My Story - Infancy to Late Childhood - The POMC Series

Hi All!

I hope everybody is well and I'm so pleased people are continuing to come to read the blog, the support has been awesome, thanks guys! Today's post in The POMC Series is very very personal and sensitive to me and will outline my life from birth to diagnosis, development with POMC in terms of the medical side of things to give people a better idea of how somebody with POMC can develop and survive. Let's begin.

I was born on December 14th 1995 in the early afternoon, from what my mother has told me  her pregnancy was good and there was nothing to make her think anything would be wrong, in fact she once describes being pregnant as "the healthiest time of [her] life". My birth was pretty normal and everybody was happy to have a bouncing baby lodging with them now, I was quite average for the first few weeks of life until at 9 weeks old my mother took me to the local GP surgery explain she felt I was gaining weight too quickly as I'd reached 16oz. She was told she was being an overly anxious young mother and my weight would level out, so she went home and thought she would keep and eye on me. 

Me at 9 months with my amazing Nanna

By 1 year old I had hit all of the appropriate milestones by that point, I was walking at 9 months, but I did not like to be touched and didn't cope well with certain noises like the grass cutter,  I was extremely picky about how I would play with my toys and being removed from my routine would upset me hugely. This lead my parents and grandparents to take me for an assessment, which lead on to an Autism diagnosis. However, those diagnosed with POMC have a tendency to have sensory issues, a sensitivity to certain noises and textures, not only textures of food. In my case I couldn't be touched or eat foods such as crunch veg/fruit or bread because the texture doesn't agree with me. 

I eventually went to nursery at 3 years old and the image to the right shows how much weight I had gained, which is clearly more than the average child. I was, at that point, not under the care of any doctor and had not received a diagnosis, doctors repeatedly told my mother she was overfeeding me but didn't look any further into it than that (although I was cute! I mean come on, say 'no' to that face!). When I went to my local nursery issues started arising, each year I remember being forced into a classroom and being told to take off my shoes so I could be weighed for a health check up, along with all the other children, being nearly 4 years old now I can remember this and it was unpleasant to say the least, I remember hearing what a man was saying to the teachers as I got off the scales "This girl is far too fat, phone her mother", so my mother was called and raised holy hell with them, she thought the situation was a barbaric as I did, my whole family at this point was convinced something was wrong but again, doctors simply told my Mam to get me moving more and feed me less. Thing is, I was always dancing, running and playing around, I thought I was "normal" until I went to nursery, but bullying, which I will get to in less retail later and more detail in another post, absolutely crushed my idea that I was average as did this traumatic experience with the scales. 

Me at 4 - close to my diagnosis

At 4 years old I was changing my personality, I stayed away from people at nursery more and went outside a little less, mainly playing in my back garden because I realised people were looking at me because I was fat, still it didn't stop me being happy. One day I took poorly and was taken into Durham hospital Treetops ward for children, I had had a number of tests done one of which being blood. A doctor who later became my regular paediatrician at the RVI told my mother something in my bloods was missing, he then told her to take me to the RVI immediately, this was obviously a distressing time for my family not knowing what was going on. It was at the RVI after numerous, extensive tests and genetic analysis, nights spent in the RVI, days of nursery and school, that Mam was finally told I had POMC deficiency. I don't know if I was told right away but I do remember being told that I "wasn't like everybody else" by family and thinking "Mammy and Nanna are crying so I have to be brave" but after being told in as much detail as you can tell a 4/5 year old, sitting behind our armchair and crying silently. 

After my diagnosis I was regularly at the RVI in Newcastle where I got fab treatment from the Doctors and nurses who even let me paint up a wall for Christmas, which was so so fun! The focus for doctors at this point was keeping my weight maintained as they knew very little about the POMC in 1999, so with regular hospital appointments and check up it got to the point where I was told I needed to go to Cambridge Addenbrooke hospital to meet the chief doctor, as I called her, who studied this disease. I stayed two nights in Cambridge hospital where I was tested every 5 minutes for blood pressure both pre and post exercise, I was given blood test after blood test, an ECG and many more tests. At the end of the experience I was told that after all of that the doctors were surprised to find that everything was in full working order, my blood pressure was perfect, resting and exercising heart rate was extremely good, blood sugar was completely normal, as was cholesterol. Basically, the only thing wrong was POMC affecting my weight gain, thankfully I was healthy. I was 6 years old when I had my first Cambridge visit. 

When I started normal school at age 4, as mentioned previously bullying did become a problem, a major problem. The older I became the more weight I gained and to be brutal it was a free for all among the students with me. I was taunted day in and day out at school, nobody would play with me, I honestly did go through primary school without one true friend, mainly I was excluded to the point where on a break and dinner time I would push myself into a corner of the playground and read and read and read until the bell went. My school was particularly unhelpful and unsupportive as at one point in my school life teachers would berate me for having time off of school, some days my legs would hurt so much because of the rapid weight gain, I couldn't walk properly and didn't feel up to school at all, some days I just didn't go because at 6 years old I couldn't take the bullying anymore. There was one day I was in school at 6 where a group of boys came up to me and just started beating me because of how I looked; a fighter to the last I kept telling them I would win but they didn't stop until a teacher called them as they didn't know where they were. Safe to say my Mam and Nanna went up to their parents house and I didn't get that badly beaten ever again. 

For all of the parents of children with POMC do not EVER let any school, establishment,  adult, or child take advantage of a child the way my school was allowed to, one teacher would come over to my lunch table every day, as I took in packed lunch because I was picky with eating certain foods and textures, and she looked into my lunch box everyday she saw me to tell me what I was eating was disgusting and would make me fatter. Right here on this blog is the first time I  have ever disclosed that information. From that point on I have never been able to comfortably eat in front of anybody. 

Me at 8 years old, drawing away my troubles.

At 8 years old I was well into my primary education now and I was learning quickly that there were certain things I couldn't do, because of my weight I had developed exercise enduced asthma, I wasn't able to participate in P.E., I wasn't able to always go out with neighbouring children to play games due to pressure on my knees, back and legs, I had developed a curvature of the spine and a condition called Lordosis, walking became more difficult and the spinal curve made and still does make my legs go numb when walking for more than 10 minutes at a time. I was, although I didn't know it at that point, becoming depressed and more and more isolated so I found my pleasures in reading and drawing as you can see to your left.  

My regular hospital appointments continued, as did a steady weight gain, excessive hunger and the crowd of people at school, in the GP surgery and outside of the house, who would berate my weight, tell me to get more active and eat less. My family tried feeding me different things, less calories, watching me at all times with food, but they had no idea that the less they gave me to eat the more starving I became. It was when I started secondary school however that the real battle would begin...

Thank you all for reading this post, I apologise for the length of it, I hope this will help some of you understand how difficult it can be for children with POMC. In my next post I will move on to my journey from adolescence to adulthood, you can expect that out at some point tomorrow. 

Thank you all. XO