due to all the outdoor sports she was spending time on. She was drinking quite a lot of water, which again all of us attributed to the hot summer days. Then after a few days, she started craving spicy food and complaining of constipation. After only about 15-20 days, she developed fever and shortness of breath, in addition to severe constipation. We consulted our paediatrician, who prescribed general medication and did not test for any other issue. The next day, after spending the whole night awake due to severe discomfort and breathlessness, she just collapsed right at the dining table while I was trying to make her eat something.
Know the symptoms of Type 1 Diabetes
We rushed to the nearest hospital where they checked her vitals and found very high blood sugar levels. An insulin drip was started, but she lapsed into diabetic coma and had to be ventilated. As this hospital was not equipped to deal with such critical cases, we frantically searched for an ICU bed in bigger hospitals and to our immense relief found one in a prominent hospital not too far away. But as she had been put on a ventilator, we needed a cardiac ICU. After 20 precious minutes, we found another hospital with one and shifted her. After spending 10 days in the hospital – 5 of them in the ICU, we finally brought her home. Our lives had changed forever.
As far as accepting the diagnosis is concerned, it was a big shock to us. I remember when I went home after two days, to rest, once she was stable, and powered up my laptop to find out about the condition, I broke down and wept for many minutes. ‘Why us’ overwhelmed us for many, many weeks. I remember one of the doctors in the ICU telling us the very next day that we would have to change her academic plans and should start looking for support groups. It was a very difficult period for us. Though we had no option but to accept the situation, it was heart breaking to think of our daughter dependent on insulin for life. For many weeks after getting discharged from the hospital, we just lived from one day to the next because there was a new set of challenges almost every day. So many ‘What-ifs’ were clouding our thoughts. We went through all stages of grief: denial, anger, guilt, depression, acceptance, and also hope. It was a very difficult period for the entire family, full of anxiety and trepidation.
Please describe your experience of managing the condition?
As I have shared in my book, one has to keep on learning about food and insulin dosage to manage type 1 diabetes better. Like most mothers, I spent time searching for low carb alternatives, healthier substitutes for regular dishes and snacks. To understand the effect of various food items on her blood glucose levels, I maintained a fairly detailed log of her BG (Blood Glucose) levels, food taken, time of day, insulin dose and activity. Scrutiny of this record helped in titrating her insulin dose. We also tested her sugar level quite frequently - at least 5-6 times every day for correction doses if required.
Managing type 1 diabetes well needs discipline - in eating, testing, dosing and moderate exercise. It is easier said than done. It is not easy to prick your child’s fingers for blood glucose testing several times a day, and even at 3am when she is half asleep. It is not easy to see your child denying herself the normal fun stuff like hanging out with friends for ice cream and pizza. Even if she attended social events, it was not a great time for her as she had to watch her food and also check and dose in front of others, an experience she did not really enjoy. There are so many everyday challenges which quickly become normal - like dealing with sudden hypos or when the glucose levels just refuse to go down despite correction doses, and the fear of DKA (Diabetic Keto Acidosis) due to high sugars. Every sneeze, every tummy ache and even mild fever caused anxiety as they could affect her glucose levels.
How did you manage your daughter’s school and college years?
Well, as mentioned in the book, when she was in school, and later in college, I ensured that all her friends and teachers knew about her condition and had all the contact numbers needed in case of emergency. In school, she carried multiple lunchboxes and emergency snacks to take care of her day and long commute to school as well as extra hours in case needed. We made sure that she tested during her breaks and treated or corrected accordingly. In school, she did all the normal things her friends did - went on school picnics, attended school functions. We maintained close communication and made sure that she had everything she needed for emergencies.
In college, she was in a city far away from home. We managed to equip her room (shared with another girl) with a tiny fridge for insulin and snacks like juice boxes, butter milk and fruit. To supplement and moderate carb rich meals, we got a fruit platter organised for her and later a healthy tiffin service. We registered her with a great local endocrinologist for consultation. We ensured that she had sufficient insulin, test strips and insulin pump spares with her always. Here, she was quite active and did reasonably well diabetes-wise despite little sleep and a lot of study-related stress. She had this mantra- whenever she felt that things were going out of control, she checked into emergency care of a reputed hospital. She did this, for instance, when she had bouts of indigestion resulting in continuous vomiting or when her sugar levels refused to budge and come down. Her hostel authorities and friends were very supportive and helped her with ambulance and admission and stayed with her till one of us reached the hospital (flying from Mumbai to this city). She had to travel also- to hometown and for various co-curricular activities. She managed pretty well I think, again following the basic principle of testing, treating and eating and always stocking backup of diabetes supplies. Naturally, there were days when things did not go her way despite all her efforts. But by this time all of us had accepted that there is only this much we can do.
Were there any major hiccups?
Except for three occasions when she was hospitalised for 1-2 days, things were quite smooth.
One of the issues we have heard is the effect of menstrual periods on blood sugar fluctuations. Were you told about it? Did she face issues of blood sugar fluctuations? How did you manage it? Any other surprises?
We had read about it. After her diagnosis, a few days later, her sugar levels started rising quite high and needed unusually larger doses of insulin. This went on for two days. Then she had her period and her sugars automatically became normal with her normal dose. Once we knew about this, we started increasing the basal dose and also the bolus dose.
There were other nasty surprises also. Weeks after her diagnosis, her hair started falling out in huge quantities. It was scary. But our doctor explained that this was common after DKA and prescribed biotin for her. After a couple of months, the hair loss gradually reduced. She also suffered from severe neuropathy in her feet for some weeks after the diagnosis. She was unable to wear shoes or walk. After specific medication to treat this and with her sugar levels stabilising, this issue got resolved thankfully.
Another nasty surprise was the high cost of insulin, test strips and other paraphernalia needed to manage type 1 diabetes.
Would you like to share some of the mistakes that you learnt from?
The biggest mistake I made was not consulting our doctor when we noted her weight loss. The trauma of DKA could have been avoided if she had been tested for her vitals earlier. Ignorance about type 1 diabetes was the reason for this.
I also feel that focussing too much on diabetes all the time, too much regimentation related to food and possibly inadvertently transferring my anxiety to her, has not been healthy for both of us.
Another mistake I feel which could have been avoided during those initial years was focussing too much on my daughter who had type 1 diabetes which perhaps made my elder one feel somewhat neglected or relegated to second place. A balance is essential and I realise this now.
How has your family supported your daughter/ you?
They have been of tremendous support for us. In fact, everyone in the family became conscious of food choices and ate the same food as her. I remember my elder daughter, who was studying abroad, getting a big bag of diabetes-friendly snacks/chocolates/wrist bands for her with her meagre pocket money whenever she came home during the holidays. Suddenly, all the family decisions were made keeping her condition in mind. In fact, I shifted for ten months to the same city as her college (though she stayed in hostel). My family supported this decision of mine completely even though my husband had to manage the house and everything else on his own. All our relatives also ensured that the meals they served whenever we visited them, were moderate and desserts were no-sugar ones.
What kind of community support has she/ you needed – from schools, from neighbours, friends?
From school/college authorities, she needed permission to check her blood sugar during class and eat if needed. And they supported this officially. Her school teachers were extremely supportive and helpful. In fact, her class teacher used to call me up and ask for extra tiffin on account of extra classes. She was allowed to keep a refrigerator in her room in hostel. Her hostel mess in-charge agreed to arrange a special supply of eggs and milk for her on a daily basis. Her hostel warden was the one admitting her to the hospital and staying with her all night till someone from the family got there. There was no exclusion or discrimination from the school/college. It was her choice whether to participate or not. We were very fortunate and blessed in this aspect. Our daughter was very active in sports during her college years and the college authorities supported her.
As far as her friends are concerned, no words can be enough express my gratitude. They always took care of her. They carried sweets in their pockets, brought her no-sugar dark chocolate as gifts, kept me updated with her whereabouts when she was too busy to take my calls, promptly passed on my messages when I called/texted them, even at odd hours. They even took turns for hospital duty when she was not well. They knew all the emergency numbers and the action needed to be taken in unusual situations and the signs to look out for. My daughter explained in great detail about her condition, hypos, hypers and DKA to them. I feel that we should share as much as possible about the condition with people around your child. It helps a lot.
What were some of the most annoying/ ridiculous/ surprising things that someone said
“Did she eat a lot of sweets?” was easily the most annoying thing I heard. Some relatives wondered out loud that it was surprising that our daughter developed this condition considering that there was no one on their side of the family with diabetes, even type 2. Many told us that they know people who were cured by a certain Guru or naturopath. Some refused to believe that insulin was needed forever and shared their firm belief that homeopathy has a cure. We were given many strange suggestions like ladyfinger juice as a treatment or dipping and rubbing her feet in bitter gourd pulp to lower blood sugar levels naturally. One senior colleague advised that she should stop consuming carbs and have only salads since his wife did this to manage her diabetes. No matter how many medical facts you tried to share about type 1 diabetes and auto immune disorders, there were many who simply dismissed this information.
How has Type 1 diabetes affected the choices – career, social choices your daughter needed to make?
Well, she chose to study law and later joined a corporate law firm. Diabetes did not really affect her choice of career. Hence, despite being cautioned by many about the long hours, she went ahead with her choice, conscious of her condition. It made her more alert and aware about her hours and the need to relax and exercise whenever there was free time. So far she has been managing her work with her condition fairly well. Initially, I was disturbed with all the warnings I was receiving. When I shared my apprehension with my online friends, I received huge support from everyone, even practising lawyers. I read the autobiography of Sonia Sotomayor, who was a Justice in the Supreme Court of the United States and had been managing type 1 diabetes since childhood.
As far as social choices are concerned, she avoids get-togethers and parties where alcohol forms an important part of the entertainment and where diabetes-friendly food options are likely to be limited. When picking a location for vacation, we are mindful about the infrastructure and facilities available there for any emergency requirement. And when we visit relatives or friends, we let them know about the food restrictions in advance. Spontaneous and unplanned social outings have been restricted to bare minimum as one should be prepared with medication and food to stay safe and healthy and comfortable.
For some children/ teens and their families,the diagnosis of type 1 diabetes can be really challenging psychologically. How did it affect all of you emotionally? Did you seek counselling?
It was very traumatic initially. Gradually, we accepted it as the new normal. There are times when I hate it, but then there is no option but to have a solution-oriented and positive approach. It raised questions about her career choices, her academic plans, marriage and of course longevity and quality of life. We had sleepless nights thinking about this diagnosis, somehow feeling so guilty. It was a very depressing time during initial few months. Constant questions from distant family and friends about the reasons (for which we had no answers) and their sympathy also affected us emotionally. We did not seek counselling. Maybe we should have, but our doctor did not suggest this.
Did your daughter face side effects from her medicines? And did you try alternative therapies?
There were no side effects. There was a slight weight gain, supposedly due to insulin.
Though we knew from all our reading up that there is no cure for type 1 diabetes and insulin is as essential as food, air and water for her, we did consult a homeopathy practitioner. He reiterated that insulin is unavoidable, but prescribed medication for maintaining good immune system and other benefits. She took these medicines for almost a year after which we stopped. I also used to give her glass of freshly prepared bitter gourd (karela) and gooseberry (amla) juice in the morning hoping for some benefit. I also gave her some Ayurvedic medicines for better sugar control. However, once she was on her own, she stopped all these supplementary medication/therapy.
Besides reading up on Type 1 diabetes and trying to get the right doctors, how difficult was it to find the support groups?
Initially, I did not know about any groups. Then, after a couple of months, I connected with Juvenile Diabetes Foundation, Mumbai through their website. Later, I joined some groups on Facebook and made some friends too. Now, I am connected with them on WhatsApp groups. I also attended many workshops conducted by these groups and organisations to learn more about how others were managing their condition.
How important have the support groups been in her life/ in your life?
They have been very helpful. For reassurance, information and guidance about situations like managing hostel life, travel, technical advice, locating endocrinologist in a new city or for advice on subjects like the right health insurance policy for people with type 1 diabetes (a challenge in India) or even routine matters like finding AAA battery (needed for pump) or the right adhesive for sensors - these groups were of tremendous support 24x7.
What made you write the book?
During the initial months, I was searching for books written for people living in India just for reassurance and some mental relief/guidance. I could not find any book. I ordered books written by people with type 1 diabetes living elsewhere and they helped hugely. Also, our doctor used to connect parents (especially mothers) with newly diagnosed children. Some mothers were so disturbed at the diagnosis and there were some who thought that insulin is a medicine and the condition will be cured in a few days. It was heart-breaking to confirm the doctor’s statement that this will be a lifelong condition and insulin will be forever. Then, there were people with good intentions who advised us to get in touch with a certain homeopath or Ayurveda practitioner or some religious person who had cured this condition. So, it occurred to me to compile my experience and whatever little we had learned over the few years and share with parents in a similar boat.
Since you mention statistics as well in your book, what kind of research did you have to do?
The statistics were mentioned to basically throw light on the extent of the challenge. I had been following certain journals, websites and platforms for keeping myself updated. Besides, I had read some books written by endocrinologists who also had been dealing with type 1 diabetes themselves.
Your book explains to what extent you have been able to make your daughter’s life as comfortable as possible. What, according to you, were the toughest areas you had to navigate?
Though we managed to make her life as comfortable and safe as possible, hostel food was an area which I found a challenge because of the carb-rich dishes included in the daily menu. Another very important challenge is the high prices of insulin, test strips, insulin pump accessories which together form a sizeable amount. While insulin and test strips are available in all cities, insulin pump distributors are located in only major cities and one has to stock a lot of spares. Also, unlike in developed countries, there are virtually no options as far as makes of pumps are concerned.
Your daughter has been very pro-active in managing her condition. Were there instances when things have been otherwise and how did you deal with it?
Fortunately, she has managed reasonably well on her own. However, there have been many instances related to food choices (especially on social outings) which continue even now, when she wanted to enjoy like her friends and indulge. Such indulgences need large dose of insulin and consequently some larger margin of error in calculation of dose which may lead to highs or severe lows too. When she was younger, I had a lot of control over her daily menu, which I no longer enjoy as she is now grown-up and has years of her own way of managing her condition independently. But, yes, most of our battles have been over food.
Finally, what is your main advice to parents who have to deal with juvenile diabetes?
It is very normal to feel anxious and nervous initially. It does seem very scary and overwhelming in the beginning. However, it is very important to remain positive, supportive and calm. There will be days when things will go out of control despite your best efforts. Learn to accept the situation and try to find solutions which suit you, your child as well as your budget. Try to ensure normal, fun-filled life for your child by extending support and working on alternative solutions as much as possible. Another important thing to do is to share about the condition with their school authorities, peer group and other social groups. This is needed for your mental comfort and safety of your child. It is also important to take care of yourself and pay attention to others in your family and not obsess all the time about type 1 diabetes.
Moyna Sen reviews the book Count, Does, Eat, Repeat: A Mom's Playbook for Type 1 Diabetes
As told to Moyna Sen
