Eczema Free Forever™ Eczema Free Forever™

51 months TSW and a Belated Happy New Year!

During the horrific early months and years of TSW, the nights were so dark,  long, and lonely, and the days–though welcomed because of the light–were just as draining and frustrating, with no end in sight. Now here we are, four years later, and I’m amazed how fast the time has flown by!  Brian started TSW as a 10 year-old fifth grader, and he’s now a 14-year-old 9th grader.

                September 2013 just before TSW^          ^September 2017 51 months TSW

How’s he doing? Well, the cold, dry winter atmosphere has resulted in the usual dry skin; the added experience of being a freshman has contributed to increased stress scratching; and cat dander still results in itching, red patches, and allergy symptoms (benadryl to the rescue!). However, the last few TSW signs/symptoms I’ve been monitoring–red sleeves, oozing, elephant skin, profuse skin shedding–have not recurred this time. Now, of course he gets the skin flakes from the dry skin, but it doesn’t result in tablespoons of skin on the sheets in the morning. In fact, my arms are getting flabby because I’m no longer changing and shaking out sheets every day. I’ll exchange flab for TSW any day!

I posted the most recent progress photos in Pictures. Certainly, the skin is NOT perfect, nor will it probably ever be because dysfunctional skin is in his genes, thanks to me and my hubby. He also probably still has atopic dermatitis–which he chooses to manage without steroids and by not worrying about it. However, he is healthy and active and living life. What more can we ask for our child? 🙂

If you are just starting on this TSW journey, you are not alone. It’s a long, painful, difficult rollercoaster process, but for the health and welfare of your child and/or yourself, withdrawing ineffective topical steroids is essential for the body to heal. In addition, appropriate skin/wound care, nutritional, medical, and psychosocial support are needed to address the signs, symptoms, and sequelae of TSW. Find a knowledgeable or at least open-minded doctor who can support you during this process and communicate with others who understand what you’re going through.

You DO have hope for healing!

“I can do all things through Christ who strengthens me.” Philippians 4:13

Beyond the Itch

New Year, new you? You’re better off eating cake than pretending you don’t for a fortnight.

New year, new you? It’s one of the biggest myths perpetrated by, well, just about everyone and everything. The simple function of chronology doesn’t allow one to entirely reinvent oneself because the hand of a clock sweeps past an arbitrary time. The pressure to be better, try new things, be different, be a new improved, shinier version of yourself is self evidently ridiculous, but still we buy into it with our ‘resolutions’. I won’t drink, I’ll try and get to the gym more, I’m going to cycle to work and so on and so on. We as sensible, functioning adults in the world buy wholesale into this nonsense, even if we deny it we’re probably thinking at least one or two virtuous thoughts regarding the week ahead, so how on earth can we expect our children to do anything different?

Yes, much is spoken about the snowflake generation of post-millennials and much of the criticism is not without basis, but they are of course the first generation to have grown up with the internet as a ubiquitous tool and all the attendant social media pressure that accompanies and scrutinizes their every movement. When we were at school you may have had bullying, nastiness and so on but if someone wanted to insult and denigrate you they would have to call the house phone and explain to your parents what they wanted prior to getting in a few jabs.

Learning to love yourself is one of the truly great gifts you can give yourself and your child.

This time of year, one of the most crucial times in academic terms for many students – for Year 13 it is the last chance to decide whether to throw their hat in the ring with a university application before the closing date of 15th January, which is a huge and enormously difficult decision. [On my own blog (https://edducan.com) I’ve long spoken out about the relentless push for uni at schools, that being said if any one of your children are on the fence about whether to pursue uni or an apprenticeship then it may be worth getting an application in just so you have a marker there, better to make decisions from a position of strength rather than choosing the best of a bad bunch.] Psychologically this time of year feels like a tide change in terms of expectations. If the Autumn term is a giddy and unwelcome place holder after the long summer holidays and before the shorter Christmas one, then after the break, it is in the same year as the end of year exams and time to knuckle down, A Levels, GCSEs, Finals, SATs, whatever it is your child is facing, this is when it starts to get more real, only six months left to gain the ground lost in the previous four.

With all the extra pressure, real or imagined, that students are facing this time of year, the last thing they need to be submitting to is the clamouring of new year’s short lived aspirations. Real change, self betterment, aspiration are not dirty words and a sustained and lifelong desire to improve oneself and one’s circumstance is to be applauded and encouraged but sticking plaster solutions and pie crust ambition as a knee jerk reaction to hanging the new calendar is perhaps less healthy – indeed so many of these ambitions are linked to weight and the aesthetic it’s hard to not to think the goals, like the intent, are superficial and destined to quickly implode, and what message does that send? So, with that in mind, lean in to the old you, embrace cake and Prosecco and being okay with being who you are, your children will thank you even if your waistline doesn’t.

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Type 2 diabetes costing NHS £8.8bn each year

It is estimated that 600,000 people in the UK have Type 2 diabetes but have yet to be diagnosed. Including the undiagnosed, that’s around 4 million people in the UK alone. And since 1996, the number of people with diabetes has doubled making this one of the fastest growing diseases. And yet for many it is completely preventable.

Lack of awareness and screening have been partly to blame. And that’s not just lack of awareness amongst the general public. GPs need to be more attentive to the risk factors amongst their patient population including signs of high blood pressure, patients who are overweight or obese, as well as being more aware of susceptible groups such as men, young people and those of minority race or ethnicity. It is clear that the likelihood of developing Type 2 diabetes is increased by being overweight. And the problem is being felt across the NHS with costs associated with diabetes care reaching a staggering £8.8bn every single year. This isn’t sustainable long-term.

1 in 4 people are totally unaware they have diabetes; there needs to be more education around the condition and the association of co-morbidity; complications such as foot amputation, kidney disease, stroke and heart attack are just a few.

NHS England, Public Health England and Diabetes UK have launched the Healthier You: Diabetes Prevention Programme (NHS DPP) designed to reduce the risk of developing Type 2 diabetes in higher risk groups by offering dietary and exercise advise. UK  coverage, however isn’t likely for another 3 years, so clearly there is still a long way to go.

Diabetes is a serious condition and if it’s not diagnosed or poorly managed it can lead to significant health problems and ultimately death. Someone with diabetes is likely to have a reduced life expectancy too.

There are some symptoms to look out for, and anyone experiencing any of these should consult their GP:

  • feeling very thirsty
  • going to the toilet for a wee frequently especially at night
  • feeling very tired
  • loss of weight or muscle bulk
  • itching around the penis or vagina – frequent episodes of thrush
  • wounds, cuts and grazes healing slowly
  • blurred vision

For more information about all types of diabetes, take a look at the talkhealth Patient Journeys:

 

Diabetes Research

talkhealth will be launching a diabetes research survey to find out more from members and visitors about their experience of diabetes and knowledge around the condition. If you’d like to take part in this research, please comment below (we will post a link to the survey once it’s open) or email info@talkhealthpartnership.com

Sources:
http://www.diabetes.co.uk/
https://www.gov.uk/government/news/38-million-people-in-england-now-have-diabetes
https://www.physiciansweekly.com/assessing-gaps-in-diabetes-care 

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50% more people have hay fever this year

I think you’ll all agree, this year has been an incredible summer so far. I love England in the sun, it’s like being on holiday and the feeling of the sun warming the skin is one of my favourite things. But if that warm, dry weather brings with it clouds of pollen, spring and summer can be miserable for those who have hay fever.

I’ve noticed that just in my circle of friends and allergy community many of us have seen a worsening in symptoms, terrible hay fever and also loads of people getting it for either the first time or the first time in years.

A recent study revealed that there has indeed been quite a staggering rise.

Read ‘Spike in summer hay fever cases’,

The article begins by stating that, “Hay fever cases in England have reached their highest level so far this year, and are just under 50% higher compared to this time in 2016, the latest weekly figures from the Royal College of General Practitioners’ Research and Surveillance Centre show.”

That’s a 230% increase… but what’s the reason?

  1. Warmer drier weather for the seasons means more pollen
  2. Hay fever seasons seem to be extending, trees pollinate more for longer
  3. Very little rain to soak up the pollen – so it’s dry and stays on the surface to blow around
  4. More city landscaping, trapping pollen on hard surfaces
  5. Trends toward more decking and hard floors in gardens – pollen is absorbed into soil
  6. Council planting strategies favour high pollen trees over fruiting (less mess to clear up)
  7. Five year trends do see spikes in symptom cycles like this
  8. And I could go on…

I plan to produce a blog about why this is happening shortly, the article above, whilst intetesting, doesn’t offer any insight into why this phenomon is occuring. If you’re like me, you want answers, you want to understand why, so you can at least reassure yourself you’re not to blame. Your super immune system is just over reacting again in a quite spectacular way. It’s being quite clever really so do be proud of your body. It’s trying to help you out, it’s just failing rather miserably to do so…

I learnt loads about this last year when I was on Country File Diaries in a hay fever special. You can read the top 20 things I learnt here in 20 things you can do to reduce your hay fever...

So there could be many factors, leaving us still with no real cure or treatment. Anti histamines and sprays and eye drops do help but they only take the edge off the symptoms.

For more help, tips and ideas to help you reduce your symptoms, please read my other hay fever blogs here.
For those who crave an active outdoor lifestyle it’s time to man up and get out there. Go prepared and take whatever precautions you can because this super pollen is nasty and it’s out to get you!

Please also listen to me on 5 Live talking to Sam Walker and Chris Warburton on Sunday Breakfast about this very phenomenon.

Has your hay fever been worse? or have you or your child just got it for the first time this year?

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39 months TSW and Happy New Year!

Darth Brian ready to take on the big hill! 1st snow 1/2/2017

1/8/17               Darth Brian ready to take on the big hill!   (wearing sunglasses and breathe-easy ski mask)       1st snow of 2017 

Let it snow, let it snow, let it snow!

The start of 2017 finds us in a much better place than this time last year, when Brian was recovering from eczema herpeticum and a TSW flare (see post), and in a much, much better place since he started TSW at the age of 10.

January 6, 2017 marked the 1189th day–3 years and 3 months–since we stopped using topical steroids on Brian for eczema because they had ceased to keep the eczema under control. (Read About it). Despite the long, exceedingly difficult journey and cruel rollercoaster nature of Topical Steroid Withdrawal (TSW), it was the right choice for Brian’s skin and health.

Today, he’s a healthy, thriving 8th grader, and his skin is stronger and in better condition than it was when he was using topical steroids. NOT perfect, but better. After changing and shaking sheets daily for over 2 1/2 years, I enjoyed a 3-month break from this ritual (Aug.-Nov. 2016) when shedding was imperceptible, almost normal. Eczema scratching comes and goes but is no longer debilitating (Log 1/8/17 update). He can sleep at night and wake up for school in the morning with minimal scratching. No more hollering for an ice pack in the middle of the night, though he does ask me to scratch his back for old time’s sake. With the late Fall and Winter weather, I’ve noticed increased dryness and some mild flaking that didn’t start until mid-December. Elephant skin, ooze, and red sleeves have not reared their ugly heads, but there are a few cold months left, and these signs of residual TSW may yet resurface and disrupt our lives once again.

Of course, nothing–especially skin–is perfect, and acceptance of whatever state we’re in brings a sense of peace, but we praise God that our lives no longer revolve 100% around his skin. Right now, we are comfortably managing eczema and are thankful for how far Brian’s come. TSW has shown us we can handle and get through whatever comes our way. And so can you. We are never alone. Stay strong; have hope; keep the faith!

“When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through fire, you will not be burned; the flames will not set you ablaze. For I am the LORD, your God, the Holy One of Israel, your Savior.”  Isaiah 43:2-3

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SKIN/SCRATCH MANAGEMENT at 39 months TSW (links to management for 5, 10, and 18.5 months TSW also follow)

8th grade Cross Country 10/26/2016

Warmer days……8th grade Cross Country 10/26/2016

Brian’s current Skin/Scratch regimen is similar to that posted 9/16/2016, with changes reflecting whatever his skin requires at the particular time. Goals remain the same, but interventions may change as weather and skin needs change. The following regimen works for Brian. However, people in various stages of TSW may require different treatments, and it is important to test or know what you may or may not react to. Every person is different; you need to find what works best for you.

Goals:

  • To keep the skin clean, hydrated, and infection-free
  • To utilize effective itch/scratch management to prevent breaks in the skin (to prevent infection)
  • To support the body/skin health and healing by taking needed vitamins/supplements, monitoring sugar and dairy intake, and getting proper nutrition/hydration, exercise, and sleep, and utilizing stress management and deep breathing techniques

Treatment/Skin Care Routine: At least once daily shower, followed by application of organic coconut oil (face, extremities, trunk). Hot summer months require a “lighter” moisturizer or no moisturizer at all. During winter, can use thicker aquaphor or petroleum jelly for nose, cheeks, ears, and parts exposed to cold.

Sunscreen: Organic, virgin coconut oil

Infection control measures:

  • Take apple cider vinegar (ACV) bath (10 minute soak) or 20 minutes in microsilk tub bath 1-3 times per week, followed by shower/rinse off, and moisturize with coconut oil or nothing. More frequently if flaring.
  • Spray sovereign silver, as needed, on any open areas or broken skin.
  • If these conservative measures fail, and skin/itch don’t improve, consult health care provider.
  • Change sheets daily.

Vitamins/Supplements/Diet: Vitamin D3, Omega 3 fish oil capsules, recommended by pediatrician;  pantothenic acid, DAO histaminase, B complex, culturelle probiotic–supplements prescribed by naturopath to address methylation issues (difficulty processing histamines and sensitivity to eggs, dairy, and fruit-sugar combos) and provide gut support; try to monitor dairy, egg, and processed sugar intake 

Itch/scratch management: Generally 0/5 to 2-/5 scratching. Some short episodes of   3-/5 with fatigue or stress or who knows what. (See log for scratch scale.) Cut and file fingernails short. Deep breathing/relaxation techniques, acupressure points, ice packs, distraction. He will use benadryl liquid as needed but hasn’t used it in months.

If needed for >3/5 scratching: Dr. Wang’s purple eczema ointment, The Home Apothecary’s lemongrass balm, moisturizer (e.g., coconut oil), or sovereign silver gel/spray

Remaining TSW symptoms: (compare to March 2, 2014 at five months TSW and 28 months TSW. )

  • Shedding—As in past 2 years, progressive decrease in visible, measurable shedding from end of June to Aug. This year it was June to barely perceptible in Nov. 2016. Restarted slightly measurable shedding (<1/16 teaspoon) around mid-December, from increased skin dryness. (Is this still TSW or “just” eczema? I’m leaning toward eczema))
  • Elephant skin—Not evident since this time last year January 2016
  • Red sleeves, edema—None noted in upper or lower extremities since January/February 2016 (feet) 
  • Ooze smell—None since June 2016

Skin quality:

–Back is soft, smooth but has intermittent eruptions of erythematous papules scattered on posterior scapulae and low back–haven’t pinpointed the trigger

–Shoulders, elbows, knees textured with scattered hypo-pigmentation from scratching on tan skin. Dry but no obvious flaking. Sometimes erythema with neck scratching

–Still with periodic small breaks in skin on shoulders, elbows, hands, or knees from scratching/picking; skin fluctuates from soft and smooth to pebble grain

–Able to play in the sun, heat, and snow without itchfests

Function: Sleeping through the night (roughly 10:30p-7am) and staying an active 8th grader.

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Click these links to see Brian’s treatment/regimens at 5 months10 months and 18.5 months TSW


Beyond the Itch

2017 New Year Resolutions… taking control!

This year I’m going to get my focus back and find my caring side. For too long I’ve been in denial, that I already cut out so many things so why shouldn’t I indulge in freefrom processed foods as a treat and enjoy alcohol when I feel like it. I don’t need to watch my weight and I already cut out dairy, wheat, soya, nuts and celery and tomato for health reasons so why limit myself further?

Well I’ve come to a kind of light bulb moment. I have to do this. For myself. For my sanity. Because I KNOW that the above things irritate my skin. I haven’t wanted to face the undeniable truth that my skin will always be dry, parched, thickened, itchy and damaged if I continue to ignore all the signs. But there you have it. I’m going to do this. I may not succeed 100% first time, I may have setbacks and slip-ups, but I have a plan and I am going to stick to it.

newyearnewme

  1. Cut out ALL processed foods for one month
  2. So my first new year resolution is to see if, just for a month, I can completely cut out processed foods. I don’t know why these foods irritate my skin but the do. Especially gluten fee bread. I can’t work out whether it’s stabilisers, emulsifiers, preservatives or additives but something has a very bad effect on my skin.

    I’ve blogged about this a lot, and there are a few cheat products that are processed but that I let sneak through the net e.g. rice cakes, oat cakes, plant milks, humous etc. Products that are made from a few very simple ingredients are allowed.

    And it’s day one of this regime and I already feel so much calmer. My skin is only slightly itching. If I can do it for a day, I can do it for a week. If I can do it for a week I can do it for a month. And if it helps it will soon become habit.

  3. Cut down on alcohol consumption
  4. I know that alcohol makes my skin dehydrated. Most alcohol also makes my face flush, a side effect of using Protopic on my skin. But I enjoy a drink. My only vice, but I know that often I drink too much, especially red wine. I enjoy drinking it. I have so few vices so I’ve been telling myself, ‘You can’t be good all the time and avoid EVERYTHING bad can you?’ But I would enjoy having clear skin, sleeping well, itching less and not having such dry skin far more than drinking wine.

    It’s my birthday this month so I’m being realistic. I am not setting myself a target I cannot keep, setting myself up to fail miserably at the first hurdle. I will enjoy a drink on my birthday and I probably will have some at weekends, But I AM going to drink less.

    And whilst it may seen horribly unfair, if you want better skin you need to start learning what’s important, because little slip ups on a regular basis will prevent you from EVER getting the skin you dream of.

    I just need to be strong, because all too often I intend to drink soft drinks but find myself almost pushed, persuaded and lured back to the booze by what I call the ‘beer bullies’. If I ask for a soft drink, just give me one please. I mean it. It shouldn’t matter what someone drinks so please, respect my wishes and help me with this please everyone 🙂

  5. Get my skin out and proud
  6. I have also decided that if my skin is bad I’m not going to be ashamed of it any more. It’s my skin, it’s where I live, it’s what holds my fragile body together. I don’t have another one. Just this one. So if you don’t like my skin, please look the other way and don’t comment. I am also going to be kinder to my skin, be prepared and moisturise more. I am going to experiment with natural skincare products to see if I can find things that soothe and heal my skin better than the industrial Epaderm I rely on. I’m going to be kinder to my skin.

  7. Practise Mindfulness
  8. This is something I’ve been thinking about for a while and I have looked into it, in a very blase kind of way so far. But if stress and depression can affect my skin in a very negative way, can the opposite thinking have a positive effect? I’m hoping it will because we all know how powerful the mind is. For instance, can I choose not to scratch? Can I use the power of positive thinking to reinforce my mind to ignore the itch impulse? Can learning mindfulness bring me an inner peace that will help me to cope with stress and avoid getting uptight, worrying so much and over thinking?

  9. Exercise more and get to a healthier place
  10. I have booked myself onto a yoga course in my lunch breaks for 12 weeks at a local gym near where I work, but this is just the beginning of my plan. I want to try to do yoga twice a week, start running at least twice a week and keep up my regular walking with my good friend at work. Having a healthy body is so important for healthy skin. It’s almost as if the sweating helps to purge the body of impurities and irritants. I do get a lot of pain when I sweat if my eczema is bad but I just have to work through this, get into the shower quick and it will get easier. I am hoping this will also help my asthma, which has also been awful lately; a combination of dust, warm houses, central heating and the wrong foods have all contributed, as well as a lingering throat infection that went to my chest. I think that is finally almost gone (famoust last words).

    I’ve also just done my first pre-work 5k run on my first day back in the office. Start as you mean to go on… hopefully this will be a weekly run so I’ll be so fit you won’t see me for dust. Except I’m also allergic to dust 🙂

I am also planning an blog overhaul to watch out for the new look What allergy.com very soon. I have already got my blogging mojo back so look out for more regular blogging. I have so missed this… it’s been too long but I’m back on this now.

I also have a few books planned for you so watch out for these too once the new blog is in place.

What are your New Year Resolutions?

talkhealth Blog

Welcome to a New Year! It’s time for New Skin!

Wow – we can’t believe it’s already 2017! We absolutely love ringing in the New Year and want to share that moment with our followers. If you had it tough last year, we’re here to remind you that the New Year not only brings good luck, but new opportunities. This month, we’re focusing on a […]
It’s an Itchy Little World