Owen’s Story

An Escape from the ‘Bloody Hell’ of Eczema with Traditional Chinese Medicine

Eczema not only destroyed Owen’s skin, it persecuted his spirit, and nearly shattered his entire family. Life was hell. We couldn’t face a new day, we dreaded him waking every morning. Owen did not greet you with a cheeky smile, but woke up screaming wildly… and so the day continued. We dreaded him going to bed each night, knowing he had to endure another night of grim torture. How could he take anymore? We felt certain that if he had a choice he wouldn’t. Such was the vehemence of his affliction that we shamefully thought he’d be better off dead. Owen was constantly suffering, he was deprived of happiness. There were occasional glimpses of the dear little boy held captive by this malicious disease. Mostly, Owen had not the desire to play, not the energy or inclination to smile or talk, his energy was consumed by relentless, scratching, screaming frenzies. Eczema is not just a skin rash. Eczema is a surface manifestation of an internal illness. Luckily some Eczema sufferers have a mild form. However severe Eczema can cause horrific misery, can make you seriously ill, and even threaten your life. The morbidity it can cause has compelled some sufferers to take their own life.

 

Owen showed the first signs of Eczema from just six weeks old. Over time it had smothered his entire little body in red-raw, weeping, smelly sores and lacerations. Never still, he was constantly restless as the incessant vile itching convulsively moved around his little body. His Eczema would suddenly ignite without warning. Rapidly the spark of irritation would spread to a blazing inferno of itching and burning over his entire little body. Owen became engulfed in a frenzied fit of scratching, causing him to writhe and contort as the Eczema attacked his body without mercy. We watched him ferociously tearing his flesh, causing nasty bleeding wounds which did nothing to relieve the unstoppable itch. If we tried gently to stop him scratching, he became more hysterical which made it much worse.


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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 self[1]control 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!)

 
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There was never any respite. In between the horrific attacks, he would need comforting and cuddling constantly and was understandably incredibly clingy. He only wanted me, his Daddy felt rejected as he was unable to provide comfort. It was incredibly difficult to get done the essential day to day jobs with the added burden of allergen free cooking, huge amounts of washing (his bed sheets needed washing daily, and his clothes needed changing frequently as did mine as they became soiled so quickly). The furniture and floors were equally soiled. He would get very upset if I put him down to do things, which could then ignite a severe episode. Even trying to go to the toilet myself was virtually impossible, he would scream frantically if I put him down. Sometimes I just stayed shut in the bathroom for a few minutes with my head in my hands needing to breathe and trying to retain my sanity. It was so difficult to cope day in day out.

As parents the chronic sleep deprivation combined with the huge stress nearly turned us mad. We tried hard to put on a ‘normal’ exterior and ‘hold it together’ when in company, as we didn’t want to complain or get upset especially in ear shot of Owen.

 

It would have been very easy for him to have labelled himself as a burden. It became increasingly difficult to attend social occasions together as a couple, as leaving Owen with a baby sitter was a distraught experience for both. We would have to return home prematurely as the poor babysitter couldn’t cope.

Owen also had severe chronic asthma and repeated chest infections, requiring numerous hospital admissions, and suffered terrible tummy aches, distended abdomen and abnormal bowel motions, which added much to his woe.

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Then in January 2013 he contracted Eczema Herpeticum, a rare and in his case severe Herpes infection. Every single parent who has a child with Eczema should be aware of this dangerous disease. If you have a child with Eczema who develops ‘chicken pox’ like lesions seek medical advice urgently. Eczema Herpeticum is a medical emergency as it can very rapidly become devastating or fatal. It needs urgent medical treatment. Many doctors may be unaware of it as it’s so rare. This looked like chicken pox initially and a few days later it looked as though he had fallen face first into a fire. It typically attacks the head and face the most aggressively, which can cause blindness and if it progresses to the brain this can be devastating. This was a horrific, flesh destroying, haemorrhagic nightmare, extremely painful and distressing for him and the whole family. I shan’t forget the lovely A&E Consultant who was admitting him to hospital asking me if I’d tried anything ‘alternative’, ‘We don’t have all the answers’, he gently declared. I am inclined to agree!


 
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Following this, his condition worsened, his skin was tragic and his general health deteriorated. The added threat of recurring Eczema Herpeticum taunted me with a sickening menace. The absence of a skin barrier meant that his immune system was overwhelmed by pathogens and toxins that would not normally get in.

My search for a cure became even more compelling. I started to read text books and research archives on treating Eczema with Traditional Chinese Medicine TCM). Some doctors told me I was wasting my efforts, he would have this for life. I just needed to accept it. Genetic testing had proven that he had mutations affecting a gene that produces Filaggrin - a skin protein. Without a normal Filaggrin gene he would never have a skin barrier. Accept this, I would NOT! Despite the opposition, at times from my family too, one day I found it……..

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By the time I found Shulan Tang we were literally at our wits end. By then, Owen couldn’t stand or walk as his legs were such a horrendous mess, he could not straighten his knees or put his heels on the ground. His fingertips were chronically infected and painful and the smell emanating from them was vile. We were carrying our four and a half year old boy everywhere, which was very difficult as he struggled to tolerate the pressure of our arms around his thighs making him squirm and whimper. His eyes were so telling, there was no spark, no spirit. The Eczema denied him the inclination to play, explore and enjoy his world. We had no life, we were barely existing. Owen was due to start school in four months time, which coincided with his fifth birthday.

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Attending school seemed inconceivable. His asthma was also getting much worse, with more frequent hospital admissions, the latest being life-threatening. His lungs were so bad that he was being tested for cystic fibrosis. Family relations especially between us as parents became extremely strained. The intense stress, mental and physical exhaustion, frustration, uncertainty and powerlessness rendered us despondent with life. Owen could not go on, he could take no more, and nor could we. Eczema had devoured us all.

A joyful bundle of mischief, full of giggles and zest for life started to emerge just before his fifth birthday. Doctor Shulan Tang, Professor of Chinese Medicine rescued Owen and us from the brink of despair………

‘He will be okay’, she calmly told me on our first meeting, despite being unable to conceal the horror in her face when I gently revealed Owen’s ravaged, pitiful body to her. Something made me really believe her. The first very promising sign was that he started to wee. Previously having been dry all night he would not wee until the afternoon, and even then a scanty amount. This is a well understood symptom of his condition in Chinese medicine yet was unexplained by Western doctors. His skin began to improve within two weeks and so this has continued.


 

A year on, Owen’s skin is over 95% normal. Now I feel tears of joy when he is running about in his shorts watching his adorable little legs covered in soft velvety skin. He loves being a bright bouncy boy… playing in a paddling pool, charging around, getting hot & mucky, riding his bike, and is a giggly little chatterbox… he is finally FREE! Even within a few weeks of treatment his energy and sense of freedom was palpable, he was literally shouting out and singing with joy as he felt himself being released from this hellish existence. Owen had to drink a mug full of vile tasting medicine twice daily. Even at his tender age it did not take much persuasion, he was desperate and he was feeling the effects. I used to marvel at the paper bags full of dried twigs, leaves, bark, seed heads, tubers, fungi etc which we had to decoct into a ‘tea’ for Owen.


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Shulan told us to discontinue plastering his skin with creams or any topical ‘relievers’ as she believes this just makes matters worse, by blocking the pores and therefore trapping toxins and inflammation underneath. She also advised us to avoid ‘heating’ foods, such as lamb, beef, onions, garlic, spices, chocolate, and give him more ‘cooling’ foods such as cucumber and watermelon. His lung condition is much less severe now, as are his allergies. We are continuing with the herbal medicine to concentrate more on these now.

We had previously taken him to see another practitioner of Chinese Medicine and although this had initially helped his energy levels his skin and lung issues were unrelenting. Please don’t dismiss TCM if you’ve already tried it….persevere… just like you might get another opinion in western medicine or try a different hairdresser! Owen & I travelled to USA prior to finding Shulan to attend a seminar on treating children with Oriental Medicine. There I met Consultant Paediatricians whose only regret in studying Chinese medicine was that they had not discovered it sooner, as they would have been able to help so many more children whom they couldn’t within the confines of allopathic medicine. They were all truly inspired and excited by it and were planning to conduct research within their specialisms. This fuelled my inspiration, determination and confidence that Chinese Medicine had the answer to his prayers. What I learned explained every little manifestation of his condition, and how interrelated this was to the lungs and the digestive system.

It would be very easy to utterly indulge in Owen’s escape from Eczema, and our new life. But the volume and intensity of his screams I shall never forget. Sharing the amazing results Owen has achieved with Chinese medicine may offer other sufferers hope and an escape route from the bloody hell of Eczema.

It would be promising to raise awareness amongst the medical profession also. Western medicine has so many strengths and is indispensable, but it doesn’t have all the answers. Allopathic medicine is particularly fantastic at saving lives in acute care, and Owen would not be here without it, for which I am truly grateful. However it seems to be failing patients and families with Eczema. Temporary or ineffective relief of symptoms with detrimental side effects caused by steroids and other immunosuppressive medication is not a solution. It is like fanning the fire without removing the source. It does not stop the internal driver of Eczema…Eczema is NOT skin deep! Luckily I have the clinical reasoning skills to question some of the allopathic treatments Owen has been offered. I was unprepared to apply immunosuppressive ointments in the aftermath of a potentially lethal skin infection! Luckily I did not accept medical opinion that he would have this for life. My tenacious nature has meant that Owen has finally been freed from his sentence to a grim, miserable existence thanks to discovering the wonders of TCM. I am telling Owen’s story to raise awareness in the hope it may help someone else. Perhaps if awareness is raised, doctors may be more inclined to mention non-allopathic treatment options to their patients rather than immediately dismiss them which was our experience with some (not all) of the professionals we met. Had I been ‘aware’, Owen would not have suffered terribly for five long years.

I would urge anyone with a chronic health issue to empower yourself and research every avenue you can to help yourself.

I am sometimes sceptical about the information we receive about our health and the recommended treatments. It is not necessarily balanced or comprehensive. Drug companies are often funding the ‘research’ and ‘informing’ us which questions how impartial the information is. Managing disease rather than resuming health, is a massive money- spinner and it could be perceived that their primary incentive is financial gain. Glowing health does not line pockets, and nor do non-allopathic treatments such as TCM, so such alternatives are perhaps less likely to be advocated! Self- help and responsibility for our health does not make profit, dependency on more and more drugs does.

TCM requires you to take responsibility for your health and may advise dietary and lifestyle changes necessary to facilitate healing. Treatments include Acupuncture, Herbal medicine, Qigong (exercise therapy), Tuina (medical-massage) & Food therapy.

Unfortunately Chinese medicine is relatively new and is not yet protected in the UK, so you need to be cautious and selective in choosing your practitioner. Ensure they are registered with the professional bodies, so that you know they are fully qualified and following EU guidelines. (British Acupuncture Council; ATCM; For oral Chinese herbal medicines - Register of Chinese Herbal Medicine)

When I first qualified, my profession was no different. Anyone could call themselves a Physiotherapist, and could pull people’s necks around without any knowledge or skill. This was dangerous… the public were vulnerable, as was our profession. Our profile was being jeopardised by unscrupulous practitioners, (comparable to the profession of TCM currently in the UK). Thankfully we now have protected title!

The subject of Chinese medicine is vast, it is based on two millennia of very detailed observations and trial and error (research), based on extremely accurate anatomical knowledge and physiological principles. Their descriptions are much more poetic and eloquent but are underpinned by strong consistent theories. The body is understood as an integrated whole which sits well with my way of thinking. TCM explores the underlying root cause of disease and treatment targets this rather than treating the effect (symptom). TCM identifies imbalances in the body and understands how these can lead to disease, it looks at the person (not just the body part) as a whole.

In Owen’s case the herbs were driving out the pathogenic ‘Heat’ in his blood and gently increasing the ‘Yin’ which is the body’s own coolant….the ‘Water that puts out the Fire’, while supporting a healthy digestion. Some of the herbs used were flesh generating to help the skin heal. Heat dries up the body fluids and as the heat reduced he started to pass more urine and his skin became less red, dry and cracked. The herbs were also tackling the heat and phlegm in his lungs which according to TCM theory can be caused by a weak digestion (which we tend to overload in our western culture of overfeeding babies) causing accumulation of rotting food and the production of phlegm with disturbed fluid metabolism.

In searching for the answers to Owen’s troubles I have become infatuated by the subject and have continued to study it. My own patients keep jumping out of the pages, as if they had written the chapter! I am now enrolled in formal TCM training to deepen my knowledge and enable me to vastly build on the westernised acupuncture training I have received as a Physiotherapist…which doesn’t even scratch the surface! Despite being an ancient medical system it seems to me it already has the answers to many of our modern medical ‘mysteries’! I would urge anyone with a passion for nature, biology & health to consider studying this fascinating medical system. It could lead to a very exciting and rewarding career. But be warned, the subject is very deep, just like Eczema!