Wednesday, April 25, 2012

Boy on TSW : he wants to awake from a coma and be done with this


Not trying to scare you but trying to make some of us THINK HARDER!!

His name is Z and he says "he wants to awake from a coma and be done with this"

This is his story from his mother :
Unfortunately, he has been on steroids since he was about 2 or 3 months of age. He will be 13 in May. I have always been searching for ways to handle his eczema better but have never come across anything about topical steroid addiction until last month. Reading Kelly's page and Dr. Rapaport's article was as if they had wrote itabout him. In fact, the night I found it, I could hardly sleep because for once, I finally had hope for him! Originally we did start out on low dose steroids... however they were steadily increased when they "weren't working anymore." For the past couple of years I have been telling the derms that we need to quit putting bandaids on the situation and figure out what is really going on... that it continues to get worse even though they are using the strongest steroids out there (Z recently had another three week round of prednisone and was on clobetasol- the strongest ointment out there). The derms said that sometimes eczema changes course as they start getting close to puberty and that could be why he had eczema all over his body- especially his rear end, thighs and face. Finally they suggested that maybe it was time to go over the hill to UCSF or to a derm in Oregon. Believe me, I am sick about what he is going through. I always knew there had to be something more to it than him just hitting puberty as we are such sticklers on everything we do to control it (removal of carpet, air purifiers, humidifiers, showers nightly, creams/lotions, restrictions of friend's houses he could go to, allergy shots, etc) that I knew we were missing something because it just kept getting worse. I just thank God that I finally found Kelly's website... wish I would have found it years earlier, and will do all that I can to help others out there in similar situations find out about this sooner than we did. Again, thanks for the support everyone. The damage that steroids cause is truly a crime and needs to be stopped!

It's ok to call me reckless...

It's ok to call me reckless...

Good day!
Well I've been busy trying to get this site up from my Malay blog that I totally forgot to put a disclaimer at the top just like the one in the Malay blog, so there you go - sorry to be so reckless

I am still not a "huge" fan on topical steroids - neither are my friends and I do have a personal reason for doing so. But I think education and research is a very very important part when deciding personally what you should and should not do. I understand that each person's eczema is different and each person's management is different - there no 1 size fit all.

For me myself, I went to see an Immunologist instead of a Derm and got a totally new management all together. I don't mind being called reckless. Not many people (except for those in the AAE group) know me personally and how I have worked towards my own management.

I also have a few adult sufferers who aren't even having "a few patches" here and there. They are practically BURNING head to toe, red and raw. I dont have to say much. Just go to these websites to know.



Joey Brown's :
http://redskinsyndrome.squarespace.com
http://jseven.hubpages.com/hub/My-Topical-Steroid-Skin-Addiction-and-Withdrawal-Story

Kelly's blog:
http://theboythegreekfireandme.blogspot.com/

Liz's blog:
http://eczemahealing.blogspot.com/

and the others as well on the Google Group ( https://groups.google.com/forum/#!forum/cure-eczema-by-stopping-steroids )
http://topicalsteroidwithdrawal.blogspot.com/
https://antisteroid.wordpress.com/
http://www.topicalsteroidcream.com/?page_id=168
However reckless can I be, it may seem that there are also doctors who are reckless as well..
Pediatricians who Prescribe Clotrimazole-Betamethasone Diproprionate (Lotrisone) often Utilize it in Inappropriate Settings Regardless of their Knowledge of the Drug's Potency
Divya Railan, Jill K. Wilson, Steven R. Feldman, and Alan B. Fleischer, Jr.
Dermatology Online Journal 8(2): 3

Department of Dermatology, Wake Forest University School of Medicinea

More and more mothers are saying "NO thank you - we dont need steroids" to their own doctors and derms on my group. In Malaysia we have a huge problem with the appropriate use of topical steroids that it is gone beyond what it is meant to do - the below baby was 1 months old and given "betamethasone". Photo was taken 5 months after.


So really...am not telling you what you SHOULD or SHOULD NOT do. I am just here to tell my story and those who understand my drift. 

Mimi 1st day off Topical Steroids
We were applying TS since she was 6 months old


90 days without Topical Steroid

Bamboo Bubby now available in Malaysia & Singapore

Bamboo Bubby Bags can not only relieve the severity of infant and toddler eczema flare ups, but its unique design provides ultimate comfort and value.
Bamboo Bubby Logo

Bamboo Bubby Bags
NOW AVAILABLE
IN
MALAYSIA & SINGAPORE

 

Bamboo Bubby is excited to introduce our Malaysian stockist Babies Wishes Inc.

Babies Wishes have an online store using Facebook at:https://www.facebook.com/babieswishes
They have just put Bamboo Bubby up on their site and are currently taking Pre-orders while the bags are being sent to them.
You can also send an email to Anicia who runs the business at babieswishes@gmail.com for further information.

Anicia also runs a great Facebook Group called Babies Itch free Just skin deep away which you can ask to join to ask or read advice from other parents about your child's eczema issues.

Allow skin to heal

Allow skin to heal

The Bamboo Bubby Bag™ is the ideal product for healing baby eczema and breaking the itch-scratch cycle which is one of the most distressing factors for both you and your baby or child with eczema.
It's enclosed sleeve design and beautifully soft fabric will stop your baby from scratching during sleep times (or in the pram or car when it is also difficult to minimise scratching) allowing much needed healing to occur.
One size saves money

One size saves $$

Clever design grows with your baby
 
There are so many expenses when you have a baby, the last thing you need is to have to continually upgrade the sleeping bags as your baby grows – and they grow so quickly!
The Bamboo Bubby Bag™ is an innovative design with adjustable sleeves allowing it to fit your baby throughout their entire first 2+ years.
Use in all seasons

Use in all seasons

Made of extra soft 70% bamboo & 30% organic cotton interlock fabric, which along with many other benefits to sensitive skin, also consists of fibres that expand when warm to let skin breathe, and contract when cool to trap heat close to the body.
It will not only keep your baby's body temperature regulated and prevent additional itching from overheating but also keep them warm in the colder months.
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