JOURNEY IN THE UNKNOWN


Following my previous post, I bring to you a journey of twins, a girl and a boy, that suffered a number of challenges while babies and later exhibited signs of precocious puberty.

I got to learn about them through a friend.

At 7 months and those that followed were characterized with enormous dependency on their children. While it is expected for babies to depend on their parents, it starts to reduce by 6 months, they start exhibiting some dependency. However, that was not for these little ones whose size was also alarmingly small. They demanded a lot of care and support.

They were nights their parents would not sleep because they were afraid that something wrong would happen to the babies while they slept. After 3 long months, the doctors finally let them take the kids out of the bedroom and celebrations followed to mark this milestone. Before long, they were toddlers and the parents breathed a sigh of relief knowing that they had successfully passed through the critical stage.

However, that sigh was short lived as they were met with more challenges. At 2 years, the children started giving off a body odor as that exhibited by adolescents. The parents brushed it off thinking that they were not bathing them properly . However, it worsened by the time they made 4 years. It necessitated the use of a deodorant. Later on, the parents noticed that the little ones both had pubic hair. At 6 years, the girl was already developing breasts. 

It was at that point that they decided to take the matter to a medical practitioner. Their first visit was to a general practitioner but were later sent to Mulago hospital to see an endocrinologist. It is here that they got to understand that their babies had a condition called Precocious Puberty.

Explaining to them, he said that Precocious Puberty is the early development of puberty. With this condition, a child begins going through puberty  at a younger age than children normally do. He went on to say that the condition presents several physical, emotional, and psychological challenges to the child’s well being as well as the parenting skills seeing that the child is not emotionally ready for the stage they are going through. He also pointed out that some of the issues that this condition presents need to be managed at a hospital facility.

Some tests were carried out such as those to determine the Hormonal changes since they led to this early development, and blood tests to check the increased production of hormones typically associated with puberty. These included follicle-stimulating hormone (FSH), lutenizing hormone (LH), estrogen in girls, and testosterone in boys. X-rays were taken of the left hand and wrist to see whether the bone size matched the children’s age or there was a growth spurt indicative of precocious puberty, and to determine bone-age and degree of skeletal maturation.

If bone age was more than two standard deviations above the mean, it would have been considered advanced. After all the tests, they were waited for the results and it was a long one week. Unfortunately, all the tests came back positive, confirming the earlier suspected diagnosis.

It was undoubtedly a very difficult time for the parents but the doctors tried their best to counsel them for they needed to be strong for the children. Besides that, it was important for the kids to understand what was going on . Perhaps what would give them hope was that their case was not a hopeless one for there was treatment . The doctor explained that treatments to delay the onset of puberty are available, and they are typically well-tolerated. It was advisable for the parents to choose these treatments for their children for two reasons:

  1. Many children at this age are just not psychologically ready to go through puberty.
  2. growth stops after puberty is complete.  So for a young child, it could severely stunt their growth.

The medications used would stop the release of hormones that lead to premature development and it worked by stopping the pituitary gland from releasing gonadotropin, which acts to halt sexual development. And the treatment (Lupron) could be injected daily, monthly, or every three months. There is also an implant placed in the upper arm under the skin once a year. However, it wasn’t available in Uganda .

Armed with this information , the parents went home to make a decision as all these consultations came at a heavy cost . The tests alone cost a million and then the monthly or daily shots would cost them almost $25 per shot and these would be for 5 years until the children were old enough to undergo puberty. Besides that, the drugs were not readily available in Uganda at Mulago. That meant that the parents had to either go to a private clinic to buy them or to find someone who could purchase them from USA .

However, even the children faced their own challenges both socially and emotionally. They couldn’t socialize with their age mates because to them they were older children given the rapid growth spurt. The teachers did not understand this condition so they were not of help. Instead, they always told them that they were too old to be in their respective classes. As a result, they spent most of their time inside the house and would only socialize with other nephews and nieces as they did not judge them like the rest.

The decision was made and treatment started. That has seen the growth spurt slow down and the doctor say that they are improving. We hope that this will improve their life as children. We hope that they will be able achieve their dreams . 

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