AN EDUCATIONAL POST

I thought I should explain a bit more about Topical steroid withdrawal as this is what my babies are suffering from. Once upon a time they had 'normal' eczema...now they have steroid induced eczema. This is why we are not using steroid creams anymore, the damage has been done by them and now we are working hard to get our children well again. It will take time but we will get there. Oscar climbed to the top of the ladder in terms of steroid potency and they no longer did their job-this is why he is on Immune suppressants. Last week we were prescribed Dermol-a very potent steroid cream for Harry. I told the doctor I didn't want it and she said it's best to use it for when the patches of eczema come up because if we don't it will flare up even worse and this will be a knock on effect to the rest of his skin. Harry doesn't have patches of eczema, he has a bright red rash all over his body. It took three days to appear after ceasing steroid cream! You have probably guessed that I didn't get the prescription filled. The pharmacist put a big fat line through the Dermol, I felt quite satisfied seeing this! We have not completely gone cold turkey with Harry just yet... We will be next week though.
For anyone following this blog or for anyone that stumbles across it I want you to know that we love our children very much. We would do anything to take their pain away and for them to not have to go through this. We haven't made this decision lightly. Oscar has been dealing with this for five years and had we known what was actually happening to his wee body then this whole process would have been over and done with a long time ago. We have done everything possible to get him better over the last few years and nothing has worked. We didn't know that what we were dealing with was bigger and nastier than eczema. With the help of the Immune Suppressants Oscar is coping reasonably well with steroid withdrawal. The backs of his legs have the most healing to do. He has come such a long way in the last few weeks. Mentally he is exhausted, grumpy and irritable..not our usual happy wee guy. I believe this is possibly a combination of steroid withdrawal and the methotrexate. Harry didn't reach the highest step of the ladder for steroid creams and hasn't been on them for as long as Oscar so we have no idea what we are in for with him..I will let you know though!        

To family and friends close to us, please believe what we are doing is the right thing for our children. Please accept that we will not be using topical steroids on our children as they are the reason why our children are suffering. We need your care and support more than ever right now.

Below is some more information on Topical steroid withdrawal.
Just this year, submissions have been made to parliament to get Red Skin Syndrome recognised as a medical condition in New Zealand. Hopefully it is only a matter of time before those who are suffering can get the medical support required to help them through this.


What Are Topical Steriods?
Topical steroids are also called topical corticosteroids, glucocorticosteroids, and cortisone. They come in many different preparations including creams, ointments, oils, gels, and lotions. Some are 
sold over-the-counter; others require a doctor’s prescription.

What Is Topical Steroid Withdrawal?

Topical Steroid Withdrawal is the process by which a patient ceases all application of topical steroids. The withdrawal process will often result in a rebound phenomenon that is painful and difficult for the patients.

How Do I Know If I'm Addictd To Topical Steroids

Signs of topical steroid addiction include

1) Inflammation of skin does not reduce despite repeated application of TS.

2) Skin becoming more inflamed after TS application.

3) There is a continued need to use stronger and higher potency TS to maintain your current skin quality and to keep your inflammation symptoms under control.

4) Rebound phenomenon, or more commonly known as Topical Steroid Withdrawal symptoms, occur 

when TS application is ceased.

What Are The Symptoms of Topical Steroid Withdrawal?

Common symptoms experienced (and not exhaustive) are:Burning red skin, oozing, puritus (systemic itchiness), flaking skin, dry skin, thinned skin, inflamed skin, edema, temperature dysregulation,
insomnia, weight loss, hair loss, swollen lymph nodes, nerve pains, hypopigmentation,,  stretch marks, growth suppression, adrenals suppression (Hypothalamic-pituitary-adrenal axis suppression), loss of appetite, fatigue, depression, heightened allergic sensitivity to food and environment, glaucoma, hyper tension, Cushing’s disease, hypocalcemia.

These TSW symptoms lessen in intensity, severity and duration over time. Rebound flares of severe intensities are noted to have occurred in later stages of the recovery periods.

***Information taken from  www.saynototopicalsteroids.com

Lastly a couple of photos. One of Oscar's legs and one of Harry's skin. Sorry for such a novel!