The role that family members play as care-givers can never be stressed enough. Parents of young children with Type 1 Diabetes face an uphill task. Monika Khatri discusses how her daughter Kashvi bravely handled being diagnosed with Type 1 Diabetes and Celiac disease. This courageous mother-daughter duo describes their journey and offers advice on how Diabetes can not only be mitigated but conquered.
Name: Kashvi Khatri
Age: 9 years
A little bit about my daughter
My name is Monika Paresh Khatri. We live in a joint family in Mumbai. My younger daughter Kashvi was diagnosed with Type 1 Diabetes along with celiac disease at the age of 6.
In January 2018, Kashvi had a urine infection and was losing weight. She had excessive hunger which surprised us. Normal medications such as application of candid powder yielded no results for her urine infection.
We went to our family physician who advised a urine test for Kashvi. Her reports showed the presence of ketones. Then, our doctor advised a blood test. The report showed that her blood sugar was 484 mg/dL. We visited many doctors and searched for alternate therapies but nothing seemed to work. We waited for a month before starting insulin therapy.
Impact of the diagnosis
Kashvi was diagnosed with Diabetes on 14 February 2018. We had not heard about Type 1 Diabetes before. We were not even able to accept it. For a few days, we were very emotional. How could we even see our little child pricking and taking insulin for her whole life! How painful would it be! We wished and hoped for some magical cure!
After a month or so, we came into the contact with Juvenile Diabetes Foundation (Mumbai) where we learned that it is not only us who had a child with Diabetes. The foundation helped us to overcome the fear and advised us to go to an Endocrinologist. We met Dr Ameya Joshi, who treated us patiently and positively and asked us to start with insulin.
We were not in the state of mind to tell Kashvi that she had Type 1 Diabetes. That she would have to live with Diabetes throughout her life. Her lifestyle was going to change forever. But we had to tell her. So, we said to her, “You are special and different than others!” We never realised how brave our little girl was. She accepted that she would have to take insulin every day much quicker than we did. We liked her way of acceptance. She was interested in using gadgets like glucometer! She was very excited to use colourful insulin pens and lancets.
Coping with the diagnosis
In the beginning, we felt as if life had become an insurmountable wall. We did not know what was going to happen next and how to react. We were very worried about the future. We had nightmares about hypoglycaemia and hyperglycaemia. These two words had suddenly assumed a new meaning.
As time passed by, we changed her food pattern. We educated ourselves about how to live a healthy lifestyle and gradually found positive changes. We were happy to know that the changes we had implemented resulted in our mode of living becoming a healthy one. Slowly and steadily we re-learnt along with Kashvi everything, from diet to exercise.
Managing Diabetes requires teamwork
All of us take care of Kashvi. We changed our lifestyle after she was diagnosed with Diabetes. We understood that to make Kashvi healthy, we need to implement healthy living as well. All our family members were ready to change their lifestyle to support Kashvi. Each member of our family cares for Kashvi. We have allotted tasks for everyone. My husband logs her blood sugar levels, insulin taken, physical activity and what food she has eaten, on his laptop. This is very helpful for pattern adjustment. I manage her meals by planning and preparing them. Kashvi and her sister enjoy their physical activities together.
We make it a point to inform the class teacher every year that Kashvi has Diabetes. We write a letter and send an email to inform the school about the same. The letter has complete information about Type 1 Diabetes and what steps need to be taken in case of an emergency.
The teacher makes it into notice and pins the letter on the soft board so that any subject teachers also know about the action to be taken. Glucometer, glucon-D, a glass and a spoon is always in her school bag. I give her some extra snacks for an emergency. She has another identity card as well where it is mentioned about the measures that have to be taken when she has a hypoglycaemic episode.
Discussing the diagnosis
We are very much comfortable in talking about our daughter’s Diabetes. We believe that we should talk about her Diabetes with our relatives, friends and the society so that we can spread some awareness about Type 1 Diabetes.
My daughter’s meal plan
I agree with the axiom “Don’t eat less, eat right.” Kashvi has celiac disease. She is on a gluten-free diet. I give some millet theplas, khakhra, poha or idli or as breakfast. She consumes a rich protein dish and 1 fruit for mid-snacks. She takes jawar roti, dal-rice, salads and sabji for lunch. She takes milk for her mid-evening snack along with a handful of dry fruits or nuts. Her dinner changes every day and is balanced with carbohydrates, proteins and fats. She does not take any bed-time snacks at night.
Kashvi uses an insulin pen. I do recommend the Genteel pricking device. We have experienced that it is beneficial for the kids as the prick only produces the necessary amount of blood which is sufficient for the strip. The other advantageous factor is that it is painless!
It is important to accept a diagnosis of Diabetes and to join with a Type 1 community which encourages and motivates. You realise you are not alone.
We have joined “Blue circle Diabetes Foundation”, their weekly sessions and workshops of educating and having fun online had made this difficult time easier. Their app is very helpful. The most advantageous part is “The Buddy Project”. These buddies are 13 people who themselves have Diabetes and are always available to guide and advise.
|5 key points on celiac disease
1. Celiac disease is an immune reaction to eating gluten, a protein found in wheat, barley and rye.
2. The intestinal damage often causes diarrhoea, fatigue, weight loss, bloating and anaemia, and can lead to serious complications. In children, malabsorption can affect growth and development, besides causing the symptoms seen in adults.
3. Symptoms of celiac disease in adults are diarrhoea, fatigue, weight loss, bloating and gas, abdominal pain, nausea and vomiting and constipation. Symptoms of celiac disease in children are nausea and vomiting, chronic diarrhoea, swollen belly, constipation, gas and pale, foul-smelling stools.
4. Blood tests looking for antibodies and human leukocyte antigens (HLA-DQ2 and HLA-DQ8) can be used to rule out celiac disease.
5. A strict, life-long gluten-free diet is the only way to manage celiac disease. Removing gluten from the diet will gradually reduce inflammation in the small intestine.