Discussions By Condition: I cannot get a diagnosis.

Severe childhood starvation

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: Archer
  • May 28, 2007
  • 06:58 PM

Apologies in advance - this one is likely to be lengthy!

I think this is in the right section of the forums, again apologies if it isn't - this looks like a great resource and I'm just finding my way around.

Until the age of two (one month before my third birthday) I was happy and healthy and ate very well. The only medical issues I had were being induced a month early because my heart as beating irregularly in the womb, and a small number (like two or three confirmed) of petit mal fits. Other than that, fine.

One day for no apparent reason and with no other symptoms apparent, I stopped eating. Just completely and totally stopped. I displayed no appetite or hunger or desire for food of any kind, if food was put in my mouth I wouldn't chew it, much less swallow. I did, however, drink normally and was okay chewing ice lollies - just no solid food of any kind.

This went on for four weeks and three days.

The other symptoms I had during this time were as follows: hair loss, extreme weight loss, loss of co-ordination and inability to walk, incontinence, extreme lethargy, finger and toenails went black, bleeding from gums. I don't know if they're all from starvation, or if there's anything else meaningful in there.

Given my age and how ill I was, I have only a handful of memories from the time - I remember being *extremely* tired, I lost colour vision (since returned) and my hearing was very muted (almost like being underwater - also since returned to normal).

I was only kept alive because at doctors' instructions, my mother put some egg white in any juice I drank - this gave me just enough calories and nutrients to stay alive.

A battery of tests was run on me, no-one had any idea what was causing this. The best guess was some kind of leukaemia, but whatever tests were done came back negative. I don't think I was admitted, but from what I gather I was very close to being fed through a tube. Apparently it's somewhat of a mystery how I was able to even live that long without food, let alone why I didn't eat in the first place.

One day, again for no apparent reason, I asked for a cookie . . . and proceeded to eat the entire packet. And that was it - other than having to physically recover from the starvation, there were no other obvious symptoms.

When my mother asked why I wouldn't eat before, apparently I replied "I knew I'd be sick." So while I don't remember being nauseus, it seems that extreme nausea, rather than extreme lack of appetite, might be the main symptom.

There's a photo somewhere of me from this time - I haven't seen it in years - in which the individual bones of my skull can clearly be seen. I look like something out of a concentration camp or famine nightmare.

If there are other, more specific symptoms, I don't know what they are - it is *very* difficult to get anyone in my family to talk about this (as far as they're concerned it was horribly traumatic watching their daughter/neice/sister almost die, and would rather not think about it any more) and as far as I know most of my medical notes got lost a while ago.

I have a number of effects in my day to day life which I put down to that mystery illness:
- block eating (instead of a sandwich, I would eat an entire loaf of bread, or an entire packet of ham - never mixing the things together) which was very obvious for years, but has faded slowly over time - I was about 15 before I could eat a burger or hotdog (before then I would have to have the meat and bread separately)
- very, very picky eater - I can't stand any kind of sauce or flavouring (except salt) on my food - anything that isn't completely plain makes me feel physically sick
- can't stand vegetables (though I love fruit)
- inability to put on weight - I have a naturally very low body fat percentage (which is handy, as I'm an athlete), and I have to put in a lot of effort to gain any weight as muscle. If I stop exercising (say in the off-season), I lose weight because some of the muscle goes
- strange appetite - I can only really eat if I'm physically hungry *and* have the psychological desire for food, at the same time. Otherwise it's very difficult to chew or swallow.
- occassional highly specific food cravings - this is MUCH less apparent now than when I was younger, but it's still there. I'll need chocolate - but it will be a specific brand (not always the same one), as opposed to any chocolate. I'll need bread - but it will have to be the right kind, and I'll be able to taste bleach and so forth in white bread.
- salt craving - since I started eating again, I've had an unusually high desire for salt - normal to me is very salty to most people, and what I consider slightly salty is inedible to most people. Despite this my blood pressure is actually very low, and it doesn't seem to harm me at all.

I think those dietry effects are the result of my metabolism somehow being permanently damaged either by the underlying cause of the disease, or by the starvation itself. With salt in particular, especially as I can be prone to cramps, I wonder if I have a salt deficiency and crave it to make up the difference.

As well as the food-related symptoms, there are a few other things:

- ADD symptoms (never diagnosed, but I meet the diagnostic criteria)
- small in stature but with relatively very large feet (my family tends to be small, but I wonder if my growth was stunted by the starvation, except my feet, which grew to expected size)
- a series of pain and sleep symptoms which I had for as long as I can remember up until about a year ago, which were eventually diagnosed as fibromyalgia - my mother tells me these started when I was ill. I doubt the fibromyalgia diagnosis because I now seem to be 95% free of the symptoms.
- neurological symptoms resembling restless legs
- some memory problems (though hard to tell if this is a neurological symptom, or just somewhere within the human norm)

Doctors pretty much gave up trying to work out what *had* been wrong as soon as it seemed I was better, so that was that.

I live in Northern Ireland, and this was back in 1984, so technology wasn't the greatest - if I lived in England I am pretty sure I would have been referred to a specialised children's hospital, but that wasn't an option here.

Maybe ten years ago, my mother had a different GP who was absolutely amazing, especially at diagnosis. She mentioned my symptoms to him, and he *immediately* named an illness he thought it was, and asked if I block ate, as that was a common symptom in survivors. Unfortunately my mother does not remember the name he used, and he died shortly after - at which point all his patients' medical records were destroyed.

This has always felt like some kind of important mystery in my life. This might seem completely unfair, but it almost feels like an adopted child wanting to know who their biological parents were. I have this obsessive need to find out exactly what that illness was, what its causes were, what its lasting effects are. It's maddening.

Unfortunately, as a lot of the symptoms I had were vague and/or the result of starvation rather than the illness itself, it's very, very hard to track this down.

I would be greatly obliged if anyone has any idea what this was, or even anywhere I could look, be it websites, books, or anything.

Thanks in advance, and well done for managing to read that all :D

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