10-year-old boy thriving despite living with diabetes
Discovering the ailment
At one-and-a-half years, we discovered that Rukare had type 1 diabetes. “It all started with a call from home saying, David is lying down on the corridor floor and does not want anyone to touch him,” Jackie Namara Rukare shares, “this got us wondering, what had become of the playful jolly boy?” While he had previously exhibited some of the classic signs of diabetes such as excessive thirst, frequent urination, weight loss despite eating a lot, as well as lethargy, we had not taken it to be that grave nor suspected anything was wrong. Besides that, being in diapers, it was not easy to monitor how often he urinated.
Getting to the hospital, the usual tests were done but nothing was found amiss. Then the urine test was done and it was here that it was discovered that there was sugar in his urine as well as ketones; substances made when the body breaks down fat for energy.
“The urine test is recommended for all people with diabetes whenever symptoms are seen, such as nausea, vomiting, or abdominal pain. These symptoms often happen with high blood sugar and may mean you have diabetic ketocidosis, a potentially life-threatening condition,” Dr Donald Rukare mentions. With this, they went on to do a blood glucose test for certainty and it revealed that David was diabetic.
The test was done by Dr Stockley of The Surgery and then confirmed by Dr Martin Nsubuga, an endocrinologist at Nsambya Hospital.
However, they needed to be sure that they were not running with a misdiagnosis hence sought a second opinion from Dr Silver Bahendeka also working with Nsambya Hospital. “While he confirmed the prior diagnosis, he went ahead to counsel us.” Namara says with a look of gratitude, “He gave us hope that while you may have a child with diabetes, you are not alone,” Dr Bahendeka comforted us. He pointed out the need for us to be the support network that David needs to thrive. He also put us in touch with a family with a diabetic child and following a visit to them; we were further comforted,” Dr Rukare augments.
Dr Bahendeka also spelt out for the Rukare’s the importance of establishing a management and care regimen that includes journaling blood sugar levels, insulin administration, food intake, and activity(ies) done, not to mention documenting any illnesses.
While diabetes is a chronic condition that needs close attention, with some practical knowledge, you can help your child to learn to live with it.
Triggers
Dr Thereza Piloya-Were, a paediatric endocrinologist and lecturer at Makerere University also divulges the triggers of type-1 diabetes;
Environmental triggers include toxins, allergens.
Infections in the blood: Type-1 diabetes is an autoimmune condition; the child’s immune system mistakenly attacks healthy body tissue while trying to kill off infections. In this case, it attacks the cells in the pancreas making it unable to produce insulin. So, glucose cannot be moved out of the child’s bloodstream and into the cells. However, the reason behind the immune system attacking the pancreas is not yet known.
Genes: Type-1 diabetes is often inherited, so the autoimmune reaction may be genetic.
In a recent drive to identify children with diabetes, Dr Piloya says it was discovered there are more than 1,000 of them. However, this has been done on a small scale (a few health centres) and the statistics represent just a 1/3 of the total population. This drive; changing diabetes in children, also treats children with diabetes and trains health workers to help in this field.
Symptoms
She also adds that type-1 diabetes is harder to screen compared to type-2 diabetes. Dr Mutebi Edrisa, an endocrinologist at Wellington Heart and Diabetes Clinic goes on to advise on what parents needs to look out for;
Passing urine more often than usual, particularly at night.
Excessive appetite; without enough insulin to move sugar into your child’s cells, your child’s muscles and organs become energy-depleted triggering intense hunger.
Loss of weight despite the fact that children with diabetes have a big appetite hence eat a lot.
Recurrent infections due to lots of sugars in their bodies. These infections include candidiasis, tooth decay, gum disease.
General body weakness or constant tiredness and loss of muscle bulk.
Children with undiagnosed type-1 diabetes may suddenly seem moody or irritable.
If your child’s blood sugar is too high, fluid may be pulled from the lenses of your child’s eyes. This may affect your child’s ability to focus clearly.
Girls with type-1 diabetes may have a genital yeast infection, and babies can develop diaper rash caused by yeast.
Blood sugar tests are ideal at least once a year, more so when one has the above signs and symptoms. Unfortunately, due to the scarcity of diagnosis kits such as the glucose meters and stripes, Dr Piloya says, “tests are rarely or never done.”
“Symptoms among children are not different from those found among adults,” Dr Mutebi adds, “Though children may not easily tell that something is wrong with their system though the symptoms usually develop very quickly; over a few days.”
Diagnosis
Dr Mutebi advises that it is important to carry out blood sugar tests at birth to detect neonatal diabetes early in time.
Parents and guardians need to watch out for symptoms pointing to diabetes.
When the child is sick, among other tests done, a blood sugar test ought to be done.
Dr Piloya adds that a child living with diabetes needs to be looked after well so they can have a normal life
As the signs reduce, the amount of insulin administered should also reduce. While diagnosis of diabetes in children should not be difficult, Dr Tumwine says, “the main issue is the treatment which is expensive; mainly insulin because it is a lifetime treatment especially for type-1 diabetes.”
Presently
“We are teaching him to learn not to let diabetes limit him,” Namara says, “He has come to learn that as long as he takes care of himself, and all will be well. For example, before some sports activities, he tests himself to see if he can go on or first take a bite. Another thing he is still learning is to live life normally and beat odds, rather than blaming every small issue to his condition.”
They also encourage him to take his blood tests; three times daily or more when he is not well. “We have got here because we made him part of the process. That has helped to take the psychological edge off of the process. He has also come to understand what causes hypoglycemia (low sugar levels) and hyperglycemia (high sugar levels).
That way, the condition no longer becomes a problem as he is empowered and does whatever he pleases,” Namara says candidly, “He has got to learn to take charge of the prevailing situation and take care of himself.”
This experience has led to making several connections and this has birthed several initiatives such as Sugar CUBES (a support group for children and families with diabetes), and Kampala Diabetes Walk that happens annually every November. All this is aimed at creating awareness and empowering other parents having diabetic children that living with diabetes is manageable.
Lessons for the journey
The Rukares say they have and continue to journal everything about David’s health and it has helped them learn the things that trigger a rise in sugar levels, how much insulin to administer, how much food as well as the food types to give him.
“David continues to thrive and 10 years down the road, he is able to do everything any other child can do such as swimming, playing soccer as well as thrive in his education,” they add, “And we urge parents to annually take their children and family members, on a whole so that any disease can be detected early.”
Types of diabetes
Dr Daniel Tumwine, a paediatrician at Naalya Children’s Clinic shares some crucial information:
95 percent of diabetes is type-1; where the pancreas does not produce any insulin. This is the commonest type of diabetes among children.
5 percent is type-2 diabetes; where the pancreas does not produce enough insulin or the body’s cells do not react to insulin. This type-2 diabetes is mainly seen among adults.
Other forms of diabetes include neonatal diabetes. It occurs because these babies are born with a problem on their pancreas.
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