Pages

Monday, March 1, 2021

Managing eczema: Mummy’s way

My son never had issues with childhood eczema. But some time last year in July, he developed a whole body rash that started from his wrist. It was perplexing for me because I couldn’t identify a “trigger”. There were just too many possibilities that could have triggered the flare and I just couldn’t pinpoint one. Was it newly developed food allergies, dust from the onsite renovation in school, stress from school, alcohol/chemicals from the hand sanitisers, leaky gut, hormonal changes…or what? The list went go on and on and there was just no way I could identify the “cause”. 

I brought him to 2 dermatologists and 1 rheumatologist to seek medical opinions and to rule out the possibility of an autoimmune problem. All of them were certain that it was eczema and definitely due to genetics because mummy has it too. The derms’ way to help my son was to prescribe steroids. Knowing my very firm stand against steroids (my own TSW journey began 8 years ago), the first dermatologist wanted to start him on immunosuppressants, cyclosporin instead. I was dead against it! My son was only a 10 year old child! Was it necessary to start him on such a strong drug at his first ever onset of eczema? Wouldn’t this medication mess up his body system further? Should I not find out and address the causes first?

The second dermatologist proposed that I should consider Dupixent since I rejected the use of steroids and cyclosporin. He tried hard to convince me that Dupixent was safe for 6 years and above! I know of dermatologists who would propose Dupixent as a last resort but here is one who felt strongly I should give it to my son.

I left both clinics without any medication for my child except some antiseptic wash, probiotics and moisturisers. Both dermatologists were concerned that I was not doing the right thing by rejecting steroids - the only thing that could bring down the inflammation and itch. It was hard but I remained unmoved and refused the medication that would either result him addicted to the drugs and create more problems for his already eczema battled body. The last thing I want is for my son to go through TSW, being a sufferer myself. 

Dealing with eczema is a very tough one. It is not a life threatening condition yet it can affect one's quality of life badly. My son screamed in the shower (so much that our neighbour had to ask what happened). He had difficulties falling asleep, suffered intense itch, redness and inflammation. It was hard to manage as he was suffering and I didn't have a quick fix method to help him feel better. He was given at most a daily dose of antihistamine to help him sleep at night. Honestly, there were many days I felt I should just use steroids on him. But the fear that he might be addicted to the use of it frightened me. I thank God for my sister who was ever so supportive, in encouraging me to press on without the use of steroids. It was her firm belief and for standing by me that enabled me to maintain my non-steroid use. 

My son's condition improved over time, albeit slowly.  Honestly I am not entirely sure what helped. But I believe it’s a whole basket of things which worked together. There is no one miracle cream or quick fix medication. It was just mummy's own way of doing what she thought would help. 

1) Foot reflexology: I sent him for foot reflexology once a week, with the hope that it would help with his blood circulation. It could have been painful but my son found it generally relaxing. This may have helped with his sleep. I was taught by the masseur to do simple foot massage at home for my son to help with his lympathic drainage. Below is the masseur I sent my son to. 

(To be clear I have no vested interest in sharing his contact. This is just for pure sharing and reference in the event you may consider this as a possible help for yourself.)

2) Diet: I kept a strict diet for him. I was suspecting "leaky gut" as a cause of his problem though I had no way to prove it. My son was eating a lot of spicy stuff. He loves chilli and anything “mala” (spicy condiments). I removed these "exciting" food from his diet including seafood (except fish) and chicken.  Just lots of fresh food and broth with reduced seasoning (bare minimal use of soya sauce, salt and pepper). No processed or food high in salicylates and sugar. As much as possible he was given only food from my kitchen. Even today, he brings home cooked food for his recess in school. My son takes probiotics daily too. This is the one recommended by the dermatologist and (this derma range) is only available from the clinics (it's just how the supplier manages the distribution of this product). 

3) Moisturiser and shower oils: I tried a number of moisturisers on him but the one we settled for was Cerave. Economically speaking, it was more manageable compared to other moisturisers that the dermatologists recommended. The amount of moisturiser I had to use on him was astounding. His skin dries up so quickly despite the amount of moisturiser used. In his worst state, he had to bathe and moisturise at least 4 times a day. For months, I mixed in some tea tree essential oils into his moisturiser for antiseptic purpose. Nowadays, I mix Blue Tansy essential oil as I read Blue Tansy could help to heal and calm irritated skin. We are also using Salcura Derma Serum on his face and neck. My son calls it the "special cream" as we use it sparingly due to the cost of it. Its not available in SG so I get my stash online. 

12 drops of Blue Tansy oil mixed with 539g tub of Cerave cream 

Salcura Derma Serum. They have other popular products like their Dermaspray Intensive and Junior nourishing sprays. But the sprays are stingy on broken wounds. Might be more helpful for just dry skin with no wounds. 

My son uses this antiseptic wash once a week (to remove bacteria and to prevent infection). 
He was using Pinetarsol bath oil but switched to Eucerin bath oil, recommended by the dermatologist. 




4)  TCM: A well-meaning friend recommended TCM. No one in the family has ever seen a TCM practitioner! But we decided to give it a try and went to the one recommended, near home and with very reasonable pricing. The TCM practitioner was very balanced in his approach and assured that there was no steroid in the medication he gave to my son. My son’s condition was so bad on the first visit that he told me it was actually alright to work with the skin specialists to use a small amount of topical steroids to first reduce his inflammation. However he was respectful and understood my stand on not using steroids. The TCM practitioner was very assuring and he stressed that I had to be patient to see improvement. We saw him weekly and he would concoct a week’s supply of powdered medication based on his assessment of his health from the listening of his pulse. This practitioner retired 2 months into seeing him and another took over. It has been two months with this new practitioner and we continue to see progress. My son is still taking the TCM medicine today. Below is the practitioner I send my son to. 

(To be clear I have no vested interest in sharing his contact. This is just for pure sharing and reference in the event you may consider this as a possible help for yourself.)


TCM powdered medicine in small packs. Twice a day.

5) By God's grace, mercy and answered prayers: I prayed so hard for my son, pleading for the Lord's healing on him. I thought of Naaman (who had leprosy), and prayed that he too could be restored like Naaman. 

My son is not completely cured of his eczema. But his skin is healing slowly but nicely. The pictures below show his progress. 





He is sleeping better, feeling less itchy and definitely happier. Nowadays, he loves to bike around the estate even in the hot afternoon sun! Few months ago, he would refuse even a short walk around the estate as the heat and perspiration would be torturous for him.  

Given that its genetics, my son's eczema is a problem that he likely has to deal with for the rest of his life. But it is encouraging to know that managing eczema can be done in a more natural and sustainable way. 

Personally I do not think the use of steroids, cyclosporine or even Dupixent is a sustainable way of managing a child's eczema especially when eczema covers a huge part of the body or may affects a child long term. More damage could be done and when that happens, one cannot be sure if its just bad eczema or "steroids induced eczema". 

Healing is possible, but find the right care, accompanied with healthy diet and time, I believe the body can slowly repair and heal. xo 





Saturday, April 1, 2017

4 years on... No steroids, no moisturizer!

April 2017 marks the end of my 4 years of withdrawal. I am happy to say I am kind of over the withdrawal! My last bad flare was a year ago and since then, I can't speak of any flares in between. It has been many months since I stopped the use of moisturizer. Somehow, the skin doesn't scream for it. I have stopped wearing longs as there's no need to conceal any weeping and inflamed skin! The skin is however very dry and scaly but that doesn't bother me. I am just so thankful that other than dry, the skin is "normal". I may be free from steroids withdrawal, but it doesn't mean I do not have eczema. There are some parts of my hand with eczema. But I can easily manage it without doing anything! The skin heals naturally and I just have to bear with the little discomfort. Many whom I met are surprised to know of the withdrawal process I went through. They could never imagine the swell of my legs and neck shown in the first few posts. A comparison of how my feet looked 4 years ago and now can be seen below.

I hope this will encourage fellow sufferers that they too can get better and heal as they soldier on their withdrawal process. There are no miracles in TSW. Healing will come but you must give it time. Only time!


Dry skin but steroids free! 


Eczema on my hand


Can you imagine how my feet swelled when I started the withdrawal? Amazingly shocking!
It's an inevitable process that we must overcome. 

Thursday, March 24, 2016

Song in the night

What is your song in the night? In those darkest nights when life seems crippling and the soul longs for heaven? TSW cast me into those darkest nights, into moments of despair as I grappled with torturous physical pain. The cracked, raw and red skin with fresh open wounds.... It stung so much with every bath time and any emollient applied.  It was dreadful, so very dreadful. I felt like I had walked into the valley of the shadows of death.

In moments of such despair, God never fails to bring in a song or a word..... to comfort my soul. This is a beautiful song that speaks to my heart.... I would sing this each time I feel the waves around me... and plead that God would part the waters and calm the raging sea. The chorus never fails to reduce me to tears...

"Knowing You love me through the burden I must bear,
Hearing Your footsteps lets me know I'm in Your care....
And in the night of my life You bring the promise of day,
Here is my hand, show me the way...."

What an assurance to know that we need not walk through the valley alone. What precious knowledge to know God is there each step of the way, loving and caring for us...

Part The Waters 
When I think I'm going under, part the waters, Lord. 
When I feel the waves around me, calm the sea. 
When I cry for help, O hear me, Lord, and hold out Your hand. 
Touch my life, still the raging storm in me. 

Knowing You love me through the burden I must bear, 

Hearing Your footsteps lets me know I'm in Your care, 
And in the night of my life You bring the promise of day, 
Here is my hand, show me the way. 

Knowing You love me helps me face another day. 

Hearing Your footsteps drives the clouds and fear away; 
And in the tears of my life I see the sorrow You bore, 
Here is my pain, heal it once more. 

When I think I'm going under, part the waters, Lord. 

When I feel the waves around me, calm the sea. 
When I cry for help, O hear me, Lord, and hold out Your hand. 
Touch my life, still the raging storm in me.




Wednesday, March 23, 2016

Blog objectives

I write to educate you on Topical Steroid Withdrawal (TSW) and to share openly with you my journey as I battle to recover from my addiction to steroids. I wish upon all to be sparred from this horrifying process that I went through. I would approach anyone who crosses my path whom I suspect is addicted to steroids. I can recognise just by the look of it! The pinkish, thin and damaged skin. Unmistakable! Yes I have many times approached strangers to share about TSW. 

My purpose to blog is to empower you with this knowledge. However I am in no capacity to convince or persuade you to proceed on this route. Withdrawal is a painful and very difficult process. Some speak of estranged relationships with their spouses, family members, depression, loss of jobs, financial difficulties... Many are discouraged as healing doesn't comes as expected. I am lying if I tell you all who embarked on this journey have surmounted and conquered the monster. Many in fact have dropped out and returned to steroids.... 

The decision whether to withdraw is really personal. Be empowered with this knowledge and make an informed decision of what you want to do with your health/life. Read up and consider if withdrawal is for you. Do you see yourself using steroids for the rest of your life? If the answer is a clear no, then ask yourself if you have enough support to help you through the withdrawal. Perhaps you need a supportive caregiver to look after your basic needs as even some simple household chores can be too daunting. Perhaps you are the sole bread winner and taking time off work is not possible. Is your mind strong enough to surmount pain and are you willing to "give up" the next few years of quality life to heal? Do you believe that the short term pain will bring about long term gain? Are you able to take disappointments should you fail to heal as fast as you wished? The list of things to consider can be endless....

As for me, I chose the way of withdrawal. I chose the painful way of managing without the fast fixing effect of steroids which could cause long term damage to my health. I do not wish to prolong the continual use of this drug on me. Its a personal decision that I have taken and stuck by. This path is a lonely one as I have to fight against my loved ones and well meaning friends who disapprove of the stand against steroids. 

To me, the decision is all worth it. Having seen what steroids did to my body, I am resolved never to use it to treat skin rash/eczema on myself or my children. I have a  firm belief that given time and appropriate natural help, the skin is able to heal on its own. If only we can be a little more patient and allow time to heal.... 

xo

Saving my son from steroid addiction


It has been a long time since I last posted here. But thought its a good time now to share with you my "no steroid" determination for my son and how glad I am to save him from the possibility of steroids addiction. 

Last June, my son had a full body rash which led to staph infection (I suspect the flare was due to examination stress). The flare was so bad that his legs became inflamed, oozing and pus filled. It was messy and surely painful. As a mum, I was brought down to my knees as I was so helpless to see how his condition recurred despite 2 rounds of antibiotics (Augmentin). The doctors did not prescribed steroids as they know my stand against steroids. At the 3rd doctor's consultation, the doctor wanted to admit my son for intravenous antibiotics as he feared the infection went septic. My son pleaded against it and was put on the 3rd round of oral antibiotics. 

This time I decided to do ALL that I could to help his condition. I removed all artificial sugar from his diet, put him on probiotics, sent him for foot massage, spent tonnes on bandages, moisturised him with whichever moisturiser he found comfortable, dressing and undressing his wounds, repeated reminders (sometimes harsh ones) on not scratching, made my own natural (and very yucky) antibiotics with manuka honey, turmeric, apple cider and force it down his throat. It was a time when I had to also put my feet down against using any steroids or immunity suppressant to "help" his skin heal. I had to disagree with my husband! I was so glad that after a few weeks of perseverance, the infection eventually left (I'm sure the antibiotics helped) and the staph infection didn't recur. The skin healed decently in a matter of days (see picture). I would like to think his healing is also supported by the basket of things I gave him. 

It has been 9 months since his last serious flare and today his skin remains the normal healthy skin and there is no evidence that the skin went through a rough patch of red, inflammation and ooze. See the picture below. 



Each time I look at his feet, I am reminded of the right decision I made for him. Mummy chose not to get him started on steroids, mummy tried her very best and withstood all external pressures to save him from red skin syndrome. Others may not understand but mummy surely knows that's the best thing she could do for him.

Dear all, the skin can surely heal. But give it time and have faith in this path you have chosen. Do not ever succumb to the use of steroids!

You can do it! 


xo

Monday, January 11, 2016

Moving on

It is just so amazing to know that January 2016 marks my 33rd month in this journey of steroids withdrawal. Almost 3 years free of steroids!
How time flies and I am so glad I have progressed from the lowest point in my life in 2013 when I witnessed the most horrendous damage steroids did to my body.

Till today, I speak passionately against the use of topical steroids to treat eczema and this post has always been my point of reference on the damaging effects of steroids .

Allow me to wallow in sentimentality as I recall how I have progressed....

Some goodbyes are necessary:

1) Supplements
The amount of supplements that I used to consume was whopping. Currently I am good not taking any. Occasionally I might pop in some probiotics, olive extract or whatever left over supplements that have yet to expire.

2) Creams
I couldn't have survived without the use of moisturizer. Thank God for His marvelous provision of the various moisturizers that I could get my hands on.
I am so thankful that gone are the days I need to lather them on. Today, a daily night routine is simply to mix some tea tree oil with a light lotion (my preference is still QV).




3) Friends 
Not sure if this is a good problem. 
Many friends were made during the TSW period. However as we improved in our health and recovered from TSW addiction, many of us have also moved on with our own lives. Over time, we stopped keeping in touch and probably never will as the 'need' to do so has diminished and disappeared. I like to think this is a good problem. Lovely goodbyes indeed. 

Everyone I know who is on this journey has improved in his/hers quality of life. There is not one I know who won't testify that the journey is not worth the pain. 

Should you are at the crossroad, wondering whether to embark on a steroids free journey, feel drop to drop a line. 

This website should be a good place to start. 


xo