My 4 year old son Suffering from Red Skin Syndrome

Update posted by Irhamna Taib On Jul 21, 2017

We have been following Dr Sato's method since March minimal to no moisturizers on his skin. The stubborn oozing Patches on the back of his thighs are making me very worried. They are spreading and I've been controlling the infection with pure turmeric juice only or nigella sativa oil. Still waiting for positive updates on the treatment results by another fellow mommy as they consulted the Taipei TCM in Kuala Lumpur recently.

Below are latest photos of my boys

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Update posted by Irhamna Taib On Jul 21, 2017

We have been following Dr Sato's method since March minimal to no moisturizers on his skin. The stubborn oozing Patches on the back of his thighs are making me very worried. They are spreading and I've been controlling the infection with pure turmeric juice only or nigella sativa oil. Still waiting for positive updates on the treatment results by another fellow mommy as they consulted the Taipei TCM in Kuala Lumpur recently.

Below are latest photos of my boys

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Update posted by Irhamna Taib On Jul 21, 2017

We have been following Dr Sato's method since March minimal to no moisturizers on his skin. The stubborn oozing Patches on the back of his thighs are making me very worried. They are spreading and I've been controlling the infection with pure turmeric juice only or nigella sativa oil. Still waiting for positive updates on the treatment results by another fellow mommy as they consulted the Taipei TCM in Kuala Lumpur recently.

Below are latest photos of my boys

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Update posted by Irhamna Taib On Jul 20, 2017

After Ihsan's recent asthma attack on 29th June 2017, his skin stared to rebound and worsen again. He was given oral steroids for his lung inflammation. The doctors had to follow the standard protocol although we had tried an alternative medication to reduce the I lung inflammation. We are still awaiting Dr Sato's reply although he has advised before to consult him personally again.

At the moment our flat is undergoing HIP (toilets upgrading project by HDB. Although we tried to opt out, we couldn't as our toilets and kitchen pipes were already 30years old. So I had to make arrangements with HDB to rent a one room flat for that 2 week period. Since Ihsan is very sensitive to dust and due to his skin condition, I wrote in to HDB a few months earlier for them to give us a temporary solution. They allowed us to rent a one room unit. About $150 per month.

This HIP project has proven to be tough for us as we had to shift most of our things to the rented place. We had to clean the rented place, buy necessities for toilet usage and cleaning supplies. We have no idea how we are going to manage to clean our own house after the upgrading project either. We were upset that we even have to fork out cash $380 to replace the kitchen pipe as it was cast iron and the contractors are charging us for the dismantling and fixtures of our existing cabinets. We even have to pay with or own pocket money for new toilet accessories like shower head, tap mixer etc.


At this point I'm feeling disheartened with Ihsan's frequent asthma attack and I believe we cannot even make another trip to Japan this year to consult Dr Sato. Too many things happening with our flat, living arrangements affected and another trip to Japan seems impossible.

Another mom who's son is going through a similar condition as Ihsan (although her son does not asthma) was recommended to consult a tcm clinic in Kuala Lumpur called Taipei TCM. The other children who had severe eczema and TSW/ RSS (topical steroid withdrawal/ Red Skin Syndrome) successfully improved after following the herbal routine.

I'm slightly skeptical as I want to know if the creams and spray provided by The tcm contains plant steroids. The other mom will update me if her child will rebound after weaning off the herbs and if she manages to get the cream tested by HSA soon. I will wait for another week or so for news from her side. I'm hoping it will be a life saver for Ihsan as 2018 is approaching soon and I'm worried if he is able to attend Kindergarten 1 next year.

To the kind generous donors, your support has helped Ihsan n our family in this difficult times. I know we all pray and hope for the same thing that he leads a normal healthy life soon.

Below are the photos of our current situation, our flat is undergoing the HiP project and we are staying in a rented unit.





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Update posted by Irhamna Taib On Jun 28, 2017

Just last night, Ihsan started showing signs of runny nose, coughing with phlegm and slight fever. He caught the cold bug from my Older child and husband who have just recovered from their colds right before Hari Raya. I do not understand why his asthma is occurring more frequently now. This is his 3rd time this year. We are monitoring him and will definitely bring him to A&E again by tomorrow if there's no improvements tonight. I've given him his nasal spray, nasal drops, vitamins and even his inhaler quite often since the wee hours of this morning. Feeling quite defeated at the moment.

On a side note, Dr Sato has replied to my email. Still trying to find means on how to make another visit to Hannan-Chuo Hospital again. If there is no other way, we will try light phototherapy here in KKH for his skin but I'm trying to avoid that treatment since it's advisable only for children above 12 years old and adults.



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Update posted by Irhamna Taib On Jun 19, 2017

So we waited out till 3 months and followed Dr Sato's instructions. Ihsan's skin seemed stronger compared to this time of the year in 2016. The itch is still horrible at night. His wounds after scratching every night has a different appearance compared to many months before. Although still oozing and open wounds especially on legs and thighs, they are not infected which is good. Dr Sato replied to my email last week after I showed him recent photos of ihsan's skin. Ihsan may need to visit him again for him to check Ihsan's skin condition and elasticity overall in person. Although we do not have the means to make a trip there again. We are trying to find other alternatives to speed up the healing process hopefully if we cannot pay for the next trip to Osaka agaYour prayers are greatly appreciated. Attached are photos of his skin now. Knees and back of thighs are badly oozing. So everyday we still continue dry bandaging him to prevent further broken skin when he scratches at night. Ankles and toes are problematic still too. He's face flares comes and goes. May he heal fully soon insyaallah.



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Update posted by Irhamna Taib On May 18, 2017

So we made it to Tangkak, Johor, earlier today. Ihsan did his allergy test with the well-known Dr Wong. Guess what! He's allergic to eggs (anything with eggs) & dustmites (which aggravates his asthma)! We love the way the test was done.

No skin pricks or drawing of blood. Hopefully he'll improve by the next follow up visit in 3 months.

Dear followers please don't misunderstand, Ihsan is still going through Topical Steroid Withdrawal - Red Skin Syndrome as it is a long process. We do the allergy test to get accurate results as to what foods he should avoid triggering his flares and asthma. Because the precious blood tests we did were not accurate as the results showed that he can't eat almost everything! During the TSW, most blood test results won't be accurate when you are i the beginning/early stages of it (as we've learned) because your immune system have gone haywire. This since he is at the later stage now( healing much more), it is a good time to do accurate allergy test & we were recommended by Malaysian friends to consult with this specialist.

Receipt will be updated the next few days.



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Update posted by Irhamna Taib On Apr 26, 2017

On April 16th, Ihsan was coughing continously. By 7.45pm, it got worse. His inhaler did not help eventhough I have tried best to follow the asthma action plan that he had. by 8.45pm, we had to rush him to KKH Children's hospital.

It was a long night. We had to wait till the doctors tried atrovent and ventolin on him a few times to see if those will improve his condition since we have informed the doctor to avoid administering medications with steroids as much as possible.

However by 2am on the 17th April, seeing Ihsan having difficulty breathing the whole night and having chest pains, we have decided to let the doctors decide what is best for his breathing. He was struggling to breathe still, even with alternative medications. He was crying in pain and waking up every 2 hours.

By 8am, we were eagerly waiting for the lung specialists to attend to him. After a long discussion, the head of the team, Prof Ann Goh, decided to focus on giving him Nasal spray and nasal drops for him as she suspected he has upper respiratory infection. The nasal spray has minimal steroid content and we decided at that point of time his breathing was more important than his skin so we gave it a go.

The respiratory team was so helpful and understanding. They did their best to heal Ihsan's asthma with the few alternatives that we discussed together. They even got the Dermatology team came to take a look at him.

However just as expected, they were not willing to accept with an open mind that Red Skin Syndrome exists! I'm The head of the team said he will email Dr Rapaport. I doubt he will do so. I am still waiting for his email as I mentioned to him any emails or liaising with Dr Rapaport between the both of them will be charged to my account. Unfortunately at this time, the funds are not sufficient. We might skip that option altogether since the head dermatologist from the children's hospital was also reluctant to assist us on alternative methods to help with ihsan's condition. The most he could offer us was to adhere phototherapy on Ihsan. I am trying not to make my son try new things exposing him to chemicals or radiation as much as possible. The risks of phototherapy are quite scary.

What should I consider before starting phototherapy?

Before you start phototherapy, there are some things to consider:

  • For it to be effective, phototherapy generally requires 2 to 3 treatments per week in the office.
  • Risks: burns, increased aging and increased risk of skin cancer over time are all significant risks with any type of phototherapy. Eye protection must be worn for every treatment to prevent damage to the eyes.




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Update posted by Irhamna Taib On Apr 06, 2017

So shocking seeing the charges from Dr Rapaport. We have not even got a pediatrician from SG who is available to liaise with him directly regarding Ihsan's condition!





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Update posted by Irhamna Taib On Mar 27, 2017

A fixed date for the phone consultation has yet to be confirmed. So payment has been made and we are looking forward to find out on his point of view on TSW (topical steroid withdrawal) and RSS (red Skin Syndrome).



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