Mims' Musings

Posts Tagged ‘early puberty

This is me when I was a baby. You might notice there’s a feeding tube going into my nose, although it isn’t very clear as this was the late 1980’s when real life wasn’t even high-definition yet. The tube is important as when I was a baby I struggled to feed. It turned out that this was because I had an intolerance to cow’s milk. My doctor prescribed that I should be fed heavily with SMA Wysoy Soya Milk. Unfortunately this was to be the cause of a very serious problem which still affects me 24 years later. I decided to write about it here because my condition is one that very few people are aware of, yet it could easily effect any child in your life. Therefore I ask that after reading this you share it as widely as you can, if my story can help to raise awareness it’ll make everything I went through seem more worthwhile.

It is a little known fact that Soya milk contains a high level of a hormone called Phytoestrogen. This mimics the female sex hormone, Estrogen. As I was fed Soya milk several times a day, it meant that I was having a dose of hormone which was the equivalent of several contraceptive pills per day. My parents were unaware of this at the time, and the negative affect it had on my health, would not be detected until a few years later.

The first symptom I remember having, is when we were on holiday in the Philippines. I was 4 years old and kept complaining of a pain in my knee. Back then I described it as a ‘bendy knee pain’. I remember it being a sort of painful weakness which meant I couldn’t walk for long distances. I’m unsure what order the events which followed took place in as I was so young, but they all happened within a few months of each other:

When we returned from the holiday my parents took me to a doctor about the leg pain. I was given an X-Ray and it was discovered that my bone age was several years beyond what it should have been. This means that my bones had matured too fast. In the same period of time I went into puberty aged 4. My menstrual cycle began, and my body started to develop as it only should have at the normal age to go into puberty. I was referred to the Endocrinology Clinic at Great Ormond Street Hospital, where Dr Richard Stanhope was put in charge of my case. After an MRI scan it was found that a cyst had developed on my Pituritary Gland (the gland which controls the release of hormones). I was diagnosed with Precocious Puberty, which is an early onset of puberty.

If left untreated, puberty would’ve continued and I would have stopped growing by the age of 9 as my body would have thought I had reached adulthood. I was given a course of monthly injections to slow my growth down, the idea being that this would slow the rate of puberty.  My body continued to develop but at a slower rate, and my menstrual cycle stopped. The injections were stopped when I was 12, and it was thought that I would then continue puberty at a normal rate and have a growth spurt. Unfortunately this didn’t happen. When I finished the treatment I was just over 4ft7 (146cm). I didn’t grow at all, I was offered the option of having a bone stretching operation which would’ve meant breaking both of my legs, and adjusting pins on a metal cage to increase the gap between the bones by millimetres every day, thus giving me a few more inches of height. I decided that being taller wasn’t worth not being able to walk for a few years. I began a course of daily human growth hormone injections. This was meant to kick-start my growth, and we were hoping that I would at least reach the height of 5ft. After giving myself injections in the thigh every day for a year, there was no change in my height. Dr Stanhope kindly extended my course for a further 6 months, but there was still no change.

In terms of long terms of long-term effects, I am still the same height as when I finished my treatment. My feet stopped growing long before that, ending up at a child’s Size 13 in UK sizes. I developed Polycystic Ovarian Syndrome (PCOS), which means I have an irregular menstrual cycle. I was also hospitalised when I was 17 after a cyst on my ovary burst. I have struggled with my weight since I was a child, despite doing ballet several times a week and swimming every week I have never been able to lose weight successfully. I developed hyperflexible joints which means, due to the size of my feet being disproportionate to my weight, I twist my ankles regularly and fall over.
I believe that the hardest struggle however, has been psychological. Imagine dealing with teenage mood swings before the age of 5. My Mum often says that this was the hardest part for her, as I would argue like a teenager and she’d struggle to remember that I was still a child. One episode that I clearly remember is fighting through a dose of anesthetic which I’d been given to keep me still during an MRI scan, screaming about how unfair it was that I had to do it. Additionally, I had to deal with answering questions from other children about why I look different, there were even rumours amongst parents that I had been pregnant as a child and that’s why I had stretch marks. Teenagers have a lot to cope with in any case, but I had huge decisions to make about my future, and even had to discuss possibilities that my fertility would be affected. I don’t know if these were contributing factors to the anxiety disorder and depression I’ve suffered with as an adult, but I feel that the psychological damage done by my condition has been the most permanent.

Before writing this blog post, I was horrified to find that the exact brand of soya milk I was prescribed, is still being prescribed to baby girls that are lactose intolerant. I’m not saying that every child will be affected in the same way that I was, but I believe that parents should be told about the hormone content in Soya Milk. They should be aware of what exactly is going into their child’s body, and be able to make an educated, informed decision. My case is not one of a kind, and there are several articles on precocious puberty and soya milk from reputable sources suggesting a strong correlation. I often wonder how different my life would’ve been if I had been given the option of having another lactose free milk, like goats milk. What seems like such a simple thing, might have made a huge difference in my life.

The care I received at Great Ormond Street Hospital, and the advice my parents received from the Child Growth Foundation, made this difficult process a lot easier. I owe a depth of gratitude to Dr Stanhope for his treatment and care for the 11 years that I had to be seen at Great Ormond Street. I remember my times in hospital with fondness, even though I was often very unwell and kept overnight to have various tests and scans done. It is my aim that through this article I will raise awareness of my condition, but I’m hoping in the long-term to be more involved in providing support to children going through similar struggles, and to raise money to help research into growth disorders. Please subscribe to my blog to keep updated on how you can help.


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