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! 

INTRODUCING HARRY

Harry hasn't been mentioned earlier, possibly because I haven't wanted to accept that we have two wee men that are struggling with eczema! I wish it was an easy fix with some creams and avoiding certain foods but just like Oscar we are going around in circles trying to figure out what's happening with Harry's skin. Maybe this blog page should have been called 'Our itchy boys!'
Harry is the littlest member of our family, he is turning two next week.
Harry has had eczema from around six months. I introduced formula to him and a few days later I got him from his cot in the morning and he was covered in an eczema rash. I took him to the doctor and he said don't change anything! ...and here's some steroid cream. We got a Rast test done a few months on and it came back positive to only cats. I had assumed already that dairy is an intolerance for him as the eczema kicks in after a few days of consuming dairy. So Harry has been dairy free from early on. However he has still been battling eczema. Things have been manageable with the use of steroid creams from the specialist but this year he has got worse. We have moved this year to a very dry climate so that won't be helping but it is also more than this. He is a mini Oscar with a red 'aura' on his face and body.. The last couple of months we haven't been able to keep on top of his eczema, even with steroid cream. So I'm not sure where this is heading for Harry. Steroid withdrawal? Immune suppressants? All I know is he is very uncomfortable and not sleeping either!!
How on earth is the Sloan family functioning right now?!! Purely on love perhaps!
Andrew and I are having night about with Oscar. Most nights Harry ends up in bed with whoever isn't with Oscar. Actually Harry has only ever slept through a few times and I'm guessing this is because of his skin. Thank goodness Charlie is an amazing wee sleeper.
Oscar had his usual three, maybe four hours sleep lastnight. It is a beautiful day today and he is on the couch snuggled up to me wrapped in towels. Sunday seems to be his low day, a side effect of the methotrexate I'm guessing. His skin is looking clearer but he is still intensely itchy.
I'm feeling pretty low today too, a combination of being tired and accepting that Harry's skin is possibly heading the same way as Oscar.  However we will do everything it takes to get the baby of our family itchy free too.

WISH CHIP

Last night we had nachos for dinner..well mince with a few nacho chips. Oscar was very excited as this is a food he hasn't had in a long time and even more excited he had a wish chip on his plate. For anyone that doesn't know, a wish chip folds over on itself like a semi circle shape rather than flat and circular! If you are lucky enough to come across one then you get to make a wish! I heard Oscar whispering to  himself "I wish I didn't have eczema". He then told us his wish and Charlie also said "I wish you didn't have eczema too Oscar". What a sweetie.
Before bed Oscar was itching like mad and asked me why his wish hadn't come true. Hearing this broke my heart but I had to think fast and told him that not all wishes can be granted straight away so he would need to continue to stay strong until his wish comes true.
Oscar found a wish chip in a bag of potato chips one weekend last year and wished we could go on holiday to Wanaka. The same day Andrew got a phone call for a job interview in Wanaka - Oscar's wish came true! Pure coincidence but Oscar remembers this so I guess in his wee mind wish chips really do grant wishes!
Oscar's body flared up a couple of days ago so he is still recovering from this, however his face is looking quite clear and the swelling around his eyes has gone down even more than last week. We are week four on methotrexate. The best way to describe how I'm feeling is you know when you have something excting to look forward to and time then seems to slow down considerably? It takes 6-8 weeks  for the drug to work effectively and although we are starting to see some clear skin we still have a long way to go. Oscar certainly isn't any less itchier. In fact as I write this at 11p.m he has managed an hours sleep and this round is an hour into itching. This will be our night on and off until around 4.30-5 when he finally falls into a deep sleep for a few hours.
On a happy note Oscar has managed four school days in a row. He went in late today but the last three days we have made it to school before the bell..this probably hasn't happened since February!
Right my eyes are getting blury. Time to get my wee man to sleep.

HEALING

It has been another rough week for Oscar with intense itching and burning 24/7. He hasn't been able to regulate his body temperature so one minute he is freezing cold wrapped up in towels and blankets then he's burning hot and sweating! He's still shedding lots of skin but I see this as a great sign of healing.Not many school days again and sadly Oscar didn't get to run the school cross country.
Oscar's blood tests came back fine so he is now on 7.5mgs of methotrexate. Side effects minimal this week. Today he woke up happy and played outside straight after breakfast, although he did get tired quickly. He had moments of quiet time inside then outside play then back to the couch for quiet time and itching. Sunday seems to be the day he gets knocked around a bit from the drugs. Although It has been lovely seeing him want to play outside today!
On a positive and exciting note we started seeing changes in Oscar's skin on Friday. His face looks white and his body has patches of white shining through. Every so often I look at Oscar and I think he looks so pale, like a wee ghost. We are just not used to seeing him white. Oscar's little brother Charlie said yesterday "Oscar you have skin now!" Oscar even said " I don't look like an eczema boy. I just look like a boy with scratches." We are so excited to see what the next few weeks bring and very relieved that the withdrawl of steroids hasn't been the nightmare I had prepared myself for. Three weeks steroid free, this is huge for us!! I am so proud of Oscar getting through the last month. He has been very sore and uncomfortable, I can't begin to imagine the itching and pain he's felt but I whole heartedly believe he is now over the worst. This means after five years of being on this journey we are finally on a path that will lead us to a healthy, happy steroid and drug free boy!

DAY 16 STEROID FREE

Last Saturday Oscar was very low in energy and didn't get out of bed until 10.30! The rest of the day was spent on the couch. He was very quiet and lethargic, this a side effect of methotrexate often called 'methotrexate fog'.On Sunday he was much happier thankfully. So far this is the only side effect that is visable to us. It has been a very long week for us though...

Day ten things started getting uncomfortable for Oscar. He has multiple areas on his body that are red and burning. He has had diarrhoea most of the week and his sleeping is erratic. A small doze in the evening then awake on and off from then on until four-five in the morning, finally sleeping for a few hours from then until eight ish. He is terribly frustrated and upset during the night with many outbursts and screams of frustration and discomfort. The sheets are covered in blood and shedding skin to the point of them needing to be brushed off a few times through the night. Oscar suggested we change them in the nights but I just don't have the energy to do this! Once daily is more than enough.
The nights have been saved with You Tube! About 3a.m Oscar is just exhausted but obviously can't sleep so watching something on the I.Pad distracts him for awhile. At night I want to reach for the steroid creams then as day breaks I'm proud I didn't cave into temptation. Oscar has only made it to school for a day and a half this week but on Friday he was finally in good spirits and quite happy.
Yesterday Oscar was very brave having his blood tests and didn't even get upset! If the test results are fine then the dose of methotrexate will increase next week by 2.5 m.gs.
It was a very long night for Oscar and Andrew lastnight as Oscar didn't fall asleep until 5a.m. He didn't get out of bed until 2p.m today, only because Andrew took him for a drive to get him out of the house. He asked Oscar if he wanted to go to Mitre 10 but the itchy wee fella just wanted to come home! He got out of the car and started to cry. I just can't imagine how he is feeling. So yet again we sit on the couch and I 'pat' Oscar while he watches a movie. Fingers crossed we start to see some positive changes over the next few weeks with his skin. It's heartbreaking watching him so miserable, uncomfortable and exhausted.

Tonight I showered Oscar and it felt like I was torturing him! He screamed and cried and said it stings and burns. I don't doubt this for a second! I finally got him all snuggled in bed and he started to cry telling me he couldn't go to school tomorrow as he hasn't done anything this weekend so he won't have anything to talk about at sharing time. I didn't know what to say to him! We discussed some things he could talk about and I thought all was good then he got upset again saying he was scared he would have to go running at school as it will hurt him. This from a little boy who loves school, loves running around and is very much an active 'outdoors' boy. Obviously he is very uncomfortable and
anxious at the moment. We are very thankful Oscar's school and teacher are very supportive with everything that is happening.
Getting Oscar out the door in the mornings for school is nearly impossible but I suspect it is a great
distraction for him and although he is exhausted I believe it's good for his well being to have a sense of normality, routine and for him to play with his friends...
Wish us luck getting out the door tomorrow morning, we will need it!

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