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Red Skin Syndrome: Learn to Heal Outside and Within

By Laura Dolgy (see bio below)

Although quite controversial, RSS or Red Skin Syndrome, also known as Topical Steroid Addiction (TSA) or Topical Steroid Withdrawal (TSW) is a real thing. This week, we take a deeper look at Red Skin Syndrome and what treatment options are available for those suffering with the condition. We also take a look at some of the work the TSW community is doing to help heal within as well.

If you’ve been suffering from RSS, TSA or TSW and have tried countless creams and treatments, we encourage you to read on. Please keep in mind that although these suggestions can help provide relief, we are in no way medical professionals. This condition requires medical intervention to avoid infection.

What is Red Skin Syndrome?

Red Skin Syndrome is a debilitating condition that arises after the misuse of topical steroids to treat a skin condition (like eczema). Topical Steroid Addiction is another term coined for this condition. Many people with Red Skin Syndrome condition experience extremely red, itchy, burning skin, which is both extremely painful and uncomfortable. The term Topical Steroid Withdrawal is used to define the symptoms that arise after discontinuing, reducing potency or reducing application of topical steroids.

Reported symptoms for Red Skin Syndrome, Topical Steroid Addiction and Topical Steroid Withdrawal are:

  • Red sunburnt-like skin
  • Visible flaking of skin
  • Oozing skin
  • Red sleeves (arms or legs become red and inflamed)
  • Body temperature changes
  • Hypersensitivity of skin to water
  • Enlarged lymph nodes
  • Hair loss
  • Insomnia
  • Fatigue
  • Depression, anxiety, and mood changes

This condition is an iatrogenic (an illness caused by medication, in this case, the misuse of a medication). While there is much research out there both denying and supporting topical steroids, the truth is that this condition is very real. However, like many other debilitating conditions, there are misconceptions of the illness as well as topical steroids in general.

If you think you or your child may have Red Skin Syndrom, I highly recommend you read Is it Just Eczema or Steroid Induced Eczema? Then definitely speak with your physician – we do not recommend weaning your child off steroids without medical help. If you have been on topical steroids for more than two weeks without a break, you are at a higher risk for topical addiction and it’s very important to talk to your doctor about either learning to use steroids correctly with the mandatory break between two week doses or weaning yourself off the medication all together.

We recommend you also read more about the risks of weaning yourself off topical steroids if you do in fact have Red Skin Syndrome. This post is a good read on the topic.

Dr. Peter Lio has been studying this condition for many years and has helped countless patients going through these symptoms. To learn more about what his thoughts are on topical steroids, as well as Red Skin Syndrome, make sure to check out our blog post: Topical Steroid Withdrawal: Myth vs. Reality.

Topical Steroid Withdrawal Treatment

Because Red Skin Syndrome is a debilitating condition, it’s important to seek medical advice as soon as possible. At the moment, there are no universally approved medications or methods of treatment that can quickly cure the symptoms of Red Skin Syndrome, yet your doctor can advise pain/itch management strategies, as well as appropriate medical treatments. Many doctors look at weaning a patient slowly off of topical steroids, so that their skin doesn’t immediately flare up.

There is a new treatment methodology which is receiving a lot of attention these days is called the Aron Regime. We had the pleasure of recently meeting Dr. Richard Aron, who created this new approach to treating both severe eczema and Red Skin Syndrome. While we are not big supporters of topical steroids, after learning about Dr. Aron’s success rate with helping patients with severe Red Skin Syndrome, we were intrigued. And it turns out many patients are able to use his method to safely and slowly reduce and discontinue their use of steroids all together. What’s the key to his approach? He treats the inflammation with a low dose topical steroid, dryness and skin barrier weakness with an emollient and the essential key to the treatment formula…..treating topical infection with a topical antibiotic. The second essential part is that he combines all three things – steroids, moisturizer and antibiotic – in a recipe that is compounded at a local pharmacy. Why does it work so well? Dr. Aron has said 70-100% of eczema patients have a topical infection of Staphylococcus Aureus on their skin. Steroids will not stop infection, so only treating with steroids is not the answer to healing eczema. The key really is treating the infection, inflammation and dryness together. Curious? Learn more on Dr. Aron’s website.

While working with your physician, here are some things you can try for added relief.

  1. Find and eliminate triggers – it is critical. In fact, I dare to say that this is the #1 thing anyone with eczema should be doing in order to find relief and possibly heal their eczema. If you don’t eliminate your triggers, your eczema will come back and you’ll have to continue using medications and skincare and all that jazz. Diet often plays a part in eczema and certain foods can be triggers. Try an eczema elimination diet to find your food triggers – always work with a nutritionist to make sure all proper nutrients remain in your diet, especially when nursing or when children are involved. There are a lot of other triggers that can be at play beyond food, learn more in Eczema 102: What Can Trigger Eczema?
  2. Relieve the itch-scratch cycle. Eczema sufferers are known to have an increased risk for staph infection, as indicated above, so keeping skin properly protected, as well as moisturized is key to healing from Red Skin Syndrome. To prevent scratching, consider eczema mittens and gloves. Keeping the hands covered with eczema gloves for adults or for children is essential to prevent scratching and causing an infection. Another idea is to soothe the itch during the day or overnight with Remedywear clothing for eczema. These garments are made with cooling fabric, as well as zinc oxide to reduce itching and inflammation.
  3. Keep skin well moisturized and hydrated. During Red Skin Syndrome or TSW, the skin becomes extremely dry and as such causes an itch-scratch cycle that can be quite unbearable. Opting for a natural eczema treatment that uses few ingredients is a great choice, as it will be sensitive enough for skin going through these symptoms. Some wonderful natural eczema treatments that can be used are this Organic Manuka Skin Soothing Cream, which contains only olive oil, beeswax, manuka oil, manuka honey, filtered water, and grape seed oil. Not only is this cream extremely moisturizing and can relieve the driest skin, but the manuka is also anti-bacterial and wound healing. Another topical steroid withdrawal treatment is using Chinese herbs to help relieve angry, red skin like with this Emily Skin Soothers for Red Eczema Rashes.This balm is a perfect treatment for weeping, crusty and red eczema. Not only does it relieve irritation but it also treats topical bacteria, yeast, and fungus. This treatment also uses natural ingredients like organic sunflower oil, beeswax, frankincense, red peony root, dictamnus root bark, and phellodendron bark.

Coping with Red Skin Syndrome

Aside from healing from the outside, it’s important to also focus on your inner health as well. Like mentioned previously, Red Skin Syndrome can affect mental health. Many of those suffering from this condition experience depression and anxiety as well. What turns out to be a physical journey, can manifest into both a mental and emotionally draining journey as well. This is why we recommend watching these incredible tips for living with the emotional challenges of eczema from a dear life coach friend of ours.

If you are suffering from depression or anxiety from this condition, it’s important to remember that you are not alone. Seeking help from both a medical doctor for your Red Skin Syndrome, as well as a therapist or psychologist is important, as the journey can be difficult.

Aside from seeing specialists, it’s also important to keep stress down to a minimum. Remember that stress is a huge trigger for eczema. For more guidance on how to heal both your skin and mind, make sure to check out our blog post: Eczema and Depression: How to Help your Skin and Mind.

And remember! YOU ARE NOT ALONE! There is quite a large community of TSW survivors and sufferers. Briana Banos, is part of that community and made this video to remind those suffering that you don’t need to be so hard on yourself:

Briana is currently filming a new documentary that focuses on the severity of this condition. Learn why she produced the above video and what she hopes to accomplish with her new documentary, Preventable: Protecting our Largest Organ.

“My motivation behind creating the music video stems from the inner battles we all face going through TSW. Our condition is way more than a surface issue. Our self worth is diminished, our demons magnified, and the loneliness we feel can consume our every thought. We become our worst critics and it’s difficult to face the world when all we can think most days is about how ugly and unlovable we are through Topical Steroid Withdrawal. I wanted to show our community that we are more than our skin and that we could tackle our fears. We need all the support we can get since this condition still isn’t recognized or taken seriously in many doctor’s offices.

My documentary, Preventable: Protecting our Largest Organ is about showcasing how this completely preventable suffering is tearing people’s lives apart. We deserve to be heard and acknowledged. I was able to interview individuals with TSW as well as doctors who were willing to open up about the dangers of over-prescribing topical steroids. It is running rampant in the medical community and I pray this project will open the medical community’s eyes as well as spark a change in how topical steroids are prescribed. The pain and loss needs to end. It is negligent. It is irresponsible. It has gone on long enough.”

Are you suffering with Red Skin Syndrome, Topical Steroid Addiction or Topical Steroid Withdrawal? Please tell us about your journey.

The post Red Skin Syndrome: Learn to Heal Outside and Within appeared first on itchylittleworld.com.

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Day 457 – Day 486: Month 16 Topical Steroid Withdrawal Redskin Syndrome

Well, month 16 was interesting.  I started using Eucerine Restoraderm on a regular basis, showers became quite enjoyable, and I visited Portland and loved it.  I still have crap skin on a regular cycle, but the crap is becoming less severe and the good is becoming more predictable and regular.  I feel like the restoraderm is helping heal the skin barrier.

SLEEP:  Sleep is better.  I slept brilliantly in Portland because I was on an air mattress and it was 50’s at night.  I didn’t sweat.  Now, at home in hot Texas on my pillow mattress I sweat and wake up itching.   On the whole, sleep is MUCH more consistent and regular.  I don’t feel as exhausted all the time.

HIVES:  Hives are popping up as of the end of this month.  They are uniform bumps and are itchy initially and then just take a while to go away.  They are only on the still damaged skin.  The skin that’s really red after the shower.  The skin that goes to hell when I flare.  I’m assuming this is a good sign…?

BURING/STINGING:  So, showers were moderately painful at the beginning of this month.  The water initially was fine and then once my pores opened up, it stung unless I used VERY warm water.  Then, once I got out, it stung for a good solid 15 minutes straight.   Once I started using the restoraderm, it got better.  The restoraderm STUNG when I used it for most of this month with decreasing intensity as the month went on.  It would sting when I rubbed it on and then as soon as I used the water it stopped.  Then using the lotion after caused the after sting time to shorten.  By the end of the month, the wash didn’t burn and the after sting was minimal.  So, definite improvement.

SWEATING:  Dude.  COME ON.  Sweating still stings and burns and itches like hell.  The surface area is definitely smaller!  It’s now only my neck, face, and a little on the shoulders… whereas before it was my whole body that was under a fire ant attack.  Living in the texas heat is hard.

CLOTHES:  I’ve started wearing…wait for it… SHORT SLEEVES AND TANK TOPS!  gasp.

Anyway… on with the pics.


Day 457

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Day 458


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TSHIRT!!!!



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First time in a tank top in a LONG time.  Went to the mall with my big girl!



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Day 462

I ate cookies at the mall.  Gluten and dairy free… but a lot of them.  Paid for it.  

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Day 463

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Day 465


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At the end of the day sometimes I have these flakes.  Super hot.



Day 466


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No makeup… mild skin… Lips are meh.



Day 468

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Legs have been painful.  Hurts to shave.




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AFTER SHOWER




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Few hours later.



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Day 469
Ate gluten free pretzels on the plane and paid for it…
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Day 470

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Day 472



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These kind of hives all the time.



Day 473

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I ate an apple while shopping and the juice on my hand gave me hives.  And irritated my lips.



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Dryness subsided a bit but the hot redness comes and goes.



Day 477


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Spent the whole day outside and in a tank top!  JOY!!



Day 482

My skin reacted crazy coming back home to the texas humidity, heat, and pollen…

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Peace Out Eczema

Oral Allergy Syndrome: Are Fruits and Veggies Giving you an Itchy Mouth?

Another great post from itchylittleworld.com – Natural remedies for eczema to soothe your itchy little world..

Spring is upon us and that means pollen allergies come out to play. If you’re one of many dealing with seasonal allergies, you’ll want to check out this post on Oral Allergy Syndrome…especially if you’ve ever noticed you have an itchy mouth this time of year.

Oral Allergy Syndrome

Copyright© National Jewish Health. All rights reserved. Used by permission.

What Is Oral Allergy Syndrome?

Oral Allergy syndrome, also known as Pollen Food Syndrome, is a mild allergic reaction to fruits and vegetables that have similar proteins found in certain pollens. Some of the most common foods that cause this type of syndrome can be found here:

Oral Allergy Syndrome Food List

Spring (trees)

  • Apples
  • Apricots
  • Carrots
  • Celery
  • Cherry
  • Kiwis

Summer (grasses)

  • Cantaloupe
  • Tomatoes
  • Watermelon
  • Honeydew

Fall (weeds)

  • Bananas
  • Zucchini
  • Cucumber
  • Peaches

What Are the Signs of Oral Allergy Syndrome aka Pollen Food Syndrome?

If you already experience allergic reactions to common pollen allergens AND are experiencing swelling of the mouth or lips, itchy roof of mouth, tongue, or throat, especially after eating raw food, then you might have Oral Allergy Syndrome. Keep in mind that reactions from Pollen Food Syndrome are always mild, so if your symptoms get worse then it’s always best consulting an allergist for further testing and treatment. And if you have difficulty breathing or experience an emergency, call 911 directly.

How to Treat Oral Allergy Syndrome

Although you can take oral antihistamine medications to relieve mild symptoms, avoiding raw foods that cross-react with your pollen allergies might be the best choice. Take another look at the list above to identify which foods cross react with each pollen. Usually it’s pretty easy to identify which raw food is triggering a reaction, but in case it’s not, you can always run an elimination diet with the help of your physician, so that you can figure out which foods you are reacting to. To learn more about elimination diets, check out our post: Our Eczema Elimination Diet Success (How You Can Do It Too!).

Lastly, if you can’t seem to avoid the fruit or veggies trigging your itchy mouth, you can always cook the food to degrade the protein that causes the allergy or peel off the skin of the fruit or veggie since many fruit and vegetable proteins are concentrated in the skin.

More About Seasonal Allergies:

For natural treatment of your allergies, make sure to check out our post: Top Natural Remedies for Allergies.

If you think pollen allergies may be causing your eczema to flare-up, which is very comment, check out this post: How To Determine if Pollen Is Making Your Skin Flare-Up: The Eczema and Allergies Connection.

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Oral Allergy Syndrome: Are Fruits and Veggies Giving you an Itchy Mouth? appeared first on itchylittleworld.com. Come read more about natural remedies for eczema!

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Your Nickel Rash Could Become Systemic Nickel Allergy Syndrome

By Mary Herrington (bio below) Before November, 2015 I had never heard of Systemic Nickel Allergy Syndrome. I had been experiencing allergic rashes to jewelry for years. and couldn’t wear anything but yellow gold. What I didn’t know was that a simple nickel allergic reaction on the outside of my body could also cause systemic issues inside […]
It’s an Itchy Little World

Call the Midwife episode featuring a character with Down’s Syndrome

 

Being a regular viewer of the BBC One drama ‘Call the Midwife’, I noticed last week during the preview for this weeks episode that there was to be a character with Down’s Syndrome appearing.

I was intrigued and a little apprehensive. Mainly though, I was excited that there was someone with Down’s Syndrome being represented on such a well loved show with high viewing figures. I wondered how well the part would be incorporated into the existing premise of the show and also what the storyline surrounding the character would be.  And bearing in mind when the show is set (early 1960’s) and the very different attitudes that existed in society towards people with any kind of disability, I wondered whether it may be too sad or upsetting to watch.

This is the second time an actor with Down’s syndrome has appeared in the show. The lovely Sarah Gordy starred a few years ago alongside an actor with cerebral palsy in a heartbreaking storyline which was a difficult watch but very well executed by the actors and writers involved.
Call the Midwife is a show that has proved time and time again not to be afraid to tackle difficult or sensitive issues of a time in the past and a time in society that many people alive can still remember today.
This weeks story explored some more of those difficult issues.  The young character with Down’s Syndrome (Reggie) is left alone early in the episode when his constant and protective mum dies suddenly.
He is taken in by his cousin (Fred) and his wife (Violet) and although things get off to a rocky start – Violet isn’t at all sure about having him around because they dont know anything about ‘people like him’.  Then, after Reggie is left alone and tries to cook his own breakfast he leaves the gas on and manages to get locked out.  What follows are the most heart-wrenching scenes of him being bullied in the street and called names before we see him finding his way back to the home he shared with his mum, banging on the door calling for her and not understanding why she isn’t coming to the door to let him in.
The options for Reggie are a stark reminder of the time – to stay with Fred and Violet his only relatives or to be placed in an institution (asylum) and locked away from society and the life, places and people he knows.  Out of sight and mind, alongside others with mental and physical disabilities.   After Fred visits the asylum he is thankfully appalled at the mere thought of sending Reggie there and we are then left wondering whether he will stay with Violet & Fred to become a regular character in the show (yes please shouts the nation!).
We see Reggie flourish helping Fred out in the garden at Nonnatus House but he is very aware that he doesn’t really fit in there as he wants the company of people his own age. In the end there is a happy outcome.  Reggie is found a place in a community village where he can live with other people his age whilst being a gardener – the job he has come to love while being with Fred.  And Violet, like the rest of us became very fond of Reggie – I really hope he makes another appearance in a future episode. Daniel Laurie, the actor who played him was just fantastic and has been shown an outpouring of love and appreciation on twitter and in reviews of the show.
All the way through the episode, even with it’s twists and turns and the sometimes difficult insight into life at the time for someone with a disability, I felt that we were in the hands of a writer who knew what they were doing with this character.  The way the story moved and the topics covered in such a short time made me realise quite early on that someone behind this episode had some life experience relating to the issues unfolding on the screen.  I was later informed that the writer of the episode, Andrea Gibb, has a sister with Down’s Syndrome which explained why it was all stitched together so well.
I loved the ending – the community village for people with disabilities, where Reggie could be independent after so many years living under his protective mother.  Where he could be around people his own age while doing a job he loved.  A nod to the future and a very forward thinking enterprise at the time and something that many people may not be aware of even existing, either then or now.  I know I wasn’t aware of these initiatives until both our grandmothers died a few years ago.  Our grans had both been nurses at some point in their lives and though they never knew each other, they both requested that donations at their funerals should be given to the Camphill Village Trust – a cause they had both supported for a long time, long before Ella was born.  The trust provides somewhere where all abilities of people can be supported to learn, live and grow within small supported communities across the country.
I am glad that Ella is growing up in a society that has come a long way since the ‘Call the Midwife’ era of poor social integration, institutions and a lack of support for adults with disabilities.  It doesn’t make being the mum of a child with a disability any easier though or stop me worrying about the future – It is one of my biggest fears, to not be around for either of my children.
I don’t know where Ella will want to be when she is older – I know I’d keep her at home forever if I could but knowing how independent and determined she is now then maybe assisted living or even living independently will be options for her future.  We will have to wait and see.  I do know that I want her to continue to be an active member of society and to be able to get a job doing something that she enjoys.

 

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Living with carpal tunnel syndrome: the facts

Carpal tunnel syndrome can cause major discomfort, here BMI Healthcare  discuss the number of ways you can deal with the condition.

Carpal tunnel syndrome (CTS) is a common condition, which can lead to pain in the hands and fingers. There are several causes of CTS, and the severity of the symptoms varies from person to person. In some cases, CTS will disappear by itself without requiring treatment. However, where the condition endures there are several options available to relieve discomfort.

What is CTS?

CTS is caused by an increase in pressure on the median nerve, the nerve which crosses the front of the wrist and controls movement and sensation in the hands. It is surrounded by the carpal tunnel – a tight passage that creates a pulley for the tendons, which allow your fingers to bend. The pressure caused by CTS can result in numbness, tingling and pain, particularly in the thumb, index and middle fingers. It can also bring about pins and needles, and sufferers often experience a dull ache in the hand and arm, as well as weakness in the thumb.

carpal-tunnel-syndrome-th

What causes CTS?

There are a number of reasons why people develop CTS. It is most commonly a result of repetitive movements, such as typing on a computer for long periods or playing a sport that requires using the wrist and hand. Wrist injuries and health issues such as rheumatoid arthritis and diabetes can also lead to CTS.

Non-surgical treatment of CTS

If you are experiencing mild or moderate symptoms of CTS, then there are a number of non-surgical ways to alleviate the condition. Sometimes, simply resting the affected hand or wrist for one or two weeks will allow the area to heal. Your health professional may also recommend a wrist support to hold your wrist in a neutral position and encourage recovery. Anti-inflammatory medication such as ibuprofen is often used to reduce swelling and discomfort, while in some cases corticosteroid injections are administered to provide temporary pain relief – although the symptoms often return.

There are also a number of physical exercises that your doctor can recommend to help strengthen your wrists and make them suppler. Some sufferers of CTS have found that practising yoga can further improve the condition[1].

If CTS is being caused by repetitive movements at work, such as typing, make sure to take regular breaks from your computer and keep stretching and exercising your wrist to prevent pain and stiffness.

Surgical treatment of CTS

Where non-surgical management of CTS doesn’t alleviate the symptoms or there is the possibility of nerve damage occurring, surgery may be the best option. A small incision will be made on the hand – usually under local anaesthetic – and the surgeon will cut the ligament that forms the roof of the carpal tunnel in order to relieve pressure on the median nerve. The whole procedure usually takes around 15 minutes and you can normally leave the hospital on the same day.

People suffering from mild forms of CTS should notice an improvement immediately following surgery, but those with more extreme cases or nerve damage may require more time for symptoms to be relieved. Your doctor will also advise you on physical hand and wrist exercises to aid your recovery.

Find out more about Carpal Tunnel Syndrome here, or you can make an online enquiry and a member of the BMI Healthcare team will be in touch.

[1]  http://www.everydayhealth.com/rheumatoid-arthritis/living-with/10-ways-to-ease-carpal-tunnel-pain/

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A World Without Down’s Syndrome?

Some of you may have noticed (many of you won’t care!) but it’s almost a year since I posted on here. Not something I’m proud of nor ashamed of but it has made it harder each time I approach the keyboard to know where to start with all of Rosie’s achievements (and mischiefs) in the past 12 months.So I’ve chosen the eve of a potentially groundbreaking short film to ease back in and write a quick post to help spread the word…Tomorrow (Wednesday 5th October 2016) BBC2 will be airing the eagerly awaited documentary from Sally Phillips, ‘A World Without Down’s Syndrome?’”Driven by the experience of raising her son Olly, who has Down’s syndrome, Sally explores some of the ethical implications of our national screening policy.”This could be an important documentary for something that is so so important to me when new parents are faced with a pre-natal diagnosis of Down’s syndrome. That something is, ‘choice’ and not just choice but INFORMED choice. This was one of the primary reason’s I started The Future’s Rosie and it continues to be the driving force behind why I (albeit sporadically now) blog and share personal moments of Rosie’s life on social media. This in itself isn’t easy as I question myself daily about whether it’s the right thing to do – do people really see why I do this or do they carry the opinion I’m exposing what would otherwise be personal family moments as a selfish need for attention? I can answer those that think the latter by saying in all honesty life would be much simpler and less hassle for me if I didn’t do it at all, I’d much rather live in a world where Rosie’s condition wasn’t something I felt I needed to share to show ‘it’s okay’. Too many people are afraid of the ‘unknown’ with Down’s syndrome – yes I was that person too once which is why I know it’s a very real problem. I’m not and never intend to be a part of any ‘PC brigade’ most DS advocates don’t either. For me it’s always been about educating in a non-patronising way and if that means sharing my daughters life to help the cause, then for now at least I’m still positive it’s the right thing to do – even if it is a mere drop in the ocean of change.I, along with so many other parents am very grateful that Sally, who is already in the public eye for professional reasons has used her platform to reach people on a much grander scale than someone like myself could ever dream of. This isn’t a small gesture either I would imagine it’s taken an awful lot of hard work, careful contemplation and courage. Sally is now exposing herself to inevitable debate and criticism which can’t be easy – all for the greater good of educating society to the ‘other’ side of ‘Down’s syndrome, a side that many healthcare professionals would have you believe doesn’t exist – and as you may or may not know I say that from first-hand experience. If you get the chance please do tune in to watch or set your record buttons! The more people that see this short film the better so please share and spread the word too! A world without Down’s syndrome would be a world without my baby, my beautiful girl, ‘Daddy’s little Princess’ and to that I say a resounding no thank you.http://www.bbc.co.uk/programmes/b07ycbj5

Read full article

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Potty Training a child with Down’s Syndrome – our journey

Potty training is a rite of passage and a skill that most children conquer between the ages of 2 and 4 years of age.  And, just like every other life skill children have to master, some get the hang of the potty straight away and for others, like us (and for lots of different reasons) it takes a little more time, perseverance, patience and understanding (and a lot more floor cleaning, wet washing and ‘never mind’ moments!).

Our potty training journey began around 2.5 years ago when Ella was around 3.  With Lucy arriving a few months before and life beginning to settle down again, we decided to give it a try.  Having never potty trained a child before, the task of potty training a child with additional needs suddenly seemed very daunting to me. I had no idea where to start but decided giving her some no nappy time to see how she did and to introduce the potty were both good places to start. Things didn’t go well, Ella didn’t ‘get it’ and I decided to wait a while before having another go.  I was a little disappointed but knew that there was no point continuing if she wasn’t ready.

We kept the potty around and I would sit her on it at bath time.  We had a couple of fluke wee’s on the potty (cue lots of praise, clapping, singing and dancing from us!) but mostly she would sit there for ages then wee as soon as we put her in the bath.  I didn’t push it any further during this time as knew she wasn’t aware enough of her bodily functions and wasn’t ready to try again.

When she was almost 4, she started pre-school and they were great with her.  They took her to the toilet at specific points in the day and when they changed her pull-up.  She became much more confident with the toileting process during this time.  She was able to put her own pull-up on (high five for independence!) and could follow the toileting trip with independently washing and drying her hands.  Looking back, I see I could have been better at following their lead and implementing a better toileting routine at home but for one reason and another, it never happened.

By now, Ella was in size 6 pull ups but was rapidly becoming too big for them.  I consulted our Health Visitor (HV), wanting some advice on how to approach potty training and also to find out if she could be referred to the local continence team.  She gave me a toileting diary to complete and said Ella could only be referred to the continence team based on what the diary showed or when she was 5 (free continence products in our area are only available to children 5 and over – it was 4 and over when we moved to the area but this has since changed to age 5 due to funding cuts). My mum (who is also a HV and has also had 3 children herself) was also a big source of advice and support for me too.

It was also becoming more difficult to change Ella out and about. Changing tables in public toilets were now much too small for her and having to take shoes and trousers off to change a pull-up standing on a public toilet floor is neither hygienic or nice.  I’m a great fan of the ‘changing places’ toilets that provide space, bigger areas to change older children and adults and also provide hoist facilities for those that need it.  These toilets are becoming more common but are still few and far between – the one I used at children’s museum Eureka was fab, clean and had lots of space. I stood Ella on the big changing table to get her changed rather than the floor (which although it looked spotless was still a toilet floor).

Picture courtesy of Eureka website

You can search for your nearest Changing Places toilet here, before you head out and about – I am sure there will be many more of them about in the near future.  Such a much needed and cost effective resource that more companies should be providing these facilities for their customers.

My biggest issue was the pull-ups – Ella was soon too big for the size 6 supermarket bought products.  The only place to find a bigger size was online from a continence product manufacturer.  And they weren’t cheap – tesco were around £4 for a pack of 34 pull ups and the size 7 packs of 16 pull ups came in at £5.90 each.  A big price difference!  We had no choice at that point than to buy the size 7 pull-ups as that was all that was available to us. You can see why there is pressure being put upon the major supermarket chains to produce nappies and pull-ups in bigger sizes at a more affordable price point.

 

I was told by the HV that even once referred to our continence team, they only provide nappies and do not provide pull-ups any longer, again due to budget cuts. As Ella had outgrown the nappies, the options that would be available to us as a free product from them would be a size XS adult pull-up (which I could almost squeeze into so way too big for Ella) or net knickers with pads.  Whichever product you got free from the service you would only be provided with 4 per day.

I had several issues with this:

  •  4 products a day is not enough when you want your child to be clean and dry (Ella had poor bladder control and was just constantly wet so I could change her 6-7+ times a day depending on how wet she was).  We were also battling with constant nappy rash due to her being wet all the time so I had to keep her as dry as possible.
  • Ella was able to put on her own pull-up and that had taken a lot of hard work – input from myself and her teachers at pre-school and also a lot of determination from Ella, who is very fiercely independent.  To then be told our option was a pad in a pair of net knickers was just not good enough – there was no way Ella would be able to do that by herself and all that hard work would be undone.  This was something the continence nurse just didn’t ‘get’ when I eventually spoke to her when Ella was referred prior to starting school (and that conversation led me to get so frustrated that I haven’t felt able to contact the service since).
  • I’m a nurse and have used net knickers and pads professionally with patients and know that they are not comfortable to wear, they are cumbersome (I wanted Ella to fit in with her peers as much as possible – wearing a pull-up is not ideal but having a bulging gusset just would not do).
  • And in all this, I want to protect and uphold my daughters dignity.  There is nothing dignified about net knickers and a pad for an adult let alone for a child and definitely not for long term use.

 

In the end, I felt quite unsupported by our local service and our HV and wondered how on earth I was ever going to get Ella out of pull-ups.  My goal of having her potty trained before she started reception didn’t happen although we had another try during the summer holidays of 2015.  I could see she was beginning to understand what the toilet/potty was for and she was able to tell us when she had done a poo (but not before).  All good signs that gave me hope she would one day be nappy free.

In February 2016 at half term, Lucy was 2 and 9 months and I decided it was time to try potty training her.  And at the same time I thought I could try Ella again – school had been keeping up the toileting process at specific points in the day.  She knew the process really well, we just needed to crack the control aspect and waiting until she was on the toilet/potty to do things.

 

 

Lucy was more than ready and with just two accidents on the first day was dry day and night from then on. Ella still wasn’t ready and obviously just didn’t have an idea of bladder control although she was much more aware of doing a poo and doing them on the potty.

School (who have been amazing and have never put any pressure on myself or Ella for her to be continent) continued their input with taking her at various times during the day and then during the summer term, Ella suddenly started asking to go and became drier for longer. The reports at the end of the day that she had asked to go or had done something when they took her to the toilet were becoming more frequent.

And now, at age 5 the size 7 pull-ups were getting too small – our only available option was the size 9 night time pull-up from the online supplier (they don’t do a size 8 pull-up product and couldn’t tell me why).  The size 9’s also come in a pack of 4 but are £10 more expensive than the size 7 4-pack.  There are also 16 less products per 4 pack (size 9’s come in packs of 14 and size 7’s packs of 18).  The cost of buying them was becoming ridiculous.

So, with it being the summer holidays again, I had had it in my head for a while to give things another go.  And I don’t know what made me choose this particular day but on a Thursday morning I got Ella dressed into knickers and told her ‘no more pull-ups’.  I didn’t know what to expect – to be honest I wasn’t expecting to get any further than our previous attempts but knew we had the time to try again.  I was also feeling much more confident about the whole situation having now potty trained Lucy, although I know we were lucky with how well she picked it all up.

Ella did really well with just a couple of accidents during the first day.  I could see she was beginning to understand the sensation of needing to have a wee and was having a fuller bladder as her control was better.  There were lots of chocolate buttons to keep things going but they had now turned into a reward rather than a bribe. I was better placed to know the signs of when she needed to go to help her as well.

I put her in a pull-up for bedtime but was astonished when she woke up the next morning completely dry and she did a big wee on the toilet (more chocolate buttons and a few happy tears from me).  We went to her cooking class the next morning (none of this staying in the house for a week malarkey!) and I did put her in a ‘dry like me’ pad just in case.  She was fine for the whole class but then had an accident at the end.  I subsequently found if she was wearing the absorbent pads she would wee instead of using the toilet so I ended up not using them again, although they were great during Lucy’s early post potty training days.  I just took plenty of spare clothes everywhere with us along with the potty and had plenty of toilet trips when out and about.  There were, of course plenty of days where she wasn’t as good and we had lots of accidents but on the whole she’s got the hang of it all very well this time.

 

She has now been dry day and night for 3 weeks.  So super proud of her and I am excited that she can go into Year 1 wearing knickers.

I’m pleased we didn’t rush things and although its taken 2.5 years from starting our potty training journey, she has got there in the end. As she always does.

I’ll hopefully get around to writing some hints and tips for potty training that have helped us along the way soon. For now, I’m off to iron and label next weeks school uniforms!

 

 

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