A Message for the Parents with Atopic Dermatitis Children, From A Used-To-Be Mummy Baby


 

When I was exactly 6 months old, I spent a day out under blazing sun, and that triggered my life with severe Atopic Dermatitis.  My whole body became bright red perceptively on the day.  

Because every patch of my skin was oozing, my parents put medicine on my skin, bandaged me up everyday, and I ended up looking like a Mummy.  Even though I was a baby, no one ever said to meWhat a cute baby!’

…Too baaaad, I couldn’t show them my natural cute-ness!…LOL!

 

 

My mother felt very sorry for my situation, and listened to the doctor when he told her to change her diet while breastfeeding, and even afterwards.
She took this task very seriously, and completely changed our family’s diet.

 

 

Back then, ‘Mochi’ (glutinous rice cake) was one of my favorite foods to eat.  However, because the doctor told her ‘Don’t eat Mochi either!’, no one could have Mochi for new years in my family, even though it is a must-have food for new years in Japan.

Nowadays we live in a culture with an abundance of foods, but maybe by the early 1900s, Mochi was a delicacy, and we all worked hard until the end of the year so that we could have some like rewards for ourselves.  I was told that when they would be eating Mochi I would say, ‘Please give me just one bite, please!’. 

After that my parents would only eat Mochi at night time, after I fell asleep.  It must have been thrilling for my parents to sneak out of my bed room craving for Mochi…LOL!…I bet they enjoyed this Mochi very much!….lol

 

 

As you can tell, we strictly and thoroughly committed to diet therapy, but we did not see any improvement whatsoever.  My condition did not improve, and all of my family members ended up losing weight….LOL!!

 

 

For many decades, I have had this condition, and some of my friends even call me The Pioneer Patient of Atopic Dermatitisjokingly….however, even though I have such a long experience of AD, have never experienced diet having an effect on my condition like,

‘Because I ate this, my condition has worsened’
‘I am flaring today because I ate too much sweets yesterday’

 

Medically, there may be a correlation with diet and skin, but many AD patients including myself do not see a direct correlation.
When I was hospitalized at Hannan Chuo Hospital in Osaka, Japan, many of my patient friends said the same thing.  This is just my opinion but a balanced diet is the most important for healthy skin but not unbalanced one.  (i.e.  Like too much chocolate and too much something…are not good for anyone!)

 

My mother, who after thoroughly committed to diet change also told me,
Eat anything you want, restricting your diet did nothing for you.’
However, I want to remind you that the dietary advice was from long time ago, and as contemporary medicine has advanced, many things may have changed as well.  I am just sharing what was true for myself.

 

Going back to my story…

 

As my mummy condition did not improve at all, my dermatologist prescribed me an expensive Medicinal Cream from the U.S.A., and told my parents to ‘Rub into the skin thoroughly.’  At that time, only the doctor would apply this special cream onto my skin, and I remember feeling like a V.I.P….hehe.

 

As you probably suspect already, the cream that they were applying on me was a TOPICAL STEROID‘(TS).

 

 

Back in the days, I had an impression that no one knew of Atopic Dermatitis or Topical Steroids and was feeling there weren’t so many patients with it.  Many times they called it Eczema, and even if children had it, many outgrew it overtime.

However, this Mummy baby with some blood showing through the bandages showed no signs of improvement.

My parents felt so badly for me, and took me to the hospital every single day to have my bandages changed.  They truly cared and did everything they could for me.

After applying the new special cream, Topical Steroids, I began to have some good days, and when they did not apply bandages on me, they said I looked confused.  The bandages must have felt like they were uniforms for me!…LOL!

 

 

(After this, because TS complicated my dermatitis, even if I would apply TS, the symptoms would subside for a little bit and come back with a vengenance.  I became heavily addicted to TS, and would not be able to function without using them every single day.  Eventually, they started not to work at all.  Finally, four years ago, I completely quit TS, and my body has recovered enough to have ‘Normal’ skin without TS.  I cannot be happier!)  Note: as of 30 Apr 17

 

What am I trying to say with all of this…?

 

I was a bandaged baby that looked like a Mummy.
No one told me that I was cute.

 

 

However

I do not remember any of this.

 

 

I have only heard about the above statements from my parents.

All that I remember is that the doctor was the one that would apply the ‘Special Medicine’ at the hospital, irradiated purple light on me, how they would be mixing the medicine with what looked like a cake spatula, the smell of medicine…etc….

 

 

Excluding my eyes, nose, and mouth, I was covered with bandages, but I could breathe, I could eat, and I was loved by my parentsBecause of this, I do not remember writhing in discomfort and pain.

 

 

I can only imagine that from the intense itch, lack of sleep, and overwhelming discomfort, the Mummy Baby must have cried a lot.
My parents were probably more distressed than I was, wanting to help me in any way possible.  It was impossible to imagine the heartache of theirs by the Mummy Baby.

 

However, after I would cry out my eyes from the itch and pain, my kind parents probably held me, and hugged me tightly.

 

 

For the parents who feel horrible for their children who are going through TSW (Topical Steroid Withdrawl)…..

For the parents who used TS on their children, and now their skin is flared and your heart is hurting…..

 

It’s ALL going to be ALRIGHT!

You just need patience for a while….

 

Even if your child is currently suffering immensely, and even if you feel completely helpless to see him/her, in the future, most of them forget about the pain.

 

They will heal !

 

Even in the history of human kind, I am one of the longest users of Topical Steroids but such a person like me is increasingly seeing the impact of natural healing power of human beings.

After stopping TS and moisturizers, my skin is becoming stronger obviously.

 

 

Baby Atopic Dermatitis heals naturally with time.

When we apply TS, the inflammation goes down quickly, but this is just suppression, and after that, the problem becomes even more complicated and intractable.

I am the perfect example for this, meaning, am the testimony of the effects of TS on the human body.

 

 

Maybe for some reasons, God or some force wanted you to become stronger, and he may be temporarily giving you this challenge.  By overcoming this, you will not only become stronger, but you will also become kinder.  You must grow from this experience, and use it for your advantage in the future.
Please don’t waste this opportunity = ‘painful experience, like regretting or lamenting, and make use of it.  That’s all you have to do.

 

There is no reason for you to regret using TS on your child.  You made a decision to quit it, so that’s good enough. 

You believed that it was the best thing to do in that moment, you did it out of love, and not because you wanted to hurt your child.

 

Because it was an act from love, you have no reason to regret your actions.

 

If it would help your child if you cry and regret, go ahead…..but you know that this does not help them.

 

Time passes equally for all of us, and we are the ones that decide which emotion to feel.  Please do not spend your precious time regretting something.  The time you spend regretting is a valuable minute of your precious life.

 

 

While you fight this condition, to make this time a valuable one, please just look into your child’s eyes with a BIG smile

Afterwards, you will be able to say, ‘That was one heck of a ride, but it was a good experience for all of us!’ 

If you can spend this time loving your child, it is more than enough.  You are already wonderful parents!

 

 

The used-to be mummy baby does not have a grudge against her parents.
My parents thought in the best interest for me, and bought an expensive medicine (at that time) for me.
I do not remember any suffering that I went through.
I can only remember the things that I am thankful for my parents.

 

It must have been very hard for my parents to raise me while I had such horrible symptoms.
Even then, my parents raised me wishing that I would of course outlive them.
Even if I looked very odd (…LOL!) they must have felt happy that my condition was not a life threatening illness.

 

 

In the future, your child will, for sure, thank you too.

Please look into their eyes with a warm smile while you care for them.

Please realize that just your child is being there with you is something to be very thankful for.

Please be grateful for your son/daughter’s life.

 

When your child goes to sleep, whisper to them…

‘You were born to make me stronger, weren’t you?  Thank you.  Mom (and Dad) is going to protect you with everything I haveThank you so much for being born.’

 

 

You are heading into the bright future…1 second, 1 minute, you are getting closer.

You will get there…Please know everything takes time.  Accept this time for healing.

 

 

When we look back, raising a child goes by so fast.  Please enjoy this precious time.

 

Please feel thankful that your child is close with you, and take pleasure in his/her being alive.  You have reasons to feel rejoiced.

 

Cheers for another day for being with your child!

 

Have a GREAT day!

 

Translated by Hikari M.
Edited by Tokuko Abfab

 

 

   👇 See this post below also!  👇 

You can see improved kids’ symptoms w/o TS.

You can manage Atopic Dermatits without Topical Corticosteroids!

 

   

  👇 オリジナルの日本語ポストはこちら 👇

                                The original post in Japanese

ミイラ赤ちゃんだった私から、アトピっ子のお母さんたちへのメッセージ

 

 

 

#Tokuko’s Room to Feel Upliftted       #tokuko’sroomtofeeluplifted


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