He would scream to be held, desperately seeking comfort, but then would push you away as he couldn’t bear contact on his ravaged skin. Comforting words could not be heard above the ear piercing screams. I used to close the windows in case anyone was walking by, it sounded like he was being tortured….he was. Each violent episode may last half an hour or a whole hour until he was totally exhausted. Powerless to extinguish these attacks, all we could do was watch helplessly and plead it to abate. It was unbearable to watch your baby going through this and be able to do absolutely nothing to help him. My guts would writhe as the volume and intensity of the screaming escalated, I was feeling his physical & mental anguish. I had to bite my lip, pull my hair, and fight back tears, usually in vain. I had never before hated life with a vehement passion. When it did calm down to a simmer Owen would plead pitifully, ‘It won’t stop’, ‘It never stops’, ‘It’s hurting’, ‘It won’t go away’ and he would sob. The only thing I could say to him was, ‘It will go away, I promise you. We will find a way.’ These promises would be empty as each treatment we tried failed. We tried all sorts from conventional medicine to dietary therapy, homeopathy, naturopathy…….nothing worked. Topical creams were of no benefit and emollients served to aggravate his skin.
In between the savage fits, he would drape listlessly over my shoulder until the next one. Emotional upset always triggered an itching attack, so we tended to ‘walk on eggshells’ terrified of setting it off. Owen’s very caring older brother was always being reminded ‘not to bother’ Owen for fear of triggering off another horrendous episode. We felt so guilty for suppressing his brother’s natural childhood spontaneity and fun. He longed to play with and chatter with his little brother, he showered him with affection and kindness yet got nothing but a cold shoulder in return. This was heart breaking to see.
Short walks in the fresh air may give Owen some reprieve, although the pressure of the push chair on some days would be intolerable for him. Sometimes he’d fall asleep, which was a blessed relief for us both.
Bathing him would cause him to writhe and shriek in agony as the water stung his raw flesh. He would yelp and flinch on trying to dress him or gently roll his trousers down for toileting. Even placing him gently into a sitting position so he could eat or toilet was agonising as he couldn’t bear the pressure on his legs. Car journeys were horrendous as the combination of pressure and heat generated by the contact of the seat against his legs would cause him unbearable itching and pain. Even a five minute journey could be incredibly stressful and long journeys were hideous. It required a huge amount of selfcontrol to remain composed, offer words of comfort if they could be heard above the deafening screams and concentrate on driving. I became close to driving off the road as I felt my sanity slipping. Disturbing images entered my head of driving into oblivion.
Trying to do normal family stuff was an ordeal. Everywhere we went we did not have long before an ‘episode’ sparked, you could never relax as it might strike any minute and that would be it…..we would have to leave. Indoor activities like parties or soft play made him too hot, necessitating a sharp exit, as the itching attack that followed was so distressing for Owen and everyone around him. It became easier not to bother. This limited socialisation opportunities for his older brother, but we had no choice, Eczema was our dictator. It stole the happiness from those precious early years.
I really worried about Owen’s self-esteem. Everywhere we went he would be ‘clocked’, and met by either a sympathetic stare or a suspicious one. Every single outing would entice people to remark, sometimes kindly, other times accusingly. ‘Excuse me, he isn’t contagious is he?’ ‘He hasn’t got chicken pox has he?’ ‘No’, I would reply, ‘I wish he had!’ Wherever we went, Owen would deposit a huge snow storm of dead skin, body fluid and blood which could not go unnoticed…It was disgusting. We grew tired of being questioned about his appearance and grew to resent the expectations of total strangers that an explanation was owed! The comments and questions were felt by Owen and it was affecting his confidence….people were basically saying, ‘You’re unsightly & undesirable’.
Night-time was sheer hell. Every single night would involve countless episodes of inconsolable hysterical screaming and thrashing. His bed sheets were smothered in blood, skin & flesh. The chronic sleep deprivation, intense stress and relentless misery were a grim combination for us all. Even when he was asleep he was incredibly restless, uttering tormented noises – the insane itch never slept.
By his first birthday he was thin and gaunt looking. He had a blue hue around his mouth, and his hair was dull, thin and wispy. Flaccid and disengaged from the world, his eyes were vacant, his vitality consumed.
Owen’s growth was retarded, despite a plentiful and nourishing diet. Owen had multiple identified food allergies but also developed a tendency to react to ‘food’. By the time he was two years old, he was reacting to nearly every meal regardless of the food type. Meal times were something we used to dread rather than relax and enjoy. His face would redden & swell up, hives would develop, his throat may constrict, and he would cough & wheeze becoming very distressed, while frantically scratching and grasping his throat. Owen’s older brother, very young himself, was frequently deserted at the table while we tried to pacify the reactions with medication and TLC. We had to go outside, freezing or not, to cool him down. It could take in excess of half an hour for it to abate. For years we could very rarely sit down together and finish a meal undisrupted. Even in the absence of an allergic reaction the Eczema was always fierce round meal times. We had to continue feeding him like a baby as he was too distracted by the incessant itch or too exhausted to feed himself. I can’t tell you how many times I emptied my freezer of home-cooked meals and started again to eliminate yet another ingredient, or changed the pans (desperate measures!)