As most of you know, the only NMT (No Steroidal and No Moisturizing Treatment) doctors are in Japan. This method was advocated by Dr. Kenji Sato (Osaka, Japan) officially in 1994, but he discovered the condition of TSW (Topical Steroid Withdrawal) long before he publicly shared. He actually started the protocol prior to 1994 trying to learn from the patients. Then he discovered that TSW couldn’t be healed with just ceasing steroids, meaning, you need to cease/stop use of steroids as well as ALL kinds of moisturizers in order for the protocol to be successful.
***This included wearing loose fitting garments rather than tight against the skin, avoiding to wrap up with bandages or to put on thick comforters, not over cleaning or bathing with soaps or other chemicals and so on…Most of us tend to imagine to apply lotions or creams once we hear ‘moisturizers‘ but these types activities and more similar ones are ways that unintentionally act as ‘moisturizing’ treatments. ***
**Refer below article for ‘Moisturizers‘
What can be Moisturizers? – For fellows lanuching ‘No Moisturizing Treatment (NMT)’
However, it is not socially accepted as a major treatment though even the results are amazing. ‘Topical Steroids’ is the major and standard treatment designated for Atopic dermatitis by the dermatologists’ academic conference in Japan even though there’s no evidence of healing results. Most dermatologists prescribe them and it is very difficult to find non steroidal doctors even in Japan.
Dr. Sato has been advocating NMT and has been helping tons of TSW sufferers for more than 3 decades with successful results. Patients are visiting Osaka to be seen by him from all over Japan.
Dr. Kenji Sato gives free large scale lecture meetings frequently with other NMT doctors (Dr. Mitsuko Satou, Dr. Shigeki Fujisawa and Dr. Satoko Minaguchi) traveling all over Japan for awareness of the danger of Steroids, Protopic and Neoral (=Ciclosporin/Cyclo). He also holds classes after work for inpatients, answering questions on the website with his wife Dr. Mitsuko Satou (a NMT super pediatrician), teaches NMT for doctors who are interested in, guides other young doctors, etc….As you can see, his busy life makes it hard for him to share the info with the world. However, his message is spreading as patients’ groups supporting him and other NMT doctors are growing.
I wrote an article to share this great method to the world in English getting approval from Dr. Sato (in Nov 2017). How to get over Topical Steroid Withdrawal asap!
Since I’m the testimony who got well amazingly from VERY severe case within 3 months with NMT, I thought I had to share this great method for all TSW sufferers in the world. I totally understand how tough the symptoms are so I really wanted to help others who are struggling without solutions.
Fortunately, the article spread all over the world very rapidly and it reached many worldwide as you can see below.
A lot of TSW sufferers started to learn NMT with this blog and NMT support groups that I established last year at the same time.
Within a few months, I began to receive SO many messages with appreciation from all over the world. (**Sorry, I can’t respond to all of them but thank you very much for your nice messages! ) They mastered NMT and were healed or improved amazingly.
And then, unbelievably, the healed members started to share the information spontaneously!
It was a game changer for them so they were glad to pay it forward sharing the protocol.
The NMT masters’ dedication is really energetic and they started to help the world sufferers together! The numbers of sharing people are increasing day by day!
Some shared it with SNS, (Facebook, Twitter, Instagram, Reddit, etc….)
some brought my blog to their dermatologists asking their support to accomplish NMT,
some shared their ‘Before and After‘ pics to encourage and help other sufferers,
some shared the pictures to show the healing process with chronological order and explanation,
some shared their personal notes about what they learned in their language,
some offered me to help the operation of support groups,
some translated my blog articles to each language,
some got interviews to share their experience bravely with medias and other non-steroidal groups,
some established NMT support groups in each language,
…and so on!
It’s actually spreading throughout the world day by day rapidly. So many people are taking actions to help other sufferers/caregivers to experience the agony of the side effect of Topical Steroids and amazing recovery with NMT. They are working with their deep love to others. Don’t you think it’s REALLY wonderful?
Today, let me introduce two of NMT masters’ (caregivers) reports.
First report below is written by Ms Jannelyn Lechelle from UK. She learned NMT reading this blog articles over and over and her son got well amazingly fast. Her NMT knowledge is excellent! After she became a master of NMT, she has been helping sufferers as one of admins of the support groups.
Here is another update on the progress of my son’s ankle. He is currently 168 days NMT and 8 months TSW.
As you know from my last post, he has been swimming for almost 8 weeks with no reaction to the chlorine in the water. His whole body is clear – not a sign of normal eczema starting either.
As for the NMT protocol, he is drinking whenever he is thirsty so no water restriction. He has quick showers twice a week and doesn’t apply any type of cream or moisturizer on his skin after a shower. He continues to sleep 9-10 hrs a night and can eat all types of foods without any reaction. A balanced diet is still important for a growing child so I maintain this.
Last month, the top part of his ankle had this ‘thick and spongy texture’ accompanied with fine, white powder/dust. I call this elephant skin. This month, from my observations, the thickness has lessened considerably and the powder is gone. The skin is now a little scaly and no longer sheds. It also appears dry but it is not itchy.
Looking back at the whole TSW nightmare, we tend to worry about the possible infections, about the many symptoms, how bad it looks, wondering when it will get better or is it becoming worse?
Having gone through this journey with my son for 8 months, what kept me going as a parent was acceptance and a positive mental outlook. Even before I stumbled upon NMT and Tokuko’s Blog page, I kept reading, doing research, finding out as much as I could about how to heal my son from his terrible symptoms. Without this determination, I have no idea what I would have done.
I followed the NMT protocol blindly without doubting it, and just kept going. Seeing the before and after pictures of Tokuko was a game-changer for me. I thought if she could heal from her symptoms, then so can my son.
The suffering my son went through taught me patience. Then patience taught me perseverance. The perseverance then gave me hope – hope that one day, he would heal.
I am forever grateful that this NMT group exists because Tokuko has worked so hard to spread the NMT awareness out there. I see many more parents who are willing to try the NMT protocol to heal their child. If you do commit to it, patience and perseverance is key. Don’t dwell on the symptoms or worry too much. The protocol is your guide, so learn it well, read it over and over again and make sure you don’t miss a thing.
Everyone will have different healing times and some parts may take longer to heal. Try not to compare your healing journey to others, this will only discourage you. Not everyone will heal in 90 days either as most of us are not at the hospital with Dr Sato watching over us all.
Below, I have complied a guideline of the different stages the skin goes through when healing. This information is taken from my notes, photos and the close observations I made with my son. Some of you may find it useful, others may not, but feel free to use it as you wish.
1. The Inflammation Stage
Symptoms: Red, hot, bumpy, broken skin, sometimes swollen, itchy, wet, oozy, painful.
This is the stage where the skin goes into shock as the medicine usage has ceased and the skin and body need to re-adjust itself. Blood vessels dilate to allow essential cells; antibodies, white blood cells, growth factors, enzymes and nutrients to reach the skin area. This may lead to a rise in exudate levels so the surrounding skin needs to be closely monitored.
Limiting all types of moisture (bathing/creams/intake of fluids) at this stage is important to reduce ooze and the possibility of infection setting in. Sleeping during the hours of 10am – 2am is crucial for healing as growth factors are released during this time at night. A balanced diet will help the skin obtain all the nutrients it needs. My son was stuck in this Inflammation stage for two and a half months because of the daily foot-baths and creams applied to his skin. Too much moisture. If anything, his skin became a lot worse. As soon as we initiated NMT at the beginning of January, his skin started to change and move to the next stage which only took around seven days.
2. The Proliferation Stage
Symptoms: Less redness, Intense deep itching, increased dryness, stiff skin, thick crusts, lots of flakes, ooze and blood, swelling, skin feels hot, nerve pain, zingers, possible infection.
Allow crusts to fall off by themselves. Do not pick or force crusts off.
If dried out properly, skin can start to form crusts/flakes over the surface to protect the rebuilding of new skin underneath. The body produces collagen to form new skin tissues – protein and fats in diet are required to do this. The unbelievable ‘deep’ itch results from the new network of nerve cells and blood vessels being formed underneath the new skin.
As new temporary layers of skin are pushed up, the skin sheds very quickly, producing lots of flakes! This is encouraged by itching and scratching until the skin becomes thicker and drier. Tokuko describes this stage as having ‘ugly skin’ and many tend to think that the skin is aggravated. Some give up during this stage and return to bathing and applying creams. Then the Inflammation Stage starts all over again.
My son stayed in the Proliferation stage for 97 days before moving on to the last stage of healing. Believe it or not – the repetition of scratching and drying made his skin stronger.
3. The Maturation Stage
Symptoms: Dry skin, fine white powder, white dust, less itch, no redness, softer skin, spongy feeling, elephant skin.
This final stage is when the new skin no longer breaks when scratched. The new skin feels thickened and spongy as the tissue used to create this is slightly different. The Fine, white powdery surface can take some time to thin out. This phase involves remodelling of collagen from type III down to type I.
Cellular activity reduces and the number of blood vessels in the skin area regresses and decreases until the skin produces its own oils and is normalised back to soft, smooth skin. This is the stage my son started swimming and is currently at Day 57 and still counting. The bottom and middle part of his ankle are already normalised, just allowing the top part to continue to smoothen out slowly.
Thank you for reading. Happy healing to you all 💗
The Next report is written by Ms. Joyce Fang from Australia. Her understanding of NMT also is outstanding and she has been helping parents who have TSW/AD kids and babies in Chinese speaking society as a bilingual. Her support for world sufferers is excellent working as an admin in the NMT support groups.
Some thoughts on babies, about solid food, breastmilk, formula.
And some healing photos
It’s created a little bit controversial tonight, since I’m a mum who is breastfeeding my 16 months son and receives a great result from NMT within half year, I’d like to share some of my thoughts and experiences on this. Please do correct me if anything wrong. And please follow NMT doctor’s instructions as strictly as you can, you will have great result!
Firstly, I think breastmilk is still good during NMT, like people mentioned here, for immunity. Good immune system accelerate healing and reduce the risk of infection. Also, breastfeeding is a great comfort tool during NMT. Happier baby, happier mum, faster healing. Breastmilk has too many other benefits compare to formula, like long chain fatty acids to support brain development, etc. I believe NMT doctors fully understand and have more knowledges than us, as Tokuko mentioned this.
However, breastmilk has less protein compared to formula. And we all know protein loss is a problem during TSW for many people, we need to increase protein and fat intake (although breastmilk has higher fat compared to formula). We also know too much water intake delays recovery. So, this is the downside of breastmilk, since we can’t reduce water in breastmilk. If we try to increase protein intake from breastmilk, we increase large amount of water too. It’s a dilemma here. On the other hand, it’s easier to control the water volume and plus it has higher protein in formula. So, for the babies who need to boost their protein level and who hasn’t on solid, switching to formula is a choice.
But it doesn’t mean every NMT baby needs to stop breastfeeding. That’s why Tokuko mentioned babies can have solid food earlier. Someone may argue baby under 6 months shouldn’t have solid. But the reality to this really depends on each baby, someone just can if they are ready. Tokuko mentioned. My son started solid on 4 months even we didn’t have TSW.
Breastfeeding or not, or when should baby start on solid is really depending on each one’s real situation.
Here are some experiences and thoughts from me and some other breastfeeding mums who are doing NMT currently:
To mums who don’t want to switch to formula, and determined to get benefits from breastmilk for long run and do NMT at the same time:
I would firstly eat more protein and fat and a bunch of nutritional dense vegetables (not too much fruits) myself.
1. Baby Within 6-month-old or hasn’t on solid: I could switch to a mixed feeding strategy, but maybe majority is formula for a while if the baby lost too much protein (usually sever oozing stage). I could feed formula first and maybe some bites of breastmilk for comfort and immunity. I could at the same time pump breastmilk out to maintain milk supply. I may increase breastmilk and reduce formula when skin is getting better, and maybe baby starts solid already. Also, I believe sever TSW for such young baby is not too common.
In addtion, 4 months old can start solid if they are ready, first food can be high protein food like meat. Diet is probably another controversial topic nowadays.
2. 6-month-old to 1 year old: Apart from same strategy above, I could feed him only high protein and fat solid food at this stage, which means no carbs from solid, especially during sever oozing stage. If baby have lots of high protein solid and skin is getting better, I may increase breastmilk or switch back to breastmilk.
3. 1 year above: It’s easy to control protein intake now, and baby needs much less milk. High protein and fat solid plus breastmilk only or mixed feeding, moderate protein and fat solid plus more formula or normal milk plus some breastmilk or no breastmilk. There are too many combinations according to skin’s progress. Just remember dry is better, protein and fat are essential during NMT. If you have time, do a record or digitalise eventing, you can figure out how much water and nutrition your child needs according to different circumstances.
To mums who stop breastfeeding because of NMT or other reasons:
• Although there are so many benefits with breastmilk, but babies can do also well without breastmilk. Formula gives lots of mums relieves, it’s also easier to count water intake and increase protein level for many babies.
• We always want to give our kids everything, but sometimes we should consider the most important things for different circumstances. We still can boost baby’s immunity in other ways, like giving them lots of love, letting them play around as excise, a balanced diet, etc.
Last, don’t be too stressful for what we haven’t done enough. If you have time and energy, you can choose to continue breastfeeding and NMT. If you don’t, you can try to find helper. If you don’t have time and helper and want to stop for healing purpose, just stop. If you have confusion, we have so many people here to help. If you feel depressed, you can vent into NMT support group or other TSW group, or messaging lots of people here. LOL
Thank Tokuko Kameda again and all the NMT/TSW doctors.
I will add some improvement photos to reassure NMT. My son is breastfeeding and doing great with NMT. I probably ask my friend to add her son’s photo later, her son takes formula and heals with NMT too. We both almost finish this hell within half year!
Wish everyone has a quick and happy healing!
Well, these reports are written by ‘mothers‘ who mastered NMT with this blog and NMT (No Moisturizing Treatment) Education Group on Facebook. To experience their child’s healing, they wrote and posted these reports in the group spontaneously to pay it forward. I was moved so much by their love to other TSW sufferers/caregivers because this is just what I really wanted!
NMT doctors are limited but there are many more numbers of sufferers than them all over the world…I thought “We must be able to utilize sheer force of numbers…!”
Even if you have zero NMT doctors in your country, if we assemble our knowledge, the power is going to be bigger than several doctors’ one. Once we put learned knowledge together in the group, a lot of sufferers can trust the information and can help each other…I believed that it would be the only solution without having NMT doctors except Japan. That is one of the reasons why I established NMT (No Moisturizing Treatment) Education Group.
As I expected, a lot of healed members began to post their experiences in the group to help others. However, since visual confirmation also is necessary always for sufferers, I established The NMT Healed Club (No Moisturizing Treatment) too. Right after that, healed members started to post their ‘Before and After‘ pictures there one after another to help and encourage others. Sufferers got to learn the process to do the comparison in need visually.
It’s not often but admins in our groups have heard that some members need to vent in the groups. We understand their feelings very much but believe that our groups’ role is different from other TSW support groups. Our groups should be the ones to provide solutions as much as possible from our experiences with NMT because many sufferers have been struggling without having any solutions for years. At the same time, we know sufferers’ sad stories won’t help others at all and affects to others’ symptoms and to the person’s too. Trying to use positive words will help you after all and it is the part of NMT. So we ask your agreement to our policy when we get requests to join us. We just want to help as many as possible effectively. Hope sufferers understand our groups’ role (=to share NMT accurate info) and my intention (the reason why I established the groups). Everybody should be able to get out of the agony asap to get effective solutions and no one should obstruct it, meaning, we need to think about others too in any situation. I believe, fundamentally, support groups are supposed to be like that.
You also can be a Master of NMT and your efforts to learn NMT will help your children from TSW. In other words, they will be helped by your accurate NMT knowledge.
Actually, tons of babies and little children are healed by Dr. Mitsuko Satou in Japan and many babies and children are coming with parents to be seen by her from all over Japan. Healed children’s parents listened to her and just followed NMT protocol seriously. I just can share this fact and you are the one who makes a decision. None of us forces you and choice is always up to you but once you had a strong determination to accomplish NMT, try to learn it hard and commit. Again, your accurate knowledge will help you.
***You need to learn and read all RECOMMENDED POSTS IN ENGLISH of this blog making your personal notebook and learn more in the groups.
The skin needs to dry before healing and at the dried stage, the appearance becomes bad and the subjective feeling of itch also becomes stronger. So your child needs to repeat ‘Scratch and Dry‘ over and over and it is uncontrollable for human beings. Parents tend to misunderstand that their child got aggravated to see the condition, however, need to understand that the skin lesions are getting better, meaning, completely dried skin is the beginning of healing process. Parents need to endure this tough phase. Just make sure that your child doesn’t have other sickness or infections and gaining weight normally with balanced meal getting his/her doctor’s advice.
I’m looking forward to seeing many other reports by caregivers who are trying to help other sufferers with their experiences on NMT Education Group. At the same time, I’m waiting for many more posts with ‘Before and After‘ pictures in The NMT Healed Club so a lot of caregivers can learn the process of NMT more and more.
We can help each other. Again, in any situation, we have to think about others who are in agony. Healed people are the ones who can understand the condition very well and can help others. Please do not finish your journey after healing. You will get the power to change the world then.
Healing happens to your child too! For your loved one’s wonderful future, hang in there for a while!